Page 7 - Arthritis Foundation Annual Report 2013

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7
Leading the Way: Access and Advocacy
Through our network of 78,000 advocates, we’re working to help more Americans with arthritis have easier
access to coverage, better care and improved health.
We are leading the way to keep drugs accessible through:
Legislation
We are fighting federal- and state-level barriers to care, such as “specialty tiers,” which cover essential
drugs at only 50 percent or less. The federal Patients’ Access to Treatments Act (H.R. 460) was
reintroduced in 2013 to end specialty tiers, and we are actively recruiting and training advocates to inform
and push for meaningful change through similar state legislation.
RESULT:
The advocacy work
of the Arthritis Foundation was critical in the enactment of the new specialty tier law in Delaware
(SB 35) that caps copays for a single medication at $150 a month for up to a 30-day supply.
Private Drug Plans
In 2013, a large pharmacy benefit company excluded 70 percent of a group of important drugs for people
with arthritis: the tumor necrosis factor (TNF) inhibitor biologics and a Janus kinase (JAK) inhibitor.
Excluded tier is a category for drugs that makes them unqualified for reimbursement at any level. We
worked with the company regarding access to the full range of treatments.
RESULT:
Patients who were
already receiving specific arthritis medications in 2013 continue to access those drugs at a discounted price
in 2014. For new patients, the company works with them and their health care provider to identify medically
reasonable alternatives.
Government Drug Plans
In the fall of 2013, our E-Advocates sent 2,500 letters regarding restrictions to medications to the Centers
for Medicare/Medicaid Services (CMS) in just three weeks.
RESULT:
Because of our quick mobilization, we
made our voices heard, and CMS reconsidered its decision to limit access to biologic drugs approved for
arthritis; most are now included.
Addressing the Health Care Needs of Children
With Arthritis
Rylee Ann Laya of West Virginia travels nearly 200 miles to see her doctor
due to a critical shortage of specialists. Currently, there are fewer than 250
board-certified, practicing pediatric rheumatologists in the United States.
Eleven states have none at all. We are working to address the critical need for
pediatric rheumatologists by advocating for increased expert care for children
with arthritis.
I’ve had arthritis for as long as I can remember. By the time I was 9, I couldn’t open a water
bottle, button or zip my clothes, or at times even hold a pencil. I want to tell my story so that
Congress knows the true impact of this disease.”
– Ryan Donnelly, Edison, NJ
Arthritis Foundation advocates successfully fought to maintain
$557 million in research
funding
at the National Institutes of Health, Centers for Disease Control and Prevention, and Department
of Defense in the 2013 appropriations bill.