While the entire world has been brought to a standstill by the COVID-19 pandemic, many people reacting – rationally and irrationally – to the threat of the virus are healthy, young, and seemingly at low-risk for long-term or dire health consequences. Those with SMA, on the other hand, are used to dealing daily with the realities of chronic disease but are now uniquely impacted by the spread of this novel coronavirus. There are direct effects of COVID-19 on the SMA community, as SMA patients grapple with how to prevent infection. However, indirect effects of the virus, such anxious citizens and a stressed healthcare system, are also impacting those with SMA, though perhaps in less obvious ways.
Here are 4 things that are impacted by COVID-19 and that matter for the lives of those with SMA and the broader SMA community:
- Daily life. As a group that is more at risk than the general population, those with SMA need to take extra precautions to avoid contracting the new coronavirus. These measures are much like the ones that everyone else should be taking as well – i.e. distancing themselves from others, refraining from touching their faces, and washing their hands and frequently-used surfaces often. However, knowing that the virus is spreading and that it could be lethal for those with SMA is affecting daily life for those with SMA and their loved ones as they grapple with the ensuing anxiety. Patients with SMA have begun reporting on their personal perspectives on dealing with life and their disease in the context of COVID-19. BBC Ouch Podcast has aired a show that includes a discussion on the impact of COVID-19 with SMA patient Octavia Woodward.
- Employment decisions for family and caregivers. The loved ones and caregivers of those with SMA, who may be young and healthy also have to be especially careful about exposing themselves to the virus if they are going to continue to interact with SMA patients. As such, there are now reports of SMA caregivers worrying that they could infect SMA patients, with potentially fatal consequences. Family members of SMA patients too have voiced these concerns and are therefore choosing to stop working to protect their loved ones.
- Drug availability. The use of the SMA drug Spinraza has been delayed at many hospitals as hospital staff prioritize patients with COVID-19. The hope is that the disruption will be short-lived and that minimal postponements in treatment will not be associated with significant changes in outcomes. Perhaps less impactful to SMA patients in the short-term but still important is the influence of the current environment on the availability of new drugs that patients cannot yet generally access outside of clinical trials. The FDA’s decision on Roche’s SMA drug risdiplam, for instance, could be delayed.
- Research and development efforts. As a result of the virus and concern over its rapid spread during large group gatherings, large events where participants aim to raise money for diseases like SMA have been canceled, limiting resources for upcoming SMA research and development. Major convenings that lead to critical research and development collaborations and that involve the dissemination of crucial scientific data are also being indefinitely delayed. One especially important annual conference for the SMA community, the Muscular Dystrophy Association Clinical and Scientific Conference, which was supposed to take place in Orlando, Florida from March 22 to March 25, is on hold. The international biotech convention BIO, scheduled to begin June 8th in San Diego, has also been delayed, as have several other potentially relevant medical and scientific conferences. Events
If COVID-19 can be quickly contained and its rampant spread slowed, then the overall effects on the SMA community and other high-risk populations will be minimized. Parents of children with SMA and SMA patients themselves are therefore making pleas to public to do their part to safeguard these vulnerable populations. They ask not only for citizens to heed the social distancing recommendations but also to consider purchasing only what they need rather than stockpiling goods such as cleaning products that may be essential for the protection of high-risk individuals.
During this unprecedented public health crisis, people with SMA continue to inspire others. This inspiration is even serving in the fight against COVID-19. The creator of a technology that has been suggested as a platform for combatting the pandemic, for instance, entered healthcare as a result of a childhood friendship with a boy with SMA. As stories of the courage of those with SMA facing COVID-19 come to light, we are sure to garner even more inspiration from and for the SMA community.