The patient voice helps ensure a winning strategy is delivered and impactful policy change is adopted. Patient advocates are instrumental in creating more awareness about rheumatic diseases among our members of Congress, as well as advancing legislation that protects patients’ rights to receive timely, appropriate, safe and affordable healthcare.
Patients are constituents, too, and have personal stories that illustrate the issues faced every day in the rheumatology community. Their perspectives often include firsthand experience with the challenges of accessing rheumatologic care or treatments. Our patients can also highlight the need for more research funding to advance breakthroughs in patient care. The patient effort is necessary to gain national awareness on public health issues that affect patients with rheumatic diseases.
How Can You Involve Your Patients in the ACR’s Advocacy Efforts?
- Encourage patients to apply to attend the ACR’s annual Advocates for Arthritis conference in Washington, D.C. Registration opens this summer: Advocates for Arthritis engages ACR members and patient advocates in political advocacy and increases awareness of rheumatology issues on Capitol Hill. Participants meet with members of Congress and their staff to discuss current legislative issues that affect the rheumatology community as a whole. This is an opportunity for members and patients to establish valuable relationships with both legislators and their staff.
- Encourage patients to contact Congress by visiting Simple Tasks’ Legislative Action Center. Elected officials rely on constituent input to be effective legislators, and ongoing communication is the only way they will know how their constituents feel about particular issues. Encourage your patients to call, write or meet with their members of Congress to educate them about the diseases and conditions affecting the patients’ quality of life. Patients can visit the ACR’s legislative action center to find contact information for members of Congress.
- Encourage patients to share their story through the ACR’s Simple Tasks campaign. If your patient has a testimonial of how access to services or treatment has adversely affected their life, encourage them to contact [email protected] to share their story.
Getting involved in advocacy is a great way to influence the legislative process. Without the patient voice, delivering meaningful results would be difficult, if not impossible. Remind your patients that their voice is needed and their actions will make a difference to rheumatology.
Joan M. Von Feldt, MD, MSEd, FACR, FACP, is the president of the ACR, professor of medicine at the Perelman School of Medicine at the University of Pennsylvania. She is also staff physician at the Philadelphia VA Medical Center.