Creating a sense of community during times of isolation: Patient advocacy groups respond to the COVID-19 crisis

Like every corner of the medical community, and communities at-large, patient advocacy organizations are dealing with the rippling effects of the COVID-19 pandemic.  From managing a sharp increase in patient inquiries to quickly shifting meetings and events to virtual formats, advocacy groups across the world are facing countless challenges.  In support of May’s Arthritis, Lupus and Myositis Awareness Month, we reached out to several advocacy organizations to better understand how they are being impacted by the current crisis. 

The cancellation, postponement or “virtualization” of annual peer-to-peer fundraising events and spring galas is a significant concern for many non-profits. However, despite the economic uncertainties, the leaders we spoke with were more focused on developing innovative ways to support patients who are now simultaneously navigating a chronic or rare disease, and a global pandemic. 

“We’ve had to shift our strategic direction a bit in order to respond to the COVID-19 crisis,” said Mary McGowan, Executive Director of The Myositis Association.  The association has developed a number of COVID-specific resources for patients and clinicians, converted all of its patient support groups to virtual formats, and is focused on ensuring that patients remain connected to the organization, to their healthcare providers and to others in the myositis community.  “Having a rare disease is challenging to begin with, but managing a rare disease in this time of isolation is even more difficult.  Now more than ever, we need to ensure that patients are getting the care they need,” said McGowan.

Earlier this month, TMA launched a patient empowerment tool called “My Myositis Tracker” to improve doctor and patient communication specifically for those living with myositis. The tool, supported by a grant from Mallinckrodt, helps patients track symptoms, physical changes and other relevant information to share with their physicians.  It also includes tips for how to better communicate in this emerging time of telemedicine.

The Lupus Foundation of America is also helping to keep its patient community informed and engaged as they contend with the new challenges brought on by the coronavirus.  Faced with a 100% increase in both inquires to its health educators and monthly visits to its website and a 50% increase in requests for materials in Spanish, the Foundation immediately set up a COVID-19 Resource Center within its National Resource Center on Lupus. The Foundation is also working tirelessly to ensure that lupus patients have access to the treatments they need, especially after one drug approved to treat lupus was identified as a possible treatment option for COVID-19 and demand increased.

“Our main priorities right now are ensuring that our patient population has access to the medications they need, the resources they are looking for and the ability to connect with the lupus community,” said Donna Grogan, Senior Vice President, Development & Fundraising. “People want to feel a sense of connection, so we are trying to be there for them in a virtual way more than we ever were before. We were all about the in-person experience and now, we’re all about the virtual experience,” said Grogan.

The Arthritis Foundation is using podcasts as one way to create connections while also informing and uplifting its patient and caregiver community.  A recent episode, ‘Survive & Thrive: Together in Isolation’ featured former pro football player Rob Gronkowski and TV host Matt Iseman, who has rheumatoid arthritis. They talked about chronic pain and arthritis and discussed the challenges that people who live with arthritis face every day.

Last year the Arthritis Foundation launched a scientific study, Live Yes! INSIGHTS, measuring arthritis patients’ perceptions of physical health, emotional health and experience of care.  This year, as the toll of the COVID crisis became more apparent, the foundation relaunched the study to examine how patients were feeling now, compared to a year ago. 

“The results were startling,” said Emily Creek, Senior Director, Help & Support.

While the average pain score remained the same, there was a 26% increase in the number of patients who reported feeling anxious or fearful.  A staggering 88% of respondents in this year’s survey felt anxious or fearful over the past 7 days and 76% felt depressed.1

“The foundation is taking the results of this year’s survey very seriously.  We’ve created a Care & Connect landing page on our website and are devoting considerable resources to creating virtual programming that helps people stay connected, avoid feelings of isolation, and remain physically active,” said Creek.  

We’re inspired by the work these groups are doing on behalf of patients. We are proud to support them and the work they are doing as they continue to provide vital services in response to COVID-19.

The duration of the pandemic is unknown, as is the long-term financial impact for patient advocacy groups.  But there are numerous way to support and collaborate with these or other patient advocacy groups that are important to you or others you care about. 

Donate, volunteer, raise awareness or simply check in on someone you know who’s living with a chronic or rare disease.  Visit the websites below to learn more.


Lupus Foundation of America

Receive a Lupus Foundation of America face mask with a donation of $25 or more. lupus.org

The Myositis Association
Your donation supports myositis research, patient education, support groups and more. myositis.org

The Arthritis Foundation
Help millions of people live with less pain and fund groundbreaking research to discover a cure for this devastating disease.   arthritis.org

References

  1. The Live Yes! INSIGHTS Assessment. March 2019 and March 2020 Initial Analysis Infographic. The Arthritis Foundation. May 2020.

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