The problem of trust in medicine

 this discussion is about the lack of trust in the black inner city community and it is about a community outreach to get high risk black people to be willing to take the covid vaccine.

A lot of what she discusses is true, and we also faced the same problem in the IHS....which is why we had Indian preference in our employees, so that they would be treated by health care providers who understood their cultural nuances (e.g. no eye contact, too shy to ask questions, and no that isn't a grimace but because like Pinoys they point with their lips, not their hands)... and actually why the IHS was started in the first place: so that docs could understand the culture and stay long enough to get trusted.

Alas, in many areas the IHS is a mess because of red tape and understaffing and the difficulty in keeping within the budget. But that's another discussion for another essay.

in the video, the doctor mentions the Tuskegee experiment, which is still remembered in the American black community. 

The back ground is that when treating syphillis required a toxic treatment, should the doctors treat people without symptoms to prevent tertiary syphillis in 20 years.

The problem however was that when penicillin became available in the early 1940s, it was found to be a good and non toxic treatment. However, after this was known, instead of offering the "control" group, i.e. those not treated, a cure, the doctors doing the experiment just let them remain untreated. 

When I was an intern, I had a patient who had not been treated and he had a syphillitic aortic aneurism 

back then, open heart surgery was init's infancy, so essentially this could burst at any time and kill him: and he faced premature death because some scientist decided the experiment was more important than the actual life of the patient. 

This of course was not the only ethical experiment on minorities. 

When I worked in northen Minnesota, we had a patient on dialysis because of non treatment of a strep infection caused acute GN. some details here. 

an earlier epidemic was stopped by visiting and aggresively treating every single person with impetigo. But this time they only treated the cases where the impetigo was bad enough to go to the clinic (which in some cases was 40 miles away by dirty road)... so some of the mild cases of impetigo were not treated and caused episodes of acute GN...

In 1970, the Department of Defense awarded the University of Minnesota Medical School $88,7251 to continue research begun in 1954 on the biology and epidemiology2 of staphylocci and streptococci, the bacterial agents of the diseases impetigo and nephritis. This investigation involving hundreds of thousands of dollars has been carried on at Red Lake Indian Reservation. The Reservation residents were not treated as patients to be cured of bacterial infection but as a source of experimental data.

italics mine. 

And the article also seems to blame the victim for being dirty, whereas the problem was not just lack of running water to wash but because there was a genetic photo toxic ecsema in the tribe that got infected easily.

But minorities are not the only ones who faced such medical bias: The handicapped and those with mental disabilities also were seen as ideal patients for experiments. Forbes article on the Hepatitis B experiment at Willowbrook hospital for the retarded. The doctors justified the experiment because it was done to find about immunity to make a vaccine, but I also should note that in such institutions, that hygiene was a problem and most of the patients would have been infected with Hepatitis B anyway: But that doesn't justify giving the virus to these people.

another less publicized cases involved non treatment decisions for children with meningomyelocoel a severe form of spina bifida, a condition where the lower spine and spinal cord doesn't close, and the child is born with a sac on the spine, and often the child developed paralysis below the level of the lesion and hydrocephalus was another complication of the child if he lived.

At the time (1980s) some docs, knowing that these kids would be paralyzed and mildly retarded, started suggesting doctors not treat the lesion. BabyJaneDoe was one case,  and the press and alas the court system painted those trying to get proper treatment for the child as cruel and interfering in something that was none of their business. (i.e. the articles implied that the evil Reagan (/s) and Dr. Koop who took the parents to court, should have stayed out of the decision, and to the shame of the court sytem, the court agreed with the parents).

and I remember how the NYTimes had lots of articles and letters to the editor saying the government had no right to interfere with the parent's decision. 

Ironically, the baby lived and the sac made nursing difficult so it was removed. This 1990 WaPost article notes that the child was well and attending kindergarten, and that a lot of the press reports about her condition were exaggerated:

(the parents were told that) In grim sum, her quality of life would be so low -- the press implied -- that her departure would be a blessing to her parents and, of course, to herself.

The only problem with this prognosis was that a number of leading pediatric neurologists -- based on what they knew of Baby Jane Doe's condition -- told me it wasn't true. I talked with, among others, Dr. David McLone, chief of neurosurgery at Children's Memorial Hospital in Chicago. He said that his extensive experience with spina bifida children gave him confidence that if she were treated at his hospital, she would grow up to have normal intelligence and would be walking, probably with some bracing.

Sigh. Essentially it was the parents "decision" but what is not noted is that they were essentially deciding what to do for their child based on the doctor's information and those pushing the pro death agenda never let anyone hint that information might be biased.

Those parents were educated so could get several opinions, but this might not be true for lower middle class folk and especially with minorities whose basic medical knowledge is lacking (due to poor public schools, another problem that should be addressed but it out of my line of expertise).

How this works in reality is shown when a double blind study was done in Oklahoma City Childrens' hospital on which babies born with Meningocoels should be treated.

It was decided which kids should be treated based on certain criteria including the size and location of the lesion and also the educational and economic status of the patient's parents. 

Most of the non treated patients died within six months... and of course the treated ones lived but were paraplegic and mildly retarded. The study didn't make a big controversy at the time because a lot of doctors figured the death of a crippled child was a good thing? (nowadays, of course, we are more sensitive to such children; most are aborted in late term abortions where there is no legal problem).

So anyway, the OKC study was published and did not cause any controversy.... until....Years later, a black doc ran across the study and found that most of the patients in the non treatment category was minorities, mainly from the black community there. This article discusses the experiment.

Racism? The docs who made the criteria for "non treatment" would say no: they wouldn't say it of course but it seems they felt that poor minorit folk were too poor and too dumb to give proper care to a crippled child. And years later, when this was publicized, some of the parents when later interviewed said they were not aware that their baby would have lived if given a chance to get life saving surgery.

Sigh. 

and similar "non treatment"decisions are pushed on minority patients all the time, which is why so many in the minority communities refuse to sign a "living will".

When I was in the IHS, we had one patient with behavior problems from frontal lobe damage and sent her to be evaluated by a neurologist. Because the family was traditional, they brought a cousin who was a nurse to help in communication.

Ah, but the neurologist didn't spend any time actually evaluating the patient or asking about her problems: He spent the entire consultation trying to pressure the family to remove her feeding tube which of course would kill her. He used lots of "quality of life"arguments that presumably his affluent white patients would find logical.

The Objibwe family however said nothing, but on the way out, the nurse/cousin turned to the physician and said: That's the difference between us and you white folks. We don't kill our old folks.