Tuesday, May 19, 2015

Medical testing: is it about quality?

In her New York Times “Well” blog of April 13, 2015, physician Abigail Zuger comments upon “Quantifying Tests, Instead of Good Care”. She discusses a variety of factors that lead to physicians ordering more and more tests. In part, this is the simply the result of the advance of technology and thus the profusion of tests that can be done --  laboratory tests, imaging (like x-rays and their ever more complex cousins), and even parts of the physical examination (“Yes, little blood pressure cuff over there in the corner, that means you”) --  which sometimes can be seen as meaning they should be done. Other factors are about money. The tests cost money, a negative for patients and insurers, but they make money for the laboratories and imaging facilities and the hospitals which often own them, and frequently employ the physicians doing the ordering. Dr. Zuger notes that “Ordering tests, chasing down and interpreting results, and dealing with the endless cycle of repeat testing to confirm and clarify problems absorb pretty much all our time.”

Another impetus is our desire – patients and physicians alike – to find out what is wrong when there is something wrong. Or, when there is nothing really wrong, to perhaps prevent later disease by finding something hidden lurking inside. There are all these tests we can get! The patient may have had many of them before, ordered by another provider, or know people who have had them. They hope that something will give them an answer. The doctor may feel that there may be an answer out there that s/he might miss if a test is not ordered, or if s/he is a primary care physician that a specialist might order these tests so maybe we should do it first; after all, it sometimes seems as if one thing specialists do when we refer patients to them is order a bunch of tests that we could have. Or, and this is a big focus of Dr. Zuger, that their “quality ratings” may suffer if s/he doesn’t order these tests.

Quality ratings are measures of things that doctors should do (or, sometimes but more rarely, should not do) for patients with certain conditions or complaints; increasingly, insurers, employers, and third-party groups are assessing the quality of care that a physician delivers in this way. Are these recommendations not based on evidence? In many cases, they are. For prevention, the US Preventive Services Task Force assesses the degree to which tests may be indicated or not for different people, often based upon their age and sex. It gives them ratings: ‘A’ is strongly recommended based on good evidence, ‘B’ means there is some, but weaker, evidence to support doing it, ’C’ means there is conflicting evidence and patient preference should be taken into account, ‘D’ means not recommended (might even be harmful), and ‘I’ means insufficient evidence to assess. A smart phone app, ePSS, can be downloaded by anyone; put in age and sex and it tells you which preventive tests are recommended.

Of course, not all doctors do all the recommended screening tests, and frequently they do tests that are not recommended (e.g., PSA to screen for prostate cancer) or more frequently than recommended (Pap smears to screen for cervical cancer), or in people for whom the test is not recommended (mammograms in younger women). When it comes to diagnostic testing rather than screening, looking for the cause of something when the patient is actually ill, there is even less consensus, and often a prevailing attitude of “more (testing) is better”. One effort to combat this is the Choosing Wisely campaign begun by the American Board of Internal Medicine Foundation. This campaign asked specialty societies to identify 5 or more commonly-done tests or interventions in their specialty that should not be done. However, the same recommendations are not always endorsed by every relevant organization. For example, the American Academy of Family Physicians recommends “Don’t do imaging for low back pain within the first six weeks, unless red flags are present.” Great, but neither the American College of Radiology nor the American Academy of Orthopaedic Surgeons, arguably the groups that could make money from this, has such a recommendation.

And then there is the risk. Some of the tests receiving USPSTF ‘D’ recommendations are more than not helpful; they can lead to harm, and this is even more true of the many potential tests that can be done looking for disease. Discussing the work of a collaboration at the Dartmouth Medical School that looks at the utility of tests, Dr. Zuger notes that such iconic treatments as controlling blood pressure can lead to bad outcomes in many older people where the benefits (avoiding stroke and other complications) begin to be outweighed by the risks:  “One study found that nursing home residents taking two or more effective blood pressure drugs did remarkably badly, with death rates more than twice that of their peers. In another, dementia patients taking blood pressure medication with optimal results nonetheless deteriorated mentally considerably faster. Yet no quality control system that I know of gives a doctor an approving pat on the head for taking a fragile older patient off meds.”

This is just the tip of the iceberg. Tests cost money, and often show results that lead to more tests, and then maybe to procedures (biopsies, for example) that maybe show abnormalities that lead to bigger interventions. And, sometimes these interventions are life-saving, but not always. Or maybe, even, not often.  And they do often have side effects, some of which are not insignificant. The person in whom a series of tests identifies cancer and is then treated and then survives is almost always grateful for the testing and the treatment, although in many cases they would have survived just the same with no treatment, and without the costs both in dollars and in side effects. The classic example is prostate cancer, where the evidence of any treatment making a difference in survival is weak at best; it is either a devastating disease from which one dies, painfully, or more commonly a benign condition that one dies with but not from but which treatment seems to have little influence on. Except for the cost, and the non-trivial side effects of impotence, incontinence, and the effects of radiation on the rectum.

Increasingly, data is showing that much breast cancer is similar. As discussed in my December 2012 blog post “More on mammography: just because you don't like the results doesn't make research junk science”, a large study by Bleyer and Welch showed that, with new and more sensitive mammographic screening, many more women are being diagnosed with early-stage breast cancer. However, despite treatment, we are not seeing anything like that reduction in late-stage breast cancer, which means most of those early stage cancers would not have progressed at all. And yet every woman diagnosed and treated sees herself as a survivor who has been cured, even in those cases where progression would not have occurred. In his wonderful recent New Yorker article “Overkill” (May 11, 2015), Atul Gawande notes that we treat all “cancer” as if it were rabbits in a pen who have to be chased down before they escape, when in fact many cancers are “birds” that have flown away and are gone before we can do anything and many others are “turtles” who are not going anywhere whatever we do.

The goal of medical care is now to achieve the “Triple Aim” of high quality, patient satisfaction, and lower cost. As with many things that come in threes, it is not that hard to achieve two but very challenging to achieve all three. Patients satisfaction is important, but not at any cost. Cost control is good, but not if it seriously limits quality. One place to start, then, is with quality, and specifically not doing what is useless or even harmful as assertively as we do what is likely to be of value.

And, of course, to make sure that it is the disease or risk of disease that determines what tests are done, not people’s insurance or socioeconomic status, ethnicity, gender or personality.

Monday, April 27, 2015

Beyond Flexner: It is time to stop shoring up the bridge and figure out how to cross the river!

I recently attended the “Beyond Flexner 2015” conference in Albuquerque, NM. Originally titled “Beyond Flexner II”, it was a followup to the 2012 “Beyond Flexner” conference in Tulsa, OK, which I discussed in my June 16, 2012 post “Beyond Flexner: Taking the Social Mission of Medical Schools to the next level”. The first conference was itself in part stimulated by the 2010 publication of “The Social Mission of Medical Education: Ranking the Schools” by Mullan, Chen, et al. in the Annals of Internal Medicine.[i]  Fitzhugh Mullan, head of the Medical Education Futures group at George Washington University, was co-director of this recent conference along with Arthur Kaufman, Vice Chancellor for Community Affairs at the University of New Mexico Health Science Center. The organizing committee was a “Who’s Who” of leaders in the movement to make medical schools more accountable for meeting the actual health needs of the people of the United States, including Gerry Clancy, host of the 2012 conference in Tulsa, and several of the other authors of 2010 paper.

