Rare Access Action Project

05/03/2024

Join us for a PDAB webinar hosted by RAAP on May 6th at 1 pm (EST). Our expert panelists will provide valuable insights on what we learned from the 2024 legislative sessions and how to stay ahead of the curve in 2025. Don't miss out on this exclusive opportunity to learn how to be proactive and advocate for rare therapies. Register now!
https://tinyurl.com/RAAP-PDAB

04/02/2024

Building on the momentum of our previous workshops, we successfully hosted the 3rd PDAB Workshop. This event focused on empowering patients, advocates, and legislators with the knowledge they need to navigate PDABs. With an eye towards 2025, the discussions explored proactive strategies for the year ahead. A huge thank you to our esteemed panelists, Patrick J. Plues, Bridget Dandaraw-Seritt, and Harry Gewanter, for their insightful contributions.

We invite you to join us as we engage with patient advocates and stakeholders, sharing insights about ongoing legislation in key states, current PDAB decisio...

03/22/2024

We invite you to join us as we engage with patient advocates and stakeholders, sharing insights about ongoing legislation in key states, current PDAB decisions, preparations for the 2025 legislative session, and proactive strategies. Register here:
https://tinyurl.com/RAAP-PDAB

02/12/2024

*** PLEASE NOTE THE NEW DATE AND TIME*** Remember to register for our PDAB Workshop on February 21st at 1 pm (EST).
https://us06web.zoom.us/webinar/register/WN_EiMDS7tqRB2NgSi3caDt8w

We have changed the date and time to make sure on the 22nd, we can focus on testifying on Colorado SB 60, which would exempt certain drugs from the Prescription Drug Affordability Board.
We will be continuing our discussion on Prescription Drug Affordability Boards and how they impact Rare Disease patients. We will also be giving updates on states that have current and active PDAB legislation.

02/05/2024

RAAP, who has been aggressively working to see needed changes made to the IRA to protect rare disease patients, supports the EPIC Act, and will work to advocate for its passage and adoption throughout the process. Please see our LinkedIn post to learn more.

12/08/2023

Please join the Rare Access Action Project (RAAP) for an important and timely webinar on Prescription Drug Affordability Boards or “PDABs.”
Since 2016, state policymakers have contemplated several methods (e.g., manufacturer transparency bills) aimed at reducing spending and costs associated with prescription drugs that the state deems “unaffordable” for state purchasers and patients. States are increasingly turning to PDABs to address prescription drug spending; in 2023, at least 11 states considered or are considering PDAB legislation.

The specific duties of PDABs and similar groups may vary from state to state; however, most possess the authority to review the cost of prescription drugs, assess their affordability, set upper payment limits (UPLs), engage with drug manufacturers, and advocate for transparency in prescription drug pricing.
While the intention behind PDABs is to ensure that drugs are accessible, we at RAAP believe that efforts to control drug prices through a PDAB are flawed and will inevitably harm innovation and actually limit patient access to the most innovative lifesaving therapies for rare diseases.

We look forward to having you join us as we hear from key stakeholders in the debate over PDABs, including patient advocates, policy experts, and elected officials, and consider better alternatives to the issue of accessibility of drugs for rare diseases.

11/16/2023

Thank you to everyone who joined us for 2023 Fall Policy Conference!! A special shout out to our amazing speakers who brought their passion and expertise to the table for patient focused panels about policy, their impact on accessibility to rare disease treatments, and for centering it all in the humanizing realities of living with a rare diseases. Stay tuned for a recording of the full conference!

07/12/2023

The recently passed (IRA) was hailed by
supporters as a major milestone for reducing costs across a range of sectors, including
. The Rare Access Action Project (RAAP) was involved in the debate from
the beginning warning that certain provisions could have detrimental effects on innovation,
particularly in the space.
https://rareaccessactionproject.org/wp-content/uploads/2023/07/Inflation-Reduction-Act-to-Harm-Rare-Disease-Innovation-7-11-23.docx.pdf