Joyce Frieden

WASHINGTON — Drugs like BiDil, which target a particular racial or ethnic group, do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure this drug would not have benefited other groups?”

The original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) seemed to show that only African Americans clearly benefited from the drug, but “it was a relatively modest-sized study, and there could very well have been some benefit in others,” he said. “Are we sure this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

With responders lumped into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said, noting it would be preferable to ask why the drug works for some and not for others. “What specific DNA variants are responsible for the variation in response? Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this murky and potentially misleading and damaging proxy called race, and pretend we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted.

“First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Most of the variation in the human genome over the last 100,000 years “relates to the ways in which those genes were spread as those people migrated out of Africa to other parts of the world,” he said. And although genomics may play a role in the reasons for health disparities, “it is almost always in concert with environmental factors.”

When new mutations have occurred, for the most part they appear and then disappear, said Dr. Collins. One exception to that, however, is any mutation that gave people a selective advantage. Skin color is an example.

“If you're dark skinned in a northern climate where there's not as much sun exposure, you're likely to get rickets, and someone with rickets will have a difficult time in childbirth. If you have light skin at the equator, you're going to end up with a very high risk of skin cancer,” he said. The way in which lighter-skinned people evolved from their starting point as black Africans just proves that “we white people are actually mutants,” he said.

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.” If medical researchers want to know how genetic variation affects predisposition to illness, “we're going to need more data, and the good news is, in another 2 or 3 years, we're going to have a lot more data on this subject and will be much more poised to do something about it,” he said.

Information on the International HapMap Project can be found online at www.hapmap.org

WASHINGTON — Drugs like BiDil, which target a particular racial or ethnic group, do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure this drug would not have benefited other groups?”

The original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) seemed to show that only African Americans clearly benefited from the drug, but “it was a relatively modest-sized study, and there could very well have been some benefit in others,” he said. “Are we sure this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

With responders lumped into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said, noting it would be preferable to ask why the drug works for some and not for others. “What specific DNA variants are responsible for the variation in response? Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this murky and potentially misleading and damaging proxy called race, and pretend we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted.

“First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Most of the variation in the human genome over the last 100,000 years “relates to the ways in which those genes were spread as those people migrated out of Africa to other parts of the world,” he said. And although genomics may play a role in the reasons for health disparities, “it is almost always in concert with environmental factors.”

When new mutations have occurred, for the most part they appear and then disappear, said Dr. Collins. One exception to that, however, is any mutation that gave people a selective advantage. Skin color is an example.

“If you're dark skinned in a northern climate where there's not as much sun exposure, you're likely to get rickets, and someone with rickets will have a difficult time in childbirth. If you have light skin at the equator, you're going to end up with a very high risk of skin cancer,” he said. The way in which lighter-skinned people evolved from their starting point as black Africans just proves that “we white people are actually mutants,” he said.

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.” If medical researchers want to know how genetic variation affects predisposition to illness, “we're going to need more data, and the good news is, in another 2 or 3 years, we're going to have a lot more data on this subject and will be much more poised to do something about it,” he said.

Information on the International HapMap Project can be found online at www.hapmap.org

WASHINGTON — Drugs like BiDil, which target a particular racial or ethnic group, do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure this drug would not have benefited other groups?”

The original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) seemed to show that only African Americans clearly benefited from the drug, but “it was a relatively modest-sized study, and there could very well have been some benefit in others,” he said. “Are we sure this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

With responders lumped into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said, noting it would be preferable to ask why the drug works for some and not for others. “What specific DNA variants are responsible for the variation in response? Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this murky and potentially misleading and damaging proxy called race, and pretend we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted.

“First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Most of the variation in the human genome over the last 100,000 years “relates to the ways in which those genes were spread as those people migrated out of Africa to other parts of the world,” he said. And although genomics may play a role in the reasons for health disparities, “it is almost always in concert with environmental factors.”

When new mutations have occurred, for the most part they appear and then disappear, said Dr. Collins. One exception to that, however, is any mutation that gave people a selective advantage. Skin color is an example.

“If you're dark skinned in a northern climate where there's not as much sun exposure, you're likely to get rickets, and someone with rickets will have a difficult time in childbirth. If you have light skin at the equator, you're going to end up with a very high risk of skin cancer,” he said. The way in which lighter-skinned people evolved from their starting point as black Africans just proves that “we white people are actually mutants,” he said.

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.” If medical researchers want to know how genetic variation affects predisposition to illness, “we're going to need more data, and the good news is, in another 2 or 3 years, we're going to have a lot more data on this subject and will be much more poised to do something about it,” he said.

Information on the International HapMap Project can be found online at www.hapmap.org

WASHINGTON — Electronic health records make good business sense for physicians, even those in small- and medium-sized medical groups, Stefanos Zenios, Ph.D., said at a health care congress sponsored by the Wall Street Journal and CNBC.

“There is a perception that there's no business case for adopting electronic health records in small or midsize medical groups,” said Dr. Zenios, professor of operations, information, and technology at Stanford (Calif.) University. However, that's not the case if one considers the economic data carefully, he said.

Like any other investment, electronic health records (EHRs) have both short-term and long-term costs. “Initial costs are $43,000 per full-time equivalent [FTE], including software and hardware and productivity losses,” he said, citing a recent study (Health Affairs 2005;24:1127–37). However, the same study also showed an $18,000 increase in revenue per FTE due to better billing and better follow-up on patients, he added. And by the fourth year, the return on investment is 31%.

“If you would take all the money you are spending to install and maintain the system, and put it in the bank, on average you would be making 5%–7% [in interest]. Even if you put it in the stock market in the 1990s, you would be making 10% on that money … not even the venture capitalists can see returns as high [as 31%]. So that's a compelling financial case, which primarily comes from better billing,” he said.

Better data mining is another way practices can increase revenue. For instance, one 26-member cardiology group in North Carolina used EHR data to look for patients at risk of sudden coronary death. Out of 80,000 patient records, they found nearly 300 patients who were candidates for primary prevention and more than 1,400 patients who were candidates for secondary prevention.

This then translated into more than 1,300 consultations, 900 echocardiograms, 500 T-wave tests, and 500 implantable cardioverter defibrillator implantations. That had a clinical impact of averting 37 sudden cardiac deaths each year, and a financial impact of $2.8 million in additional revenue to the practice, Dr. Zenios said.

Finally, being an early adopter of EHRs can put practices at a competitive advantage. Dr Zenios cited another study showing that EHRs could bring a total estimated savings to the entire health care system of $245 billion.

Of that, an estimated $23 billion would come in the form of fewer physician visits (Health Affairs 2005;24:1103–17).

In the face of this possible reduction in business, if all small and medium-sized medical practices invested in EHRs, no one's share of the shrinking outpatient market would change, Dr. Zenios said. But if only some groups invested in them, “they would gain an advantage” because of increases in practice efficiency, while their competitors' market share will go down. “To protect your business, it may make sense to have an EHR.”

Like any other investment, installing an EHR is not risk-free, Dr. Zenios warned. He offered several suggestions to help physicians better manage the risks involved:

▸ Redundancy, redundancy, redundancy.“People put new a new information technology system in place, and the next morning they turn off their previous system,” he said. “It doesn't make sense. It's costly to have both systems in place, but that protects you. For 3–6 months, there has to be some redundancy.”

▸ Assess the ability of the system to improve your billing processes. For example, the system may be able to flag procedures for which physicians are routinely underbilling and bill them at the proper level.

▸ Assess the system's capability to take advantage of all the data that are going to become available. “Some innovative practices are using this capability to deliver better quality of care to their patients and improve their revenue,” he said.

WASHINGTON — Electronic health records make good business sense for physicians, even those in small- and medium-sized medical groups, Stefanos Zenios, Ph.D., said at a health care congress sponsored by the Wall Street Journal and CNBC.

“There is a perception that there's no business case for adopting electronic health records in small or midsize medical groups,” said Dr. Zenios, professor of operations, information, and technology at Stanford (Calif.) University. However, that's not the case if one considers the economic data carefully, he said.

Like any other investment, electronic health records (EHRs) have both short-term and long-term costs. “Initial costs are $43,000 per full-time equivalent [FTE], including software and hardware and productivity losses,” he said, citing a recent study (Health Affairs 2005;24:1127–37). However, the same study also showed an $18,000 increase in revenue per FTE due to better billing and better follow-up on patients, he added. And by the fourth year, the return on investment is 31%.

“If you would take all the money you are spending to install and maintain the system, and put it in the bank, on average you would be making 5%–7% [in interest]. Even if you put it in the stock market in the 1990s, you would be making 10% on that money … not even the venture capitalists can see returns as high [as 31%]. So that's a compelling financial case, which primarily comes from better billing,” he said.

Better data mining is another way practices can increase revenue. For instance, one 26-member cardiology group in North Carolina used EHR data to look for patients at risk of sudden coronary death. Out of 80,000 patient records, they found nearly 300 patients who were candidates for primary prevention and more than 1,400 patients who were candidates for secondary prevention.

This then translated into more than 1,300 consultations, 900 echocardiograms, 500 T-wave tests, and 500 implantable cardioverter defibrillator implantations. That had a clinical impact of averting 37 sudden cardiac deaths each year, and a financial impact of $2.8 million in additional revenue to the practice, Dr. Zenios said.

Finally, being an early adopter of EHRs can put practices at a competitive advantage. Dr Zenios cited another study showing that EHRs could bring a total estimated savings to the entire health care system of $245 billion.

Of that, an estimated $23 billion would come in the form of fewer physician visits (Health Affairs 2005;24:1103–17).

In the face of this possible reduction in business, if all small and medium-sized medical practices invested in EHRs, no one's share of the shrinking outpatient market would change, Dr. Zenios said. But if only some groups invested in them, “they would gain an advantage” because of increases in practice efficiency, while their competitors' market share will go down. “To protect your business, it may make sense to have an EHR.”

Like any other investment, installing an EHR is not risk-free, Dr. Zenios warned. He offered several suggestions to help physicians better manage the risks involved:

▸ Redundancy, redundancy, redundancy.“People put new a new information technology system in place, and the next morning they turn off their previous system,” he said. “It doesn't make sense. It's costly to have both systems in place, but that protects you. For 3–6 months, there has to be some redundancy.”

▸ Assess the ability of the system to improve your billing processes. For example, the system may be able to flag procedures for which physicians are routinely underbilling and bill them at the proper level.

▸ Assess the system's capability to take advantage of all the data that are going to become available. “Some innovative practices are using this capability to deliver better quality of care to their patients and improve their revenue,” he said.