The attendees at the 2012 conference in Tulsa were captured in a posed photograph, crowded but with  recognizable faces. This would not be true of the nearly 400 people in Albuquerque, who also represented a much wider group. In addition to more university sponsors (including Florida International University, which will host the next conference in 2017), several other foundations have joined the Josiah Macy, Jr. Foundation, which helped sponsor the first conference as well. The bulk of the attendees were medical school faculty, with some residents and students, but others from a wide swath of those with an interest in the impact of medical school output on health were in attendance. Notably, this included people from the cooperative extension services based at our nation’s land grant universities, who have been collaborating with health sciences centers to create “health extension” programs in a number of states (The Primary Care Extension Service, July 12, 2009);  New Mexico’s HEROs (Health Extension Rural Offices) program is one of the national leaders.

There were a number of stimulating and provocative speakers, including Camara Jones, about whom I have already written, who spoke about racism and the Social Determinants of Equity. Don Berwick, founder and senior fellow at the Institute for Healthcare Improvement, and former interim Administrator of the Center for Medicare and Medicaid Services (CMS), gave a powerful talk about the direction of healthcare in the US. His most powerful metaphor was of the Choluteca Bridge in Honduras, which was so well built that it withstood Hurricane Mitch in 1995. Unfortunately, the hurricane relocated the river, so that now it no longer functions for its intended purpose! Dr. Berwick also noted that if the US spent 15% of its GDP on health care, instead of the current 18%, it will still be higher than #2, Switzerland. If the US had spent at the per capita rate of Switzerland over the last 25 years, it would have spent $15.5 TRILLION less. That is real money, and could have been used to address many of the social determinants we are always told there is not enough money to do.

Perhaps the most stirring talk was given by H. Jack Geiger, former Dean of the Sophie Davis (now City University) School of Medicine in New York. Accurately described as a “living legend”, Dr. Geiger founded the first two community health centers in the US, in Charlestown, MA near Boston and in Mound Bayou, MS. He was a founding member of the group Physicians for Social Responsibility (PSR), the US affiliate of the International Physicians for the Prevention of Nuclear War (IPPNW), and Physicians for Human Rights (PHR). In his introduction we were reminded that Dr. Geiger was once chastised by a federal bureaucrat for writing prescriptions for food for his patients in Mississippi, and told that the federal funds supporting his program were to be for treatments. His now-classic response was that “the last time I checked my medical textbooks, the treatment for malnutrition was FOOD!” He noted that the last decade might be called that of raising consciousness of the Social Determinants of Health, but that because many of these are determined by (and are currently being eroded by) the political process, called for the next decade to be that of the Political Determinants of Health. He did not mention, but I note, that while IPPNW won the Nobel Peace Prize (1985), the Nobel Prize for “Medicine” in fact goes exclusively to researchers in the basic sciences. How wonderful, fitting, and appropriate would it be to go to someone like Jack Geiger, whose life’s work had really made a difference in the health of people!

In writing about the 2012 conference I suggested that certain goals be the focus of the “Beyond Flexner” movement:
·         Diversity: How does the school produce a health workforce that looks more like American by enrolling, and supporting, a group of students that is truly diverse in ethnicity, gender, socioeconomic status, and geographic origin?
·         Social Determinants of Health: How does the school teach about and train students in, and carry out programs aimed at addressing, the social determinants of health? How does its curriculum and work invert that of the traditional medical school, which focused most on tertiary hospital-care, and emphasize instead ambulatory  care, community based interventions, and interventions on the most important health determinants including housing, safety, education, food, and warmth?
·         Disparities: How does the school, through its programs of education and community intervention, and its research agenda and practices, work to reduce disparities in health care and health among populations?
·         Community Engagement: How does the school identify the community(ies) it serves and how does it involve them in determining the location of training, kinds of programs it carries out, and in identifying the questions that need to be answered by research?
I believe they are still valid. The Social Determinants of Health (SDOH) were discussed everywhere in the conference, and Health Disparities are the central focus of addressing them, or in Dr. Jones’ phrase, the Social Determinants of Equity. Community Engagement was emphasized through the broader participation in the conference (such as the people from Extension services) and one of its highlights was an afternoon of tours of such community-engaged programs in Albuquerque. I went on a visit to the city’s International District, and the East Central Ministries, which operates an innovative clinic driven by community health workers, an Urban Farm, and a small factory manufacturing ollas, unglazed clay jugs used for low-water-use irrigation.

Diversity was certainly addressed by many of the conference speakers, including Dr. Jones and Marc Nivet, Chief Diversity Officer for the Association of American Medical Colleges (AAMC), who pointed out how poorly our schools have done. In the 1990s The AAMC had a goal for minorities of “3000 by 2000”, but in the last 35 years African-American applicants have increased by 1000 and admissions by only 250. Jose Rodriguez and his colleagues writing in Family Medicine note that African-Americans peaked at 8.1% of medical students in 1994, and was down to 7.23% in 2010, Hispanics are up to 8.25% despite a much higher % of the population, and underrepresented minority (URM) faculty in medicine has increased from 7% to 8% from 1993 to 2010 despite an increase in those same groups in the general population from 23.1% to 31.4% in the same period.[ii] In the accompanying editorial, which I wrote, I call for an immediate, dramatic, and comprehensive effort to change both the socioeconomic and racial makeup of our medical school classes.[iii]

If anything was a little disappointing to me at the conference, it was the degree to which the audience was less willing to pick up on the issue of lack of diversity. While there was applause for the comments of Drs. Jones, Nivet, and others, most of the questions and comments focused on the SDOH. These are extraordinarily important, and emphasizing the need to teach them in medical school is as well, but poverty will not be solved quickly. Diversity, on the other hand, could be; our medical school class next year could look dramatically different if we changed the criteria by which we admit so that half the class came from the lower 50% of income and we had double the percent of minorities.

Many of the conference attendees were from newer medical schools, whose goals are more tied to SDOH, Community Engagement and Diversity, and they were celebrated from the podium. But while they may deserve this celebration, the older medical schools need to be held responsible as well; unless they change their admissions practices and their goals to serve the communities, the impact of the newer schools will be only at the margins.

There is a lot to do, and to accomplish it will take a movement. Hopefully a movement growing from “Beyond Flexner” can start the process.

[i] Fitzhugh Mullan, MD; Candice Chen, MD, MPH; Stephen Petterson, PhD; Gretchen Kolsky, MPH, CHES; and Michael Spagnola, BA. The Social Mission of Medical Education: Ranking the Schools. Ann Intern Med. 2010;152(12):804-811. doi:10.7326/0003-4819-152-12-201006150-00009
[ii] Rodriguez JE, Campbell KM, Adelson WJ, Poor representation of Blacks, Latinos, and Native Americans in Medicine, Fam Med 2015;47(4):259-63.)
[iii] Freeman J, Diversity goals in medicine: it’s time to stop talking and start walking, Fam Med 2015;47(4):257-8.

