CF Advocacy Campaign

Raise Your Voice Now to Ensure Your Health Care Rights Are Protected!

Urgent Call to Action! On his first day in office, President Trump signed his first Executive Order, which directed his administrative staff to facilitate the rapid repeal and/or replacement of the Affordable Care Act (ACA).

Private health insurance was nearly impossible for those with cystic fibrosis to obtain prior to the Affordable Care Act. Key provisions of the ACA prohibit insurance companies from denying coverage to individuals due to pre-existing conditions; from charging people with pre-existing conditions higher rates; and from placing lifetime or annual dollar limits on essential health benefits. In addition, the ACA allows young adults to remain covered by their parents’ health insurance until the age of 26 years, while expanding the number of children eligible to receive coverage through Medicaid. Currently, over half of all children with CF are covered through this life-saving program. 

Repeal of these provisions would be catastrophic for many members of the cystic fibrosis and rare disease communities. Please write to your congress members and senators today, urging them to maintain these protections as they move to repeal and/or replace the Affordable Care Act! In addition to your representatives, your letter will be sent to a group of senators and members of congress who are encouraging a more thoughtful approach for any changes to the ACA. These individuals may play a major role in determining the future of the ACA, and your story can play a key role in determining their vote on this issue. This letter will also be sent to your state representatives, to inform them of your views on this critically important issue.

CFRI’s Many Voices ~ One Voice Advocacy and Awareness Campaign needs your voice. It is critical that your representatives hear from you! Some congress members and senators have proposed delaying repeal of the ACF until a full replacement bill can be created. They must be educated about the value of maintaining the life-saving protections currently contained in the ACA.



  • Your Senators
  • Your Representative
  • Your Governor
  • Your State Senator or Senators
  • Your State Representative or Representatives
  • Targeted recipients based on your address
  • Justin Amash
  • Bill Cassidy
  • Susan Collins
  • Bob Corker
  • Charlie Dent
  • Brian Fitzpatrick
  • Walter Jones
  • John Katko
  • Raul Labrador
  • Tom MacArthur
  • Thomas Massie
  • Tom McClintock
  • Lisa Murkowski
  • Rob Portman


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Protect those with cystic fibrosis and other pre-existing conditions from the loss of accessible and affordable health coverage.

Dear [Decision Maker],

In light of President Trump's recent Executive Order directing his administration to facilitate the dismantling of the Affordable Care Act (ACA), I strongly urge you to maintain the provisions contained within the ACA that provide life-saving protections to millions of Americans who would otherwise be unable to obtain affordable health coverage due to pre-existing conditions, including those with cystic fibrosis and other rare diseases. I strongly urge you to protect health care coverage for those who are most vulnerable in our country including children battling fatal diseases.

In the past, individuals with cystic fibrosis struggled to obtain health insurance, as insurance companies could deny coverage to individuals due to pre-existing conditions, or approve coverage but charge far higher rates. Lifetime and annual dollar limits were placed on essential health benefits. Young adults could only remain covered by their parents' health insurance until the age of 18 years. Low-income families had a difficult time receiving Medicaid coverage for children. The result was catastrophic for many. These key issues were addressed by the Affordable Care Act, which has been life saving for the rare disease community. We cannot lose the vital protections that are part of the Act!

The nonpartisan Congressional Budget Office estimates that repeal of the Act could leave 18 million people without insurance after one year, and 32 million by 2026. It also estimated that premiums for those who purchase private insurance would increase 20% to 25% in the first year, and would double by 2026. This would be devastating for the CF and rare disease communities!

The needs of the CF community are often overlooked because this complex disease impacts approximately 30,000 people in the U.S. and is considered a "rare disease" by the Federal Government, i.e., one that impacts less than 200,000 people in the nation. Approximately one in 31 Americans is believed to be a silent carrier of the mutated CF gene that leads to a defective exchange of fluids across cells, causing secretions to clog ducts and passageways in the lungs, pancreas, sinuses, and reproductive systems. The primary cause of death is respiratory failure.

The treatment of this devastating disease is both time consuming and expensive; CF has a devastating emotional and financial impact upon American families impacted by the disease. The median age of death for those with cystic fibrosis is only 29 years.

I am proud to be part of Cystic Fibrosis Research, Incorporated's (CFRI) efforts to increase access to new therapies and medications. CFRI was founded in 1975, when children with CF rarely survived childhood. Based in Palo Alto, CA but with a global reach, CFRI provides vital education and support, promotes awareness, and funds CF research. Please do not remove the protections contained within the Affordable care Act that have improved access to care for millions of people. You can make a difference in the lives of 30 million people affected by rare diseases in America, including 30,ooo with cystic fibrosis. Thank you for recognizing the overwhelming challenges of these life-shortening diseases and taking steps to protect those who suffer from them.

[Your Name]
[Your Address]
[City, State ZIP]