Instead of inviting a single celebrity spokesperson to partner with the ACR on public service announcements, this year’s RDAM will focus heavily on individual patients’ voices and perspectives. These voices will be highlighted in a series of videos recorded by three diverse patients suffering from different rheumatic conditions. The videos will be available on the RDAM website and the ACR’s YouTube channel. Additionally, this year’s RDAM campaign will, once again, feature a satellite media tour and social media campaign to spread awareness of these issues, emphasizing this year’s theme.
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Patients can play a key role in advocacy. In the COVID-19 era, this is more important than ever. Many rheumatology patients are at high risk for COVID-19, yet financial strains continue to mount on many physician practices, which provide key patient assistance. The RDAM website provides a template for patients to write to legislators to urge continued financial aid for rheumatology practices, as well as continued support for critical telemedicine services.
As another key advocacy component, patients are also encouraged to share their personal stories on the RDAM website. Patients can discuss their personal challenges, such as finding rheumatological care, getting access to needed medications or other thoughts about living with rheumatic disease. These can include issues related to COVID-19, such as the personal impact of hydroxychloroquine shortages.
The ACR would like to encourage its members to discuss these initiatives with rheumatology patients and their family members, directing them to the RDAM website. The website provides multiple resources, including general information on rheumatic diseases and COVID-19, as well as details on the Rheumatology Research Foundation. Key findings from the 2020 rheumatic disease patient survey will also be available on the website and social media, as well as during the satellite media tour.
Even before the COVID-19 pandemic, rheumatology patients were a medically vulnerable population, not always able to access the affordable care and treatments they urgently need. The COVID-19 pandemic and past several months have underscored that vulnerability and enhanced the need to increase public knowledge of the important role of rheumatologists and the needs of these patients. The ACR encourages its members to engage the patient community to tell their stories. Help them have their voices heard.
Ruth Jessen Hickman, MD, is a graduate of the Indiana University School of Medicine. She is a freelance medical and science writer living in Bloomington, Ind.