Sunday, April 19, 2015

Racism and the Social Determinants of Equity: Camara Jones at Beyond Flexner 2015

At the recent “Beyond Flexner 2015” conference in Albuquerque, one of the featured speakers was Camara Phyllis Jones, MD, MPH, PhD. Dr. Jones, a family physician and epidemiologist, is Senior Fellow at the Satcher Health Leadership Institute at Morehouse School of Medicine in Atlanta, and formerly with the Centers for Disease Control and Prevention (CDC), and is currently President-Elect of the American Public Health Association, APHA. (Her election site contains a good biography, and this segment from “Unnatural Causes” a superb interview.) I was truly honored to meet her the day before (we were in the last row of a van headed to visit a clinic in Albuquerque’s International District; she told me her name and I responded with “the Camara Jones?!”) because I have long admired her work, and have used her “Cliff Analogy” for the Social Determinants of Health (SDOH) regularly in lectures to medical students, as well as in this blog (e.g., “Delmar Boulevard, Geo-mapping, and the Social Determinants of Health”, August 16, 2014; ACA after the election: Is it is the "fiscal cliff" or the social cliff that matters to people?”, November 17, 2012).

In brief, the Cliff Analogy portrays the healthcare system as a cliff face, which may or may not have a fence to keep people from falling off (primary prevention), a safety net part-way down to catch those who fall before they hit the ground (secondary prevention), and an ambulance to take them to the hospital at the bottom (tertiary “prevention”). The presence or absence of these, and how fast the ambulance comes, impacts access to health care. But along the top of the cliff, the nearness to the edge represents the social determinants of health, how vulnerable people are to falling off, how their life circumstances (poverty, housing, food, education, dangerousness of where they live) make it much easier for a gust of wind, or tripping (or a disease) to not just knock them down but throw them over the cliff.

It is a powerful and effective method of illustrating the SDOH, but Dr. Jones has other allegories that are also effective, in particular in describing the various forms of racism that exist within our society, and the impact of them on the lives and health of people. Several of these are presented in her wonderful TED talk, given at Emory University in 2014. She describes 3 levels of racism: institutionalized racism that, whether through laws or common practice, keeps its victims down in the underclass with less opportunity and hope; personalized racism, the actions and attitudes of people that perpetuate racial victimization; and internalized racism, by which members of the oppressed group come to believe in their own inferiority, that “the white man’s ice is colder”. All of these are important; efforts to demonstrate that “black is beautiful” and “I am somebody” can work to combat the psychological stigma from internalized racism, but without structural change can go only so far.

Dr. Marc Nivet, Chief Diversity Officer of the Association of Medical Colleges (AAMC), gave an earlier speech, in which he also provided a powerful metaphor, of opportunity in America being an escalator or a staircase. In it he describes the children of the privileged as having an escalator to take them to the top; even if they “bump their heads” or otherwise falter and fall back, it will continue to bring them quickly back up. Others, the children of the poor, have to climb the stairs, and when they fall it is a long and difficult way back up; they have to run very fast and are unlikely to ever catch up. This is a great way of illustrating not only the social determinants of health but of opportunity; it provides a dynamic metaphor to accompany the famous quote from former University of Oklahoma football coach Barry Switzer that “some people are born on third base and think they hit a triple”. Dr. Nivet includes his own children in those who are on the escalator; since he is African-American, this might be seen as support for the argument that the difference in opportunity is due to class (or as Americans like to call it to make it sound more random and less generational, “socioeconomic status”) rather than race.

But Dr. Jones asks us why people of some races are disproportionately represented in the lower class; she coins the phrase “the Social Determinants of Equity”. She helps illustrate this with “the Gardener’s Tale”, beginning with a (possibly true) story of when she and her husband bought their first house, with a lovely wrap-around porch with many flower boxes. In Spring, they discovered only some had soil, so they went and bought potting soil to fill the others, and planted marigolds in all of them. But some weeks later some plants were doing great, and others were struggling; it was clear that those in the old rocky soil were not on a par with those in the new soil. To be sure, some seeds in each box were stronger and doing better than others, but the strongest flowers in the poor soil could barely keep up with the weakest in the good soil.

And what if the gardener decides to plant red and pink flowers, but likes red better, and plants them in the good soil? And when they do better, s/he says “See? I knew red were better!”. And, if the flowers were perennials and went to seed and regrew each year, they would perpetuate, if not worsen, the difference, the inequity. And if the gardener said “these pink flowers are going to do poorly anyway”, and deadheaded the weakest, allowing them no chance at all? And in future generations if her children and grandchildren always grew up knowing that red flowers did better than pink? But why, someone asks Dr. Jones (not in this conference!) should the red flowers give up or share their soil?

Because, she answers (obviously, at least to many of us), the soil does not belong to the red flowers, although they have benefited from it, but to the gardener. It could easily be redistributed by her, and the flowers would have an equal chance to grow. Maybe generations of selection would take a few years to compensate for, or maybe because only the stronger pink seeds survived, they would do even better than the red given the chance to have the same opportunity to grow. We cannot be sure until that opportunity is comprehensively and completely available.

Dr. Jones’ allegories are very helpful in increasing our understanding.
  • We cannot truly improve health without addressing the Social Determinants of Health.
  • We cannot address the impact of racism without recognizing its many faces and forms, and its self-reinforcing nature.
  • We cannot adequately remediate the effect of class upon health without changing how some people and groups are disproportionately represented in the underclass, the Social Determinants of Equity.

Dr. Jones’ allegories can help us understand, but real change will take concerted and sustained action.

Friday, March 27, 2015

Matthew Freeman Social Justice Lecture and Awards 2015 at Roosevelt University

The 2015 Matthew Freeman Social Justice Lecture and Awards at Roosevelt University in Chicago were given and presented this year on March 26, 2015. The lecture was given by Carlos Javier Ortiz. Mr. Ortiz is a highly-honored photographer and photojournalist, and his presentation was therefore much more visual than many previous lectures.  Based on the photographs from his book and gallery display “We All We Got”, the images and accompanying talk focused upon the lives of poor people of color in Chicago, particularly those of families of young people who had been killed, often as incidental victims. Ortiz developed long-lasting relationships with some of these families, and his photographs document that, even with these losses, life goes on.

But it does not go on smoothly or easily. Affixed to the back cover of his book is a fold-out list, by year, from 2007 to 2014, of the hundreds and hundreds of Chicago Public School students who have been victims of gunshots and stabbing deaths. In his talk, Ortiz notes that in more affluent suburban communities, such premature deaths are rare and often kept from young people, while on the south and west sides of Chicago grammar school classes may be taken to the funerals and wakes, such as that of Siretha White in 2006 pictured below. Diane Latiker and her husband are building a memorial, brick by brick, to young people lost to violence. Begun in 2007, it has more than 370 stones, and Ortiz tell us, is behind by more than 200.

We who are not part of these communities may see them as apart; indeed one mural depicts downtown Chicago as separated from their neighborhood by almost-impassable mountains (there are, in case you wondered, no mountains in Chicago). Our news media nationally cover tragedies involving the death of white young people as at Columbine and Sandy Hook; local news may cover the accidental killings of young Black girls such as Siretha White, but the deaths of young Black men, who may have been linked to gangs, is not news. But their families, and communities, suffer, as does our whole society which affords them no future.

