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On February 3, 2026, the Consolidated Appropriations Act was signed into law and included many bills that impact the rare disease community.
These Include:
  • Mikaela Naylon Give Kids a Chance Act
  • Accelerating Kids' Access to Care Act
  • Joe Fiandra Access to Home Infusion Act
  • Telehealth Flexibilities Extensions
  • NIH Increased Funding
  • PBM Reform
While these are only a few key issues impacted by this now-passed appropriations package, you can learn more about these bills and others included here.

Federal Rare Disease Policy

1 / Credit for Caring Act (S. 925 / H.R. 2036)

The Credit for Caring Act would help offset costs of some caregiving expenses for family caregiver. Examples of covered costs include home modifications, transportation, assistive technology or a home care aide. This bill would serve a significant amount of the population as it is estimated that 1 in 5 adults serve as a family caregiver.

One-pager

2 / Genomic Answers for Children's Health Act (H.R. 7118)

The Genomic Answers for Children's Health Act seeks to improve access to Medicaid coverage for whole genome sequencing (WGS) and whole exome sequencing (WES). Current Medicaid coverage for advanced genetic diagnostic screening differs per state often leading to a lack of transparency and consistency for families and providers advocating for necessary genetic screening.

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3 / HELP Copays Act (S. 864H.R. 6423)

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.

  • Rep. Nancy Mace (SC-1): not currently co-sponsoring

  • Rep. Joe Wilson (SC-2): co-sponsoring

  • Rep. Sheri Biggs (SC-3): not currently co-sponsoring

  • Rep. William Timmons (SC-4): not currently co-sponsoring

  • Rep. Ralph Norman (SC-5): not currently co-sponsoring

  • Rep. James Clyburn (SC-6): not currently co-sponsoring

  • Rep. Russell Fry (SC-7): not currently co-sponsoring

  • Rep. Nancy Mace (SC-1): not currently co-sponsoring

  • Rep. Joe Wilson (SC-2): co-sponsoring

  • Rep. Sheri Biggs (SC-3): not currently co-sponsoring

  • Rep. William Timmons (SC-4): not currently co-sponsoring

  • Rep. Ralph Norman (SC-5): not currently co-sponsoring

  • Rep. James Clyburn (SC-6): not currently co-sponsoring

  • Rep. Russell Fry (SC-7): not currently co-sponsoring

  • Rep. Nancy Mace (SC-1): not currently co-sponsoring

  • Rep. Joe Wilson (SC-2): not currently co-sponsoring

  • Rep. Sheri Biggs (SC-3): not currently co-sponsoring

  • Rep. William Timmons (SC-4): not currently co-sponsoring

  • Rep. Ralph Norman (SC-5): not currently co-sponsoring

  • Rep. James Clyburn (SC-6): not currently co-sponsoring

  • Rep. Russell Fry (SC-7): not currently co-sponsoring

Make All Copays Count Act (S. 330 / H. 3934)

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.

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State Rare Disease Policy

Legislative Resources


Look up your US Congress Members

Look up your SC Legislature Members

Look up US Congressional Bill Updates: 

Look up SC Legislative Bill Updates: 

Legislative Process

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

One-pager (Young Adult Version)

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.

  • Act: a bill that has passed through Congress and has become a law 1 

  • Amendment: a formal change that has been made to a piece of legislation 1

  • Appropriations: funds that have been allocated for a specific purpose

  • Bill: a proposed piece of legislation

  • Bill Cosponsor: a member of Congress that has formally agreed to support the bill

  • Bill Sponsor: a member of Congress that has formally introduced the bill

  • Bipartisan: support from both political parties

  • Caucus: an informal group formed in Congress based on common interests 1

  • Committee: a group of Congressional Members that are assigned towards examining specific topics within legislation 1

  • Constituents: individuals within a legislator's Congressional district 1

  • Filibuster: an extended discussion that prevents legislation action from occurring 1

  • Hearing: a Congressional Committee meeting intended to provide witness testimony 1

  • Legislative Advocacy: raising awareness and support for a piece of legislation

  • Nonpartisan: not affiliated with a specific political party

  • One-pager: an overview of a piece of legislation

  • Quorum: the amount of members that need to be present for a meeting to occur

  • Subcommittee: a smaller subset of Committee Members to focus on more specific legislation 1

  • Veto: when the president or governor rejects a bill or resolution 1

Legislative Advocacy Opportunities

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