Unequal Treatment and Tuskegee

“For a serious offense writes” psychiatrist Aaron Lazare “such as a betrayal of trust or public humiliation, an immediate apology misses the mark. It demeans the event. Hours, days, weeks, or even months may go by before both parties can integrate the meaning of the event and its impact on the relationship. The care and thought that goes into such apologies dignifies the exchange. For offenses whose impact is calamitous to individuals, groups, or nations, the apology may be delayed by decades and offered by another generation.”*

In 2002 the Institute of Medicine released a report calledUnequal Treatment: Confronting Racial and Ethnic Disparities in Health Care

The report was a landmark study that documented the disparities that racial and ethnic minorities experience even when their insurance and income are the same. Prior to the study, many thought that the narrative of disparities verbalized by both patients and health professionals was just that – a narrative. Or they thought that it was about health care access. The conventional wisdom was that if you give a person health care access the disparities will go away.

In fact, they found this to be categorically false. In compiling hundreds of studies across the nation, documented disparities were found in almost every area of health care. Here are just a few of the disparities found:

Cover of "Unequal Treatment: Confronting ...

  • Receipt of appropriate cancer treatment
  • Pain control – Minority patients more likely to be under-medicated for pain than white patients (65% vs. 50%), more likely to have severity of pain underestimated by physicians
  • Mental health services – “plagued by disparities.” One study indicates 44% of White English speakers to 27.8% of Blacks received treatment after a diagnosis of depression.
  • Heart procedures – including bypass surgery
  • Diabetes – from diagnosis to amputations disparities were found in diabetic care
  • Pediatric Care – Less satisfaction, cite poorer communication, perception of lack of response

 Many factors contribute to these disparities – it is complex and the report gave a number of recommendations. It demonstrated that we have a long way to go to provide equal treatment for the minority populations in the United States.

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Between 1932 and 1972 the public health service of the United States enrolled 600 poor, black men into a study to document the effects of untreated syphilis. Approximately 400 of these men had syphilis before the study began. The men enrolled thought they were receiving free health care from the government and they were promised food, burial insurance, and medical care for participating in the study. They were merely told they had ‘bad blood’ and were never treated for the disease. In the early 1940’s Penicillin had become a standard and effective method of treatment for the disease. None of these men received penicillin, in fact – treatment was never offered for 40 years. The study is known as the infamous Tuskegee Syphilis Experiment.

It has been 42 years since Tuskegee and to this day, it is difficult to get African Americans to participate in research studies. It does not take a rocket scientist to wonder why.

It was 30 years after Tuskegee that the report Unequal Treatment was released.

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I am a white woman. Anyone who reads this blog and has seen any pictures knows this. I did not grow up in this country and did not think about race – ever. I was raised as a privileged white minority in a country that still had memories of British occupation where whites ruled and were regularly sent to the head of the line. I now work as a nurse in public health with minority populations and regularly confront issues of racism and unequal treatment in health care.

The disparities that happen in health care have historically been wrong. The disparities that occur these many years later are wrong. There is no other word for it. They are wrong and a corporate apology is in order.

And I want to apologize. It doesn’t matter that I was not involved with Tuskegee. It doesn’t matter that I was not one of the care givers in any of the studies documented for Unequal Treatment. What matters is that I am part of a health care system that has routinely discriminated against people because of their color; a system that has treated people unequally based on their outward appearance, not their presenting symptoms.

To use some of the words of Aaron Lazare who I quoted above – these offenses were calamitous to individuals, to groups, to our nation as a whole.

In Notes from No Man’s Land, author Eula Biss talks about being a teacher at a public school in Harlem. A young boy a foot taller than her hissed at here in the hallway. As she sat in the principal’s office, waiting while the principal went to “hunt him down”, another kid stepped into the office. She writes the following about the interaction:

“I’m sorry I sexually harassed you.” I stared at him. He wasn’t the same kid. “But it wasn’t you.” I said finally. “Yeah,” he said as he pulled down his baseball cap and started to walk away, “but it might have been my cousin.”

So today, as we near the end of Black History Month I borrow from the last sentence of Eula’s book. I apologize for Unequal Treatment. I apologize for Tuskegee. Because no – it wasn’t me — but it might have been my cousin.

*As quoted in Notes from No Man’s Land by Eula Biss page 189

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Public Health, Polio and Pakistan

Photo of newspaper headlines about polio vacci...