This theme is tied to that noted by Richard E. Wallace, one of the amazing Roosevelt students to receive the Matthew Freeman Award. Wallace, who is a father and labor organizer while maintaining a straight-A average, works with day laborers. These people awake at 4am every day to be in line to be picked up so they can work for minimum wage doing tasks from backbreaking physical labor to shipping your Amazon packages so that they can provide at least minimal housing, food, and water for their families. With this life of constant work for barely subsistence wage, they have no hope of getting out or advancing, recalling the lives of ante-bellum slaves in the South. He is one of the founding members of the Stop Mass Incarceration Network at Roosevelt, and the professor who nominated him said “I have probably learned as much, if not more, from Richard Wallace as he has learned from me.  I think he is one of the brightest and best embodiments of the university’s mission that we have seen.”
Danielle Cooperstock, the other reward recipient, is also amazing. She “is majoring in Social Justice Studies with a minor in Women’s and Gender Studies. In 2012, Danielle connected with PIRG through a transformational learning course on educational and economic inequality issues. She continues to work with this community organization and many others to this day. For the past two years, Danielle has worked as a student disability and peer mentor at the Academic Success Center. Additionally, she is a crucial leader of two Roosevelt activist groups, RISE and RU Proud, both of which motivate other Roosevelt students toward social justice goals.”

These are two incredible young people, and I had a desperately-needed sense of hope and optimism on meeting them and hearing what they have done. And I thank Roosevelt University for its explicit social justice mission and its nurturance and support of students like these two. Should you have the capability, it is certainly worthy of your support.

Sunday, February 22, 2015

Cuba: A health system designed to serve to health of the people, not the profit of a few

I just returned from a week’s visit to Cuba with a group of medical journal editors and public health people. We met with many people in the medical professions including family doctors and nurses and people from highly specialized referral centers in pediatric cardiac and hepatobiliary surgery, nutrition, and diabetes, and with faculty and leaders from the school of public health and some of Cuba’s medical journals, including the Cuban Journal of Public Health. We met with US students from ELAM, the Latin American Medical School that trains (for free) students with social commitment and economic need from not only Latin America (and North America) but the entire world.

Much has been written on the Cuban medical system, and how it is structured. One of the best recent articles is by C. William Keck and Gail Reed in the American Journal of Public Health in 2012, “The Curious Case of Cuba”.[1] Keck and Reed are, respectively, Editor-in-Chief and Executive Editor of MEDICC Review, an academic journal that publishes research and commentary from both Cuban and US (and other international) authors about the Cuban health system and health status, and is part of MEDICC (Medical Education in Cooperation with Cuba). They were also leaders of our MEDICC-sponsored trip. I will not try to provide yet another in-depth description of the Cuban health system, with which many readers may be familiar, but will rather highlight some aspects of it that struck me as particularly important, and explain why.

First of all, the medical system in Cuba is a national priority. As a socialist country, its centralized nature exceeds that seen in the more-commonly described wealthy Western European nations, and it provides care for everyone. This is a positive, obviously, but also (of course) limits the access to some elective procedures for those who would be rich enough to afford it in another society. It also, of course, limits the ability of those people to be at the front of the queue, which is a particular irritation to the privileged, high-income people who are often those most critical of any type of equitable health system. The health statistics are excellent; several indicators, including infant mortality rate (4.8/1000 in 2013) are much better than in the US.

It is also very primary-care based. Teams of family doctors and nurses are in every neighborhood (in the densely populated parts of central Havana where we were, actually every few blocks) and are responsible for the health of a geographically defined population of 800-1800 people (depending on percent of older, high need people). They spend half their day seeing people in the office, and the other half making home visits, most frequently to those who are high-need because of chronic disease or recent mothers (the nurse sees almost daily). They also live in the neighborhood, frequently in or over the clinic, and are expected to be available 24-7 for any of the patients in their community who needs urgent help. Some of the doctors in these settings are residents in the second of their two-year FM residency, and they include those from other countries whose governments permit residency training in Cuba (we met a resident from Ecuador, who would be returning to his own country).

At the next level are polyclinics, also very neighborhood-based and serving a number of family medicine practices. Staffed with a family medicine professor as well as other specialists (pediatrics, IM, OB-Gyn, etc.) they see patients referred to them by the FM practices (and send them back for continuing care) as well as provide some procedural and imaging services. All physicians complete the 2-year FM residency, and then do residencies in other specialties; about 40% of doctors are FM. There are also hospitals, emergency / urgent care settings, and several levels of referral centers. The ones we visited in Havana for pediatric specialty surgery (including transplants of livers, although not yet hearts for children), nutrition, and diabetes were the most high-level referral centers in the country. At every level the centrality of the family medicine community practice for ongoing follow-up was emphasized. Specialty doctors have great respect for this system. In addition, although they make earn more than family doctors, the difference is small, and all earn far less in relation to the income of others in society than in the US. Doctors are not in it for the money. Public health is a much more prominent part of the health system in Cuba than it is in the US, and there are strong centralized efforts to integrate it more with the medical care, and particularly primary care, system. It remains underfunded relative to medical care delivery, but the inequity is significantly less than in the US where public health receives about 3% of the health care dollar compare to 97% for medical care.

In addition to the medical care that they provide to their own people, the Cubans provide care all around the world, and train doctors (as indicated above) from all around the world. Many poor nations have their health facilities staffed by Cuban physicians, and their human resource commitment to fight the Ebola outbreak in West Africa dwarfs any comparable effort by the US or other nations (see the article “Cuba vs. Ebola” on the MEDICC webpage). As noted above, ELAM graduates several thousand physicians from other countries every year, including the US. The students from the US, selected by the organization Pastors for Peace, are typically from lower-income families and ethnic groups under-represented in US medicine. The US students are required to have at least 2 years of college, and spend at least 6 years in the medical school, plus an extra one before if they are not fluent in Spanish. They are provided free tuition, room, and board. Life is not easy, and like most Cubans – even those working in the most advanced centers, including the National Medical Library – have limited and slow Internet access, a result, apparently of the lack of access to satellites resulting in the “low bandwidth” we heard about constantly. But the graduates are expected to enter primary care and work in communities of need that are like those they come from, and despite the inability of Cuba to enforce this, most of them do. Many have completed residencies in the US and others are currently training, predominantly in primary care. They tend to bring excellent history-taking and physical examination skills, although need time to adapt to the electronic medical record and the ability to “just order a CT scan”.

The hardest part for me about the US medical students at ELAM is that they are exactly the kind of students that every medical school in the US should be aggressively recruiting: from families and communities that have not typically produced physicians, from underrepresented groups, and with a passion and commitment to provide care for those communities. It embarrasses me that they have to go to Cuba to school, while our medical schools are filled with “more of the same”: privileged, generally majority, students with much more interest in high-specialization than primary care, and much more commitment to themselves than to the needs of society.

There are a lot of problems with Cuba, and even with their health system. It is very expensive, very dependent upon physicians, and upon paying relatively low salaries to health workers. It is handicapped by limited resources in a relatively poor country, even though the largest portion of that nation’s resources are spent upon health care and education. Its poor access to the Internet and lack of money for international travel limit the ability of its health professionals to collaborate and stay on top of what is happening in the rest of the world. But what the Cuban model shows is that it is possible to have a health system based on trying to provide needed health care, relatively equitably, to everyone in the society. It starts with primary care, and everyone gets that before anyone gets more; as time and resources progress, more people get more, but still equitably. The emphasis is that health and healthcare and medical care are for everyone, not for a portion of the population. It is based upon the presumption that everyone should get what they need before anyone gets what they do not.

Advocates of a market-based model for health care in the US may insist that they are not mean or selfish, but that the market is the best model for organizing everything, including health care. Their mantra is that “the market will provide”, presumably not just profit for the providers of services, but health to the people.

How’s that working for us?

[1] C. William Keck and Gail A. Reed.  The Curious Case of Cuba. American Journal of Public Health: August 2012, Vol. 102, No. 8, pp. e13-e22. doi: 10.2105/AJPH.2012.300822

Sunday, February 8, 2015

Medicaid expansion and uncovered lives: are people meaner in the South?

