Yesterday, the Lupus Foundation of America participated in a virtual briefing with Congress to share the unique impacts of the COVID-19 pandemic on people with lupus. This briefing was held by the Protecting Immunocompromised Collaborative which is led by the Immune Deficiency Foundation (IDF), The AIDS Institute, the American Autoimmune Related Diseases Association, the Lupus Foundation of America, and Susan G. Komen, and ensures that the immunocompromised community has a voice in addressing all policy issues impacting their health and wellbeing.
During the briefing, Lupus Foundation of America Ambassador and Advocate Monique Gore-Massy shared how she and the lupus community has been uniquely impacted by the pandemic. She addressed how telehealth was a valuable option for meeting with her care team, but also shared its shortcomings for people without reliable internet connections. Monique also highlighted her fears – fears of leaving her home during the pandemic to receive intravenous medications at her doctor’s office, fears of the world opening up and moving on without her and others with lupus, and fears of being disconnected from her friends and family.
Patrick Wildman, LFA’s Vice President of Advocacy and Government Relations further addressed the ways in which the lupus community is uniquely impacted by the COVID-19 pandemic and the solutions that our policy makers must make available. Challenges he addressed included:
- Access to medications, especially hydroxychloroquine during the shortage and ensuring this doesn’t happen again
- Access to care, including appointments with physicians, intravenous treatments and other care considerations that can make people with lupus more vulnerable to COVID-19
- The impact of mental health on people with lupus
- The impact on the progress made in important clinical trials
- The impact that reopening can have on people with lupus, including how routine COVID-19 screening questions often ask about symptoms that are common daily symptoms for people living with lupus
Actionable solutions that the Lupus Foundation of America shared during the briefing included:
- Further support for awareness and education programs on COVID and lupus, like those that are a part of the Centers for Disease Control (CDC) Lupus Registry program, that raise awareness among physicians of diagnosis, care and COVID impacts.
- Ensuring access to care and treatment, including:
- Ongoing access to telehealth after the pandemic
- Prioritization for COVID-19 vaccination for people with lupus and their caregivers
- More research and clinical trials on how COVID impacts people with lupus, especially in regards to treatment and vaccines
We will continue to keep you updated on the Lupus Foundation of America’s ongoing advocacy efforts to ensure that policymakers understand how people with lupus are uniquely impacted by the COVID-19 pandemic and urge their support for actionable solutions that support people with lupus and others who are immunocompromised. For more information on the Protecting Immunocompromised Collaborate visit primaryimmune.org/immunepolicy.
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