Rare Disease Legislative Advocates compiled its scorecard based on membership in the Rare Disease Congressional Caucus and action taken on legislation important to the rare disease community.
The most powerful tool a legislator has is their vote, but a sampling of votes and actions on bills does not always provide the full story. The rare disease community followed many bills that are not on this list and legislators may have taken action in other ways not captured by this scorecard. Some bills progressed to laws, while others may have been halted during the legislative process or had provisions incorporated into other bills. In addition, legislators may have worked in committee or in other ways to secure an amendment or enable a compromise. Thus, a voting record provides crucial, fact-based insights into legislative activities, but is not intended to be a comprehensive indicator of rare disease impact.
How to Use the Scorecard:
- Have a conversation about rare disease issues with your legislator and include the Scorecard.
- If your legislator has a strong record on rare diseases, be sure to thank them publicly. They deserve the recognition.
- If your legislator’s record is weak, ask them why. Members will often try to find ways to help a constituent.
- Evaluate the conversation and follow-up. Is there a commitment for an improved level of support for rare disease issues? If so, keep in touch with their office and nurture the relationship.
Members we given a √ for being an author, original co-sponsor, co-sponsor, co-chair, signer, and a yes vote.
8 √ = A+ 7 √ = A 6 √ = A- 5 √ = B+ 4 √ = B 3 √ = C+ 2 √ = C 1 √ = D 0 √ = F
Click here for scorecard descriptions.
Scoring Criteria and Bills:
Members were given a √ for being a Caucus member, as well as for being an author, original co-sponsor, co-sponsor, or a ‘Yes’ vote on the bills below.
Rare Disease Congressional Caucus Membership: The bipartisan Caucus is made up of 101 Representatives and five Senators. Points were added if the Representative or Senator was a member of the Rare Disease Congressional Caucus.
H.R. 6 – 21st Century Cures Act (initial version)
H.R. 34 – 21st Century Cures Act (final version)
H.R. 971/S. 1421 – Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT)
H.R. 1537/S. 1878 – Advancing Hope Act (Priority Review Vouchers)
H.R. 1608/S. 2373 – Lymphedema Treatment Act
H.R. 3381 – Childhood Cancer STAR Act
S. 139 – Ensuring Access to Clinical Trials Act of 2015
S. 1597 – Patient-Focused Impact Assessment Act of 2016
S. 2030 – Advancing Targeted Therapies for Rare Diseases Act of 2016
This Scorecard is only a sampling of legislative votes and does not provide the full story. We recognize that Members in leadership positions refrain from co-sponsoring legislation, however their actions can greatly affect passage of rare disease bills. Poor scores are a reflection of the work the rare disease community needs to do to educate Congress on issues that are important to patients.