Acknowledge the Past

We must acknowledge the past in order to regain trust and to seize the future.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

HIV Children and Orphans are Defacto Test Subjects

Children with HIV are increasingly finding that their status is that of involuntary research subjects, not victims. In December 2004, for example, the journal Nature Medicine reported that since the early 1990s, HIV-positive orphans have been the subjects of “dozens of national clinical trials run by researchers at Columbia University Medical Center and other [New York City] area hospitals.” Mammoth pharmaceutical corporations such as GlaxoSmithKline, the manufacturer of zidovudine, have sponsored the testing of antiretroviral and other pharmaceuticals on scores of HIV-infected orphans housed in New York City’s Incarnation Children’s Center (ICC). This institution for the HIV-infected is run by Catholic Charities in Washington Heights…

Some of the candidate AIDS medications are being tested to determine their toxicity. Children as young as four were given cocktails of up to seven potent medications, although physicians are normally reluctant to give young children even approved powerful medications. Little if any benefit accrued to the infants from these risky exposures, because although some were HIV-positive, they were too young to have developed AIDS. One study is of “Stavudine…Alone or in Combination with Didanosine,” a combination that has killed adult women. An experimental vaccine administered to children as young as twelve months utilizes “live chicken pox virus,” even though it can trigger the disease itself. A study titled “HIV Levels in Cerebrospinal Fluid” required that infants undergo a spinal tap, a risky, invasive, and painful procedure. There was even a study on HIV-negative children that used an experimental HIV vaccine. By law, such a nontherapeutic study on healthy children can convey only minimal risk, but the vaccine’s risks are unknown.

Also, some of the experiments did not involve HIV therapeutics: One drug trial tested a herpes medication “for tolerance, safety and pharmacokinetic” information; another investigated reactions to a doubled dose of measles vaccine—in six-month-old infants.

For its part, Columbia University released a statement denying that the drugs’ side effects were serious enough to warrant discontinuing treatment. However, this should have been the parents’ call, not the university’s or the ICC’s. But guardians and parents who adopted HIV-infected children have found the ICC, ACS, and researchers arrayed against them when they have tried to take children off medications they found to be harmful.

In explaining her take on this struggle, Dr. Painter has said, “We’re having an increase in referrals over the last years to deal with medication adherence. There are a fair number of children whose HIV illness may be well controlled but whose families are experiencing difficulty complying with the child’s medication regimen.” By “referrals,” Painter means children who are torn from parents and returned to the various agencies when these parents and guardians balk at dispensing the investigational drugs.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

People Cheaper Than Cats

…the array of electrodes that Bailey and Heath devised and then implanted into the brains of black subjects for as long as three years each. The team used the electrodes to deliver charges to the limbic system of the brain. This group of related brain structures includes the amygdala, the hippocampus, and the septum, which are key to emotions and judgment. By stimulating these areas, Bailey evoked pleasure, pain, joy, anger, sexual arousal, and other powerful emotions in his black subjects at will. The electrodes were designed to facilitate stimulation of the brain’s “pleasure centers” either by a remote operator or by the subject himself, using a transistorized “self-stimulator” unit worn on the patient’s belt. Bailey did some of these experiments on black prisoners in New Orleans’s Louisiana State Penitentiary but made no mention of how he gained access to other hospitalized patients for such experiments or whether any sort of consent had been sought. Neither he nor Heath ever mentioned what they told the patients. But Bailey reminisced about his methods at Tulane when speaking to a group of nurses in Chelmsford, back in his native Australia, twenty years later,

“I was working in America in New Orleans, there was experimental work being done there on cats, where they found that if you put electrodes down on the anterior part of the brain, in the septal region between the two hemispheres and down, right deep down, sort of here, put electrodes in here, that you struck a [inaudible] which had something to do with screwing and orgasm and pleasure and satisfaction. And if they put a wire in this and took it out and put it on to a push button, the cat would very quickly know that if it pressed the button, it got a little “chop,” and this was a sort of a little orgasm. And so the cat would go “pop” again, and get the taste of it, and the cat would go “pop, pop, pop, pop.” Here was something important. What did you make of it? So, in New Orleans, where it was cheaper to use niggers than cats, because they were everywhere and cheap experimental animals—there wasn’t much working there, the people we have been picking for the operation has [sic] really been at the bottom of the can. Nothing is going to help them—shoot them is the only thing—so they started to use them, Negroes—patients in hospitals—and so, the same area, little box, was put on their paws with a button. They just went around, “pop, pop, pop,” all the time, continuous orgasms…”

