On November 17, 2016, the Coalition for Accessible Treatments held a Congressional briefing that focused on high out-of-pocket drug costs and potential policy solutions to increase patients’ access to life-saving therapies. The briefing was hosted by the Coalition for Accessible Treatments, a group comprised of more than 30 national patient advocacy and professional medical organizations, including the American College of Rheumatology (ACR).

The Panel

  • Dr. Angus Worthing, MD, FACP, FACR; Chair, American College of Rheumatology (ACR) Government Affairs Committee; Rheumatologist, Arthritis and Rheumatism Associates, P.C.
  • Jaime Weinstein, Patient, Crohn’s & Colitis Foundation of America
  • Elizabeth Krempley, Patient, Arthritis Foundation
  • Brian Connell, Senior Director, Federal Affairs at The Leukemia & Lymphoma Society, and Co-Chair of the Coalition for Accessible Treatments

The Problem

The briefing focused on the issue of specialty tier drug pricing, an increasingly common practice among U.S. insurers in recent years. Under the specialty tier pricing system, insurers place expensive drugs like biologic therapies on to so-called “specialty tiers” that require patients to pay a percentage of the drug cost as part of their copayment, rather than a fixed copayment amount. Because specialty drugs are expensive, patient coinsurance for these drugs can easily reach thousands of dollars each month, leaving many people struggling to afford their medications.

Jamie, one of the panelists who lives with ulcerative colitis, recalled how she had to quit her job and go on disability in order to get health insurance because her costs were so high. Elizabeth, another panelist who lives with rheumatoid arthritis, described how the first doctor she saw said that “only Bill Gates could afford to pay out of pocket for this disease.” She was only able to get better after she joined her mother’s health plan – thanks to a provision in the Affordable Care Act (ACA).

High patient cost-sharing for specialty drugs is a major problem for people living with rheumatic diseases who, even with insurance coverage, are not able to afford the biologic therapies that can help them manage their conditions, avoid long-term disability, and remain in the workforce. Specialty tier coinsurance practices go against the basic premise of insurance and can lead to serious, adverse health consequences.

Dr. Worthing, who represented ACR on the panel, talked about how many of his patients have difficulty affording specialty drugs and instead are forced to consider cheaper, less effective treatments that aren’t suited to their needs. Other patients are forced to underutilize their treatment by skipping doses or going without their prescription entirely. When people living with chronic illnesses are not able to take specialty drugs as prescribed due to cost barriers, they can experience adverse reactions and their health can worsen. For people living with rheumatic diseases, these access barriers can lead to permanent joint damage, disability, expensive corrective surgeries, and ultimately higher healthcare costs down the road.

Solutions

A number of solutions to high cost-sharing for specialty drugs were discussed during the panel. Among them is the Patients’ Access to Treatments Act (H.R. 1600), which limits patient cost-sharing requirements for specialty drugs. ACR fully supports this legislation and we encourage the next Congress to pass this bill as soon as possible.

As Dr. Worthing noted at the close of the briefing, “We have life-saving drugs at our disposal. Now we just need to make sure patients can afford them.”