Advocacy

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 aim to 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. As patient partners, we encourage the community to reach out to elected officials through "call to action" initiatives.

Call to action

July, 25, 2020

Yesterday President Trump signed an executive order pursuing the International Pricing Index (IPI) Model. While we appreciate efforts to lower drug costs, the pandemic has created disruptions of care and access to physician practices during COVID-19. Patients access to appropriate therapies is extremely limited in the current healthcare environment. With this planned change in legislation, there is a tremendous risk of exacerbating this access problem. The addition of hurdles will result in significant issues for patients and providers. The American Behcet's Disease Association (ABDA) is once again calling on the Administration to abandon the IPI Model and focus on patient-centered reforms in order to maintain quality care for all. Ask legislators to put patients first. Find your elected officials here: https://www.usa.gov/elected-officials

May 1, 2020

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 legislators here: https://www.usa.gov/elected-officials

Access the template to write to your legislators hereSafe Step Act Advocacy Letter

Alternatively, if you’re unable to mail a letter, fill one out on line by clicking on Support the Safe Act: https://www.aarda.org/get-involved/action/voter-voice/

April 23, 2020

ABDA urges you to join us as we work with Autoimmune Related Diseases Association (AARDA) and other members of the NACPG of which we are a part of, to actively promote passage of the Safe Step Act to reform insurance-mandated step therapy processes by requiring a timely and medically-appropriate appeals process.

Step therapy isn’t a therapy. It is a harmful insurance company tactic that often requires patients to “fail first” on one or more drugs before getting the medicine that doctors originally prescribed.

Due to the harmful effect step therapy can have on autoimmune disease patients, AARDA leads Let My Doctors Decide, a national partnership of leaders across health care in support of step therapy reform in dozens of states.

Please join us by sending a message to your legislators encouraging them to support the Safe Step Act. Find your elected officials here: https://www.usa.gov/elected-officials

April 17, 2020

ABDA Joins Over 400 Organizations to Urge Department of Health and Human Services to Issue Guidance to Prohibit Discrimination during Medical Rationing

Patient organizations sent a letter on 04/17/2020 urging the Department of Health and Human Services (HHS) to issue further guidance addressing the application of federal non-discrimination laws during the COVID-19 pandemic.

The letter, led by the American Association of People with Disabilities, noted that too many state and hospital Crisis Standards of Care plans discriminate against people with disabilities and older adults. If implemented, these plans would deny or give lower-priority to life-saving treatment to people based on disabilities or age that have nothing to do with their ability to survive COVID-19.