The COVID-19 pandemic has negatively affected people from different backgrounds and all walks of life. The struggle of one particular group has gone largely unnoticed – people diagnosed with rare diseases.
In the U.S., according to the Orphan Act of 1983, a rare disease is defined as a condition that affects fewer than 200,000 Americans. There are 7,000 kinds of rare diseases in the country. And although each disease affects fewer than 200,000 people, every one in ten people is likely impacted by one of these diseases.
It is therefore essential that the struggles of rare disease patients and their caregivers during the pandemic are given adequate attention.
Effects of Covid-19 on the Rare Disease Community
Thus far, the pandemic has caused a variety of issues including limited access to healthcare and added stress and anxiety.
A survey conducted by the National Institutes of Health confirmed that access to medicine and medical treatment was one of the most common initial concerns of rare disease patients and their families when the pandemic hit.
According to the Rare Genomics Institute, half of the individuals with rare diseases are children. This has introduced another challenge when it comes to facing the threat of the pandemic.
The survey also mentioned that the families affected were concerned about the status and continuity of clinical trials. This is because these diseases pose a certain level of difficulty when it comes to research because of how rare patients are. This means many of these conditions have limited treatment options even before COVID-19.
This is one of the issues being addressed by patient advocacy organization partnerships, including Rare Patient Voice. We have been empowering rare disease research studies by offering study volunteer opportunities, making sure that there is continuity in the development of treatments and improvements in medical access.
According to another survey by the National Organization for Rare Disorders, telehealth has been particularly helpful according to rare disease patients and their caregivers. Because of the rarity and difficulty of some of these diseases, before the pandemic and the subsequent rise of telehealth, 39 percent of patients travel more than 60 miles just to access the appropriate medical care.
The survey also mentioned that the development of this technology is also having positive impacts on other facets of life of these patients and their families. One example is how some patients can now actively participate in work and schooling without having to worry about missing medical appointments.
This increased coverage of telehealth was also facilitated, in part, by the federal government. When the pandemic struck in early March of 2020, the government started taking steps to expand the reach of telehealth services that were previously intended primarily for patients in rural areas.
The government impetus opened doors for out-of-state medical practitioners to offer their services across state lines. Many private insurers also followed suit to include telehealth services in their coverages.