Team U-M Makes Big Impact on The Hill

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Team U-M, consisting of fellow Dr. Adam Kilian and patients Shannon and Cindy Bourke, represented the Division of Rheumatology at the annual American College of Rheumatology (ACR) Patient Advocacy Meeting that took place September 23 - September 25 in Washington D.C. Also included were Amy Turner from the ACR Advocacy Group and Dr. Kristi Kuhn, Rheumatologist from the University of Colorado. As advocates, Team U-M had the opportunity on behalf of all patients with arthritic diseases to share their concerns with, and be heard by, State Congressional Representatives.

The morning segment focused on the current political landscape and its impact on health care policy. In the afternoon, the Educational Program focused on current legislative and regulatory issues facing the rheumatology community, and included a special talk from Angus Worthington, MD, chair of the ACR's Government Affairs Committee. The team practiced Hill visit scenarios and received a meeting schedule with Representatives on the Hill for the Tuesday Meeting. The day concluded with dinner and a chance to meet and speak with other advocates from across the United States.

During the Monday session, they were provided with the “Legislative Requests”, or ”Asks”, which they would bring to the Hill during their meetings the next day.

Legislative Requests/Asks:

Instead of Fail First, Put Patients First

  • House co-sponsor H.R. 2077, the Restoring the Patients’ Voices Act
  • Senate: Introduce companion legislation to H.R. 2077
  • Step Therapy forces patients to try therapies preferred by the insurance company before being approved for the therapy their doctor prescribed, even when doctors are certain the “preferred” option won’t be effective. Many patients must try multiple drugs before finding one that works for them. This delay of care is a de facto denial of care. Further, patients may be subject to step therapy retroactively when they change insurers, forcing them to step back and receive ineffective measures to document failure, even when they were previously on effective therapy. An Arthritis Foundation survey found that most respondents experienced negative health effects following delays from the right treatment, causing patients undue pain and the possibility of further irreversible joint damage.

Support Improved Access to Osteoporosis Testing in Medicare:

  • H.R. 1898/S.3160
  • Senate: S.3160
  • Osteoporosis causes bones to become brittle and porous, and likely to break. It is tested by measuring bone density with a dual-energy x-ray absorptiometry (DXA) machine. A DXA identifies patients with a high risk of bone fracture and is used to monitor the effectiveness of medical therapy to prevent and treat osteoporosis. 1
  • Medicare reimbursements for DXA have dropped 70% in the last decade from $140 in 2007 to $42 In 2018. Current payment rates do not cover the physician’s cost for providing these services. 1

Why is this important?

  • Approximately one in every two women and up to one in every four men over the age of 50 will break a bone due to osteoporosis.
  • 25% of women over the age of 50 who sustain a hip fracture die in the year following fracture, while 50% never walk independently again, and 20% require permanent nursing home placement.
  • Older women who receive a DXA scan have 35% fewer hip fractures than those not tested. 1

Create a Standalone Arthritis Research Program at the Department of Defense: Dedicate $20M a year to Arthritis Research

  • In 2003, researchers used the Department of Defense Serum Repository, a unique resource containing nearly 30 million specimens to identify early blood markers of lupus amongst service members. These markers are now used by rheumatologists to detect lupus in the general population, which leads to earlier diagnosis and treatment. 2
  • Arthritis is the second leading cause of disability in our Armed Forces. 33% of veterans are diagnosed with arthritis, compared with 20% of the general U.S. population.
  • Using the DOD’s Serum Repository would not add any additional cost. This is money already in a “slush fund”. Team U-M simply asked for $20M a year be given for Arthritis Research inclusively.

Team U-M met on the Hill with Senators Debbie Stabenow and Gary Peters, as well as Advisors Jett Thompson, Legislative Director for Mike Bishop, and Bridget Dobyan, Legislative Director for Dave Trott.

Overall, the “Asks” as presented were well-received. The Representatives were open, heard the patient advocates’ stories, and promised to consider supporting the team's “Asks”.

1 https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2011.0233

2 Arbuckle, MR1, McClain MT, Rubertone MV, Scofield RH, Dennis GJ, James JA, Harley JB: In: New England Journal of Medicine. 2003. Available from: https://www.ncbi.nlm.nih.gov/pubmed/14561795