I have lived in a number of places, from New York City to Texas, Illinois to Kansas. Politically and socially there are very different norms that prevail, which are demonstrated by the difference in who we elect and what policies we choose to legislate. And, yet, in all of these places people are people. They can be kind and generous or mean and selfish. As individuals, they love and care for their children, or sometimes don’t. They are respectful of others, or not. In all places. And yet it is clear that there are major regional tendencies to policy that must reflect the local and regional values even though people are not necessarily nicer or meaner. I think that my blog posts have made clear my positions on many issues, particularly those related to health and to social justice.

Obviously, self-interest has a lot to do with what people believe, what policies they support, and which politicians they vote for to implement those policies. To a large degree, it is economic – what is good for me and my family, as illustrated in the old Clinton campaign mantra “It’s the economy [stupid]”. Of course there is more than that. If people voted mostly for their economic self-interest, we would have a very different set of national policies because there are so many more poor and middle-class people than rich, and in the last decade especially so many more middle-class people descending toward poor than ascending toward rich. Many of the policies we have would only be supported by those who are both rich and selfish, the latter being only a portion of the rich. And yet, so many of our policies only benefit the very richest. When it is “the economy”, it is usually good for the wealthy and big business, but not necessarily for all of us. And it is more so in some states and regions. We are, not individually but as a group, meaner some parts of the country than in others.

Access to health care and the means to be healthy (having the opportunity to have a home, and good food and a job and a reasonable opportunity to care for the needs of yourself and your family) is one important arena in which we are meaner in some places than others. We know, for example, that expansion of Medicaid under the Affordable Care Act has varied not only by state but largely by region. Since the ACA intended people under 133% of poverty to be covered by this expanded Medicaid (paid by the federal government, 100% for 4 years and then 90%), they are not eligible for health insurance exchanges. Thus, if their state did not expand Medicaid, they are unable to get coverage. This is the map of states that have expanded Medicaid; clearly, it there is a strong regional difference:

This figure from the Kaiser Family Foundation, showing the regional focus of non-expansion of Medicaid in the Southeast, South Central, Plains and Mountain states, is included in a very interesting piece in the Huffington Post by Harold Pollack of the University of Chicago, “Martin Luther King wouldn’t be very happy with this map”, posted on King’s Birthday holiday, January 19, this year. What he is referring to is that the South, the area King was from and spent most of his time working in (much of which is shown in the movie “Selma”) is one of the areas most affected. But Pollack makes the point that it is actually much worse, and that the South has the vast majority of uncovered people because some of those geographically-large Mountain and Plains states haven’t got very many people. Other states that have not expanded Medicaid, like Wisconsin, have other programs covering a large number of those who would be eligible for an expanded Medicaid. We have seen maps of the US re-drawn to make the size of states proportional to their population, where California and Texas and Florida and New York are huge, and Mountain states tiny. Pollack asked Harvard researcher Laura Yasaitas to show the states re-drawn to have their size proportional to the number of uncovered people. The results are even more amazing:

Because of their larger population, Southern states now obviously account for the vast majority of uncovered people, with the most populous states – Texas, Florida, Georgia, and North Carolina seeming huge. The two states Kansas City borders, Kansas and Missouri, are pretty big (Missouri is the one above Arkansas, the blue keystone in the middle, and Kansas is to its west, over Oklahoma which is recognizable because of its panhandle). Montana, Wyoming, and Utah fade not because they are covering people but because of their small populations. California and New York only show up because the mapmakers artificially pretended there were a couple of thousand uncovered people so they wouldn’t drop off the map altogether.

As Pollack points out, the two states that have benefited the most in terms of fewer people being uninsured are Arkansas, the keystone mentioned above, and Kentucky, the dark blue state above and to its east. This is because these two, southern/border states, had very large proportions of uninsured as did the rest of the South, so showed the greatest increase in covered people when they expanded Medicaid. Arkansas’ expansion created poignant stories in places like Texarkana where the poor folks in the Arkansas half were now able to get coverage, while those in the Texas half were not (see the NY Times In Texarkana, uninsured and on the wrong side of the state line”, June 8, 2014). The lesson is that Medicaid expansion could benefit even more people if it were implemented in these large-population states, with real significant changes in the actual and potential health status of lower-income people there.

But they haven’t done it and are unlikely to. The political will is not present. There are anti-ACA crusaders in many states, but they are particularly prominent in the South, which already has the highest proportion of poor and needy people and the lowest levels of social services. Clearly, this has a lot to do with race – that historically and in the present many of the poorest people in the South are African-American (and, especially in Texas, Latino). This makes Dr. Pollack’s invocation of Dr. King particularly relevant. And particularly poignant. Racism has been one of the dominant themes in America, and while it certainly exists in all parts of the country, it has never been as institutionalized as in the South (remember slavery? Jim Crow?). And to those who say it is not like that anymore, we don’t have Bull Connor, or the bridge in Selma anymore, we are the New South, look at the map above.

I really don’t think that the people in the South, any more than in Kansas or Missouri—or Montana and Wyoming—are meaner than they are in other parts of the country. So why do they elect people who institute policies to make it look like they are?

Sunday, February 1, 2015

Precision medicine, trade policy and the cost of drugs: benefiting people or profit for business?

In a recent (January 29, 2015) New York Times Op-Ed, Mayo Clinic anesthesiologist Michael Joyner writes that “’Moonshot’ medicine will let us down”. What Dr. Joyner is referring to is what is now most commonly called, particularly in the large academic medical centers that have bought into it in a big way, “precision medicine” or occasionally “personalized medicine”. This is the concept that, by knowing your individual genetics, medicine can devise targeted treatments for diseases (most of the emphasis is on cancer) that will work for you, but maybe not for other people. Maybe the treatment most commonly used for the disease isn’t right for you; this would find it out.

It is a very attractive concept, and one that has clearly gained traction since the first complete sequencing of the human genome in 2003, moving from a science fiction idea to a mainstream investment by many institutions. As Dr. Joyner notes, “President Obama’s new budget is expected to include hundreds of millions of dollars for so-called precision medicine. The initiative, which he introduced last week in his State of the Union address, has bipartisan support and is a bright spot in the otherwise tight funding environment for medical research.” That is the “moonshot” part – hundreds of millions of dollars. When other funding for research is stagnant or being cut. Because it sounds cool, exciting, really like something cutting edge, a step toward the day when disease will no longer bedevil the human race. However, Dr. Joyner adds: “Unfortunately, precision medicine is unlikely to make most of us healthier.” Bummer.

Maybe he is wrong. Maybe the medical centers investing heavily in precision medicine, and the federal government which will fund it (of course, the “investing heavily” is not unrelated to the “hundreds of millions in federal funding) are right. “Star Trek” here we come! But let us look at the evidence that Dr. Joyner presents. He notes that most common diseases that affect people, even those with clear association with families and thus likely genetics, such as Type II diabetes, are not the result of a single or even a few genes that could be targeted if they could be fixed. There are multiple genetic characteristics that impact whether someone has a tendency to get DM2. Moreover, whether it actually occurs is a result of a complex interplay between those genetic risks and actual behaviors such as diet and exercise. He argues that it is obesity, caused by behaviors but certainly abetted by social changes in our lives, jobs, and easily availability of cheap high-calorie food leading to obesity, that has been the major culprit, given that DM2 (and obesity) is an epidemic of the last half-century, therefore not a result of any genetic change. In addition, even when there are genetic factors for differences between people in their response to treatment, it turns out that these do not explain most of the difference (“missing heritability”), such as in response to the anticoagulant warfarin (a so-far failed effort to use precision medicine to choose treatment). Treatment of chronic diseases like cystic fibrosis by genetic intervention has been unsuccessful, and cancer (like microbes) mutates a lot faster than genetically normal cells.

