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- Helen Keller

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ABDA Advocates for Policies Important to People Living with Behcet's Disease and with Rare Diseases

The American Behcet's Disease Association advocates for policies affecting the lives of patients and their families. Our efforts aim to affect change, actively work on proposals to protect and improve key policies at the local, state and federal levels and ultimately improve patient outcomes and quality of life. Addressing issues such as access to care, treatment innovations, research and healthcare policies, the voice of patients in policy and treatment development is of utmost importance. We encourage the community to reach out to elected officials through "call to action" initiatives.

April 28, 2021

ABDA Statement and Concerns Over the Drug Pricing Bill reintroduced in April, 2021 is sent to Capitol Hill:

Last week, under the leadership of Speaker Nancy Pelosi (D-CA), House Democrats reintroduced legislation to lower drug costs, bill number HR3. While we applaud efforts to lower drug costs, the American Behcet’s Disease Association is very concerned with the reference pricing policy included in this bill.

Patients with Behcet’s and other rare disorders fight an uphill battle in managing their complex health conditions. Every day they face new challenges to maintaining their health, which ultimately affects their work, family, and overall wellbeing. These patients have a lot of hope for innovation and the development of future treatment and cures. HR3 would impede this innovation and threaten development by importing price setting measures from other countries. All six of the countries being proposed as references for this policy restrict access to innovative treatments for many diseases and delay when medicines come to market, thereby creating an enormous barrier to accessing vital treatments and cures.

We believe this proposal is misguided and harmful for patients, especially in an environment where the COVID-19 pandemic has already created disruptions in care, limits to treatments, and challenges to accessing physician practices. With the proposed reference pricing model, there is a tremendous risk of exacerbating these access problems and ultimately impacting health outcomes for the most vulnerable patients.

Lowering drug prices is meaningless if patient access and research into new medications are sacrificed in the process. On behalf of our community, we urge Congress to reject HR3 and instead consider reforms that will alleviate burdens for patients. Policies like out-of-pocket caps and reforming the role of pharmaceutical benefit managers would be positive reforms that would directly benefit patients, while also encouraging the innovation necessary to find much needed cures.

There is a lot of hope in the pipeline for rare disorders. HR3 needs to be stopped in order to keep that hope alive for our patients.

Call to Action

Let My Doctors Decide is a national partnership of leaders across health care in support of step therapy reform in dozens of states. Please send a message to your legislators encouraging them to support the Safe Step Act. Find your legislators here.

Alternatively, if you’re unable to mail a letter, fill one out on line by visiting Support the Safe Act.