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We have a professionalism exercise within the Health Sciences division at the University of South Alabama of which I play a small part. This exercise places students from nursing, allied health, pharmacy, and medicine together in a room and they are given a case scenario with no correct answer but one in which a difficult decision will almost certainly need to be made by the treating clinician. The case that I want to bring to your attention today is one not involving a breast mass. In this case, the patient reports that she has a lot of fear and concern about cancer and requests that her clinician order a mammogram to assuage her fears. The only problem is that her insurance will not pay for a “screening” mammogram, only for one in which a breast mass is detected on physical exam. In the educational exercise, students are assigned to either defend “lying” about a mass to get a mammogram paid for or “denying” the patient access to a mammogram paid for by her insurance. At the end of the exercise, the students vote on what they would do (mostly stick it to the insurance company) and then we all go home to wonder what we will really do when the time comes.
Susan Reverby has a new book out about the Tuskegee Syphilis Study and she happened to be in Mobile this past week to lecture about it. The study itself was a longitudinal prospective study in which African-American men from rural Alabama who had been identified as having latent syphilis during a previous study and were not treated adequately (because there were questions about the need for treatment and no money for treating these gentlemen) were identified. They were then followed over time to see what happened to them by the Public Health Service. The Public Health Service attempted, over the intervening 40 years, to withhold or deny treatment to the subjects even after penicillin was in widespread use. The study was made public in 1972 and created a scandal ultimately resulting in an apology offered by President Clinton to the survivors on behalf of the United States in 1997. The study has had a lasting impact on the black community with a profound impact on HIV/AIDS detection and treatment. In Bad Blood, another book about the Study, it is reported that community workers report mistrust of public health institutions within the African-American community. Alpha Thomas of the Dallas Urban League testified before the National Commission on AIDS: “So many African-American people I work with do not trust hospitals or any of the other community health care service providers because of that Tuskegee Experiment”
What does this have to do with health care reform and people doing what they can to get tests paid for? Dr Reverby’s review of the medical records, the writings and oral histories of the time and subsequently by the “subjects” and the investigators has led her to another conclusion as well. She has found that “the men thought of themselves as patients obtaining needed medical care for what was known as “bad blood” from the government’s doctors. The PHS physicians never told these men they were actually research subjects being followed in a “no treatment” study. Instead, the researchers explained that the aspirins, tonics, and diagnostic spinal taps given were “free treatment.” In a county with only 16 doctors whose prices the men could rarely afford, a government program of free care enticed them. The study’s nurse kept visiting the men’s homes and helping them to get medical care for other ills. The study’s subjects and controls were also promised money for decent burials in exchange for the use of their bodies for autopsy after their deaths.” She also believes it is likely that many of the “investigators” such as Dr Reginald James and Nurse Rivers may have helped to get these gentlemen needed care under the guise of the “study.”
Her findings are that “these men living in rural Alabama came forward for treatment not because they were uneducated and easily duped by their government, but because they needed health care for themselves and their families. They (as with increasing numbers of Americans today) had no real access to the medical care they required, could not pay for what was available, and had to find it where possible.
She and I both feel that this study is as much an object lesson on the lengths people will go and the harm they will expose themselves to as they seek out adequate health care as it is a lesson in the ethics of research. When President Obama argues for affordable and accountable health care, it is in the hopes of creating a system which will keep people from having to sell their health in order to afford health care. When medical bills account for 62% of bankruptcies, it is clear that people will endanger their long-term physical and financial wellbeing to acquire good health. Government almost certainly should play a role in helping its citizens obtain and keep quality health care (as even Bill Kristol admits it can do).