Joyner also raises the very real concern that people’s behaviors will change in ways that work against their health when they learn their genetic risk. Some people will use the information that they are at lower genetic risk to adopt risky behaviors. This has been described in many areas, everything from people with negative cardiac tests continuing to smoke and overeat to men who have had negative HIV tests and circumcision to decrease their risk of spreading HIV increasing their unsafe sex practices. He also notes that the opposite test result, finding yourself to be at greater genetic risk, can also lead to unsafe practices because you figure you’re doomed anyway. In addition, he notes that there are some people (“worriers”), “…who might embark on a course of excessive tests and biopsies ‘just in case.’ In a medical system already marked by the overuse of diagnostic tests and procedures, this could lead to even more wasteful spending.”

The main message here is only in part that “precision medicine” is something whose time has not yet come and may or may not ever come. More important thing is that, despite this, the government is planning to invest hundreds of millions of dollars in it. Most important is that money is not being spent on implementing treatments for conditions that we do know how to treat. People who are poor or uninsured cannot access many already available – and often incredibly expensive – treatments for diseases like cancer (see my piece “Squeezing the needy: a truly flawed financing system for healthcare”, March 2, 2013) or hepatitis C or many neurologic diseases. “Precision medicine” treatments are certainly going to be even more costly. In addition, we do not spend the necessary money to address the social determinants of health--housing and food and warmth and education--that make more of a difference in health than all of health care.

Indeed, we invest large amounts of money, public as well as private, in programs that effectively make our health worse. Sometimes this is in subsidies to major environmental polluters (BP, anyone? How about fracking and the Keystone XL pipeline?), and sometimes it is more direct, when we actually invest government funds in making treatments more expensive and less accessible to people, albeit to the benefit of the drug companies? Noted economist Joseph Stiglitz takes this on in another recent Times Op-Ed, “Don’t trade away our health” (January 30, 2015). He describes how the US Trade Representative, who negotiates trade agreements “supposedly on behalf of the American people”, is in fact consistently working on behalf of big corporations. In the case of the Trans-Pacific Partnership, this will mean increased obstacles to lower-cost generic drugs by making competition more difficult.Just the availability of generics drives prices down: In generics-friendly India, for example, Gilead Sciences, which makes an effective hepatitis-C drug, recently announced that it would sell the drug for a little more than 1 percent of the $84,000 it charges here.”  This competition should be encouraged; it is the essence of capitalism. But our trade representative is representing big business, not people.

Of course, high drug costs are already a reality. On January 28, 2015, the Times’ Business Section previewed a study coming out in the New England Journal of Medicine from Harvard. “Study finds HIV drugs priced out of reach”. Much of the great advance made against HIV in the last few decades come from effective and more tolerable drug regimens. Atripla, for example, is a once-daily combination of 3 drugs (2 made by Gilead, one by Merck), that is extremely effective. But this study shows that the “flexibility” available to insurers under ACA will mean that folks with worse insurance (usually poorer people) will have to pay $3,000 a year more for Atripla than those with better policies. Again, the poor pay more.

Precision medicine may sound good, and certainly cool, and sexy. It may even benefit some people, if at very high cost, in the future. But right now, today, there are lots of conditions we know how to treat and lots of people who are not getting that treatment because they don’t have the money, are not desirable, have diseases not in the most preferred “product lines”. And we are spending federal money on making some of the drugs that we have that we know are effective less available.

Despite publicity about or funding for precision medicine or any other “new idea”, the fatal flaw is that our health system is not about improving our health, it is about profit. This is intolerable.

Sunday, January 25, 2015

Our health is going downhill: poor public health and poor attention to the social determinants

“Our health is going downhill” shouts a headline in the Kansas City Star, January 4, 2009. The local take of this article, by Alan Bavley, was the poor performance of Kansas and Missouri, the two states served by the Star, on the 2014 report on America’s Health Rankings, published by the United Health Foundation, the longest-running ranking of public health status in the nation, since 1990. Bavley emphasizes that both states have dropped significantly in those rankings; Kansas was 12th in 1990 and is now 27th; Missouri was 24th in 1990 and is now 36th.

This leads to a lengthy discussion of why both states have dropped, mainly attributed to a lack of investment in public health, and how there is a geographic disparity, with states on the coasts doing overall better than those in the Midwest: “What explains this dramatic difference between the coasts and the Midwest is broad investments on the coasts in things that make communities healthy,” Bavley quotes Patrick Remington of the University of Wisconsin. What this misses, however, is the even worse news that is hidden by “rankings” data. While in rankings of states there will always be a #1 (in this case, Hawaii) and a #50 (you guessed it, Mississippi) this hides the fact that, overall, states have gotten worse over this 25-year period. The graphs in the print edition of the Star (not included in the on-line edition) show the decrease in rankings noted above for the two states over time. However, on the “America’s Health Rankings” website one can not only look at the map showing relative state rankings but also click on each state and see how its absolute health ratings have changed over time.

Hawaii, ranked #1 in 2014 (Vermont is ranked #1 for the whole 25-year period), has nonetheless had its health status drop quite dramatically since 1990, while Mississippi, #50, has actually slightly improved. Locally, Kansas’ health status has dropped significantly consistent with its slippage in the rankings, but Missouri’s, after a big dip in the intervening years, is about the same as it was in the mid-1990s, despite its lower ranking. How can this happen? How can Missouri drop 12 places in the rankings despite having about the same health status if the top-ranked states are getting worse? The only explanation is that the gap was even greater in the past, and that some states in the middle, such as Illinois (#30) and Pennsylvania (#28) have gotten better while Missouri has stayed the same. Hawaii has dropped from a rating of +0.7 to +0.3, while Mississippi has gone from -0.4 to -0.3. Dr. Remington’s comments may be accurate, but they were more accurate in 1990, and since then states have seen a race to the middle, if not the bottom, in terms of public health.

The rankings above are the “all outcomes” rankings from the United Health Foundation studies. They are composed of several subcategories. One component lowering these overall outcomes is the obesity rates, which have risen nationally from 11.6% in 1990 to 29.4% in 2014 (!) as well as in every individual state. Diabetes has risen nationally from 4.4% to 9.6%. Physical inactivity has stayed relatively constant, but distressingly high, at nearly 75%. On the other hand, the last measure, smoking, has gone down nationally from 29.5% to 17.6%, but has tended to stay the same over many years more in lower-ranked states, such as Mississippi, Missouri, and even Kansas.  The study ranks senior health separately, but this tracks pretty well with overall health; Hawaii is the best, Kansas is 25, Missouri is 42, and Kentucky replaces Mississippi (#47) as the worst. The study also examines rankings for a variety of other characteristics, some of which are different for the overall population and for seniors. They include chronic drinking (seniors), binge drink (all adults), depression (seniors), etc., as well as societal measures which might impact or “confound” health status including education level, percent of “able bodied” (no disability) adults and percent of children in poverty.