WASHINGTON — Electronic health records make good business sense for physicians, even those in small- and medium-sized medical groups, Stefanos Zenios, Ph.D., said at a health care congress sponsored by the Wall Street Journal and CNBC.

“There is a perception that there's no business case for adopting electronic health records in small or midsize medical groups,” said Dr. Zenios, professor of operations, information, and technology at Stanford (Calif.) University. However, that's not the case if one considers the economic data carefully, he said.

Like any other investment, electronic health records (EHRs) have both short-term and long-term costs. “Initial costs are $43,000 per full-time equivalent [FTE], including software and hardware and productivity losses,” he said, citing a recent study (Health Affairs 2005;24:1127–37). However, the same study also showed an $18,000 increase in revenue per FTE due to better billing and better follow-up on patients, he added. And by the fourth year, the return on investment is 31%.

“If you would take all the money you are spending to install and maintain the system, and put it in the bank, on average you would be making 5%–7% [in interest]. Even if you put it in the stock market in the 1990s, you would be making 10% on that money … not even the venture capitalists can see returns as high [as 31%]. So that's a compelling financial case, which primarily comes from better billing,” he said.

Better data mining is another way practices can increase revenue. For instance, one 26-member cardiology group in North Carolina used EHR data to look for patients at risk of sudden coronary death. Out of 80,000 patient records, they found nearly 300 patients who were candidates for primary prevention and more than 1,400 patients who were candidates for secondary prevention.

This then translated into more than 1,300 consultations, 900 echocardiograms, 500 T-wave tests, and 500 implantable cardioverter defibrillator implantations. That had a clinical impact of averting 37 sudden cardiac deaths each year, and a financial impact of $2.8 million in additional revenue to the practice, Dr. Zenios said.

Finally, being an early adopter of EHRs can put practices at a competitive advantage. Dr Zenios cited another study showing that EHRs could bring a total estimated savings to the entire health care system of $245 billion.

Of that, an estimated $23 billion would come in the form of fewer physician visits (Health Affairs 2005;24:1103–17).

In the face of this possible reduction in business, if all small and medium-sized medical practices invested in EHRs, no one's share of the shrinking outpatient market would change, Dr. Zenios said. But if only some groups invested in them, “they would gain an advantage” because of increases in practice efficiency, while their competitors' market share will go down. “To protect your business, it may make sense to have an EHR.”

Like any other investment, installing an EHR is not risk-free, Dr. Zenios warned. He offered several suggestions to help physicians better manage the risks involved:

▸ Redundancy, redundancy, redundancy.“People put new a new information technology system in place, and the next morning they turn off their previous system,” he said. “It doesn't make sense. It's costly to have both systems in place, but that protects you. For 3–6 months, there has to be some redundancy.”

▸ Assess the ability of the system to improve your billing processes. For example, the system may be able to flag procedures for which physicians are routinely underbilling and bill them at the proper level.

▸ Assess the system's capability to take advantage of all the data that are going to become available. “Some innovative practices are using this capability to deliver better quality of care to their patients and improve their revenue,” he said.

WASHINGTON — Caregivers of inner-city children with asthma want better information about managing the side effects of asthma medications and practical ways to reduce asthma triggers, Beverley Russell, Ph.D., said at a meeting sponsored by the Office of Minority Health and the Department of Health and Human Services.

Dr. Russell, who is director of health professions education at the Center for Community Health Education, Research and Service in Boston, conducted four focus groups, each with 12 participants.

One group included caregivers of children with asthma, another included caregivers of children without asthma, another included physicians, and another included allied health professionals.

“In 2003, the asthma hospitalization rates for Latino and black children in Boston were five times that for whites and three times that for Asians,” said Dr. Russell.

“Our project wanted to know what experience folks in the community were having.”

Three major themes emerged, she said.

One was that there was insufficient information given to caregivers to help them effectively manage children with asthma.

Dr. Russell quoted one caregiver as saying, “I wish my provider would have looked more at side effects. … My child has a racing heart, hyperactivity, and [trouble sitting] still.”

Focus group results also underlined that “providers need to know about the conditions people live in and the challenges they face,” Dr. Russell said.

“That would help providers be more realistic in devising treatment plans and interventions.”

For instance, a provider suggested to one parent that she get a nonallergic mattress cover for her bed, and the woman replied, “'The springs in my mattress keep popping out,'” Dr. Russell said. “Prescribing something like that just doesn't quite fit.” Another provider advised a caregiver to pull up the carpet in the home, but the person lived in a public housing project.

Participants also talked about the environment of the inner city. “We are surrounded by the gas, the smell, the smoke from cars, and the pollution,” she said. “Those living in public housing talked about carpets, dust, mold, insects, pets, cleaning materials the housing people use, and also tobacco smoke.”

One mother lived next to an auto body shop and complained that whenever the shop was painting cars, her daughter asked for a treatment, because even with the windows closed, the fumes penetrated the home and triggered an asthma attack.

Caregivers suggested that providers put more emphasis on the difference between treating acute symptoms and controlling asthma over time.

Caregivers would prefer a provider who offers asthma education and ongoing monitoring, Dr. Russell noted. “One parent boasted that she had someone who did home visits, so the person could see where they live and come up with something that makes sense and fits for them in their environment.”

In the two focus groups for health professionals, providers were aware of many of the caregivers' frustrations but said that they often didn't have as much time as they would like to deal with these issues, Dr. Russell said in an interview.

WASHINGTON — Caregivers of inner-city children with asthma want better information about managing the side effects of asthma medications and practical ways to reduce asthma triggers, Beverley Russell, Ph.D., said at a meeting sponsored by the Office of Minority Health and the Department of Health and Human Services.

Dr. Russell, who is director of health professions education at the Center for Community Health Education, Research and Service in Boston, conducted four focus groups, each with 12 participants.

One group included caregivers of children with asthma, another included caregivers of children without asthma, another included physicians, and another included allied health professionals.

“In 2003, the asthma hospitalization rates for Latino and black children in Boston were five times that for whites and three times that for Asians,” said Dr. Russell.

“Our project wanted to know what experience folks in the community were having.”

Three major themes emerged, she said.

One was that there was insufficient information given to caregivers to help them effectively manage children with asthma.

Dr. Russell quoted one caregiver as saying, “I wish my provider would have looked more at side effects. … My child has a racing heart, hyperactivity, and [trouble sitting] still.”

Focus group results also underlined that “providers need to know about the conditions people live in and the challenges they face,” Dr. Russell said.

“That would help providers be more realistic in devising treatment plans and interventions.”

For instance, a provider suggested to one parent that she get a nonallergic mattress cover for her bed, and the woman replied, “'The springs in my mattress keep popping out,'” Dr. Russell said. “Prescribing something like that just doesn't quite fit.” Another provider advised a caregiver to pull up the carpet in the home, but the person lived in a public housing project.

Participants also talked about the environment of the inner city. “We are surrounded by the gas, the smell, the smoke from cars, and the pollution,” she said. “Those living in public housing talked about carpets, dust, mold, insects, pets, cleaning materials the housing people use, and also tobacco smoke.”

One mother lived next to an auto body shop and complained that whenever the shop was painting cars, her daughter asked for a treatment, because even with the windows closed, the fumes penetrated the home and triggered an asthma attack.

Caregivers suggested that providers put more emphasis on the difference between treating acute symptoms and controlling asthma over time.

Caregivers would prefer a provider who offers asthma education and ongoing monitoring, Dr. Russell noted. “One parent boasted that she had someone who did home visits, so the person could see where they live and come up with something that makes sense and fits for them in their environment.”

In the two focus groups for health professionals, providers were aware of many of the caregivers' frustrations but said that they often didn't have as much time as they would like to deal with these issues, Dr. Russell said in an interview.

WASHINGTON — Caregivers of inner-city children with asthma want better information about managing the side effects of asthma medications and practical ways to reduce asthma triggers, Beverley Russell, Ph.D., said at a meeting sponsored by the Office of Minority Health and the Department of Health and Human Services.

Dr. Russell, who is director of health professions education at the Center for Community Health Education, Research and Service in Boston, conducted four focus groups, each with 12 participants.

One group included caregivers of children with asthma, another included caregivers of children without asthma, another included physicians, and another included allied health professionals.

“In 2003, the asthma hospitalization rates for Latino and black children in Boston were five times that for whites and three times that for Asians,” said Dr. Russell.

“Our project wanted to know what experience folks in the community were having.”

Three major themes emerged, she said.

One was that there was insufficient information given to caregivers to help them effectively manage children with asthma.

Dr. Russell quoted one caregiver as saying, “I wish my provider would have looked more at side effects. … My child has a racing heart, hyperactivity, and [trouble sitting] still.”

Focus group results also underlined that “providers need to know about the conditions people live in and the challenges they face,” Dr. Russell said.

“That would help providers be more realistic in devising treatment plans and interventions.”

For instance, a provider suggested to one parent that she get a nonallergic mattress cover for her bed, and the woman replied, “'The springs in my mattress keep popping out,'” Dr. Russell said. “Prescribing something like that just doesn't quite fit.” Another provider advised a caregiver to pull up the carpet in the home, but the person lived in a public housing project.

Participants also talked about the environment of the inner city. “We are surrounded by the gas, the smell, the smoke from cars, and the pollution,” she said. “Those living in public housing talked about carpets, dust, mold, insects, pets, cleaning materials the housing people use, and also tobacco smoke.”

One mother lived next to an auto body shop and complained that whenever the shop was painting cars, her daughter asked for a treatment, because even with the windows closed, the fumes penetrated the home and triggered an asthma attack.

Caregivers suggested that providers put more emphasis on the difference between treating acute symptoms and controlling asthma over time.

Caregivers would prefer a provider who offers asthma education and ongoing monitoring, Dr. Russell noted. “One parent boasted that she had someone who did home visits, so the person could see where they live and come up with something that makes sense and fits for them in their environment.”

In the two focus groups for health professionals, providers were aware of many of the caregivers' frustrations but said that they often didn't have as much time as they would like to deal with these issues, Dr. Russell said in an interview.

WASHINGTON — Health disparities won't go away until the people and institutions that play a role in creating them are held accountable, Dr. Anne C. Beal said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“When you ask physicians if racial disparities in health care exist, about 65% say no,” said Dr. Beal, senior program officer at the Commonwealth Fund. “So a lot of work needs to be done in terms of making sure we keep pushing for this agenda, that health disparities is a real issue.”

Measures of health care disparity are essentially quality measures, Dr. Beal said.

“The collection of race and ethnicity data is the basic science of disparities,” she said. Without it, “we don't know where we're going, we don't know if we're improving, and we don't know if interventions we're trying to implement are making a difference.”

