• Pathways to Trust

It’s a Tough Time…but It’s Even Tougher for Rare Disease Patients

Updated: Jun 10, 2020

Rare disease patients are carrying extra baggage in this pandemic-dominated world

Rare disease patients are carrying extra baggage in this pandemic-dominated world. This virus is unpredictable, both in whom it infects and in how it manifests in each individual. And rare disease patients know that COVID-19 can affect them in multiple ways beyond just the physical. Over the last several months, rare disease patients have been facing two fears: getting infected with COVID-19, and not being able to continue treating the condition they are already trying to manage.


This strain of coronavirus is highly contagious, and it is understandable that people fighting a rare disease wonder if it can invade their bodies easier than it does a healthier person. To compound this fear, many rare diseases require hands-on treatments, such as infusions, which are administered in hospitals or other healthcare facilities. To stay alive, they have to put their lives at risk by going out of their homes to heavily-trafficked places and interact with healthcare professionals who are treating many sick people. It is more than a little unsettling. Beyond the fear of the risk the virus poses to their health, rare disease patients fear that they may not be able to acquire the drugs and treatments they rely on to stay alive. First of all, they may not be able to afford their medications. According to the National Organization for Rare Disorders, NORD, 29% of rare disease patients have lost their jobs as a result of COVID-19, and 11% of that group also lost medical insurance.

Beyond the fear of the risk the virus poses to their health, rare disease patients fear that they may not be able to acquire the drugs and treatments they rely on to stay alive.

Additionally, the drug supply chain has experience interruptions with recent manufacturing plant closures, and even the ones that are open have experienced significant staff reductions in order to maintain social distancing in the workplace. Many of the treatments that are human-derived, such as plasma-based therapies, cannot be manufactured in the usual quantities, because donors are not as plentiful while people are afraid to come out of their homes. In the heightened security environment, safety protocols are more involved, further delaying production. And once the drugs are manufactured, travel restrictions have caused delivery delays, also impacting supply. The effects of the medical industry’s reactions to COVID-19 will extend beyond the short term. In the rush to find treatments and a vaccine, resources including funding and scientific investigators have been detoured away from research on rare disease therapies toward research on the virus. We cannot predict how far back that will set the development of new, lifesaving therapies. We cannot calculate how it will impact the loss of life.

So what do we do until this situation passes? There is some help out there for individuals to help with immediate needs. If your condition requires infusion therapies, many providers are working with home care companies to switch to at-home infusions. Check with your provider to see if you can be accommodated. If affording your medicines has become a challenge, check with the drug manufacturer. Many pharma companies have expanded patient access programs to help those newly in financial need due to the pandemic. And if your living expenses are now beyond your means, NORD has established the Critical Relief Program to provide financial assistance with non-medical needs such as rent/mortgage payments, cell phone/internet charges, utility bills and auto maintenance.


To help make sure that assistance like the examples above continue and maybe even expand, visit the Rare Disease Clinical Research Network (RDCRN) website and fill out the online survey to help measure the effect of COVID-19 on people with rare diseases at www.rarediseasenetwork.org/COVIDsurvey.


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