The Cure CMD Advocacy Team has set these priorities to guide our legislative advocacy efforts.
- Awareness of CMD and the unique needs of the CMD community
- Access to affordable and equitable healthcare, employment, education, and travel
- Funding for research that will lead to treatments and cures for CMD
-
ABLE Age Adjustment Act: This bill will expand access to ABLE accounts by increasing the age by which an individual must have established a qualifying disability from 26 to 46.
-
Air Carrier Access Amendments Act: This bill will protect and improve the rights of people with disabilities in air travel.
-
SSI Savings Penalty Elimination Act: This bill increases resource limits used to determine eligibility for the Supplemental Security Income (SSI) program.
-
STAT Act: This bill, created with the input of the rare disease community, aims to improve the development of and access to therapies for the rare disease community.
-
BENEFIT Act: This bill will amend the Food, Drug and Cosmetic Act (FDCA) to ensure that patient experience, PFDD and related data – including information developed by a product sponsor or a third party such as a patient advocacy organization or academic institution – be considered as part of the risk-benefit assessment.
-
Prescription Drug User Fee Act: PDUFA was created by Congress in 1992 and authorizes FDA to collect fees from companies that produce certain human drug and biological products. Since the passage of PDUFA, user fees have played an important role in expediting the drug approval process. This act will expire if it is not reauthorized this year.
-
Telehealth: These services have expanded past couple years thanks to revised rules under the COVID-19 Public Health Emergency. Without new legislation, we return to pre-COVID rules for telehealth. There are several proposed bills at the federal level that will make telehealth a more permanent service. Many states have similar legislation in the works.
-
Project RDAC: The National Organization for Rare Disorders (NORD) launched Project RDAC to establish a Rare Disease Advisory Council (RDAC) in all 50 states. An RDAC is an advisory body that gives the rare community a stronger voice in state government. RDACs address the needs of rare disease patients and families by giving stakeholders an opportunity to raise awareness and make formal recommendations to state leaders on the most important issues they face.
What are we missing? We want to hear from you! Email Lani Knutson with your feedback.