After his return to Australia, Bailey opened a “deep sleep therapy” clinic for depression and a wide variety of other psychiatric complaints at Chelmsford Hospital in Sydney, which he operated between 1963 and 1979. The deep sleep therapy technique is a misnomer for patient abuse that Bailey practiced by placing thousands of patients with a wide variety of psychiatric symptoms into a barbiturate-induced coma for two weeks, during which time he administered repeated electroshock therapy and implanted electrodes and even metal plates into many of their brains, without their knowledge or consent. Many patients deteriorated dramatically, but they learned only years later from news accounts what their doctor had done to them. He sexually abused some of the women patients. Scores of patients died, although Bailey concealed the true number by arranging for many worsening patients to be shipped off to other hospitals, where they died without ever regaining consciousness.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Nazi vs American Medical Experimentation

Quote 1:

n 1947, the International Military Tribunal in Nuremberg charged Nazi doctors with war crimes, including experimentation upon prisoners of war. The Germans’ ably conducted defense hinged upon Dr. Gerhard Rose’s contention that U.S. doctors were guilty of exactly the same abuses—regularly subjecting prisoners to dangerous, painful involuntary experiments. The trials culminated not only in the conviction and execution of many accused physicians but also in the Nuremberg Code, which was devised to govern future medical experimentation.

In The Nazi Doctors and the Nuremberg Code,24 George Annas and Michael Grodin analyze how U.S. investigators rejected Nuremberg and replaced it with naught but hollow assurances that American medical researchers needed no such constraints.

Quote 2:

Poverty, not criminal behavior, is the most common feature of the imprisoned. Jails are full of people, both guilty and innocent, who are there only because they are too poor to make bail. By the 1970s, most prisoners in Holmesburg, for example, were legally innocent men awaiting trial. Between the 1940s and 1970s, bail bondsmen typically would spring an inmate for a down payment of 10 percent of his bail, so that a man jailed in lieu of a five-hundred-dollar bond could buy his freedom within weeks with the fifty dollars he earned from a single medical experiment.

Quote 3:

Most people don’t realize that prison medical research, which all but died out in the 1970s, is enjoying a quiet renaissance. Since the late 1980s, investigators in Arkansas, Maryland, South Carolina, Texas, Florida, Connecticut, and Rhode Island have been conducting and proposing research in prisons.

Most of these researchers are funded by the Department of Health and Human Services (HHS), which, for example, supports the Yale School of Medicine with $178.7 million and the University of Miami Medical Center with $191 million….Dr. Joseph Zwishenberger’s radical new approach to lung cancer, which is to heat the subjects’ blood to a temperature where the errant cancer cells theoretically would not thrive. To test his theory, he sedates inmates and connects them to a machine called the BioLogic HT System, which removes blood via venous and cervical tubes. The blood is heated, then returned to the inmate’s body, which is kept at a very dangerous elevated temperature of 108.5 degrees. Any adult taken to a hospital with a temperature of 105 degrees would be considered an emergency case and cooling strategies would immediately be undertaken, but in Zwishenberger’s protocol, inmates’ 108.5 temperatures are sustained for two hours.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Medical Data Exploitation

Administration, Census Bureau, and Department of Veterans’ Affairs all maintain extensive collections of genetic data. Since May 1998, sex offenders have been required to surrender DNA samples to federal databases, and today every state maintains its own DNA database that contains the DNA profiles of felons—and of others, including people merely suspected of crimes or even of innocent people rounded up in DNA sweeps. The samples of 450,000 convicts are stored with identifiers, such as the person’s name, description, criminal record, Social Security number, and image. The government has also sponsored the creation of national databases, such as the FBI’s Combined DNA Index System (CODIS), which stores DNA samples, most without identifying information. CODIS went online in 1998 with samples from 8,000 convicted child molesters, and by 2001, it contained the profiles of 1.5 million felons. In 2002, the U.S. Attorney General ordered the FBI to expand CODIS to 50 million profiles, and by 2004, CODIS stored 2.6 million samples containing the DNA of people convicted of almost any crime. In October 2005, the Senate Judiciary Committee approved a law, which was pending when this book went to print, to force anyone who is merely detained by federal authorities to provide DNA, and in August 2006 the database contained more than 3.5 million samples. The FBI predicts that CODIS will accommodate 50 million samples “in the near future.”

