My Experiences with Hydroxychloroquine Urge Caution and Ethical Research into COVID19 Therapies


Keisha Ray

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Tag(s): Legacy post
Topic(s): Clinical Trials & Studies Ethics Health Care Health Policy & Insurance Human Subjects Research & IRBs Informed Consent Pharmaceuticals Politics Public Health

by Keisha Ray, Ph.D.

I take the drug hydroxychloroquine, brand name Plaquenil, for an autoimmune disease. Hydroxychloroquine was once used to treat malaria and is now commonly used to treat a range of inflammatory disorders like lupus and rheumatoid arthritis. If this drug sounds familiar it is likely because it has frequently been in the news as a potential therapy for COVID19. During multiple press conferences the president has touted this drug as a potential cure for COVID19. Medical professionals like Dr. Anthony Fauci and state governors like New York governor Andrew Cuomo have discussed and debated the drug’s potential, drawing various conclusions about the limited studies that have been done on the drug. It’s been strange to see people debate the usefulness of a drug that I take on a daily basis to maintain my health. What has been even stranger to me is seeing people be so careless with this drug that I got prescribed to me only by jumping through proverbial hoops. Given my experience with the drug, fear and uncertainty around COVID19 is not an excuse to be careless with this drug.

I have taken hydroxychloroquine for three years. It has been prescribed to me by two different doctors in two different cities. Although the two doctors are very different—geographically, culturally, nationality, and where they received their medical education—each doctor gave me strict guidelines to follow before giving me the prescription. These guidelines continued each time I needed a refill.

Art by Craig Klugman

Given my medical ethics background, the first doctor that prescribed me hydroxychloroquine asked me to do my research on it before she gave me the prescription. After reading forums conducted by people on the drug and hearing their experiences with the side effects of hydroxychloroquine I told my doctor I did not want to take the drug but would rather try other therapy options. After those options didn’t work, I opted to take hydroxychloroquine. Before my doctor would give me the prescription, however, I had to do bloodwork. I also had to see an ophthalmologist for an in-depth eye scan because hydroxychloroquine can cause what is called hydroxychloroquine retinopathy, a disorder that can affect vision or even cause blindness by altering the retina. This scan is so common that when I called the ophthalmologist office I only had to say that my doctor prescribed me hydroxychloroquine and the office staff knew exactly what I needed from them. My doctor required me to do these scans twice a year to continue receiving refills of hydroxychloroquine. I also had to continue to get blood work every 2 months. One time my blood work results showed that hydroxychloroquine may have affected my kidneys and I then had to get an ultrasound of my abdomen before my doctor would give me another month’s refill. Lastly, my doctor required monthly appointments that were eventually changed to every 2 months, and then every 6 months.

When I moved for a new job and got established with another doctor who could give me refills of hydroxychloroquine I had to meet these requirements all over again. See an ophthalmologist, get routine blood work, and monthly appointments. I continue to meet all of these requirements because hydroxychloroquine helps me have better health and pain free days. But I take the numerous requirements these doctors have imposed on me as an indication of the seriousness of this drug. So as I watch and read stories about using hydroxychloroquine to treat COVID19 I’m concerned that we are so desperate to find remedies for the novel coronavirus that we are accepting inadequate research and using the drug in unethical and unsafe manners.

For example, a medical director of a nursing home in my home state of Texas has reportedly given residents, without their knowledge and consent, hydroxychloroquine to study its effects on the residents, many of whom have tested positive for COVID19. This director, without the oversight of an IRB is using the residents as guinea pigs. He is experimenting on some of the most vulnerable people of our population and he is doing so based on faulty studies, inadequate research, and flaming rhetoric from the U.S. president.

Despite the lack of research for hydroxychloroquine being a viable treatment for COVID19 and a Brazilian study being halted because participants developed an irregular heart beat, state pharmacy boards in at least four states have limited prescriptions for the drug in the event that it can be used for COVID19 patients. State pharmacy boards are also limiting prescriptions for hydroxychloroquine because they found that doctors were abusing their powers and writing prescriptions for the drug for themselves and their families in the event that they test positive for COVID19. The (so far) misguided buzz around hydroxychloroquine has made it hard for patients who regularly took the drug before the pandemic to get their prescriptions filled. Once the president cited hydroxychloroquine as a potential treatment for COVID19, I too had difficulty getting my prescription filled, likely because I live in Texas, one of the states whose pharmacy board began limiting prescriptions for hydroxychloroquine.

The craze over hydroxychloroquine continues in spite of incomplete studies and studies that have found that hydroxychloroquine has never adequately treated any type of coronavirus. The Department of Veteran Affairs has purchased over $200,000 worth of the drug and the Bureau of Prisons has also purchased $60,000 worth of hydroxychloroquine. Because of the lack of research there is no reason for these large purchases at this time.

From my own experiences, hydroxychloroquine is a drug not to be taken lightly; it can have very serious, life-altering side effects. The caution that doctors take to prescribe it to patients for inflammatory diseases should not be ignored now because we so desperately want to treat patients with COVID19. I understand wanting to help COVID19 patients but using a drug that has not yet proven to be effective in clinical trials can lead to unhelpful and unethical treatment of patients. A pandemic is not an excuse to forgo the basic requirements for biomedical research. In fact, a pandemic should give us even more pause and encourage us even more to find a safe cure.

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