AARDA Advocating for Policies Important to Autoimmune Patients
April 6, 2020
AARDA Nationwide Advocacy
AARDA Ramps Up Efforts to Eliminate Unwarranted Step Therapy & Other Restrictions
April 7, 2020

Patients Deserve Better


Copay assistance coupon programs are a financial lifeline for people with autoimmune diseases and other conditions who face an uphill battle to meet cost-sharing requirements, adhere to a regimen of one or more medicines, and balance other household expenses.

In late January, the Administration proposed to allow insurance plans and others to no longer count the value of copay assistance coupon programs offered by manufactures of prescription drugs against annual cost-sharing limitations. This policy can prevent patients from meeting out-of-pocket caps, subjecting them to extended cost-sharing and financial hardship, causing many to defer or delay taking their medicines as prescribed and suffer set-backs to their health.

With significant patient group and APC partner support, AARDA spearheaded a campaign to encourage the Administration to withdraw this flawed and problematic proposal. The policy change was proposed and then side-lined last year. And the timing could not have been worse. For people with autoimmune disease, serious illness and chronic conditions, this is not the time to take away a proven, critical support for patient access, adherence and health.

Over the course of two weeks, AARDA and partners generated a lot of strategic “noise” to motivate the Administration to back away from the NBPP proposal and in the weeks since, consider allowing manufacturers to extend copay assistance to Medicare beneficiaries.

  • AARDA was joined by 43 patient groups on a comment letter to CMS opposing the proposed NBPP rule that would undermine copay assistance coupon programs; AARDA signed several other letters (All Copays Count and I Am Essential) to emphasize various perspectives on why this proposal would be bad for patients.
  • A comprehensive social media campaign generated more than 2.4 million impressions through The Hill, Rollcall, FoxNews.com, NYT, WSJ, and the Atlantic.
  • AARDA CEO joined Dr. Ken Thorpe, Chairman of the Partnership to Fight Chronic Disease, in a satellite radio and television tour on February 27,th reaching audiences in 22 markets across the country. Local media were very interested in this topic, with several on-air anchors indicating that they themselves benefit from copay assistance coupons offered by drug manufacturers and questioned why the Administration would take away this critical support from patients.
  • AARDA CEO met by telephone with Randy Pate, Director of CIIO at CMS, on March 11th to reiterate patient community opposition to the NBPP proposal. With the COVID-19 pandemic looming as a significant threat to those with underlying conditions, generating fear and disrupting access to medicines, treatments, and household income critical to maintaining their health and well-being, it clearly makes no sense to pursue this policy change. AARDA polled patients and shared their heartfelt, compelling stories to emphasize this point.


“I have MS and currently receive copay assistance from Biogen for my Tecfidera. I was diagnosed with MS just last year on 2/20/19 at 26 years old. This copay assistance currently counts towards my deductible and out of pocket maximum. If this didn’t, not only would I have to pay out the entire out of pocket max on other doctor’s visits, but my copay assistance would run out” said Sarah in her comments to CMS. “If I was out or copay assistance, how is someone supposed to pay $2795/month for one medication, on top of your out of pocket insurance maximum? Obviously that’s impossible unless you’re rich. I certainly can’t do that on my grad student stipend income…. anyways I just wanted to submit my comments as to how this would affect patients who wouldn’t be able to get their medications anymore and then the disease progression would take over, developing new lesions if I can’t get my medications due to cost.”

Sarah was among several hundred individuals who contacted CMS as part of our campaign in support of drug manufacturer copay assistance programs.

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