People with Disabilities Are Under-Represented in Clinical Trials

Since January 2020, American scientists have worked day and night to understand the virus we know as COVID-19. Now, health agencies across the globe have granted emergency authorization for the use of thirty-four vaccines (collectively). Yet, our healthcare system is still in shambles. We are two and a half years into the COVID-19 pandemic. Some government health agencies are pointing toward an “endemic,” a classification used to describe a pathogen that doesn’t go away. Before, it seemed impossible for a virus like COVID-19 to impact a country like the United States. Yet, the Disability Community has dealt with the cracks (or gaping holes) in the U.S. healthcare system for years.

The Trouble with Clinical Trials

person holding test tubes
Photo by Polina Tankilevitch on Pexels.com

Clinical trials are expensive and take many years to complete, but trials are critically important to public health. In any trial, the results indicate a drug’s ability to go on the market. The data from clinical trials can indicate certain side effects a person may experience while taking the drug. The problem is pharmaceutical companies don’t test people with disabilities. Some pharmaceutical companies intentionally don’t include people with disabilities. Others don’t have any disabled people apply. Most don’t record disability throughout the trial. What happens when pharmaceutical companies are tasked to develop a treatment for a novel virus or bacteria? They request emergency authorization to speed up the trial process. This effectively gets the drug to consumers faster, but not without risk.

The Increased Risk for People with Disabilities

Of course, risk is associated with any drug or medical procedure, regardless of how long its clinical trials were. The Disability Community, however, is at an even higher risk for illness and injury. All drugs have certain ways of interacting with the body to stop a pathogen. What might seem like an average drug interaction in someone with no underlying conditions might be harmful to those with underlying conditions. In certain disabilities, neurotoxic drugs can create painful and sometimes permanent nerve damage. In people with mental health-related disabilities, drugs that impact metabolism and hormone production can significantly alter their mood, diet, and overall health.

Making Tough Decisions About My Health

When I caught COVID in early August 2022, I knew I had to make educated decisions about my treatment. My guess is I caught it on the way home from a trip to Washington D.C. I did not notice it until two days after I returned. I started having symptoms that night and quickly developed a fever and chills. The next day, I hopped on a zoom call with a doctor and their medical student. Both had done extensive research into the most effective ways to treat a COVID-positive person with a neuromuscular disease. We collectively brainstormed for at least an hour before we settled on a treatment plan, the antiviral Paxlovid. It was proven to prevent further symptoms and hospitalizations. The major risk, however, was related to my disability. Because of this, I was forced to make a decision that could negatively impact my underlying conditions while potentially keeping my COVID-19 symptoms from escalating.

The Rise of More Public Health Threats

Pharmaceutical companies do not include or record underlying conditions in medical trials. In the next few decades, health experts predict many more public health threats will occur. These public health threats will require some type of treatment, and underlying conditions won’t be recorded in clinical trials. If there is no recording, there is no data for researchers and doctors to refer to when prescribing a treatment. As a result, patients with underlying conditions must make the decision to risk their health for treatment.

About Riley Hurt: Riley lives in Salem, Oregon, and uses a Stretto Power Wheelchair for mobility. Riley is enrolled in college, pursuing electrical and computer engineering. She hopes to make her future field more inclusive for people with disabilities. Click here to learn more about Riley.

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