RECOMMENDATIONS RELATED TO SMA CARE DURING THE PANDEMIC

A paper has been published in April 2020 by expert leaders in SMA from across the United States and Europe, which includes an examination of the effects of delayed treatments. The authors discuss consensus recommendations pertaining to care of SMA patients during the pandemic.

• The Corona Virus Disease 2019 (COVID-19) pandemic has resulted in reorganization of healthcare settings affecting the delivery of clinical care to patients with spinal muscular atrophy (SMA).
• There is a concern that patients with SMA may be at increased risk of manifesting severe symptoms of COVID-19.
• Currently approved therapies for SMA improve survival and motor function, however, their delivery requires an increased exposure to the health system and a dedicated healthcare team.
• In this paper, the authors discuss consensus recommendations pertaining to care of SMA patients during the pandemic highlighting that SMA treatments should not be perceived as elective.
• Decisions regarding the delay of treatments should be made with consideration of the potential risks of COVID-19 exposure and the risk of that delay.
• The authors emphasize the importance of collaborative treatment decisions between the patient, family, and health care provider, considering any geographic or institution-specific policies and precautions for COVID-19.

If you have any questions or concerns about your or your child’s treatment during the pandemic, call your Healthcare team to discuss the plan that meets your health needs balanced with best outcomes of treatment.