Legislation

Advocacy

This page will serve as a living, breathing resource for information on legislation that impacts the rare disease, chronic illness, and undiagnosed communities.

Safe Step Act

S.2903 / H.R.5509

This would provide an exceptions or exemptions process for specific cases which could benefit rare disease and chronic illness patients .

Eliminating step therapy is a huge step in the right direction for better and equitable access to care for millions! Esply those with undiagnosed, rare, or chronic conditions

Soon, I will have a templated email for you to send to your congressmen. And all you will have to do is add your name to the end. Check back soon, anticipated launch date is no later than the first week of June 2026

Credit for Caring Act

Credit for Caring Act
S.925 / H.R.2036

This bipartisan bill would provide a federal tax credit of up to $5,000 for eligible working family caregivers helping care for loved ones with chronic illnesses, disabilities, aging-related conditions, or complex medical needs.

Family caregivers often spend thousands of dollars out of pocket each year on medical supplies, home modifications, transportation, respite care, and other essential supports. The Credit for Caring Act is a huge step toward recognizing the financial and emotional burden caregivers carry every single day.

This legislation could provide meaningful relief for millions of families, including those caring for individuals with rare diseases, disabilities, and chronic conditions.

Medical Foods and Formulas Act

Medical Foods and Formulas Act
S.3304 / H.R.5684

This bipartisan legislation would help improve access to medically necessary foods and specialized formulas for individuals living with rare diseases and inherited metabolic disorders. Many patients rely on these products as part of their standard of care to prevent serious medical complications, hospitalizations, and long-term health consequences.

Medical foods and formulas are not optional for many rare disease and chronic illness patients. They are life-sustaining treatments that families are often forced to pay for out of pocket due to inconsistent insurance coverage and lack of federal protections.

The Medical Foods and Formulas Act is a huge step toward improving equitable access to medically necessary nutrition support for patients with complex and chronic conditions.

EpiPen Act

EPIPEN Act

This bipartisan legislation would help make life-saving epinephrine more affordable and accessible for individuals living with severe allergies and at risk for anaphylaxis.

Epinephrine is not optional. It is the only first-line treatment for anaphylaxis recognized globally, yet many families continue to face hundreds of dollars in out-of-pocket costs each year to keep this life-saving medication available.

The EPIPEN Act would cap out-of-pocket costs for epinephrine at $60 for a two-pack for many insured Americans and expand protections to include newer epinephrine delivery systems, helping ensure patients can access the medication they need when seconds matter.

No one should have to choose between financial stability and having access to a medication that could save their life.

HELP Copays Act

The HELP Copays Act aims to esnure that all payments made on behalf of a patient for their deducatible and out of pocket maximum.

Many individuals with chronic illnesses, rare diseases, and complex medical conditions rely on manufacturer copay assistance programs to afford life-saving medications. However, some health insurance plans use programs known as copay accumulators or copay maximizers, which prevent this assistance from counting toward a patient’s cost-sharing requirements.

As a rsult, patients may be required to pay thousands of dollars out of pocker before reaching their deducatible, even when financial assistance has been used to help medication costs.

The HELP Copays Act would help protect patients by requiring health plans to count all payments made by or on behalf of a patient toward their deductible and annual out of pocket limits.