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Experimental treatments changed the course of the AIDS epidemic; we need the same approach to mental illness today | COMMENTARY

In 1988, at the height of the AIDS pandemic, playwright Larry Kramer exposed the Centers for Disease Control for slow-walking AIDS therapies. In a scathing open letter published in the Village Voice to Dr. Anthony Fauci — who was then, as now, spearheading public health policy — Kramer declared that after three years of effort, Dr. Fauci and the CDC “have established only a system of waste, chaos, and uselessness” and that “there are more AIDS victims dead because you didn’t test drugs on them than because you did.”

Kramer, who died last year, and other activists mobilized protesters and founded an underground market for experimental drugs, and the medical establishment buckled. Patients were included in FDA advisory panels, and access was expanded for experimental drugs for AIDS, but also for cancer, infectious diseases and other non-psychiatric illnesses.

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During the coronavirus pandemic, unprecedented public oversight of drug development led to early introduction of therapies, such as direct-acting antivirals. And emergency use authorization for the first vaccine was granted by the FDA on Dec. 11, 2020.

In 2020, Dr. Anthony Fauci, who had initially resisted Kramer, credited him with totally transforming “the relationship between activism and the scientific, regulatory and government community.” He recognized that end-users of therapies should have the authority to empower doctors and scientists, not the other way around.

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That thinking must now be applied to America’s mental health crisis, which has reached pandemic proportions.

Mental illness is now the top contributor to the global burden of disease. Along with suffering and despair inherent in PTSD, depression and psychological trauma, these conditions increase risk for chronic physical health problems and suicide. Suicides have increased by 35% in the past two decades. For girls and women, the increase is 50%. For Native American women the increase is 139%.

These patients lack highly effective therapies. Selective Serotonin Reuptake Inhibitors (SSRIs), the mainstay drugs for depression, fail to help most depressed patients achieve remission. Demand from patients seeking help for their mental illnesses has led to underground use in a way that parallels black markets in the AIDS pandemic. This underground use has been most perilous for people of color, who face greater stigma and legal risks due to the War on Drugs. As with AIDS, discrimination plays a major role in delaying access to treatment, because patients come disproportionately from communities of color.

Patients with mental illness are increasingly aware of drug trials at Imperial College London and Johns Hopkins demonstrating that illegal schedule I drugs known as psychedelics are often better than therapies they can obtain legally from their physicians. Over half of patients with post-traumatic stress disorder no longer met diagnostic criteria for illness after they took methylenedioxymethamphetamine (MDMA, aka, the club drug Ecstasy) in drug trials sponsored by the Multidisciplinary Association for Psychedelic Studies (MAPS).

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In spite of this, the FDA is limiting MAPS to extending MDMA therapy to a mere 50 patients, leaving hundreds of desperate patients to languish on waiting lists.

There is special injustice in the psychiatric establishment denying these medications to stigmatized populations. Sigmund Freud declared that he was acting as a “conquistador” when he founded modern psychiatry. The discovery of the psychedelic class of medications did not come from the “conquistador” branch of medicine, but from Indigenous communities. From Bwiti people of Ghana came ibogaine; from the Shipibo people of the Amazon, ayahuasca; from the Mazatec people of Mexico, psilocybin-containing mushrooms; from the Indigenous People of the Great Plains, Peyote cactus.

The pharmaceutical industry may not have arrived at this knowledge alone because investment in psychiatric therapies has remained very low compared to the burden of diseases, with $3.10 invested per $1,000 in disease burden for schizophrenia, $1.80 for major depression and $0.40 for bipolar disorder compared to $9.40 for COPD, $7.60 for diabetes and $75.50 for cancer.

Psychiatry’s failure to give patients decision-making power has hamstrung their ability to access to therapies. Larry Kramer’s plea for faster access echoes to remind us that for many patients, time is limited. What he said then, remains true: We’re in the middle of a plague.

Monnica Williams (monnicawilliams.com/contact.php) is director of the Laboratory for Culture and Mental Health Disparities at the University of Ottawa, where she is also an associate professor in the School of Psychology. Morgan Campbell (Mcampbell@gmail.com) is a resident physician in psychiatry at the Delaware Psychiatric Center. This op-ed is adapted from their article “The Ethics of Access: An AIDS Activist Won Public Access to Experimental Therapies, and This Must Now Extend to Psychedelics for Mental Illness” published this month in Frontiers in Psychiatry.

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