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Medical Apartheid

In Books, medicine on June 20, 2011 at 8:30 am

I just finished reading “Medical Apartheid: the dark history of medical experimentation on Black Americans from colonial times to present” – Wow, what a read!  Major kudos to Harriet A. Washington for having the courage and gusto to pursue such an expansive project in the face of such resistance.  Our nation’s ability to bury, in an attempt to erase, undesirable history is something else.  I hope that one day (sooner rather than later), someone will turn this work into a documentary. I was searching a few months ago for a documentary our SNMA chapter could show on the historical basis for the mistrust of the medical community observed in the African American community – none exist that don’t focus solely on Tuskegee, shame. Spike Lee, where you at?

I would urge any medical student to read this book – not just African Americans and not just those interested in medical research.  Why?  Well, as can be easily observed, many of our nation’s medical schools are situated in predominantly minority communities.  As such, the population medical students will be honing their skills on are minorities, and since we are underrepresented in medicine, I question the knowledge the majority has about these communities. Personally, I have found my own formal education on minorities’ plight in our nation’s history lacking…  Furthermore, logic tells us that by having an appreciation for the history of the community we serve can better inform our communication with said community.  In other words, if the Black community is untrusting of the medical community (Washington uses the term iatrophobia = fear of medicine), there might be ways we adjust our delivery to make them more receptive to our message so that we can help eradicate those fears instilled from decades of abuse and exploitation from…well, us. Makes sense to me.  How can you possibly expect to slay a dragon if you don’t know what it looks like?  You have to have some idea of the beast you’re going to face to adequately prepare to beat it… And let it be known that this beast of distrust has a very sound basis and is contributing to the vast health disparities observed in our nation.

I think what surprised me most in this 400 odd-some pages of this book is a 3-way tie:

  1. How many other atrocious studies of similar duration were conducted while the notorious Tuskegee syphilis experiment was occurring.  From XYY experiments with young Black boys to government-engineered disease-ridden mosquitos bred and released, en masse, on certain Black communities in the South, leading to illness and death.
  2. How many of these breaches of trust occurred up North, where I was raised to believe that we were “more liberal and socially advanced than the antiquated South” – false. I do think, overall, the North tended to treat Black populations a bit better than the South (ex: “The Mississippi Appendectomy“).  Actually, I take that back – it seems that the North initially left Blacks alone (or were more prone to use them as a last resort vs the cheap lab rats physicians of the South described Blacks as), but something happened where post-1960/70 it seemed that Northern medical schools and researchers found it ok to conduct experiments that were largely non-therapeutic, without consent and/or informing of participants, and maybe even coerced when involving children and inmates.
  3. The modern-day exploitations of Black Americans by the medical community. So, I went into this book knowing that I’d be a little nauseous reading about experimentation on slaves, but didn’t expect to be so blown by the exploitations in the past few decades (by prominent medical institutions), both in the US and in Africa.  I mistakenly thought “we” had learned and grown from “our” past, and were better than that.  Granted, the US is doing a much better job than they were in the ’70s at shutting down such projects, but 1) unethical projects are still arising and 2) the culprits (White male doctors) are still making a name for themselves and getting off relatively scotch-free.

But, I think my biggest take-home was how much the medical community truly owes the Black community. And I do mean truly owes.  Oh so many institutions and “Fathers of Medicine” have built their name and fame by abusing the trust and vulnerable position of the Black community.  Prime example – many of the “Fathers of Medicine” that built their fortune on using slaves for experimental surgeries…without anesthesia, dehumanizing and over-sexualizing Blacks, and then addicting them to morphine post-surgery. Ex: Dr. J. Marion Sims, Father of American Gynaecology, who ironically has a statue erected in his honor in an area of Central Park in Harlem. (not going to lie, I was reading this book when I was back home in Jersey and it took every fiber of self-control to not march over to that statue with a sledgehammer or spray can and go.to.town.! or at the very least, spit on it)  Some argue that it’s ok because it was common practice, and thus ethically sound at the time to use slaves for medical research…regardless, it’s still disgusting and many physicians unnecessarily went beyond what was even accepted by their medical peers for treatment of slaves.  When were move past the slave era, the same abuses of power can be observed.  Honestly, I feel that had similar medical experiments been conducted on concentration camp victims, there would have been an enormous outrage…oh wait, that’s right – there was! (i.e. the Nuremberg Trials and Code). aside: I find it interesting that medical researchers in these trials used in their defense that they based their practices on American physicians’ treatment of Blacks in America…hmmm.  And yet, no outcry, just perpetuation of the same stripping of dignity and metamorphosis into other forms of exploitation.

The uniting thread of this book is the abuse of a population of people who are least likely to benefit from the results of the experiments conducted on them, with little-to-no admission of guilt by and repercussions for those conducting such projects (mostly White men, and sometimes the government).  So much of what we know medically is based on this, and Blacks, throughout generations have passed down their “iatrophobia” (or witnessed these patterns of abuse first-hand in recent years and arrived at the same conclusions) and thus are reluctant now to enroll in research studies that are so desperately needed to be conducted to bring our health status to the levels of the majority.  It is a shame what has transgressed and persisted in this nation, and the consequences of such sins.

For me, the book lost it’s wind in the third section (on the complex relationship between racism and research), but all-in-all it is a stripped down chronology of a disgraceful history of American medical research that has been excluded from every history book I have ever looked at, and something that should be incorporated into medical training.  That being said, I attend a med school that was repeatedly mentioned throughout this book, so I have my doubts of this change coming to fruition :/

Remaining on My Summer Reading List:

Feel free to leave any book recommendations…I need some non-medically-related texts!!

