Twice a month, we share quick advocacy tips and insights that you can use right away to become a better chronic advocate. This week, learn the power of living donors, support travelers with disabilities, stop accumulator programs and more in our bi-weekly legislative update!
1. Protect living organ donors
Living organ donation is one of the most selfless things an advocate can do — it literally saves lives. But often, these donors are punished for their gift with extreme medical bills, loss of work and more. During Kidney Month, protect those who are saving lives. Stand up for living donors in your state.
2. Educate yourself and your legislators on PDABs
Prescription Drug Affordability Boards (PDAB) are nongovernmental agencies tasked with identifying drugs with the highest cost and the highest usage in the state and looks for ways to reduce state spending. It's a great start, but the CDC has a lot of questions for PDABs, and you should too. The bottom line is that drug costs are highly complicated, and PDABs tend to take an oversimplified approach. Patients need to keep an eye on these entities, as the decisions they make will have direct impacts on Americans living with chronic disease.
3. Support travelers with disabilities
In response to the estimated 5.5 million Americans who use a wheelchair, U.S. Transportation Secretary Pete Buttigieg proposed a rule that would ensure airline passengers who use wheelchairs can travel safely and with dignity. The proposed a rule is considered the largest expansion of rights for wheelchair-using airline passengers since 2008. Check out the first Airline Passengers with Disabilities Bill of Rights to learn about passengers with disabilities and their rights when they travel.
4. Stop the use of accumulator programs
The United States District Court for the District of Columbia, recently ruled that private health plans cannot use copay accumulators for brand name medications that do not have medically appropriate generic alternative available. Unfortunately, accumulators are still being widely used by insurance companies and their pharmacy benefit managers (PBMs). It is now up to patients and their employers to stop the use of accumulators and the harm they cause. Aimed Alliance and the Crohn's & Colitis Foundation shares steps you can take to ensure your are not a vicim of accumulator programs.
5. Learn how to be an effective storyteller
At the CDC we know that Americans need policy reform at the state and federal level to make the lives of chronic disease patients better. The best way to create this change is sharing the real, raw stories of chronic patients. To help you share your story, we have outlined best practices and a template to make sharing your story with legislators as easy as possible. Need more support? Share your story HERE.