Although health care quality measures were not initially designed to measure disparities, “if you take standard quality measures and stratify them by race and ethnicity, it allows you to identify racial disparities and what I call 'potential accountability,'” she said.

For example, many people have heard that the infant mortality rate is higher for African Americans than it is for whites. “However, there's no sense of ownership when you hear that,” Dr. Beal said. “You sit there and say, 'Um, um, um, that is a shame that we have this.'”

But if a physician gets a report that says his Latino patients are not getting immunized at the same rate as his African American patients, “then [he] has a sense of ownership and a sense of responsibility for those results,” she said.

One of the problems with collecting racial and ethnic data, however, is how it's done. Dr. Beal quoted a study by Romana Hasnain-Wynia, Ph.D., vice-president for research at the Health Research and Education Trust, which found that 79% of hospitals were collecting racial and ethnic data. However, nearly half of the hospitals collecting the data said the categorization was made by “an admitting clerk, based on observation.”

A better method would be having patients self-identify, she continued. “In the emergency room or admitting area, there is a variety of other tasks you have to complete, not least of which is getting that all-important insurance card, so trying to ask about the patient's race probably falls very low on the list. But in order for us to see how we're doing, we need to develop standards not only in terms of the categories we use, but even with how we ask the question.”

That includes which racial categories to list. “I'm still amazed that in the United States, there are people using 'black, white, and other' as categories,” Dr. Beal said. “Only 80% of hospitals even include a Latino designation.”

Ignatius Bao, director of culturally competent health systems at The California Endowment, said providers should pay more attention to the variety of racial and ethnic groups. He noted that the Department of Health and Human Services is far behind in complying with standards issued in 1997 by the Office of Management and Budget that list a variety of racial categories government agencies are supposed to document when they issue data.

“I would argue, especially on behalf of Asian Americans, Pacific Islanders, and Native Americans, that we need to do better than these standards. We need to disaggregate the data even further,” Mr. Bao said. “But at the very beginning, every time HHS puts out data, it should have these categories, and if it doesn't, HHS should explain why the data are not there.”

Racial and ethnic designations also need to be made part of any electronic health record (EHR) system, Dr. Beal noted. “One of my concerns is that because it's really not high on the agenda of EHR [developers], 10, 15, or 20 years from now we're going to be right back where we started.”

WASHINGTON — Health disparities won't go away until the people and institutions that play a role in creating them are held accountable, Dr. Anne C. Beal said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“When you ask physicians if racial disparities in health care exist, about 65% say no,” said Dr. Beal, senior program officer at the Commonwealth Fund. “So a lot of work needs to be done in terms of making sure we keep pushing for this agenda, that health disparities is a real issue.”

Measures of health care disparity are essentially quality measures, Dr. Beal said.

“The collection of race and ethnicity data is the basic science of disparities,” she said. Without it, “we don't know where we're going, we don't know if we're improving, and we don't know if interventions we're trying to implement are making a difference.”

Although health care quality measures were not initially designed to measure disparities, “if you take standard quality measures and stratify them by race and ethnicity, it allows you to identify racial disparities and what I call 'potential accountability,'” she said.

For example, many people have heard that the infant mortality rate is higher for African Americans than it is for whites. “However, there's no sense of ownership when you hear that,” Dr. Beal said. “You sit there and say, 'Um, um, um, that is a shame that we have this.'”

But if a physician gets a report that says his Latino patients are not getting immunized at the same rate as his African American patients, “then [he] has a sense of ownership and a sense of responsibility for those results,” she said.

One of the problems with collecting racial and ethnic data, however, is how it's done. Dr. Beal quoted a study by Romana Hasnain-Wynia, Ph.D., vice-president for research at the Health Research and Education Trust, which found that 79% of hospitals were collecting racial and ethnic data. However, nearly half of the hospitals collecting the data said the categorization was made by “an admitting clerk, based on observation.”

A better method would be having patients self-identify, she continued. “In the emergency room or admitting area, there is a variety of other tasks you have to complete, not least of which is getting that all-important insurance card, so trying to ask about the patient's race probably falls very low on the list. But in order for us to see how we're doing, we need to develop standards not only in terms of the categories we use, but even with how we ask the question.”

That includes which racial categories to list. “I'm still amazed that in the United States, there are people using 'black, white, and other' as categories,” Dr. Beal said. “Only 80% of hospitals even include a Latino designation.”

Ignatius Bao, director of culturally competent health systems at The California Endowment, said providers should pay more attention to the variety of racial and ethnic groups. He noted that the Department of Health and Human Services is far behind in complying with standards issued in 1997 by the Office of Management and Budget that list a variety of racial categories government agencies are supposed to document when they issue data.

“I would argue, especially on behalf of Asian Americans, Pacific Islanders, and Native Americans, that we need to do better than these standards. We need to disaggregate the data even further,” Mr. Bao said. “But at the very beginning, every time HHS puts out data, it should have these categories, and if it doesn't, HHS should explain why the data are not there.”

Racial and ethnic designations also need to be made part of any electronic health record (EHR) system, Dr. Beal noted. “One of my concerns is that because it's really not high on the agenda of EHR [developers], 10, 15, or 20 years from now we're going to be right back where we started.”

WASHINGTON — Health disparities won't go away until the people and institutions that play a role in creating them are held accountable, Dr. Anne C. Beal said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“When you ask physicians if racial disparities in health care exist, about 65% say no,” said Dr. Beal, senior program officer at the Commonwealth Fund. “So a lot of work needs to be done in terms of making sure we keep pushing for this agenda, that health disparities is a real issue.”

Measures of health care disparity are essentially quality measures, Dr. Beal said.

“The collection of race and ethnicity data is the basic science of disparities,” she said. Without it, “we don't know where we're going, we don't know if we're improving, and we don't know if interventions we're trying to implement are making a difference.”

Although health care quality measures were not initially designed to measure disparities, “if you take standard quality measures and stratify them by race and ethnicity, it allows you to identify racial disparities and what I call 'potential accountability,'” she said.

For example, many people have heard that the infant mortality rate is higher for African Americans than it is for whites. “However, there's no sense of ownership when you hear that,” Dr. Beal said. “You sit there and say, 'Um, um, um, that is a shame that we have this.'”

But if a physician gets a report that says his Latino patients are not getting immunized at the same rate as his African American patients, “then [he] has a sense of ownership and a sense of responsibility for those results,” she said.

One of the problems with collecting racial and ethnic data, however, is how it's done. Dr. Beal quoted a study by Romana Hasnain-Wynia, Ph.D., vice-president for research at the Health Research and Education Trust, which found that 79% of hospitals were collecting racial and ethnic data. However, nearly half of the hospitals collecting the data said the categorization was made by “an admitting clerk, based on observation.”

A better method would be having patients self-identify, she continued. “In the emergency room or admitting area, there is a variety of other tasks you have to complete, not least of which is getting that all-important insurance card, so trying to ask about the patient's race probably falls very low on the list. But in order for us to see how we're doing, we need to develop standards not only in terms of the categories we use, but even with how we ask the question.”

That includes which racial categories to list. “I'm still amazed that in the United States, there are people using 'black, white, and other' as categories,” Dr. Beal said. “Only 80% of hospitals even include a Latino designation.”

Ignatius Bao, director of culturally competent health systems at The California Endowment, said providers should pay more attention to the variety of racial and ethnic groups. He noted that the Department of Health and Human Services is far behind in complying with standards issued in 1997 by the Office of Management and Budget that list a variety of racial categories government agencies are supposed to document when they issue data.

“I would argue, especially on behalf of Asian Americans, Pacific Islanders, and Native Americans, that we need to do better than these standards. We need to disaggregate the data even further,” Mr. Bao said. “But at the very beginning, every time HHS puts out data, it should have these categories, and if it doesn't, HHS should explain why the data are not there.”

Racial and ethnic designations also need to be made part of any electronic health record (EHR) system, Dr. Beal noted. “One of my concerns is that because it's really not high on the agenda of EHR [developers], 10, 15, or 20 years from now we're going to be right back where we started.”

WASHINGTON — Drugs like BiDil that target a particular racial or ethnic group do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure that this came about in a way that actually makes the most sense? Are we sure this drug would not have benefited other groups?”

Although the original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) appeared to show that only African Americans clearly benefited from the drug, “it was a relatively modest-sized study, and there could very well have been some benefit in others,” Dr. Collins said. “Are we sure that this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

By lumping the responders into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said. “I think we want to go in the direction of figuring out, 'Okay, if this drug works for some people and not others, why is that? What specific DNA variants are responsible for the variation in response?' Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this very murky and potentially misleading and damaging proxy called race, and pretend that we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted.

“First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is currently managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.”

Information on the International HapMap Project can be found online at www.hapmap.org

WASHINGTON — Drugs like BiDil that target a particular racial or ethnic group do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure that this came about in a way that actually makes the most sense? Are we sure this drug would not have benefited other groups?”

Although the original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) appeared to show that only African Americans clearly benefited from the drug, “it was a relatively modest-sized study, and there could very well have been some benefit in others,” Dr. Collins said. “Are we sure that this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

By lumping the responders into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said. “I think we want to go in the direction of figuring out, 'Okay, if this drug works for some people and not others, why is that? What specific DNA variants are responsible for the variation in response?' Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this very murky and potentially misleading and damaging proxy called race, and pretend that we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted.

“First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is currently managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.”

Information on the International HapMap Project can be found online at www.hapmap.org

WASHINGTON — Drugs like BiDil that target a particular racial or ethnic group do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure that this came about in a way that actually makes the most sense? Are we sure this drug would not have benefited other groups?”

Although the original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) appeared to show that only African Americans clearly benefited from the drug, “it was a relatively modest-sized study, and there could very well have been some benefit in others,” Dr. Collins said. “Are we sure that this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

By lumping the responders into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said. “I think we want to go in the direction of figuring out, 'Okay, if this drug works for some people and not others, why is that? What specific DNA variants are responsible for the variation in response?' Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this very murky and potentially misleading and damaging proxy called race, and pretend that we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted.

“First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is currently managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.”

Information on the International HapMap Project can be found online at www.hapmap.org

WASHINGTON — The costs of malpractice insurance and defensive medicine account for about 10 cents of every dollar spent on health care premiums, several speakers said at a press briefing sponsored by America's Health Insurance Plans.

Medical liability and defensive medicine represented the “lion's share” of cost increases in the physician and outpatient areas, Michael Thompson, principal at the New York office of PricewaterhouseCoopers, said at the briefing.

Litigation and defensive medicine also accounted for about a third of the costs associated with poor-quality health care, said Mr. Thompson.

