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.

Expand Coverage for Cancer Screening Tests

Subject: Support the The Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act (HR 842) to expand access to cancer screening!

 

On behalf of the cystic fibrosis (CF) community, I write asking you to simplify and improve access to cancer screening tests by supporting the Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act (HR 842). This bipartisan act allows Medicare to cover multi-cancer early detection screening tests once they show clinical benefit and are approved by the FDA. 

 

Cystic fibrosis (CF) is a life-limiting genetic condition that affects over 40,000 people in the US and primarily affects the lungs and digestive system. Due to breakthrough treatments that benefit about 90% of the CF community, half of all people living with CF born between 2020 and 2024 will live to be 65. For those born between 2015-2019, the life expectancy was 46. The number of people living with CF older than 50 has more than doubled since 2014. 

 

As people living with CF live longer lives, they are also at a higher risk of developing comorbidities related to CF, one of which is cancer. People living with CF are 5 to 10 times more likely to develop colorectal cancer and more likely to develop pancreatic cancer. Those who have had solid organ transplants are 25 times more likely to develop colorectal cancer and more likely to develop cancers like non-Hodgkin lymphoma and Hodgkin lymphoma, Kaposi sarcoma, genital cancers, and skin cancer. 

 

This bill would allow Medicare to cover multi cancer early detection screening tests once they have been approved by the FDA, which would supplement, not replace, existing cancer screenings. Coverage for more options for cancer screening is critical for the CF community as they continue to live longer lives. 13% of the CF population is covered by Medicare and coverage for cancer screening tests would provide more options for people living with CF. We ask you to support and prioritize the passage of this bill to support the early detection of cancer for people living with CF and all those affected by cancer. 



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.

HELP Copays Act

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

 

As a concerned constituent and as an advocate of the cystic fibrosis (CF) community, I urge you to support the passage of the The Help Ensure Lower Patient Copays (HELP) Copays Act (S.864) to protect patients from copay adjustment programs, including accumulators and maximizers. Copay accumulator programs used by insurers and pharmacy benefit managers (PBMs) 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.

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. Copay assistance is critical 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.