Besides harboring the markers for four thousand disease risks, DNA also contains information about the health and identity of one’s forebears and descendants. With a sample of your DNA, a person can predict certain disease and disorder probabilities for you and for your children. George Annas, a law professor and bioethicist at Boston University, has referred to one’s DNA profile as a “future coded diary,” and with the completion of the Human Genome Project, the code has essentially been broken. Therefore, taking the fingerprints of an arrestee and taking a sample of his DNA are not comparable acts; the latter is far more intrusive and revealing—but far less likely to yield a uniquely definitive identification.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Children as Test Subjects

The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research concluded in 1977 that children were an especially vulnerable population because they could not offer consent. Yet, children today are more likely to become research subjects now that federal policies begun in the mid-1990s have changed the face of the “typical research subject.” The National Institutes of Health (NIH) Research Revitalization Act mandated the inclusion of women and minorities in all research in 1994 and added children in 1998. So far, the new FDA and NIH policies have placed stress not on protecting children but on ensuring children’s access to research—unfortunately, this too often means researchers’ access to children. This is an ominous paradigm shift for black children, who already are overrepresented in nontherapeutic and stigmatizing medical research.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Brain Surgery for Docility

From the 1960s through the early 1970s, disenchantment with the widespread use of tranquilizers fostered interest in brain surgery as an alternative to “quiet” patients. University of Mississippi neurosurgeon Orlando J. Andy, M.D., capitalized on this trend, performing many types of brain ablations, including thalamotomies (destruction of the thalamus, which controls emotions and analyzes sensations), on African American children as young as six who, he decided, were “aggressive” and “hyperactive”…Today, Andy is revered as a neurosurgical pioneer, one whose work was never challenged in his lifetime and who never suffered any disciplinary action…brain destruction was employed not only for misbehaving black boys but to ensure the docility of prisoners and, in the 1960s, as a government-funded cure for urban rioters. Three American physicians proposed that such urban uprisings were caused by men who could be cured by psychosurgery. Dr. Vernon Mark, director of neurosurgery at Boston City Hospital, and his colleagues Drs. Frank Ervin and William Sweet swept aside social factors such as poverty, slum housing, and poor education in a 1967 proposal in the Journal of the American Medical Association: The obviousness of these causes may have blinded us to the more subtle role of other possible factors, including brain dysfunction…The National Institutes of Mental Health (NIMH) and the Law Enforcement Assistance Administration granted the three surgeons $600,000 for brain research on urban rioters.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Solving Homelessness: Health Care

Homelessness is unhealthy. In the United States poverty, extreme or otherwise, is unhealthy. For many middle-class families, simply being underinsured in unhealthy. Health care is a wide-reaching issue but the cost of health care, with or without insurance, is frequently financially devastating and potentially deadly.

Doctors don’t work for free. If you can’t pay the bill and the insurance company (assuming you have one) won’t cover the expenses, then medical care and medication are cut off. That’s the way things work.

For people trying to survive extreme poverty (homelessness), the conditions of day-to-day life exacerbate medical issues. The lack of health insurance all but eliminates health care. Trying to find work or other resources necessary to get off the streets is difficult under the best of circumstances, add an illness into that scenario and ‘extremely difficult’ becomes ‘near impossible.’

Universal Health Care

Universal health care would address the financial devastation that pushes middle-class families into extreme poverty (homelessness) when a loved one falls ill.

Universal health care would provide extremely poor people access to much-needed resources and services. Simply being able to address an illness or injury makes finding a job significantly more possible, which makes escaping homelessness possible – not easy or guaranteed but possible.