***Note: Washington has a new book coming out that I’m looking to read…Deadly Monopolies: The Shocking Corporate Takeover of Life Itself – and the Consequences for Your Health and Our Medical Future. Look for it soon…***

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And the Band Played On…

In Books on May 12, 2010 at 10:18 am

I just finished reading one of the most engaging books I’ve ever read – And the Band Played On: Politics, People, and the AIDS Epidemic by Randy Shilts.  As indicated by the title, this book vividly portrays and honest retrospective evaluation of the history of the AIDS epidemic in America and how multiple parties conscientious negligence of the issue lead to the needless loss of hundreds of thousands of peoples’ lives and further diffusion of the disease that could have been dampered.  Shilts took no prisoners and placed blame on everyone – from the press that chose to ignore the disease until it started plaguing mainstream America, to the scientific community who allowed egos to get in the way of progressive research, to blood banks who didn’t want to lose profit rather than save lives, and to even members of the gay community who ignored warnings to stop dangerous sexual practices to avoid spreading the disease instead favoring sexual liberation, to finally, the US government.

As you can imagine, our lovely governmented failed astronomically with this situation.  In short, Reagan failed with AIDS much how Bush failed with Katrina. Random tangent: Did people really like Reagan? I don’t get it… (imo) Reaganomics failed, (fact) the “war on drugs” initiated by him is a waste of a lot of money and energy that could be better dispensed elsewhere, AND (fact) because of his personal inaction and his administration’s determination to divert necessary funds away from anything pertaining to AIDS hundreds of thousands senselessly died.

As I tore through the pages, I was nearly brought to tears on numerous occassions. One was the stories of the numerous AIDS babies being born that were neglected by the government and hospitals because they refused to believe that this “gay disease” [fyi: AIDS was originally called GRIDS (gay-related immune deficiency) by our government] was anything but a curse on this one population of people. They continued to deny that AIDS was causing the deaths of IV drug users, babies, and hemophiliacs (a class of people heavily reliant on blood transfusions at the time), even after it was the proved cause proved.  I read tear-jerking stories of people going into hospitals, having surgical complications necessitating blood transfusions, and being transfused with HIV-infected blood that could have easily been screened out had Blood Banks been ethical leaders and not money-hungry businessmen. I could continue with the stories, but the point is that day after day for nearly a decade (~1978-88) AIDS and its victims were swept under a rug of indifference woven by our nations’ leaders in health, media, and politics.  It was not until the disease started affecting Hollywood and non-minority heterosexual that the media and the goverment decided it was an important enough issue to address.

I’m not going to lie, by the time I finished reading this book (forewarning, it’s rather thick to get through, but definitely worth it), I was p.o.’ed at our government, yet again.  How many times throughout history do we have to see our government pruposefully neglecting the rights and needs of certain populations within our borders because they are not in the majority, and therefore are apparently less important constituents?!? This theme was clearly repeated in Katrina and even as recently as his ridiculous legalized racial profiling in Arizona. When will the government start treating us all like we’re all citizen of the human race with lives that are valuable, rather than separate and unequal?? For a nation that has a “Christian” founding, declaring statements such as “In God we trust” and “one nation, under God,” and a nation that has yet to see a non-“Christian” Prseident, we have a horrid legacy of treating people as anything less than children of God. I put the word Christian in quotes because I’m a firm believer that there’s a difference between the regilion and the personal relationship with God.  Based on history, I have my doubts about the sincerity of this religious affliation in the lives of our nation’s leaders. I think it’s just one more thing on their resume that qualifies them for the position. [end tangent]

I think I found the book particularly interesting for a few reasons.  First, as boring as I found history in high school, as I age, I am finding increasing value in it.  I’m not sure if it’s just life’s struggles that have pushed me to this point, but I gather so much more from historical accounts now than I did in my teens years. Then again, reading a boring, biased textbook is a lot difference than reading book on a topic of interest to you. Secondly, the fact that all this was developing while I was being born makes it particularly interesting to me.  I remember all the AIDS awareness coomericals and advertisements I saw in my youth, and now…it’s almost as if the disease doesn’t exist. Or, maybe because treatment has been so successful (re: Magic Johnson..I debate whether he really has HIV…or maybe a cure?) that the disease has lost much of its bite and scare of the 80s. Clearly, we know AIDS is here to stay, but people are much less concerned with it now than they were back in the 70s and 80s, when people were popping uup with the disease only to fall down dead just as quickly.  Imagine how scary it had to be back then.

Just think, the first real test for HIV antibodies was implemented in 1985 – the same year I was born.  After reading this book, I truly feel blessed to even be alive today.  Who knows what emergency situation could have arisen in my life or in the lives of my parents that would have landed them in the emergency room, possibly receiving infected blood. I could have been born an AIDS baby had circumstances played out differently. From a public health human perspective, it is arguably the most detrimental event to hit our nation.

Clearly, I highly recommend reading this book. It’s thick, but worth the investment of time if you can find it at a used bookstore or on Amazon (I found mine for a few dollars online).  Alternatively, if you’re not a reader, the talented, late Mr. Aaron Spelling directed an HBO movie by the same name, which I’ve heard great things about.

What I still cannot for the life of me wrap my head around is how a disease that started in America as a disease plaguing White homosexual men now hits hardest amongst Black heterosexual females. Riddle me that.