The study also provides us with information on health disparities, obesity levels by different sub-populations, based on education, race/ethnicity, age, gender, urbanicity, and income. Two non-surprises: the South and South Central regions do the worst, and the problem is greater for those with lower education, non-white race/ethnicity, and lower income; urban status and age have less impact. In terms of educational impact on health disparity (the difference between the highest and lowest educated in terms of health status), things change: Hawaii is still #1 but Mississippi is #2, while California is #50! Unfortunately, for many of the states with both low overall health status and low disparity, it means that even the better-educated have poor health status.

So what do we learn? Yes, as Dr. Remington points out, some parts of the country generally do better than others (although identifying these as the Northeast , West, and North Central  regions is more accurate than saying “the coasts”), and the South and South Central regions tend to be worse. Yes, as Mr. Bavley highlights, both Kansas and Missouri have significantly slipped in the relative rankings. But we also see the whole country getting worse, particularly with regard to conditions such as obesity and diabetes. And we see the most dramatic drops in certain states, not only Kansas but Wisconsin (down from +.38 to barely positive at all, +.07). The people interviewed for the Bavley article in Kansas and Missouri, as noted above, cite inadequate, and decreasing, spending on public health as the reason.

It is certainly one of the big reasons, along with a consumer society that encourages consumption of high-calorie, low nutrition foods. And a car-based society that makes exercise a specialty activity, more available to some than others, rather than part of life. And a terrible economy where a shocking number of people don’t have jobs and others have to hold down two or more to make ends meet so have little time for exercise. The other huge reason are those “social determinants of health”; the impact of poverty, racism, poor education, inadequate housing and food. The social structure and social support for the most needy in the US has never been adequate, and is eroding, more in some states than in others, sometimes on purpose (because of political beliefs) and sometimes by a (possibly) more benign neglect.

Some of it is the chronic problem of public health, that its successes are the absence of disease and thus less obvious. It is easier to feel grateful for treatment of a disease we have contracted than, say (as I have often said before) to be grateful each morning that we don’t have cholera because we have clean water. It is, perhaps for some, easier to think we don’t need to vaccinate our children when diseases that the vaccines prevent are no longer in evidence. But it is a fatally flawed analysis. When a good has resulted from doing effective preventive efforts, the solution is to keep up our efforts, whether vaccination or public health.

And cutting back on our social safety net is a good prescription for worse health.

Sunday, January 18, 2015

Free speech, religious belief, and facts: how does it affect health?

The massacre at the French magazine Charlie Hebdo was shocking and horrible, as are the massacres and atrocities that occur regularly with less immediacy to those in the West, such as those committed by Boko Haram in Nigeria. The most positive result was the massive outpouring of support for free speech, for being able to say and print what you want even if it offends people. And, I would add, particularly if it offends the powerful, which Charlie Hebdo also did. More than a million in the streets of Paris saying “Je suis Charlie” (“I am Charlie”), with more than 40 heads of state in attendance, even if they didn’t actually lead the march, but were photographed together on a protected side street. And even if many of them sponsor severe repression of free speech in their home countries. 

The inclusion of Israeli Prime Minister Benjamin Netanyahu was particularly problematic given the violently repressive policies of his government, but given that the companion attack was on a kosher supermarket where four Jews were killed, the symbolism was important even if a lightning rod for (largely just) criticism of Israeli government policy. Less appreciated was the message from Netanyahu that French Jews should all come to Israel, and more appreciated were the sentiments of French Prime Minister Manuel Valls that ‘France Without Jews Is Not France’, and the demonstrators, most of whom were not, who carried signs that said “Je suis juif” (“I am Jewish”).

But the necessary condemnation of terror, and moves to avert it, along with the necessary condemnation of anti-Semitism and the conflation of Jews with the actions of the government of Israel (or the conflation of Islam with the actions of Islamic terrorists) does not solve the problem of communication, that people see “truth” so differently. I don’t know that I can offer much more insight into the conflict of seeing truth through the lens of religious doctrine (and of course some people and groups’ interpretation of religious doctrine) and a “liberal” concept of the value of free speech. I was interested in the perspective of Maajid Nawaz, a British Muslim who became a radical Islamist at 16, served 4 years in an Egyptian jail where his readings changed his perspective and later founded Quilliam, an anti-jihadist think tank in London, expressed on NPR’s Fresh Air. Asked by host Terry Gross how he saw himself as the same person, given his loss of relationships including family and friends since his “conversion”, Nawaz spoke about commitment to justice. He said it was the blatantly unjust treatment of Muslims that motivated him to fight as an Islamist, and the same commitment to justice that makes him oppose terrorism. Ideologically, I think that this is a good start.

 Most countries, including France and the US, have a mixed relationship with free speech. In the US (which I know much better), many people not only support free speech for positions that they agree with but also positions that they can tolerate listening to. Of course, however, true support for free speech means support for speech you abhor, hate, despise, think dangerous. Not, of course, the same as action (“your free speech stops just short of my nose”), but certainly includes free assembly and demonstrations to express views. If one’s religious views include opposing anyone’s right to criticize your religion (or, even more, as illustrated by the Inquisition or ISIL’s massacres of Yazidis, not adopt your religion), you are clearly endorsing a society antithetical to free speech. And, of course, with the grossly immoral series of US Supreme Court decisions that money is speech and that corporations are people who can exercise that “speech”, the entire concept of free speech in our country is perverted.

Closer to home, and closer to the usual themes of this blog, health and social justice, we see again how beliefs not only threaten free speech but threaten our ability to act as an honorable and just society because groups of people see things so differently. The reasons given are many: our social isolation from groups of people unlike us (residential segregation by race and class and age and educational level), our ability to receive “customized” news, where what we watch on TV or find on the Internet is that which agrees with what we already believe. When people hold views based on their faith, it may be difficult or even unreasonable to expect to change it; this is what “faith” is. However, when people hold views that are not religious and are demonstrably wrong in the face of the facts, and those beliefs are held as firmly as those that are religious, and those beliefs threaten the core well-being of other parts of our society, we would hope that they could change.

I have often written about the Social Determinants of Health. These are the conditions of people’s lives that make them more vulnerable to illness, less likely to be able to prevent it through both health screening and living in places and circumstances in which prevention is possible. For example, not near areas of high pollution, not in poor quality cold housing, not in no housing. To have shelter, and decent food, and the opportunity for education for themselves and their children. All the things that characterize their lives and come before their access, or lack of access, to the health system comes into play. If we are to improve the health of the American people, we must not only provide equitable access to health care geographically, financially, and socially (with language access and caring and actual interest in people’s health) but also address those social determinants that disadvantage so many in the pursuit of their health.
And then I read the results of a survey by the Pew Research Center that says a majority of well-to-do Americans think that poor people “have it easy”. Widely reported, including by the Washington Post which leads with “There is little empathy at the top”, and CNN, which reports “54% of those with the greatest financial security believe thatpoor people today have it easy because they can get government benefits without doing anything in return’…Only 36% of the wealthiest say ‘poor people have hard lives because government benefits don't go far enough to help them live decently.’" I want to say this is unbelievable, but I have to believe it is true that they think this. I am, nonetheless, aghast that they could think this. What world do they live in? Is it really true that their only contact with poor people is on TV news, Fox News at that? Have it easy?