According to AHIP President Karen Ignagni, efforts must be made to reduce the amount of poor-quality care being given. “We have a system where 45% of what's being done is not best practice,” she said.

Overall, the rate of increase in health care premiums was 8.8% in 2004–2005, down significantly from 13.7% in 2001–2002, noted Jack Rodgers, managing director at PricewaterhouseCoopers. One factor contributing to the slowdown was a decrease in the rate of cost increases for prescription drugs, according to Mr. Thompson.

Part of the reason for that decrease is employers' increasing use of three-tiered or four-tiered drug programs, in which patients pay a larger share for brand-name drugs, especially if there are generic equivalents. In 2000, only 27% of patients were in drug plans with three or more tiers; in 2004, the figure was 68%, he said.

In addition, cost trends were helped by a drop in the number of state mandates that are being added each year, from 80 in 2000 to less than 40 in 2004, Mr. Thompson said.

The increase in outpatient services accounted for more than a third of the 8.8% increase in premiums, Mr. Rodgers noted

Despite these problems, Mr. Thompson said in an interview that he did not expect premium increases to go higher next year. Part of the stabilization will likely be due to consumers having to pay more for their health care costs and becoming more aware of prices as a result, he added.

WASHINGTON — The costs of malpractice insurance and defensive medicine account for about 10 cents of every dollar spent on health care premiums, several speakers said at a press briefing sponsored by America's Health Insurance Plans.

Medical liability and defensive medicine represented the “lion's share” of cost increases in the physician and outpatient areas, Michael Thompson, principal at the New York office of PricewaterhouseCoopers, said at the briefing.

Litigation and defensive medicine also accounted for about a third of the costs associated with poor-quality health care, said Mr. Thompson.

According to AHIP President Karen Ignagni, efforts must be made to reduce the amount of poor-quality care being given. “We have a system where 45% of what's being done is not best practice,” she said.

Overall, the rate of increase in health care premiums was 8.8% in 2004–2005, down significantly from 13.7% in 2001–2002, noted Jack Rodgers, managing director at PricewaterhouseCoopers. One factor contributing to the slowdown was a decrease in the rate of cost increases for prescription drugs, according to Mr. Thompson.

Part of the reason for that decrease is employers' increasing use of three-tiered or four-tiered drug programs, in which patients pay a larger share for brand-name drugs, especially if there are generic equivalents. In 2000, only 27% of patients were in drug plans with three or more tiers; in 2004, the figure was 68%, he said.

In addition, cost trends were helped by a drop in the number of state mandates that are being added each year, from 80 in 2000 to less than 40 in 2004, Mr. Thompson said.

The increase in outpatient services accounted for more than a third of the 8.8% increase in premiums, Mr. Rodgers noted

Despite these problems, Mr. Thompson said in an interview that he did not expect premium increases to go higher next year. Part of the stabilization will likely be due to consumers having to pay more for their health care costs and becoming more aware of prices as a result, he added.

WASHINGTON — The costs of malpractice insurance and defensive medicine account for about 10 cents of every dollar spent on health care premiums, several speakers said at a press briefing sponsored by America's Health Insurance Plans.

Medical liability and defensive medicine represented the “lion's share” of cost increases in the physician and outpatient areas, Michael Thompson, principal at the New York office of PricewaterhouseCoopers, said at the briefing.

Litigation and defensive medicine also accounted for about a third of the costs associated with poor-quality health care, said Mr. Thompson.

According to AHIP President Karen Ignagni, efforts must be made to reduce the amount of poor-quality care being given. “We have a system where 45% of what's being done is not best practice,” she said.

Overall, the rate of increase in health care premiums was 8.8% in 2004–2005, down significantly from 13.7% in 2001–2002, noted Jack Rodgers, managing director at PricewaterhouseCoopers. One factor contributing to the slowdown was a decrease in the rate of cost increases for prescription drugs, according to Mr. Thompson.

Part of the reason for that decrease is employers' increasing use of three-tiered or four-tiered drug programs, in which patients pay a larger share for brand-name drugs, especially if there are generic equivalents. In 2000, only 27% of patients were in drug plans with three or more tiers; in 2004, the figure was 68%, he said.

In addition, cost trends were helped by a drop in the number of state mandates that are being added each year, from 80 in 2000 to less than 40 in 2004, Mr. Thompson said.

The increase in outpatient services accounted for more than a third of the 8.8% increase in premiums, Mr. Rodgers noted

Despite these problems, Mr. Thompson said in an interview that he did not expect premium increases to go higher next year. Part of the stabilization will likely be due to consumers having to pay more for their health care costs and becoming more aware of prices as a result, he added.

One morning a few months ago, Dr. Dan Murphy was awakened at 3 a.m. with news of a tragic case.

The patient, a 38-year-old man, had been operated on twice during childhood for a heart defect—once to get him stable and then again to fix the defect. Once he reached adolescence, however, he was lost to follow-up.

In the intervening years, he had developed a leaky valve, and his heart had gotten bigger and bigger. “His heart muscle had been damaged by being allowed to have that extra load all these years,” Dr. Murphy said. “He is probably going to either get a heart transplant or die.”

The real tragedy of the case, Dr. Murphy said, was that “I think a lot of the problem could have been prevented if he had been seen earlier.” It's these kinds of cases that Dr. Murphy has in mind as he works to expand Stanford (Calif.) University's Adult Congenital Heart Clinic.

Because of the success of pediatric cardiac care, many patients who would have died from their heart defects are now living well into adulthood. Long-term studies of these patients have shown that they often have few problems for the next 10 or 15 years. However, “We've found that longer term, we start to see things develop,” said Dr. Murphy, director of the clinic.

Part of that is simply a result of changes associated with aging, he continued. “We get older and middle age has its effects on all of us, including people with heart defects. We see rhythm changes, we see cardiac muscle failure in some populations, and we see changes in valves that were functioning before that begin to deteriorate.”

Some of these patients continue to see their pediatric cardiologists until they are well into their 30s, while others see general cardiologists, Dr. Murphy said. But some patients with milder defects may not end up seeing anyone at all.

The ideal background for physicians taking care of these patients is “they need to be trained in pediatric cardiology as well as adult medicine and adult cardiology,” said Dr. Mary Mullen, staff cardiologist at Boston Children's Hospital as well as at the Boston Adult Congenital Heart Service. “Backgrounds tend to vary. I personally trained in medicine and pediatrics.”

To start figuring out a road map for the specialty, the American College of Cardiology sponsored a conference in Bethesda, Md., in October 2000, which resulted in an article addressing coordination of care, educational requirements, access to care, and special needs of adult congenital heart disease patients (J. Am. Coll. Cardiol. 2001;37:1161–98; www.acc.org

The case of Amy Verstappen, a patient with congenitally corrected transposition of the great arteries, is a perfect example of why treating physicians need sophisticated backgrounds. “Two years after the birth of my daughter, I started having some fatigue and was misdiagnosed as having dilated cardiomyopathy,” said Ms. Verstappen, who is president of the Adult Congenital Heart Association, a patient organization. “I kept saying I had this defect and they kept saying, 'It doesn't matter; your only option is a transplant.'”

The irony of that diagnosis, she continued, “was that I had a normal heart size—no one had done a chest x-ray. And the echocardiogram was getting really bad ejection fraction numbers, which were inaccurate.”

Once she got to a specialist, Ms. Verstappen found out that she never had dilated cardiomyopathy and that she could have tricuspid valve replacement instead of a transplant. “I had the valve replacement and I've been stable since.”

Several of the physicians Ms. Verstappen saw remarked that she had a “funny” mitral valve. But that was because they were actually looking at the tricuspid valve, she noted. Reflecting on the treatment she got before she saw a specialist in this area, Ms. Verstappen said, “I'm not mad at [the doctors who misdiagnosed me], but I think people can do a better job of getting a referral when somebody with a complex disease comes along.”

Dr. Murphy agreed. “It's a continuing education problem,” he said. “The patients have a right to see a specialist who stays up to date and who's well trained and experienced. A specialized center like this, and the cardiologists who work in it, serve as education resources not just for the patient, but also for the primary care physician and for the local cardiologist, especially in the case of patients who come a long way. They can see their regular cardiologist for most things, and get a reassessment from us” when needed.

But first, cardiologists need to learn which patients to refer. To help them figure that out, Dr. Roberta Williams, chairman of pediatrics at Children's Hospital of Los Angeles, and Dr. Carol Warnes, professor of medicine at the Mayo Clinic in Rochester, Minn., are developing guidelines for cardiologists on how to manage adult congenital heart disease patients.

“It's sort of a cookbook, to give them a handle on what they should be looking for, what should trigger a referral to a specialized center, and what are the long-term outcomes,” Dr. Williams said. The guidelines, which Dr. Williams said would be available in about a year, are being cosponsored by the ACC and the American Heart Association.

In some geographic areas, “the best expertise [in this area] is in the children's hospital, because the anesthesiologists and the cardiologists there are best trained to manage these patients,” Dr. Mullen said.

Some cardiologists are starting to get the message. Dr. Murphy said his clinic sees about 10 patients a week, most of whom are complex and require long visits.

Dr. Joseph Perloff, founding director of the Adult Congenital Heart Disease Center at the University of California, Los Angeles, also has seen demand grow at his facility. “It was apparent decades ago that advances in surgical techniques in congenital heart disease would result in long-term survival, and there were no facilities or training programs” to help these patients, he said.

So Dr. Perloff started the center shortly after he arrived at UCLA in 1979; the center was initially open only 1 day a week. Today it is open 4 days a week and has a registry of almost 3,000 patients, most of them referred by cardiologists in the community. The Adult Congenital Heart Association, in conjunction with the International Society of Adult Congenital Heart Disease, is putting together a directory of self-described adult congenital heart clinics nationwide; so far, they have received 37 surveys from centers that describe themselves as such, according to Ms. Verstappen.

UCLA also has the first and largest training program for the specialty; the program admits one or two fellows per year, depending on the strength of the applicant pool, Dr. Perloff said. Physicians may apply for the fellowship after they finish residency, which must include 2 years in general cardiology and some pediatric cardiology as well. The fellowship lasts 1 year, “but usually the fellows stay on another year to complete a research study or develop a particular area of interest,” he noted.

Other training programs include those at the University of California, San Francisco, the Mayo Clinic, the University of Iowa, Iowa City, and the University of Pennsylvania, Philadelphia. But more need to be started, Dr. Perloff said.

He noted that currently there are only about 1,200 board-certified pediatric cardiologists, far too few to take care of the estimated 900,000 adults with congenital heart disease nationwide. In fact, “there are now more adults with congenital heart disease than infants and children,” he said.

One problem with recruiting people into training programs is that for cardiologists, “training is already very long” with 4 years of residency and 2 years of specialty training, Dr. Williams said. “To sustain this kind of [subspecialty] training, other aspects of training may need to be shortened, maybe by double-counting certain things, or having a loan forgiveness program or something to help them, because if you delay starting practice for 2 more years, the debt burden is so high a lot of them wouldn't be able to afford to do it.”

This situation is not helped by the fact that many adult congenital heart disease patients have trouble getting health insurance. Coverage for these patients under their parents' insurance policies typically stops when they turn 18 or 21. “How many 19-year-olds working at whatever job someone that age can have, will have health insurance?” Dr. Williams said. Treating uninsured or underinsured patients then adds to the physicians' financial woes.

To bring more attention to the issues surrounding these patients, the Adult Congenital Heart Association and several other organizations sponsored a “lobby day” in Washington on Feb. 8, aimed in part at getting Congress to fund a registry of congenital heart disease patients. “We need basic data to help us plan for the needs of adults with congenital heart disease; we need to do evidence-based medicine,” Ms. Verstappen said. “We also want to help children with congenital heart disease. Right now, we are doing surgeries in children without the data we could have from adults.”

Specialized adult congenital heart disease centers serve as educational resources not just for patients, but also for primary care physicians, Dr. Murphy says. Lucile Packard Children's Hospital

One morning a few months ago, Dr. Dan Murphy was awakened at 3 a.m. with news of a tragic case.

The patient, a 38-year-old man, had been operated on twice during childhood for a heart defect—once to get him stable and then again to fix the defect. Once he reached adolescence, however, he was lost to follow-up.

In the intervening years, he had developed a leaky valve, and his heart had gotten bigger and bigger. “His heart muscle had been damaged by being allowed to have that extra load all these years,” Dr. Murphy said. “He is probably going to either get a heart transplant or die.”

The real tragedy of the case, Dr. Murphy said, was that “I think a lot of the problem could have been prevented if he had been seen earlier.” It's these kinds of cases that Dr. Murphy has in mind as he works to expand Stanford (Calif.) University's Adult Congenital Heart Clinic.

Because of the success of pediatric cardiac care, many patients who would have died from their heart defects are now living well into adulthood. Long-term studies of these patients have shown that they often have few problems for the next 10 or 15 years. However, “We've found that longer term, we start to see things develop,” said Dr. Murphy, director of the clinic.

Part of that is simply a result of changes associated with aging, he continued. “We get older and middle age has its effects on all of us, including people with heart defects. We see rhythm changes, we see cardiac muscle failure in some populations, and we see changes in valves that were functioning before that begin to deteriorate.”

Some of these patients continue to see their pediatric cardiologists until they are well into their 30s, while others see general cardiologists, Dr. Murphy said. But some patients with milder defects may not end up seeing anyone at all.

The ideal background for physicians taking care of these patients is “they need to be trained in pediatric cardiology as well as adult medicine and adult cardiology,” said Dr. Mary Mullen, staff cardiologist at Boston Children's Hospital as well as at the Boston Adult Congenital Heart Service. “Backgrounds tend to vary. I personally trained in medicine and pediatrics.”

To start figuring out a road map for the specialty, the American College of Cardiology sponsored a conference in Bethesda, Md., in October 2000, which resulted in an article addressing coordination of care, educational requirements, access to care, and special needs of adult congenital heart disease patients (J. Am. Coll. Cardiol. 2001;37:1161–98; www.acc.org

The case of Amy Verstappen, a patient with congenitally corrected transposition of the great arteries, is a perfect example of why treating physicians need sophisticated backgrounds. “Two years after the birth of my daughter, I started having some fatigue and was misdiagnosed as having dilated cardiomyopathy,” said Ms. Verstappen, who is president of the Adult Congenital Heart Association, a patient organization. “I kept saying I had this defect and they kept saying, 'It doesn't matter; your only option is a transplant.'”

The irony of that diagnosis, she continued, “was that I had a normal heart size—no one had done a chest x-ray. And the echocardiogram was getting really bad ejection fraction numbers, which were inaccurate.”

Once she got to a specialist, Ms. Verstappen found out that she never had dilated cardiomyopathy and that she could have tricuspid valve replacement instead of a transplant. “I had the valve replacement and I've been stable since.”

Several of the physicians Ms. Verstappen saw remarked that she had a “funny” mitral valve. But that was because they were actually looking at the tricuspid valve, she noted. Reflecting on the treatment she got before she saw a specialist in this area, Ms. Verstappen said, “I'm not mad at [the doctors who misdiagnosed me], but I think people can do a better job of getting a referral when somebody with a complex disease comes along.”

Dr. Murphy agreed. “It's a continuing education problem,” he said. “The patients have a right to see a specialist who stays up to date and who's well trained and experienced. A specialized center like this, and the cardiologists who work in it, serve as education resources not just for the patient, but also for the primary care physician and for the local cardiologist, especially in the case of patients who come a long way. They can see their regular cardiologist for most things, and get a reassessment from us” when needed.

But first, cardiologists need to learn which patients to refer. To help them figure that out, Dr. Roberta Williams, chairman of pediatrics at Children's Hospital of Los Angeles, and Dr. Carol Warnes, professor of medicine at the Mayo Clinic in Rochester, Minn., are developing guidelines for cardiologists on how to manage adult congenital heart disease patients.

“It's sort of a cookbook, to give them a handle on what they should be looking for, what should trigger a referral to a specialized center, and what are the long-term outcomes,” Dr. Williams said. The guidelines, which Dr. Williams said would be available in about a year, are being cosponsored by the ACC and the American Heart Association.

In some geographic areas, “the best expertise [in this area] is in the children's hospital, because the anesthesiologists and the cardiologists there are best trained to manage these patients,” Dr. Mullen said.

Some cardiologists are starting to get the message. Dr. Murphy said his clinic sees about 10 patients a week, most of whom are complex and require long visits.

Dr. Joseph Perloff, founding director of the Adult Congenital Heart Disease Center at the University of California, Los Angeles, also has seen demand grow at his facility. “It was apparent decades ago that advances in surgical techniques in congenital heart disease would result in long-term survival, and there were no facilities or training programs” to help these patients, he said.

So Dr. Perloff started the center shortly after he arrived at UCLA in 1979; the center was initially open only 1 day a week. Today it is open 4 days a week and has a registry of almost 3,000 patients, most of them referred by cardiologists in the community. The Adult Congenital Heart Association, in conjunction with the International Society of Adult Congenital Heart Disease, is putting together a directory of self-described adult congenital heart clinics nationwide; so far, they have received 37 surveys from centers that describe themselves as such, according to Ms. Verstappen.

UCLA also has the first and largest training program for the specialty; the program admits one or two fellows per year, depending on the strength of the applicant pool, Dr. Perloff said. Physicians may apply for the fellowship after they finish residency, which must include 2 years in general cardiology and some pediatric cardiology as well. The fellowship lasts 1 year, “but usually the fellows stay on another year to complete a research study or develop a particular area of interest,” he noted.

Other training programs include those at the University of California, San Francisco, the Mayo Clinic, the University of Iowa, Iowa City, and the University of Pennsylvania, Philadelphia. But more need to be started, Dr. Perloff said.

He noted that currently there are only about 1,200 board-certified pediatric cardiologists, far too few to take care of the estimated 900,000 adults with congenital heart disease nationwide. In fact, “there are now more adults with congenital heart disease than infants and children,” he said.

One problem with recruiting people into training programs is that for cardiologists, “training is already very long” with 4 years of residency and 2 years of specialty training, Dr. Williams said. “To sustain this kind of [subspecialty] training, other aspects of training may need to be shortened, maybe by double-counting certain things, or having a loan forgiveness program or something to help them, because if you delay starting practice for 2 more years, the debt burden is so high a lot of them wouldn't be able to afford to do it.”

This situation is not helped by the fact that many adult congenital heart disease patients have trouble getting health insurance. Coverage for these patients under their parents' insurance policies typically stops when they turn 18 or 21. “How many 19-year-olds working at whatever job someone that age can have, will have health insurance?” Dr. Williams said. Treating uninsured or underinsured patients then adds to the physicians' financial woes.

To bring more attention to the issues surrounding these patients, the Adult Congenital Heart Association and several other organizations sponsored a “lobby day” in Washington on Feb. 8, aimed in part at getting Congress to fund a registry of congenital heart disease patients. “We need basic data to help us plan for the needs of adults with congenital heart disease; we need to do evidence-based medicine,” Ms. Verstappen said. “We also want to help children with congenital heart disease. Right now, we are doing surgeries in children without the data we could have from adults.”

Specialized adult congenital heart disease centers serve as educational resources not just for patients, but also for primary care physicians, Dr. Murphy says. Lucile Packard Children's Hospital

One morning a few months ago, Dr. Dan Murphy was awakened at 3 a.m. with news of a tragic case.

The patient, a 38-year-old man, had been operated on twice during childhood for a heart defect—once to get him stable and then again to fix the defect. Once he reached adolescence, however, he was lost to follow-up.

In the intervening years, he had developed a leaky valve, and his heart had gotten bigger and bigger. “His heart muscle had been damaged by being allowed to have that extra load all these years,” Dr. Murphy said. “He is probably going to either get a heart transplant or die.”

The real tragedy of the case, Dr. Murphy said, was that “I think a lot of the problem could have been prevented if he had been seen earlier.” It's these kinds of cases that Dr. Murphy has in mind as he works to expand Stanford (Calif.) University's Adult Congenital Heart Clinic.

Because of the success of pediatric cardiac care, many patients who would have died from their heart defects are now living well into adulthood. Long-term studies of these patients have shown that they often have few problems for the next 10 or 15 years. However, “We've found that longer term, we start to see things develop,” said Dr. Murphy, director of the clinic.

Part of that is simply a result of changes associated with aging, he continued. “We get older and middle age has its effects on all of us, including people with heart defects. We see rhythm changes, we see cardiac muscle failure in some populations, and we see changes in valves that were functioning before that begin to deteriorate.”

Some of these patients continue to see their pediatric cardiologists until they are well into their 30s, while others see general cardiologists, Dr. Murphy said. But some patients with milder defects may not end up seeing anyone at all.

The ideal background for physicians taking care of these patients is “they need to be trained in pediatric cardiology as well as adult medicine and adult cardiology,” said Dr. Mary Mullen, staff cardiologist at Boston Children's Hospital as well as at the Boston Adult Congenital Heart Service. “Backgrounds tend to vary. I personally trained in medicine and pediatrics.”

To start figuring out a road map for the specialty, the American College of Cardiology sponsored a conference in Bethesda, Md., in October 2000, which resulted in an article addressing coordination of care, educational requirements, access to care, and special needs of adult congenital heart disease patients (J. Am. Coll. Cardiol. 2001;37:1161–98; www.acc.org

The case of Amy Verstappen, a patient with congenitally corrected transposition of the great arteries, is a perfect example of why treating physicians need sophisticated backgrounds. “Two years after the birth of my daughter, I started having some fatigue and was misdiagnosed as having dilated cardiomyopathy,” said Ms. Verstappen, who is president of the Adult Congenital Heart Association, a patient organization. “I kept saying I had this defect and they kept saying, 'It doesn't matter; your only option is a transplant.'”

The irony of that diagnosis, she continued, “was that I had a normal heart size—no one had done a chest x-ray. And the echocardiogram was getting really bad ejection fraction numbers, which were inaccurate.”

Once she got to a specialist, Ms. Verstappen found out that she never had dilated cardiomyopathy and that she could have tricuspid valve replacement instead of a transplant. “I had the valve replacement and I've been stable since.”

Several of the physicians Ms. Verstappen saw remarked that she had a “funny” mitral valve. But that was because they were actually looking at the tricuspid valve, she noted. Reflecting on the treatment she got before she saw a specialist in this area, Ms. Verstappen said, “I'm not mad at [the doctors who misdiagnosed me], but I think people can do a better job of getting a referral when somebody with a complex disease comes along.”

Dr. Murphy agreed. “It's a continuing education problem,” he said. “The patients have a right to see a specialist who stays up to date and who's well trained and experienced. A specialized center like this, and the cardiologists who work in it, serve as education resources not just for the patient, but also for the primary care physician and for the local cardiologist, especially in the case of patients who come a long way. They can see their regular cardiologist for most things, and get a reassessment from us” when needed.

But first, cardiologists need to learn which patients to refer. To help them figure that out, Dr. Roberta Williams, chairman of pediatrics at Children's Hospital of Los Angeles, and Dr. Carol Warnes, professor of medicine at the Mayo Clinic in Rochester, Minn., are developing guidelines for cardiologists on how to manage adult congenital heart disease patients.

“It's sort of a cookbook, to give them a handle on what they should be looking for, what should trigger a referral to a specialized center, and what are the long-term outcomes,” Dr. Williams said. The guidelines, which Dr. Williams said would be available in about a year, are being cosponsored by the ACC and the American Heart Association.

In some geographic areas, “the best expertise [in this area] is in the children's hospital, because the anesthesiologists and the cardiologists there are best trained to manage these patients,” Dr. Mullen said.

Some cardiologists are starting to get the message. Dr. Murphy said his clinic sees about 10 patients a week, most of whom are complex and require long visits.

Dr. Joseph Perloff, founding director of the Adult Congenital Heart Disease Center at the University of California, Los Angeles, also has seen demand grow at his facility. “It was apparent decades ago that advances in surgical techniques in congenital heart disease would result in long-term survival, and there were no facilities or training programs” to help these patients, he said.

So Dr. Perloff started the center shortly after he arrived at UCLA in 1979; the center was initially open only 1 day a week. Today it is open 4 days a week and has a registry of almost 3,000 patients, most of them referred by cardiologists in the community. The Adult Congenital Heart Association, in conjunction with the International Society of Adult Congenital Heart Disease, is putting together a directory of self-described adult congenital heart clinics nationwide; so far, they have received 37 surveys from centers that describe themselves as such, according to Ms. Verstappen.

UCLA also has the first and largest training program for the specialty; the program admits one or two fellows per year, depending on the strength of the applicant pool, Dr. Perloff said. Physicians may apply for the fellowship after they finish residency, which must include 2 years in general cardiology and some pediatric cardiology as well. The fellowship lasts 1 year, “but usually the fellows stay on another year to complete a research study or develop a particular area of interest,” he noted.

Other training programs include those at the University of California, San Francisco, the Mayo Clinic, the University of Iowa, Iowa City, and the University of Pennsylvania, Philadelphia. But more need to be started, Dr. Perloff said.

He noted that currently there are only about 1,200 board-certified pediatric cardiologists, far too few to take care of the estimated 900,000 adults with congenital heart disease nationwide. In fact, “there are now more adults with congenital heart disease than infants and children,” he said.

One problem with recruiting people into training programs is that for cardiologists, “training is already very long” with 4 years of residency and 2 years of specialty training, Dr. Williams said. “To sustain this kind of [subspecialty] training, other aspects of training may need to be shortened, maybe by double-counting certain things, or having a loan forgiveness program or something to help them, because if you delay starting practice for 2 more years, the debt burden is so high a lot of them wouldn't be able to afford to do it.”

This situation is not helped by the fact that many adult congenital heart disease patients have trouble getting health insurance. Coverage for these patients under their parents' insurance policies typically stops when they turn 18 or 21. “How many 19-year-olds working at whatever job someone that age can have, will have health insurance?” Dr. Williams said. Treating uninsured or underinsured patients then adds to the physicians' financial woes.

To bring more attention to the issues surrounding these patients, the Adult Congenital Heart Association and several other organizations sponsored a “lobby day” in Washington on Feb. 8, aimed in part at getting Congress to fund a registry of congenital heart disease patients. “We need basic data to help us plan for the needs of adults with congenital heart disease; we need to do evidence-based medicine,” Ms. Verstappen said. “We also want to help children with congenital heart disease. Right now, we are doing surgeries in children without the data we could have from adults.”

Specialized adult congenital heart disease centers serve as educational resources not just for patients, but also for primary care physicians, Dr. Murphy says. Lucile Packard Children's Hospital

WASHINGTON – Drugs like BiDil that target a particular racial or ethnic group do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure that this came about in a way that actually makes the most sense? Are we sure this drug would not have benefited other groups?”

Although the original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) appeared to show that only African Americans clearly benefited from the drug, “it was a relatively modest-sized study, and there could very well have been some benefit in others,” Dr. Collins said. “Are we sure that this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

With the responders lumped into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said. “I think we want to go in the direction of figuring out, 'Okay, if this drug works for some people and not others, why is that? What specific DNA variants are responsible for the variation in response?' Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this very murky and potentially misleading and damaging proxy called race, and pretend that we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted. “First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Most of the variation in the human genome over the last 100,000 years “relates to the ways in which those genes were spread as those people migrated out of Africa to other parts of the world,” he said. And while genomics may play a role in the reasons for health disparities, “it is almost always in concert with environmental factors.” When new mutations have occurred, for the most part they appear and then disappear, according to Dr. Collins. One exception to that, however, is any mutation that gave people a selective advantage. Skin color is an example.

“If you're dark-skinned in a northern climate where there's not as much sun exposure, you're likely to get rickets, and someone with rickets will have a difficult time in childbirth,” he said. “Whereas, if you have light skin at the equator, you're going to end up with a very high risk of skin cancer.”

The way that lighter-skinned people evolved from their starting point as black Africans just proves the fact that “we white people are actually mutants,” he added.

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is currently managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.”

If medical researchers really want to know how genetic variation affects predisposition to illness, “we're going to need more data, and the good news is, in another 2 or 3 years, we're going to have a lot more data on this subject and will be much more poised to do something about it,” he said.

International HapMap Project information can be found online at www.hapmap.org

WASHINGTON – Drugs like BiDil that target a particular racial or ethnic group do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure that this came about in a way that actually makes the most sense? Are we sure this drug would not have benefited other groups?”

Although the original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) appeared to show that only African Americans clearly benefited from the drug, “it was a relatively modest-sized study, and there could very well have been some benefit in others,” Dr. Collins said. “Are we sure that this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

With the responders lumped into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said. “I think we want to go in the direction of figuring out, 'Okay, if this drug works for some people and not others, why is that? What specific DNA variants are responsible for the variation in response?' Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this very murky and potentially misleading and damaging proxy called race, and pretend that we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted. “First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Most of the variation in the human genome over the last 100,000 years “relates to the ways in which those genes were spread as those people migrated out of Africa to other parts of the world,” he said. And while genomics may play a role in the reasons for health disparities, “it is almost always in concert with environmental factors.” When new mutations have occurred, for the most part they appear and then disappear, according to Dr. Collins. One exception to that, however, is any mutation that gave people a selective advantage. Skin color is an example.

“If you're dark-skinned in a northern climate where there's not as much sun exposure, you're likely to get rickets, and someone with rickets will have a difficult time in childbirth,” he said. “Whereas, if you have light skin at the equator, you're going to end up with a very high risk of skin cancer.”

The way that lighter-skinned people evolved from their starting point as black Africans just proves the fact that “we white people are actually mutants,” he added.

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is currently managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.”

If medical researchers really want to know how genetic variation affects predisposition to illness, “we're going to need more data, and the good news is, in another 2 or 3 years, we're going to have a lot more data on this subject and will be much more poised to do something about it,” he said.

International HapMap Project information can be found online at www.hapmap.org

WASHINGTON – Drugs like BiDil that target a particular racial or ethnic group do not represent the best approach for looking at health disparities, Dr. Francis S. Collins said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

“It is a good thing that we have a drug that treats individuals with congestive heart failure and clearly improves their survival,” said Dr. Collins, director of the National Human Genome Research Institute, in Bethesda, Md. “But are we sure that this came about in a way that actually makes the most sense? Are we sure this drug would not have benefited other groups?”

Although the original clinical trial for BiDil (fixed-dose isosorbide dinitrate and hydralazine) appeared to show that only African Americans clearly benefited from the drug, “it was a relatively modest-sized study, and there could very well have been some benefit in others,” Dr. Collins said. “Are we sure that this has anything to do with being African American, or could it be that since African Americans tend to have heart failure on the basis of hypertension, that this [study] says this drug works for hypertensive heart failure and not as well for heart failure from coronary artery disease, which is perhaps more common in other groups?”

With the responders lumped into the category of a racial group, “there's a real risk that this will be interpreted as, 'Oh, well, that means black people really are biologically different. After all, there is this drug that only works for them,'” said Dr. Collins. “That is unjustified by the science that's been done here.”

More drugs like BiDil may be coming, but “I don't think this is where we want to go,” he said. “I think we want to go in the direction of figuring out, 'Okay, if this drug works for some people and not others, why is that? What specific DNA variants are responsible for the variation in response?' Let's check the individuals and find out whether they're likely to respond to the drug or not, and not use this very murky and potentially misleading and damaging proxy called race, and pretend that we're practicing really upscale medicine. We can do better than that.”

Part of the problem with using racial groups to explain health disparities is that race is hard to define, Dr. Collins noted. “First you have to decide exactly what you mean by race. Race has so much baggage; it carries with it connotations of history and discrimination, culture and society, and dietary practices. It carries a little bit of ancestral geography, of course, but that is probably in the minority of what most people are actually thinking of when the term race appears in the census,” he said.

Another problem with separating people into races is that the genetic makeup of all humans is actually quite similar, said Dr. Collins, who leads the Human Genome Project. He noted that people are 99.9% the same, genetically speaking.

“We are much more alike … than most other species on the planet. There's more diversity in a small group of chimpanzees living on one hillside than there is in the entire human race, because we're so new on the scene.”

Most of the variation in the human genome over the last 100,000 years “relates to the ways in which those genes were spread as those people migrated out of Africa to other parts of the world,” he said. And while genomics may play a role in the reasons for health disparities, “it is almost always in concert with environmental factors.” When new mutations have occurred, for the most part they appear and then disappear, according to Dr. Collins. One exception to that, however, is any mutation that gave people a selective advantage. Skin color is an example.

“If you're dark-skinned in a northern climate where there's not as much sun exposure, you're likely to get rickets, and someone with rickets will have a difficult time in childbirth,” he said. “Whereas, if you have light skin at the equator, you're going to end up with a very high risk of skin cancer.”

The way that lighter-skinned people evolved from their starting point as black Africans just proves the fact that “we white people are actually mutants,” he added.

Now that the Human Genome Project and other private groups have decoded the human genome, researchers are focusing on the 0.1% of the genome that varies among individuals. Dr. Collins is currently managing the International HapMap Project, a cooperative effort among researchers in six countries to build a catalog of human genetic variation.

“In the space of just 3 years, the HapMap has delivered this remarkable picture of how DNA variation has occurred across all chromosomes,” he said. “This has been a gold mine of information for people trying to unravel the genetic contributions of diabetes, heart disease, mental illness, blindness, and a whole host of conditions that fill up our hospitals and our clinics.”

If medical researchers really want to know how genetic variation affects predisposition to illness, “we're going to need more data, and the good news is, in another 2 or 3 years, we're going to have a lot more data on this subject and will be much more poised to do something about it,” he said.

International HapMap Project information can be found online at www.hapmap.org

Proposed Cuts to Mental Health

Mental health and substance abuse programs took a funding hit under President Bush's budget request for fiscal year 2007. The request calls for $698 billion for the Department of Health and Human Services–$58 billion more than fiscal 2006–but contains a number of cost containment measures that would either whittle down or cut certain programs entirely. Proposed funding for the Substance Abuse and Mental Health Services Administration is set at $3.3 billion, a net decrease of $67 million from last year. This includes $849 million for mental health services, which is $35 million less than last year. That decrease is occurring because even though the Center for Mental Health Services will not cut any programs in 2007, “there are a number of grant cohorts within programs that will come to their natural end” and no new grants will be awarded, although grants in mid-cycle will continue, according to center director Kathryn Power. The budget request freezes funding for children's mental health programs at last year's level of $104 million. The request also includes a proposal to reform the Community Mental Health Block Grant designed to make the mental health system more consumer- and family-driven, and to promote early mental health screening. Substance abuse prevention programs “of regional and national significance” would receive $181 million in 2007, $12 million less than in 2006. As the budget request noted, one possible reason for the decrease is that illicit drug use among teens has dropped nearly 19% since 2001.

Primary Care Drug Testing

Pediatricians and other primary care physicians often don't use the right urine sampling techniques and validation procedures when they perform drug tests on adolescents, according to a study that appeared in the February issue of the Archives of Pediatric and Adolescent Medicine. Dr. Sharon Levy of Harvard Medical School and colleagues surveyed 359 physician members of the American Academy of Pediatrics, the Society of Adolescent Medicine, and the American Academy of Family Physicians and found that only 23% of physician respondents used an effective collection procedure (patient provides identification, empties pockets, and uses the bathroom without running water; blue dye is placed in standing water; and specimen temperature is checked immediately). Only 7% of respondents said they routinely checked both urine creatinine level and specific gravity to prevent patients from cheating on a test by providing diluted urine. Most respondents also did not know that Ecstasy, oxycodone, and nitrous oxide are not detected by routine screens, the authors noted. “The primary care workforce is not prepared to provide guidance to schools, parents, or patients with questions regarding drug testing,” they wrote, adding that physicians who do these types of drug screens in their offices frequently should seek further training.

Depression Prevails in Teens

Earlier interventions are needed to address childhood onset of mental health disorders, Missy Fleming, Ph.D., program director for child and adolescent health with the American Medical Association, said at a meeting of the National Institute for Health Care Management Foundation. “We need to develop a stronger infrastructure and policies to promote and support healthy psychological development,” she said. This includes increasing access to interventions that are likely to reduce the burdens of untreated mental disorders; linking assessment services to prevention and treatment, especially those that are sensitive to cultural needs; and enlisting primary care physicians, schools, and community resources to meet adolescent and young adult mental health needs. Major depressive disorder is common during childhood, with an estimated prevalence of 2%–5% for adolescents aged 13–18 years. This problem increases through young adulthood, she said. “At least 14%–25% of youth experience one episode of major depression before adulthood.” One in five adolescents ages 9–17 experiences symptoms of mental health problems that can cause some impairment in a given year, she said, citing the Substance Abuse and Mental Health Services Administration's 2004 National Survey on Drug Use and Health.

Lester Crawford, Lobbyist

Former Food and Drug Administration Commissioner Lester Crawford, D.V.M., has taken a position at Policy Directions Inc., a Washington, D.C.-based lobbying and consulting firm. Mr. Crawford will be senior counsel to the organization, which counts pharmaceutical manufacturers and biotechnology and food companies among its clients. By law, he will be barred from directly lobbying Congress for at least a year. Policy Directions declined to make him available for an interview. Mr. Crawford resigned abruptly from his FDA post in September, just 2 months after he was confirmed by the Senate. In the 5 years of the Bush Administration, the FDA has had a permanent commissioner for only 18 months. (Mr. Crawford served in an acting capacity for 16 months without Senate confirmation.) In early February, Sen. Chuck Grassley (R-Iowa) wrote to White House Chief of Staff Andrew Card asking that a permanent commissioner be nominated, adding that the agency was adrift without such leadership. For now, Dr. Andrew von Eschenbach is the acting Commissioner, but also continues to hold his previous job as head of the National Cancer Institute.

Proposed Cuts to Mental Health

Mental health and substance abuse programs took a funding hit under President Bush's budget request for fiscal year 2007. The request calls for $698 billion for the Department of Health and Human Services–$58 billion more than fiscal 2006–but contains a number of cost containment measures that would either whittle down or cut certain programs entirely. Proposed funding for the Substance Abuse and Mental Health Services Administration is set at $3.3 billion, a net decrease of $67 million from last year. This includes $849 million for mental health services, which is $35 million less than last year. That decrease is occurring because even though the Center for Mental Health Services will not cut any programs in 2007, “there are a number of grant cohorts within programs that will come to their natural end” and no new grants will be awarded, although grants in mid-cycle will continue, according to center director Kathryn Power. The budget request freezes funding for children's mental health programs at last year's level of $104 million. The request also includes a proposal to reform the Community Mental Health Block Grant designed to make the mental health system more consumer- and family-driven, and to promote early mental health screening. Substance abuse prevention programs “of regional and national significance” would receive $181 million in 2007, $12 million less than in 2006. As the budget request noted, one possible reason for the decrease is that illicit drug use among teens has dropped nearly 19% since 2001.

Primary Care Drug Testing

Pediatricians and other primary care physicians often don't use the right urine sampling techniques and validation procedures when they perform drug tests on adolescents, according to a study that appeared in the February issue of the Archives of Pediatric and Adolescent Medicine. Dr. Sharon Levy of Harvard Medical School and colleagues surveyed 359 physician members of the American Academy of Pediatrics, the Society of Adolescent Medicine, and the American Academy of Family Physicians and found that only 23% of physician respondents used an effective collection procedure (patient provides identification, empties pockets, and uses the bathroom without running water; blue dye is placed in standing water; and specimen temperature is checked immediately). Only 7% of respondents said they routinely checked both urine creatinine level and specific gravity to prevent patients from cheating on a test by providing diluted urine. Most respondents also did not know that Ecstasy, oxycodone, and nitrous oxide are not detected by routine screens, the authors noted. “The primary care workforce is not prepared to provide guidance to schools, parents, or patients with questions regarding drug testing,” they wrote, adding that physicians who do these types of drug screens in their offices frequently should seek further training.

Depression Prevails in Teens

Earlier interventions are needed to address childhood onset of mental health disorders, Missy Fleming, Ph.D., program director for child and adolescent health with the American Medical Association, said at a meeting of the National Institute for Health Care Management Foundation. “We need to develop a stronger infrastructure and policies to promote and support healthy psychological development,” she said. This includes increasing access to interventions that are likely to reduce the burdens of untreated mental disorders; linking assessment services to prevention and treatment, especially those that are sensitive to cultural needs; and enlisting primary care physicians, schools, and community resources to meet adolescent and young adult mental health needs. Major depressive disorder is common during childhood, with an estimated prevalence of 2%–5% for adolescents aged 13–18 years. This problem increases through young adulthood, she said. “At least 14%–25% of youth experience one episode of major depression before adulthood.” One in five adolescents ages 9–17 experiences symptoms of mental health problems that can cause some impairment in a given year, she said, citing the Substance Abuse and Mental Health Services Administration's 2004 National Survey on Drug Use and Health.

Lester Crawford, Lobbyist

Former Food and Drug Administration Commissioner Lester Crawford, D.V.M., has taken a position at Policy Directions Inc., a Washington, D.C.-based lobbying and consulting firm. Mr. Crawford will be senior counsel to the organization, which counts pharmaceutical manufacturers and biotechnology and food companies among its clients. By law, he will be barred from directly lobbying Congress for at least a year. Policy Directions declined to make him available for an interview. Mr. Crawford resigned abruptly from his FDA post in September, just 2 months after he was confirmed by the Senate. In the 5 years of the Bush Administration, the FDA has had a permanent commissioner for only 18 months. (Mr. Crawford served in an acting capacity for 16 months without Senate confirmation.) In early February, Sen. Chuck Grassley (R-Iowa) wrote to White House Chief of Staff Andrew Card asking that a permanent commissioner be nominated, adding that the agency was adrift without such leadership. For now, Dr. Andrew von Eschenbach is the acting Commissioner, but also continues to hold his previous job as head of the National Cancer Institute.

