The year 2022 marked several significant policy victories for people living with rare diseases, thanks to the tireless dedication of NORD Rare Action Network advocates who worked to ensure lawmakers heard their voices. Through grassroots efforts, our advocates and member organizations wrote, called, and met with lawmakers, joined letter campaigns, posted on social media, and raised awareness, urging elected officials to act on policies that will improve the health and well-being of people living with rare diseases. Congratulations to every advocate and member organization for the impact you made this year – your efforts will make a difference for so many in our community!
As we get ready for an advocacy-packed 2023, let’s revisit some of the highlights of what we accomplished together this year:
- Millions of Americans can continue to access affordable, high-quality health insurance. NORD advocates from nearly every state called on their lawmakers to extend the enhanced Advanced Premium Tax Credits, which have been so vital during the pandemic, for three additional years as part of the Inflation Reduction Act. On August 16, the bill was signed into law, helping to keep quality health insurance affordable to millions of Americans living with rare diseases.
- Medicare patients struggling to afford their medication will see relief through caps on out-of-pocket expenses. This milestone, years in the making, is a victory for the rare community. Working with coalition partners, we have repeatedly urged Congress to help Medicare Part D beneficiaries afford critically needed prescription drugs. In 2019 alone, nearly 1.5 million Medicare Part D beneficiaries hit the catastrophic level of coverage. Thanks in part to our community’s continued advocacy, Congress has created a $2,000 annual out-of-pocket cap, starting in 2025. This will improve access to essential care and relieve heavy financial burdens faced by many in the rare community.
- Critical FDA programs were reauthorized and improvements to the drug development process were made to benefit people living with rare diseases. After tremendous advocacy efforts by our community, including numerous letters to Congress co-signed by hundreds of NORD member organizations and thousands of actions taken by advocates in our Rare Action Network, we helped ensure priorities important to rare disease patients were not left behind. In December, as part of the year-end spending package, Congress included provisions to strengthen FDA’s accelerated approval pathway, re-authorize the Orphan Products Grants Program, and ensure increased representation of diverse and underserved populations in clinical trials supporting FDA approval of drugs and medical devices.
- Rare disease patients and their families get a stronger voice in state capitols. Rare Disease Advisory Councils (RDACs) give the rare disease community a strong platform and elevate the patient voice within state governments. In 2022 alone, we worked alongside dedicated advocates to introduce legislation to create RDACs in nine states, and successfully passed legislation in five. Now, 24 states have an RDAC! Our work doesn’t stop with the Governor’s signature. In 2022, NORD also helped existing RDACs grow their influence, coordinate, and share best practices from across the entire country. We plan to keep the fight going in 2023, and every year after until there is an RDAC in every state!
- Rare disease patients in several more states have easier access to effective therapies. Thanks to our advocates’ passionate outreach to lawmakers — people living with rare disorders in four additional states (Massachusetts, Pennsylvania, Tennessee, and Kentucky) are now protected against harmful step-therapy protocols. Now, legislation that creates common sense patient protections around step therapy – and puts health care decisions back in the hands of patients and their providers – has become law in 35 states. We will continue pushing forward until everyone in the rare community is protected from detrimental step therapy practices.
We have accomplished a lot together in 2022, and 2023 promises to be an eventful year in rare disease advocacy as we begin the 118th Congress, continue to ensure rare disease perspectives are heard by lawmakers, work to maintain access to affordable health coverage, track implementation of the Inflation Reduction Act and its impact on our community, among other work on state and federal levels.
To stay up to date with all of NORD’s ongoing policy and advocacy work and volunteer opportunities, join our grassroots advocacy network today and help transform the lives of the more than 25 million people across the country living with rare disease. Your voice and advocacy make a difference, so send us a note at action@rarediseases.org to get involved! We look forward to another year of working together to create a more equitable future for all people living with rare diseases.