Universal healthcare would begin the long and arduous process of addressing the medical resource caste-system currently built around government-provided Medicaid and Medicare programs. People who receive health insurance through an employer have significantly more options and receive markedly better care. There are large numbers of doctors and medical care providers who refuse to accept patients reliant on government-provided benefits – unless they are government employees, in which case they receive the same care as people in the private sector. Since extremely poor people are overwhelmingly dependent upon these programs, this creates a prejudiced resource distribution wherein people at the bottom are treated very differently from people who have more social and financial ‘value.’

A true universal healthcare system would help to place all Americans on equal footing within the medical care system. It would place every person under the same medical payment system, giving all citizens access to the same medical resources without fear of financial devastation.

The social stigma surrounding extremely poor people will take significantly more time and resources to change. Medical professionals who harbor an aversion to interacting with extremely poor people (homeless or housed) will continue to shun these individuals, provide substandard care or participate in abusing vulnerable populations for the same reasons that racists treat the objects of their hate in the same manner.

The cascading effects of hatred towards extremely poor (homeless) people will have to be addressed in another way.

Radioactive Experiments on Orphans

Vanderbilt University physicians administered radioactive cocktails to pregnant women in Nashville. The University of Chicago fed the radioactive elements strontium and cesium to 102 unwitting patients at state schools. One Dickensian institution, the Fernald School in Waltham, Massachusetts, added radioactive oatmeal to the menus of thirty orphans in a program sponsored by the AEC with the support of the Quaker Oats Company. Old videotapes reveal that some of these Fernald boys were African American, but no records with racial identifiers were ever released. When victims died, government scientists obtained their bodies and autopsied them carefully, measuring the levels of radioactivity and biological damage. To enable large numbers of these grim assessments, at least fifteen thousand bodies were exposed and collected for one project alone: Operation Sunshine. Until the mid-1980s and without the knowledge of patients or their next of kin, this program shipped the bodies and body parts of radiation experiment victims to be dissected at headquarters in Los Alamos, New Mexico.

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Solving Homelessness: Legal Assistance and Reform

Legal problems can, and often do, force people into extreme poverty, homelessness included. A court case can take over a person’s life, draining time, resources and funds. Depending on the reasons behind the case, it can cost a person their reputation, job and family – justifiably or not. Any involvement with the legal system is costly and winning is often the result of simply having more resources to devote to the process. If the issue at stake is important enough, people will (and have) devote every last resource to the fight, leaving them financially destitute.

Surviving extreme poverty (homeless or housed) is a legal quagmire of vagrancy laws; restrictions based on lack of a permanent address; illegal evictions; and accusations of theft, fraud, trespassing and simply existing (e.g.: sleeping in public). Attempting to report violent attacks or rapes is practically impossible and police brutality is not uncommon.

Those are just the most commonly known legal issues facing people trying to escape extreme poverty.

Any form of legal entanglement is devastating to impoverished families. Criminal cases are common and many of them are based on racial profiling or ridiculous laws specifically designed (and selectively enforced) to criminalize the existence of poor people because those with power don’t like seeing extreme poverty in public spaces.

I wish I could say that last sentence was an exaggeration or an analogy or even representation of worst-case-scenarios that pop-up through the country. Sadly, it is the cold-hard-reality faced by people surviving extreme poverty everywhere in the United States.

There are free legal aid programs, but they are inundated with requests for help, run by a small staff of volunteers and universally refuse to even discuss anything that is considered criminal. Legal representation provided within the court system is also overloaded and poorly managed.

As the experts in mass incarceration have pointed out, simply being part of a targeted racial group almost guarantees problems with the criminal justice system, regardless of your commitment to living a good and honest life. The same can be said for people surviving poverty – particularly those faced with extreme poverty and homelessness.

Extreme poverty and homelessness will not be significantly reduced, much less solved, until prejudiced and predatory laws are eliminated, all people are provided access to quality legal assistance and addressing an issue through the court system does not require being either extremely wealthy or a willingness to face complete financial devastation.

There’s a lot of work to be done here.
I don’t have a clean or easy answer.
It must change.
Period.

Mass Incarceration and Vagrancy Law Resources: