Legislative Resources
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Legislative Scorecard: a collective document that focuses on actions taken by legislatures focusing on the rare disease community
Rare Disease Congressional Caucus: a bipartisan Congressional Caucus that was established in 2010 to raise awareness and facilitate conversations surrounding topics affecting the rare disease community
Legislative Glossary
The world of legislative advocacy can be very overwhelming and intimidating with the large amount of information involved. In this section, we will describe terms that are often used in legislative settings. If have any questions about any of these terms, please do not hesistate to ask questions.
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Act: a bill that has passed through Congress and has become a law 1
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Amendment: a formal change that has been made to a piece of legislation 1
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Appropriations: funds that have been allocated for a specific purpose
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Bill: a proposed piece of legislation
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Bill Cosponsor: a member of Congress that has formally agreed to support the bill
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Bill Sponsor: a member of Congress that has formally introduced the bill
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Bipartisan: support from both political parties
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Caucus: an informal group formed in Congress based on common interests 1
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Committee: a group of Congressional Members that are assigned towards examining specific topics within legislation 1
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Constituents: individuals within a legislator's Congressional district 1
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Filibuster: an extended discussion that prevents legislation action from occurring 1
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Hearing: a Congressional Committee meeting intended to provide witness testimony 1
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Legislative Advocacy: raising awareness and support for a piece of legislation
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Nonpartisan: not affiliated with a specific political party
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One-pager: an overview of a piece of legislation
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Quorum: the amount of members that need to be present for a meeting to occur
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Subcommittee: a smaller subset of Committee Members to focus on more specific legislation 1
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Veto: when the president or governor rejects a bill or resolution 1
Federal Rare Disease Policy
In 2012, the Rare Pediatric Disease Priority Review Voucher (PRV) program was established to promote drug development for rare pediatric diseases. The PRV program promotes drug development in two ways and does not cost anything for taxpayers. In 2024, the PRV program expired. As a result, the Give Kids a Chance Act of 2025 was created to extend the voucher program until 2029.
The Accelerating Kids' Access to Care Act ensures a smoother and quicker process for doctors to enroll in another state's Medicaid program. Currently, individuals undergo longer treatment wait times, even in emergency treatment situations such as in Pediatric Cancers, due to not being able having to seek treatment in other states. Often, these out-of-state providers are not covered by Medicaid. This bill allows for doctors to enroll in multiple state Medicaid programs for a five-year period allowing patients to have a better access to covered treatment options.
3 / HELP Copays Act (S. 864)
The HELP Copays Act works to clearly define expectations of cost sharing to ensure that payments made "by or on behalf of" patients count towards their total deductibles and/or out-of-pocket maximum. Many specialty treatments are often covered by copay assistance programs however historically the amount contributed by these programs are not counting towards deductibles and out-of-pocket maximums. By passing this bill, it will serve to protect patients from insurance companies and pharmacy benefit managers (PBMs) being able to decide on a case-by-case basis whether the payments are counted.
Copay Accumulators can prevent patients from reaching their out-of-pocket cost-sharing limits by "accumulating" the value of third-party copay assistance and not counting it towards the patient's deductible or copay. This can lead to patients owing the full cost of their medication, even after the assistance is applied. This bill would address this issue by mandating that all copay assistance counts towards the patient's responsibility. Twenty-one states have enacted a similar bill to protect patients however South Carolina has not passed legislation banning the practice of Copay Accumulators.