Are Big Government and Big Pharma Colluding to Abet A Tuskegee Type Experiment in Diverse Communities?
Rick Blake, Washington-based Columnist
Large multi-colored pharmaceutical posters line the hallways like soldiers while federal researchers proclaim the second coming of one drug as a cure “to End the Epidemic” as hundreds flock to grab free samples – not of the drugs – but a variety of knickknacks and expensive to print and colorful marketing materials that use the language of the old civil rights movement and proclaim “sensitivity” to diverse communities.
Welcome to the new age of AIDS and HIV community “activism” where big pharma tries to by access to non-profit executives and big government sponsors the research. This is now a time when researchers tell a story about how “effective” the drugs are in the short run without mentioning the possibility – or probability – of co-morbidities like heart disease, stroke, gut problems and more – particularly in African American and Latino communities in the longer run.
Doesn’t this sound like a much bigger version of the “Tuskegee Experiment, “officially known in research circles as “The Tuskegee Experiment of Syphilis in the Negro Male.” This kind of language has not been entirely lost and may sound somewhat familiar to those who peruse the current research involving African Americans and HIV. The Tuskegee Experiment began in 1932 when 399 African American men who had latent syphilis were all given placebos though penicillin was available. Public health researchers wanted to track the course of the disease and its consequences. Not until 40 years later was this story revealed by a conscientious Associated Press reporter. Of course the disease, the times and therapeutics are different but are the intentions and the greed that different?
The real intentions of big government and its collusion with big pharma was in evidence at the conference. This columnist was verbally assaulted by a researcher during a session of the 19th USCA and told to “step out of the room I am from the South Chicago” – for what seemed like a prelude to a physical confrontation – when I asked a question about the long term effects of a certain drug treatment and the consequences of big pharma and big government funding research, marketing that research and packaging the idea that one therapeutics was a major part of ending the epidemic without any consequences whatsoever.
There is a massive marketing assault on the community by big pharma and big government. These non-profit leaders provide large forums at USCA to tell their story of “Ending the Epidemic” by taking their drugs alleging their safety.
This is NOT an attack on the current crop of antiretroviral therapies. They work and keep people alive. No one should stop taking them. They are what is available right now and they are essential to keeping people alive. However, there are serious complications associated with ARVs that are quietly swept under the rug so people don’t demand better. You can sit in scientific and research meetings and listen to Big Pharma presenting itself as a caring, sensitive protector of the lives of those with HIV and AIDS. Believe that all you want. But the truth is that there are seriously downplaying the side effects and long-term effects of ARVs.
Who can you trust? Turn out the lights, the parties over if individuals in the HIV/ AIDS community and those at risk don’t learn the science of the disease, how to really protect themselves and how not to take easier “solutions” marketed to them in collusion between Big Government and Big Pharma. What happened to research on condom use, microbicide research and using next generation therapeutics? This funding has been set aside largely for a concentration on one drug package that a big pharma brochure proclaims is “Standing Side-By-Side with the HIV Community.” Objective research needs to be performed on the effects of PrEP on the HIV-negative population.
The Old Guard like Act Up knew the truth. They paid for it with their lives. Big Pharma and Big Government stood side by side as thousands died in the early days of the disease. Unfortunately few of the old guard remain – those who became treatment activists and learned the science of drug development have largely died out. Their ranks have dwindled from disease, isolation or disgust thrust aside by the collusion between big pharma and big government. Their victory in May 1990 at Storm the NIH largely forgotten. For those too young to remember, ACT UP chapters from across the country occupied the National Institutes of Health (NIH) to demand AIDS drug treatments. And they succeeded, but paid for their success in blood.
What’s left is similar to the Tuskegee Experiment. Sure there is a difference. Drugs are being used instead of placebos in a package called “Ending the Epidemic.” But the point is that those poor black farmers who were experimented on during the Tuskegee Experiment died over the years when a better treatment was available that could have prevented adverse and deadly effects and that is the point. Now however, we are talking about thousands of HIV positive people in diverse communities. Is their a parallel here? If not, Big Pharma and Big Government should be willing to engage in real discussions and meaningful plans with the diverse communities that have been the targets of their drugs. Especially when it comes to PrEP.
There was a ray of hope at USCA 2019. In a loud, but serious demonstration of community dissension with the Big Pharma and the Federal government’s collusion to expand a drug treatment with possibly lethal long range effects, demonstrators took over stage at the Opening Plenary of 19th USCA to question the Director of Centers for Disease Control and Prevention “misleading” description of the presidential plan to end the HIV epidemic. The demonstrators took over the stage from Joy Reid, an MSNBC news host, to chants of “You cannot end the epidemic without us.” Reid did not know how right she was when she introduced the plenary session by saying, “We are here at a very important point in history.”
More than a dozen demonstrators took over the stage and continued the chants. “All progress has been by in HIV by activism and now we demand our seat at the table,” said one demonstrator on stage. “We demand immediate involvement in the negotiations” with pharma another said. Still another demonstrators called for an end to racism in the collusion between Big Pharma and the Trump Administration’s HIV and AIDS drug plan. Another said, “We cannot end this epidemic while your Administration continues to put people in concentration camps,” referring to the Trump Administration’s jailing of Latino immigrants and their children attempt to cross the U.S. and Mexico border. A group of the demonstrators left with a member of the Administration for a private meeting. We don’t know what the results will be, if any.
The demonstrators pointed out that the CDC could have prevented the spread of HIV, but did not because of the use of the lethal version of the drug packaged as “Ending the Epidemic.” The Federal government hold s the patents on a number of the therapeutics including one that is the foundation for the treatment now being touted as “Ending the Epidemic.” The HIV/ AIDS communities may be oblivious to history. But that history has echoes here in the present. The fact that there was a safer drug available at the very same time the more damaging drug was marketed shows that the Tuskegee experiment remains template for the present. This time though, all of the HIV and AIDS community regardless of race or gender definitions are the poor, southern black farmers left to die on the alter of Big Pharma and Big Government. Isn’t it time for HIV organizations to actively intervene so that a new generation of HIV drugs can really “End the Epidemic”?
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Originally published on PanAware on Wordpress.com on September 12, 2019. By Jeannie Wraight (column by Rick Blake, Washington-based Columnist).