Would they want to test that? Live like poor people for a while? Even knowing that – unlike real poor people – they could return to their comfort in a month or a week, would they be able to tolerate it? Not being able to pay their bills, not have heat, not have decent or sufficient food, not be able to afford the doctor, not be able to take off work without losing pay to go to one even if they had health insurance? I think – I know – that if they did they would feel differently about it being easy to be poor. But while there is great value to “walking a mile in someone else’s shoes”, there is a way to know what is going on without even doing that. It is called opening your eyes, looking at the facts.

Even when they are uncomfortable, even when they challenge your beliefs, or more importantly your sense of self-entitled comfort. To not do so is part of no one’s religion. This is the responsibility of free people. 

Sunday, January 11, 2015

Belief vs. "truth": how people often make medical decisions

In a fascinating article in the “Medicine and Society” section of the New England Journal of Medicine, “Beyond belief—how people feel about taking medication for heart disease”[1], Lisa Rosenbaum discusses some of the reasons that people do not take medicines prescribed for them by doctors, really for any condition, not just heart disease. These reasons go beyond the obvious ones of personally experiencing side effects and not being able to afford them; indeed, she starts out discussing the fact that folks don’t use aspirin, a very cheap drug, even after having been diagnosed with coronary heart disease, for which the evidence of benefit is very strong.

Rosenbaum addresses a number of reasons, beginning with simple belief. A friend tells her that “My parents [whom Rosenbaum describes as “brilliant and worldly”] are totally against taking any medication”. Another person she meets, prescribed a “statin” (an anti-cholesterol drug), has no intention of taking it and indeed expresses disdain that is “raw and bitter” (the disdain, not the pill). For him, it is tied to the suffering he saw his sister endure when taking toxic anti-cancer drugs. Her hairdresser suggests another reason: taking medication means acknowledging that you are sick, and people don’t want to acknowledge that. He says that he gives his grandmother her nightly medication by telling her they are vitamins—after all, vitamins are to make you healthier, not treat your sickness.

Rosenbaum tells more stories, relating more reasons, but most come down to a belief, almost to an unchangeable worldview. Some of the issues seem to be semantic. People do not want to take “chemicals”, but will take vitamins. Connotation, and the “frame” that people put around words and concepts (sickness, drugs, natural, chemical, etc.) are very important. Of course, they’re all chemicals, and of course anything (“natural” or produced in a laboratory) that can have a biologic effect (good or bad) can have other effects (good or bad).  People sometimes cite the side effects of drugs even when they haven’t experienced them but have read or heard about them, and credit them with more importance than the beneficial effects. While some people have always made decisions based on creating a parallel to what happened to someone they know, the Internet has probably magnified the universe of people they “know” and stories that they “hear”.

Perhaps the scariest reason Rosenbaum points out is that the success of medical treatment has led people to minimize, in some cases,  the seriousness of the disease. As a cardiologist, she points to acute myocardial infarction (heart attack), which used to require 4-6 weeks of hospitalization, and now often has people out of the hospital in 24 hours. She talks to a person who contrasts it to the flu, which “can knock you down for days or a week or two, [while]the heart attack, once they do the thing, you’re in good shape.” And yet, “once they do the thing”, whatever it is, stents or clot lysing (presumably not yet bypass, which does require a longer hospitalization) and you feel better, you still have the disease; only the use of certain drugs along with diet and lifestyle changes can modify the trajectory of the disease. But the latter are hard, and maybe we don’t want to take drugs. Because, you know, we are feeling better.

I admit to initially feeling anger, hostility, as I read the “reasons” that these people would not take medicine, feeling that they were stupid. I don’t mean that I was angry that they don’t take medicine; this is their decision. In addition, there are lots of important reasons to be wary of taking medicines that go beyond personal experience with side effects. Not the least of these is the fact that they are heavily marketed by drug manufacturers, who are in business solely to make a profit, and regularly invent new “diseases” that “need” treatment in order to market their drugs and make money. In addition, “indication creep” (which I have discussed before, The cost of health care: Prevention and Indication “creep”, drugs, and the Sanders plan, June 25, 2011, particularly citing a piece by  Djulbegovic and Paul, “From efficacy to effectiveness in the face of uncertainty: indication creep and prevention creep”).[2] This means that a drug, which is found to be effective and relatively safe for a certain condition, at a certain severity level, in certain people, starts to be used by physicians (often encouraged by the manufacturers) for other people with less severe levels of conditions, and sometimes for other indications for which efficacy has not been proven. For example, starting drugs for cholesterol at levels below which treatment has been shown to reduce mortality, or putting younger (or older) people on treatments only shown to benefit older (or younger) people, or men or women.

Indeed, this appeals to another system of beliefs common in people (including doctors), that if a little is good, more is better; if reducing cholesterol in people whose level is above “X” is good, why not in people whose cholesterol is a little below “X”; if getting your average blood sugar below “Y” is good, why not a little lower still; if aspirin is good prevention and reduces death in men who have coronary heart disease, why not use it in men who don’t but otherwise look a lot like men who do? This sort of belief may lead to behavior opposite of that described by Rosenbaum (that is, taking medication when it is not of value rather than not taking medication that is likely to be of value) but it stems from same root—making decisions based on beliefs rather than evidence. And it is not uncommon to see both behaviors manifested in the same people: someone who would “never” take “artificial chemicals” (regulated drugs) into their body who ingests large amounts of unregulated chemicals (labeled as “natural”). The apparent contradiction is non-rational to me but makes sense to them.

I often—maybe usually—agree with those who say “less is better”, such as Ezekiel Emanuel in his New York Times op-ed “Skip your annual physical”.[3] But I hope that I do this when, as in the case of the annual physical, the evidence does not demonstrate benefit, and the cost is high, as it is for many heavily-marketed drugs. And, of course, my anger subsides as I realize that I often feel the same things, and maybe even sometimes act on them. I don’t want to be a sick person, certainly not one with a chronic disease (it’s bad enough to have the flu!) and taking a medicine for a condition labels me as such. I don’t want to take medicines just because they “might” help (prescription or over-the-counter, made by traditional pharmaceutical manufacturers or “natural” companies) if there is not good evidence, and I don’t want to experience unpleasant side effects. But I do take the medicines that have been shown to benefit people like me, with the same or similar risk factors, and even put up with some side effects (e.g., mild myopathy from the statin).

I am not going to change anyone’s worldview, no more than Dr. Rosenbaum is likely to change that of the “brilliant and worldly” friends of her parents. And I am certainly not going to become an advocate for treating for the sake of treatment, or being a flak for drug companies. But if there is strong evidence that taking a drug (in the lowest effective dose) for a condition that I in fact have (denial or not) is likely to have a “patient-important” (meaning lower risk of premature death or better quality of life) outcome, and I personally do not experience serious side effects, I will take the drug.

The key issue here is not making decisions to do, or not do something (have a physical or take a drug) because of a general belief that such things are good or bad for you, but rather to evaluate the evidence of how it might benefit or harm you, and to make a decision that balances these filtered through your own value system, how much you value the potential benefit or harm that might come.

To me, this is a rational approach.

[1] Rosenbaum L, “Beyond belief—how people feel about taking medications for heart disease”, NEJM 8 Jan 2015;372(2):183-87
[2] Djulbegovic B, Paul A., From efficacy to effectiveness in the face of uncertainty: indication creep and prevention creep”, JAMA. 2011 May 18;305(19):2005-6..
[3] Emanuel E, “Skip your annual physical”, New York Times, January 9, 2015.

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