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“From Joint Pain to Pocket Pain”: Rheumatologist Testifies at Senate Hearing on Rheumatoid Arthritis

On February 7, 2018, the Senate Special Committee on Aging held a hearing, “From Joint Pain to Pocket Pain: Cost and Competition Among Rheumatoid Arthritis Therapies.” Dr. William F. Harvey, MD, MSc, FACR, a member of the ACR Board of Directors, was invited by the committee to give testimony in which he advocated for reforms that would make it easier for patients to access the care they need at a cost they can afford. Watch the hearing video.

Dr. Harvey’s testimony centered on two main areas of reform. First, he detailed the negative impact of policies that require patients to undergo step therapy or get prior authorization from their insurer before receiving the treatments prescribed by their doctor. Second, he discussed the need to create more transparency around the drug pricing practices that can drive up out-of-pocket costs for patients.

Stressing the unique bond between doctor and patient, Dr. Harvey highlighted the importance of shared decision-making in deciding which course of treatment is most appropriate for treating rheumatoid arthritis. Once a course of treatment is agreed upon, this unique bond can be weakened when insurance companies force patients to receive prior authorization, a lengthy process instituted by insurers to save money at the expense of patient care.

Because it involves an escalating appeals process that could involve negotiating with pharmacists, nurses, clerks and other physicians who may not necessarily have expertise in rheumatology, the prior authorization process can take weeks to complete. Not only does this prevent patients from receiving life-improving treatments in a timely manner, it also forces rheumatologists to spend hours filling out tedious forms and arguing with their patients’ insurance companies. Given the national shortage of rheumatologists, this waste of time further aggravates access to care problems.  

“Every minute spent away from patients is a waste of providers’ time and limits access for other patients.”

Similarly, step therapy mandates mean that patients in pain often have to spend months trying less effective treatments before their insurance will cover the treatment that was originally prescribed. These “out of control and absurd” measures downplay doctors’ expertise in developing appropriate courses of treatment and put patients through unnecessary suffering, Dr. Harvey testified.

Dr. Harvey also addressed the lack of transparency in the pricing practices utilized by pharmacy benefits managers (PBMs), which contribute to higher out of pocket costs for patients. In theory, PBMs should make prescription drugs cheaper by negotiating discounts from pharmaceutical companies. In practice, however, PBMs are not required to disclose the rates they have obtained and, instead of passing benefits onto consumers in the form of rebates or lower co-pay discounts, many of these drug middlemen pocket much of the savings for themselves. Because many patients are only able to find relief in expensive biologic treatments that can cost thousands of dollars each month, patients are often forced to choose between their healthcare or paying their bills - an impossible choice no American should ever have to make.

“Asking [rheumatoid arthritis patients] to pay their ‘fair share’ is immoral and indefensible when it leads to medical bankruptcy.”

To overcome these obstacles, Dr. Harvey expressed support for the following legislative fixes:

  1. Pass the Patients’ Access to Treatment Act (H.R. 2999) or other efforts that limit or cap out-of-pocket expenses for patients, to improve patient access and adherence to expensive biologic and biosimilar therapies;
  2. Promote regulations requiring transparency of prior authorization and step therapy policies and streamline the process by which providers may appeal to override them;
  3. Develop requirements for increased transparency for pharmacy benefit managers – starting with properly defining terms like rebates – and for passing savings directly on to consumers; and
  4. Support adequate funding for the FDA to be able to efficiently and safely approve additional biosimilars, which will drive down overall drug costs by increasing competition.

”Compared to two decades ago, I can look at a person newly diagnosed with Rheumatoid Arthritis and tell them that their hands will never look like the bent fork pin I’m wearing today – so long as they can access the revolutionary therapies that we know can prevent this progression.”

Dr. Harvey was joined by Patricia Bernard, a rheumatoid arthritis patient, Dr. Jack Hoadley, a healthy policy analyst and researcher at Georgetown University, and Terry G. Mahn, JD, Managing Principal at Fish & Richardson and an advisory board member at Bloomberg BNA’s Pharmaceutical Law and Industry Report.

You can read Dr. Harvey’s complete testimony by downloading it from the Senate Special Committee on Aging’s website.