In less than three decades the goal to eradicate polio had become a public health success story.

Polio is a disease that comes on suddenly, cripples quickly and kills indiscriminately. There is no cure and at the peak of the polio epidemic millions were affected and killed in every country. The disease brought fear to people and public health workers alike. In a document that tells the story of the work to eradicate polio, UNICEF says ”

“Unlike most infectious diseases, which normally take their greatest toll on
the poor, polio knocked on the door of every level of society. Rich and poor, adults and children – no-one was safe.”

In the 1950’s Dr. Jonas Salk came on the scene and developed the world’s first ever polio vaccine. This discovery was followed in the 1960’s with Dr. Albert Sabin’s development of an oral polio vaccine. Going from a shot to drops made giving the vaccine simple and allowed for more wide-spread use of the drug.

And so in 1988 world leaders decided to embark on a world-wide campaign to eradicate the disease.

This campaign has been extremely successful. Last year less than 300 cases were reported world-wide, and many countries have eradicated the disease completely.

Anyone in the field of public health is well aware that when you embark on health campaigns in a community the first step is earning the trust of that community. You plan with, not for, the community. And part of planning with a community means connecting with trusted leaders.

Enter the CIA and a fake Hepatitis B vaccination campaign in 2011 in Abbotabad, Pakistan. I’m sure in the archives of CIA projects there are notes as to who came up with this idea, but whoever did surely did not take into account  the long-term public health impact on Pakistan.

Because when word got out that this was a fake campaign designed to gather intelligence, intelligence that ultimately led to the finding of Osama Bin Laden, every single vaccination program in Pakistan had the potential to become suspect.

In December of this past year, nine vaccination workers were killed in the city of Karachi, accused of being a part of a plot to hurt Pakistan. Taliban religious leaders in the Pakhtunkhwa area of Pakistan have warned people against vaccine programs saying they are foreign sponsored and designed to hurt, not help. Leaders in the area report 11 cases so far this year, and it hasn’t yet reached the peak of the season which occurs after the summer monsoon rains.

Even before the CIA ran its fake vaccination camp, vaccination workers had to convince people that they were legitimate, convince people that they were not part of a bigger scheme to identify drone targets. Once the word spread that indeed, there was one camp that was fake – it became a battle, the vaccinators the warriors.

When governments use healthcare and public health campaigns to advance their agendas, no matter how “noble” or “ignoble” those agendas are, it is wrong. It is pathetic. It is unconscionable.

I don’t care who the government is. The idea and the execution of the idea are indefensible.

The effort to kill one man will potentially result in thousands that are killed from polio, I believe in war it’s known as collateral damage.

So I ask myself – was there really no other way to get the intelligence needed? Were the minds of those devising this scheme so uncreative as to have no other options?

Americans know well the deception of fake health projects. The Tuskegee Syphilis Experiment was not very long ago and still results in suspicion from African-American communities when they are asked to take part in research projects. And it should.

The experiment was barbaric.

Barbaric –  just like the setting up of a fake vaccination program for intelligence purposes. There are no excuses. There is no defense.

It is no secret that I love Pakistan. When the owner of a Pakistani restaurant near our home recently introduced me as “a daughter of our nation” I was speechless and deeply moved. I long to communicate across the extreme boundaries that divide my two worlds – Pakistan and the U.S; Muslim and Christian. As a nurse, I have in the past been able to do some of that through health care, through health clinics.

But health care has been compromised as a vehicle of communication and care. 

So in a time when we desperately need bridges between worlds, between world views, between nations and religions, the nails in the coffin of US-Pakistan relations are pounded in harder every day.

An article in The New Inquiry called “Prescription Strike” says it far better than I ever could in the closing paragraph:

“Identity is the primary resource in a war against an idea. The distrust “they” in Pakistan have for “us” reflects the distrust “we” have for “them.” How many drone attacks, CIA scandals, and covert operations does it take to cast vaccine workers as foreign threats? How many terrorist attacks did it take to warrant the search of every brown man at the airport, the spying on Muslim Americans, the launching of  two separate wars? We conflate large swaths of Asia into a single Muslim enemy that lurks in deserts and caves; we retroactively label every “military age” male killed by drone a militant. They conflate all Western initiatives into a single operation bent on their demise, every health worker a potential spy. Meanwhile, Pakistani children die of polio and Americans ask, “Why do Pakistanis hate us? We’re only trying to save them.”