Proposed Cuts to Mental Health

Mental health and substance abuse programs took a funding hit under President Bush's budget request for fiscal year 2007. The request calls for $698 billion for the Department of Health and Human Services–$58 billion more than fiscal 2006–but contains a number of cost containment measures that would either whittle down or cut certain programs entirely. Proposed funding for the Substance Abuse and Mental Health Services Administration is set at $3.3 billion, a net decrease of $67 million from last year. This includes $849 million for mental health services, which is $35 million less than last year. That decrease is occurring because even though the Center for Mental Health Services will not cut any programs in 2007, “there are a number of grant cohorts within programs that will come to their natural end” and no new grants will be awarded, although grants in mid-cycle will continue, according to center director Kathryn Power. The budget request freezes funding for children's mental health programs at last year's level of $104 million. The request also includes a proposal to reform the Community Mental Health Block Grant designed to make the mental health system more consumer- and family-driven, and to promote early mental health screening. Substance abuse prevention programs “of regional and national significance” would receive $181 million in 2007, $12 million less than in 2006. As the budget request noted, one possible reason for the decrease is that illicit drug use among teens has dropped nearly 19% since 2001.

Primary Care Drug Testing

Pediatricians and other primary care physicians often don't use the right urine sampling techniques and validation procedures when they perform drug tests on adolescents, according to a study that appeared in the February issue of the Archives of Pediatric and Adolescent Medicine. Dr. Sharon Levy of Harvard Medical School and colleagues surveyed 359 physician members of the American Academy of Pediatrics, the Society of Adolescent Medicine, and the American Academy of Family Physicians and found that only 23% of physician respondents used an effective collection procedure (patient provides identification, empties pockets, and uses the bathroom without running water; blue dye is placed in standing water; and specimen temperature is checked immediately). Only 7% of respondents said they routinely checked both urine creatinine level and specific gravity to prevent patients from cheating on a test by providing diluted urine. Most respondents also did not know that Ecstasy, oxycodone, and nitrous oxide are not detected by routine screens, the authors noted. “The primary care workforce is not prepared to provide guidance to schools, parents, or patients with questions regarding drug testing,” they wrote, adding that physicians who do these types of drug screens in their offices frequently should seek further training.

Depression Prevails in Teens

Earlier interventions are needed to address childhood onset of mental health disorders, Missy Fleming, Ph.D., program director for child and adolescent health with the American Medical Association, said at a meeting of the National Institute for Health Care Management Foundation. “We need to develop a stronger infrastructure and policies to promote and support healthy psychological development,” she said. This includes increasing access to interventions that are likely to reduce the burdens of untreated mental disorders; linking assessment services to prevention and treatment, especially those that are sensitive to cultural needs; and enlisting primary care physicians, schools, and community resources to meet adolescent and young adult mental health needs. Major depressive disorder is common during childhood, with an estimated prevalence of 2%–5% for adolescents aged 13–18 years. This problem increases through young adulthood, she said. “At least 14%–25% of youth experience one episode of major depression before adulthood.” One in five adolescents ages 9–17 experiences symptoms of mental health problems that can cause some impairment in a given year, she said, citing the Substance Abuse and Mental Health Services Administration's 2004 National Survey on Drug Use and Health.

Lester Crawford, Lobbyist

Former Food and Drug Administration Commissioner Lester Crawford, D.V.M., has taken a position at Policy Directions Inc., a Washington, D.C.-based lobbying and consulting firm. Mr. Crawford will be senior counsel to the organization, which counts pharmaceutical manufacturers and biotechnology and food companies among its clients. By law, he will be barred from directly lobbying Congress for at least a year. Policy Directions declined to make him available for an interview. Mr. Crawford resigned abruptly from his FDA post in September, just 2 months after he was confirmed by the Senate. In the 5 years of the Bush Administration, the FDA has had a permanent commissioner for only 18 months. (Mr. Crawford served in an acting capacity for 16 months without Senate confirmation.) In early February, Sen. Chuck Grassley (R-Iowa) wrote to White House Chief of Staff Andrew Card asking that a permanent commissioner be nominated, adding that the agency was adrift without such leadership. For now, Dr. Andrew von Eschenbach is the acting Commissioner, but also continues to hold his previous job as head of the National Cancer Institute.

WASHINGTON – African American cancer patients are heterogeneous in their need for pain medication, Salimah Meghani, Ph.D., said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

Dr. Meghani interviewed 36 self-identified African American cancer patients from three outpatient oncology clinics in Philadelphia; all were over age 18 years and had solid tumors. All of the patients had self-reported pain at least 1 month in duration during the last 6 months; none had had major surgery in the prior 3 months.

The patients filled out a 32-item self-report instrument assessing pain severity and its impact, and researchers conducted open-ended interviews lasting 50–70 minutes. To ensure reliability among coders, 15% of the transcripts were independently coded by Dr. Meghani and a consultant.

The patients were 33–75 years old. Slightly more than half were male, two-thirds were single, and 89% were Christian, said Dr. Meghani, a postdoctoral fellow at the Center for Health Disparities Research at the University of Pennsylvania, Philadelphia. Almost all of the patients were insured; the median annual household income was in the $20,000-$30,000 range.

Only one-third of the patients said they preferred to take pain medication regularly. Overall, 25% said they were concerned about taking too much pain medication, and 36% said they had problems with side effects from pain medication. On the other hand, 19% of the patients said they needed more pain medication and 36% said they needed stronger medication.

Dr. Meghani separated 35 of the patients into three categories. (One patient did not participate in the interview and so could not be categorized.)

The first category, which included four patients, was called “nonbelievers.” They didn't want to take too much pain medication for fear that it would hide recurring disease.

The second, more middle-of-the-road category (“centralists”) included 24 patients. They tended to take their pain medication despite their ambivalence about it. Dr. Meghani quoted one patient in this group: “I wish I could stop [taking the medication,] but I know I can't, so I have to deal with it.”

The third category, called “strong believers,” included seven patients. These patients were strongly in favor of taking pain medication, with one of them quoted as saying, “I don't mind taking [pain medicine] because it relaxes me and it keeps the pain down and it gives me a chance to get my rest.”

The study had several limitations, including a small sample size and lack of accounting for type or stage of illness, type or strength of the prescribed medication, and history of dependency. But the results showed that black patients cannot be put into a “one-size-fits-all” category regarding pain management, Dr. Meghani said.

WASHINGTON – African American cancer patients are heterogeneous in their need for pain medication, Salimah Meghani, Ph.D., said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

Dr. Meghani interviewed 36 self-identified African American cancer patients from three outpatient oncology clinics in Philadelphia; all were over age 18 years and had solid tumors. All of the patients had self-reported pain at least 1 month in duration during the last 6 months; none had had major surgery in the prior 3 months.

The patients filled out a 32-item self-report instrument assessing pain severity and its impact, and researchers conducted open-ended interviews lasting 50–70 minutes. To ensure reliability among coders, 15% of the transcripts were independently coded by Dr. Meghani and a consultant.

The patients were 33–75 years old. Slightly more than half were male, two-thirds were single, and 89% were Christian, said Dr. Meghani, a postdoctoral fellow at the Center for Health Disparities Research at the University of Pennsylvania, Philadelphia. Almost all of the patients were insured; the median annual household income was in the $20,000-$30,000 range.

Only one-third of the patients said they preferred to take pain medication regularly. Overall, 25% said they were concerned about taking too much pain medication, and 36% said they had problems with side effects from pain medication. On the other hand, 19% of the patients said they needed more pain medication and 36% said they needed stronger medication.

Dr. Meghani separated 35 of the patients into three categories. (One patient did not participate in the interview and so could not be categorized.)

The first category, which included four patients, was called “nonbelievers.” They didn't want to take too much pain medication for fear that it would hide recurring disease.

The second, more middle-of-the-road category (“centralists”) included 24 patients. They tended to take their pain medication despite their ambivalence about it. Dr. Meghani quoted one patient in this group: “I wish I could stop [taking the medication,] but I know I can't, so I have to deal with it.”

The third category, called “strong believers,” included seven patients. These patients were strongly in favor of taking pain medication, with one of them quoted as saying, “I don't mind taking [pain medicine] because it relaxes me and it keeps the pain down and it gives me a chance to get my rest.”

The study had several limitations, including a small sample size and lack of accounting for type or stage of illness, type or strength of the prescribed medication, and history of dependency. But the results showed that black patients cannot be put into a “one-size-fits-all” category regarding pain management, Dr. Meghani said.

WASHINGTON – African American cancer patients are heterogeneous in their need for pain medication, Salimah Meghani, Ph.D., said at a meeting sponsored by the Department of Health and Human Services and the Office of Minority Health.

Dr. Meghani interviewed 36 self-identified African American cancer patients from three outpatient oncology clinics in Philadelphia; all were over age 18 years and had solid tumors. All of the patients had self-reported pain at least 1 month in duration during the last 6 months; none had had major surgery in the prior 3 months.

The patients filled out a 32-item self-report instrument assessing pain severity and its impact, and researchers conducted open-ended interviews lasting 50–70 minutes. To ensure reliability among coders, 15% of the transcripts were independently coded by Dr. Meghani and a consultant.

The patients were 33–75 years old. Slightly more than half were male, two-thirds were single, and 89% were Christian, said Dr. Meghani, a postdoctoral fellow at the Center for Health Disparities Research at the University of Pennsylvania, Philadelphia. Almost all of the patients were insured; the median annual household income was in the $20,000-$30,000 range.

Only one-third of the patients said they preferred to take pain medication regularly. Overall, 25% said they were concerned about taking too much pain medication, and 36% said they had problems with side effects from pain medication. On the other hand, 19% of the patients said they needed more pain medication and 36% said they needed stronger medication.

Dr. Meghani separated 35 of the patients into three categories. (One patient did not participate in the interview and so could not be categorized.)

The first category, which included four patients, was called “nonbelievers.” They didn't want to take too much pain medication for fear that it would hide recurring disease.

The second, more middle-of-the-road category (“centralists”) included 24 patients. They tended to take their pain medication despite their ambivalence about it. Dr. Meghani quoted one patient in this group: “I wish I could stop [taking the medication,] but I know I can't, so I have to deal with it.”

The third category, called “strong believers,” included seven patients. These patients were strongly in favor of taking pain medication, with one of them quoted as saying, “I don't mind taking [pain medicine] because it relaxes me and it keeps the pain down and it gives me a chance to get my rest.”

The study had several limitations, including a small sample size and lack of accounting for type or stage of illness, type or strength of the prescribed medication, and history of dependency. But the results showed that black patients cannot be put into a “one-size-fits-all” category regarding pain management, Dr. Meghani said.