Email Congress

Subject: Protect access to Medicaid and the Affordable Care Act!

Dear Senator [insert name here],

On behalf of the cystic fibrosis (CF) community and as a concerned constituent, I write asking you to oppose changes included in the reconciliation bill passed by the House of Representatives (HR 1) that would disrupt the cystic fibrosis community’s access to critical care through Medicaid and Affordable Care Act Marketplace insurance plans.

Cystic fibrosis is a chronic, life-threatening genetic condition that primarily impacts the lungs and digestive system, and affects about 40,000 people in the United States. Cystic fibrosis care involves regular medical visits with a team of specialists, specialized equipment and supplies, supplements, and, most importantly, novel prescription medicines that have drastically improved the health outcomes of 90% of the CF community. This network of care, especially high-cost medication, is only accessible to people living with CF through robust and continuous health insurance coverage.

42% of people and 58% of children younger than 10 living with CF are covered under Medicaid or state programs. Disrupting Medicaid and Affordable Care Act Marketplace plans would jeopardize the cystic fibrosis community’s access to this lifesaving care. The Congressional Budget Office calculated that 10.9 million people may become uninsured over the next 10 years due to these changes, many of whom will be people living with CF. Many analyses attribute this loss of coverage among eligible individuals to administrative burden and incorrect or missing paperwork.

I ask you to oppose the proposed measures in the reconciliation bill that will cause eligible people and families living with CF to lose essential, lifesaving insurance coverage due to administrative obstacles. I also urge you to oppose policies that raise out-of-pocket costs and premiums for patients and their families who already struggle with the costs of living with CF. 

These measures include:

• Increasing the frequency and depth of eligibility checks for Medicaid and Affordable Care Act Marketplace plans
  • Including requiring that proof of citizenship must be present to receive Medicaid coverage, which may disrupt infants’ access to timely CF diagnoses due to delays in receiving Social Security documents or birth certificates
• Establishing work requirements for Medicaid recipients
• Implementing copays for some services covered under Medicaid expansion
• Undermining Medicaid expansion efforts
• Reducing provider taxes and sources of federal Medicaid funding for states
• Restricting enrollment periods for Affordable Care Act Marketplace plans
• Ending automatic enrollment in Affordable Care Act Marketplace plans

I also ask you to ensure that the Affordable Care Act Marketplace plan enhanced premium tax credits do not expire, which would cause out-of-pocket premium costs to increase by an average of 75%.

The proposed changes in the reconciliation bill would destabilize lifesaving access to care for our community. Cystic fibrosis is one of the most successful stories in rare disease, as breakthrough medications have transformed health outcomes for people living with CF over the past decade. Our community has fought hard to get to where we are and we cannot let administrative burdens disrupt or block access to these transformative breakthroughs. We urge you to oppose cuts that jeopardize access to lifesaving care and to ensure that the story of cystic fibrosis continues to be one of the most successful stories in American medical history.

Sincerely,

[Constituent]