The ACR advocates on behalf of the rheumatology community throughout the year, but it’s always especially exciting when patients join our efforts in Washington, D.C. Close to 100 patients, rheumatologists and representatives of the broader interprofessional team traveled to our nation’s capital this week to participate in the ACR’s annual Advocates for Arthritis event.
Participants began the conference on Monday with an in-depth, day-long issues education and training program. In addition to learning basics and best practices for advocacy, participants also reviewed the issues they would discuss with lawmakers during the week. Ensuring patient access to high-quality rheumatology care was top of the agenda this week, with advocates discussing such issues as step therapy, funding for arthritis research, patient access to osteoporosis testing and proposed physician payment reforms with their lawmakers.
Advocates raised the alarm that relationships between patients, doctors and rheumatology interprofessional team members are under threat by a proposal to cut Medicare evaluation and management services. They asked Congress to intervene, because there is already concern that these time-intensive services—which include examinations, disease diagnosis and risk assessments and care coordination—are already grossly undercompensated. Further cuts would threaten access to care and exacerbate the rheumatology workforce shortage.
Doctors, rheumatology interprofessional team members and patients alike also advocated for Congressional action to increase access to dual-energy X-ray absorptiometry (DXA), a bone density test. The test identifies patients at high risk of bone fracture and is used to monitor the effectiveness of medical therapy. Medicare reimbursement for DXA has dropped by 70% since 2007 and no longer covers the cost for the provider to administer the test, forcing patients to seek scans in more expensive settings, such as hospitals.
Patient advocates were also able to share their frustrations with the insurer practice of step therapy (aka fail first), which forces patients to try—and fail—an insurer’s preferred therapy before insurance will cover the therapy prescribed by the patient’s doctor. In addition to sharing their personal experiences, advocates also asked legislators to support the Restoring the Patient’s Voice Act (H.R. 2077). This legislation would put patients first by creating a clear and transparent process for patients with employer-sponsored insurance to seek exceptions to mandated step therapy.
This year’s agenda also included a request for dedicated, line-item research funding for arthritis. The Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) is designed to fund medical research for the benefit of U.S. service members, but even though arthritis affects one in three veterans (compared with one in four civilians) and is the second leading cause of medical discharge from the Army, arthritis is not a research topic with specific, dedicated CDMRP funding. Advocates asked Congress to address this oversight so patients who suffer can benefit from groundbreaking research.
There is always a huge need for advocacy, particularly during this time of significant proposed policy shifts in healthcare. Although the results may not always manifest immediately, the engagement of ACR members and our patients in the legislative process does immediately raise awareness of rheumatology on Capitol Hill. Every single advocate is helping change the healthcare landscape for rheumatology patients for the better.
Unable to Make It to Washington?
You can still be an advocate. Ask your elected officials to:
- Protect time with patients: Don’t cut evaluation and management services;
- Limit step therapy: Instead of fail first, put patients first; and
- Fund arthritis research through the Department of Defense.
For more information, follow us on Twitter (#act4arthritis).
