Email Congress

How to Make Your Voice Known to Congress:

  1. Find your elected official’s email information HERE.
  2. Open your preferred email account and start a new draft.
  3. Copy and paste the below email template. CC our BEF Team-member Meredith Marden at mmarden@esiason.org
  4. Hit SEND! You’ve done your part.

Fully Fund New York State’s Adult Cystic Fibrosis Assistance Program

Subject:  Fully Fund New York State’s Adult Cystic Fibrosis Assistance Program

Dear (insert elected official name),

 

As a concerned constituent and member of the Cystic Fibrosis community, I urge you to include full funding for New York State’s Adult Cystic Fibrosis Assistance Program (ACFAP) in the SFY 2026-2027 budget.

 

Cystic fibrosis is a life-limiting genetic condition that primarily affects the lungs and digestive system, and affects over 1,700 New Yorkers. Cystic fibrosis care requires regular medical visits with a team of specialists, specialized equipment and supplies, supplements, and access to novel prescription medicines that have drastically improved health outcomes for the CF community.

 

This network of care, even with insurance coverage, can be costly for families and individuals living with CF. 70% of people living with CF experience financial challenges due to CF-related medical bills and nearly 40% struggle to pay for insurance. 

 

Funding for New York State’s Adult Cystic Fibrosis Assistance Program (ACFAP) supports copay assistance for medical care related to CF, including prescription drug and device costs, and medical and behavioral health services, and insurance premium assistance to include medical, vision, and dental premiums. This assistance helps to ease some of the burden of healthcare costs for families living with a rare and chronic condition. 

 

We urge you to include full funding for New York State’s Adult Cystic Fibrosis Assistance Program (ACFAP) in the SFY 2026-2027 budget to provide meaningful financial assistance to New Yorkers living with CF. 

 

Sincerely,

(insert constituent name)

HELP Copays Act

Subject: Support the HELP Copays Act to Protect Critical Patient Assistance!


Dear [insert name here],


As a concerned constituent and as an advocate of the cystic fibrosis (CF) community, I urge you to support the The Help Ensure Lower Patient Copays (HELP) Copays Act (HR 6423) to protect patients from copay adjustment programs, including accumulators and maximizers. Insurers and pharmacy benefit managers (PBMs) use copay adjustment programs to siphon copay assistance away from patients by not counting third-party assistance towards cost-sharing requirements such as deductibles and out-of-pocket (OOP) maximums. The HELP Copays Act restricts the use of these programs by including any third-party assistance toward patients’ individual and family cost-sharing requirements. The act also closes the loophole that allows insurers and PBMs to deem a product “non-essential,” which avoids annually set OOP maximums.

Copay assistance is critical for patients who rely on brand-name drugs without generic alternatives. Insurers and PBMs use copay adjustment programs to prevent overutilization and steer patients towards less expensive care. Cystic fibrosis is a life-limiting genetic condition that primarily affects the lungs and digestive system, and patients living with CF undergo extensive testing and diagnoses to access lifesaving specialty medicines, so overutilization is impossible. Patients should not be punished for seeking the best care possible. 

The HELP Copays Act would protect patients from copay adjustment programs and allow copay assistance to work as intended– to make prescription drugs affordable for patients who rely on brand-name drugs without generic alternatives. Copay adjustment programs, while designed to prevent overutilization, are not transparent and can levy financial pain against often unknowing victims. They must be removed from the health insurance marketplace through the HELP Copays Act.


Sincerely,

[Constituent]

PASTEUR Act

Subject: Support the PASTEUR Act to Defend Against Antimicrobial Resistance!

 

As a concerned constituent and as an advocate of the cystic fibrosis (CF) community, I urge you to support the passage of the PASTEUR Act (H.R. 2940/S. 1355) to combat the growing threat of antimicrobial resistance (AMR). AMR is a rapidly evolving danger to the American public and disproportionately affects people living with CF. People with CF require treatment with antimicrobial medicines from a young age to fight recurring lung infections, so they are at a greater risk of their infections becoming increasingly resistant over time, leading to end-stage disease and complicating transplant eligibility. 

 

The PASTEUR Act is a proposed bipartisan, bicameral legislation that would address the current lack of an effective pipeline for antimicrobials by spurring investment in novel antimicrobial development. This act supports a subscription-style model that ensures that innovators have a sustainable financial incentive and path to profitability, thus removing a significant barrier to antimicrobial development. The PASTEUR Act not only funds the production of new antimicrobials, but also creates diagnostic tools, surveillance systems, vaccines, and other alternative treatments to ensure that new medicines are quickly generated and used safely and effectively.

 

To protect the lives of people living with CF and all those whose lives are threatened by AMR, I urge you to act now and quickly pass the PASTEUR Act.