NCSL Project

Patients need a voice, but they also need legislative champions to propose and work to pass critical policies that will improve access to therapies as well as protect and enhance the pipeline of future therapies. The National Conference of State Legislators (NCSL) is a platform organization to engage in an education and advocacy program by utilizing our patient caucus and rare disease industry experts. This experience will allow us to prepare for expansion to other venues such as the Council of State Governments, NBCSL, and NHCSL.

GOALS

Our goal with the NCSL Patient Access to Healthcare workgroup is to provide state legislators with a forum in which they can gain the following benefits:

  • Understanding of the patient journey and the unique nature of rare diseases

  • A comprehensive approach to improving patient access to therapies that balances access, fiscal responsibility, and improving the innovation environment.

  • Building support for pro-patient policies that encourage the discovery and development of future therapies to meet today’s unmet medical needs

CORE FUNCTIONS 

  • Convene meetings with NCSL staff and membership.

  • Develop an online learning hub for patient access issues on the NCSL website.

  • Presentations at NCSL “Learning Hub” during national meetings.

  • Engage federal health organizations for educational presentations.

  • Host 3-4 webinars

  • Build Content modules for interested state policy organizations and stakeholders.

NCSL 2024 Rare Patient Access Learning Hub

RAAP presented at the 2024 NCSL Summit. We discussed how rare patients face enormous challenges navigating the healthcare system. This session explored the impact of copay accumulators and prescription drug affordability boards in creating barriers to therapies and alternative pathways to improve patient access.