COVID-19 is a Roadblock for Rare Disease Research


For the last month, the world has been living through a pandemic: COVID-19. The situation is rapidly changing daily. As of April 13, there have been 1.8 million diagnosed cases worldwide, alongside 441,323 recoveries and 116,052 deaths. In such a trying time, it can be nerve-wracking trying to understand what the next steps are. For rare disease patients and their families, you may also be wondering when the medical field will be able to focus on rare disease medical research again.

According to WCAX3, COVID-19 presents a roadblock for the medical community. With attention squarely focused on COVID-19 recovery efforts, where do other patients stand? Admittedly, this will dominate medical research for a while – and rightly so. However, it could end up having more of a positive impact than we think.

COVID-19 as a Roadblock

For Fred Carlson, COVID-19 has changed the way he lives. He has amyotrophic lateral sclerosis (ALS), a progressive neurological disease that causes nerve cell death. This affects the brain stem, spinal cord, and brain. People with ALS will eventually experience muscle weakness, difficulty with movement, and a loss of motor control throughout the entire body. As such, Carlson is immunocompromised. Because of this, he is more at risk of contracting COVID-19 and cannot leave the house. Read more about ALS here.

Whereas Carlson used to enjoy running marathons, this former member of the U.S. Army Special Forces now must only have contact with his wife and his service dog. Doctors cancelled his appointments. But while Carlson knows that he can handle the isolation on his own, it’s not just himself that he’s worried about. It is every patient with ALS or another rare disease who now has to worry about the availability of resources, or the doctors who must grapple with funding.

After all, the ALS Association relies on fundraising to provide up to $17 million each year in equipment, treatment, and research grants. But with the fundraisers now canceled or postponed, it seems like their abilities might slow. Researchers are left trying to figure out how to keep their clinical trials moving while also dealing with changing rules and safety guidelines. Other fields of study, including those around heart attacks, stroke, and diabetes, may also be impacted.

Making it Through: Research Benefits of COVID-19

Despite all of the abnormalities, COVID-19 could provide insight to various medical conditions. Dr. Henry Wang reminds patients that though resources seem scarce, labs are operating and working towards finding a cure. He states:

“In a disaster, research is usually an afterthought and takes a second seat next to operational considerations and recoveries. But in a pandemic, this is a very different situation.”

Researchers are now tasked with developing treatments and vaccines. In part, this does require special considerations. To prevent researchers from contracting COVID-19, labs must provide personal protective equipment (PPE). This can be difficult considering how many hospitals across the country are seeking the same supplies.

However, researchers are still pushing forward. Hopefully, they will be able to address those impacted by the pandemic while also continuing research in trials or studies focused around lung injury or neurological problems, both of which may also result from COVID-19. In tackling both at once, they may be able to provide insight into two separate realms.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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