Hello patient advocates! I’m Dr. Will Harvey, MD, MSc, FACR, Clinical Director of the Arthritis Treatment Center at Tufts Medical Center in Boston. I’m thrilled to be starting a new advocacy blog on the Simple Tasks website, where rheumatic disease patients can find up-to-date information about healthcare policies affecting their care, as well as simple ways to take action.
As a practicing rheumatologist and chair of the American College of Rheumatology’s Government Affairs Committee, I’ve seen firsthand how policy decisions made at the federal and state level can personally impact patients living with rheumatic diseases.
If there’s one thing I’ve learned from meeting with lawmakers, it’s that patients sharing their stories with lawmakers is incredibly important. Members of Congress are eager to hear from their constituents. As a patient, you have the unique opportunity to show your lawmakers how their policy decisions affect your ability to access specialized care and medications.
Here are just a couple of the current policy issues that may affect your healthcare, and ways you can take action right now:
1. High Price of Specialty Medications
If your doctor has prescribed a biologic to help manage your rheumatic disease, you may be one of the thousands of U.S. patients experiencing sticker shock when it comes to the cost of your copay. That’s because a growing number of insurers are placing biologic treatments on so-called “specialty tiers” that require patients to pay a percentage of the drug cost instead of a fixed copayment. Patient copays for these specialty tier therapies can range from $500 to more than $5,000 each month. In fact, one in six patients with rheumatic arthritis have reported reducing their medications due to cost.
H.R. 1600, The Patients’ Access to Treatment Act (PATA), has been introduced in the U.S. House of Representatives by Reps. Lois Capps (D-CA) and David McKinley (R-WV). If enacted, PATA would limit patient cost-sharing requirements for expensive specialty tier drugs and increase access to life saving biologics.
To voice your support for the Patients’ Access to Treatment Act, please click here.
2. Investment in Medical Research
Medical research funded by the National Institutes of Health (NIH) – the largest source of funding for medical research in the world – has led to extraordinary improvements in the lives of patients living with rheumatic diseases. Yet, the NIH receives nearly 25 percent less funding than it did in 2003. Increased federal funding is crucial to advancing treatment and cures.
Arthritis research is particularly important for U.S. veterans. One in every four veterans has been diagnosed with arthritis, which is the second leading cause of discharge from the U.S. Army. Although the Department of Defense (DOD) has a dedicated research budget for more than 20 specific diseases, arthritis does not yet have a dedicated research program.
To voice your support for investment in medical research, please click here.
Other Ways to Get Involved
Looking for even more ways to get involved? Here are some other ways to advocate:
- Schedule a meeting with your members of Congress in their local district office with ACR’s easy Guide for Local Congressional Meetings.
- Share your story with us about challenges you have experienced accessing specialists or medications.
- Join the conversation on social media by following the Simple Tasks Facebook and Twitter accounts, and by using the #Act4Arthritis hashtag to talk about policy issues affecting your healthcare.
Thanks for your work as an advocate. And please be sure to check back regularly for new legislative updates, tips for advocacy, patient stories, and more.
With patients and doctors working together, I have no doubt that Congress will notice our efforts and understand the importance of our requests.
Dr. Will Harvey