CF Advocacy Campaign

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

Urgent Call to Action! Congress is beginning to discuss proposals for future healthcare legislation. Proposals thus far remove many of the protections that are contained within the Affordable Care Act (ACA), which could be catastrophic for many members of the cystic fibrosis (CF) community. 

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. The ACA also expanded the number of children eligible to receive coverage through Medicaid. 

Proposals being discussed include allowing the sale of health insurance across state lines, a return to high-risk pools, implementing continuous coverage protections, ending the individual insurance mandate, and the placing of per capital limits on Medicaid payments to states. All of these proposals could be catastrophic for many members of the cystic fibrosis and rare disease communities. In fact, they could be catastrophic for anyone who has a pre-existing condition including cancer, high blood pressure and diabetes.

Please write to your Congress Members and Senators today, urging them to reject proposals that will put those with pre-existing conditions at risk. 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 timeline for any changes to the ACA. These individuals may play a key role in determining the future of healthcare legislation, 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 members of the Congress and Senate 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.


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  • Your State Senator or Senators
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  • Targeted recipients based on your address


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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],

As future healthcare legislation is debated, I strongly urge you to maintain the provisions contained within the Affordable Care Act 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 reject proposals that will penalize those with pre-existing health conditions, so as to protect health care coverage for those who are most vulnerable in our country including children battling fatal diseases.

I have concerns about the following proposals:

- Allowing the Sale of Health Insurance Across State Lines: Insurance companies would be more likely to move to states with the least regulation, which would increase premiums for individuals with pre-existing conditions.

- Returning to High-Risk Pools: High-risk pools allow insurance companies to charge people with pre-existing conditions approximately twice as much as those in the "healthy" pool. Prior to the ACA, most insurance companies in states allowing high risk pools excluded coverage for pre-existing conditions for 6 to 12 months, and placed lifetime dollar limits on coverage that were extraordinarily low in relation to the cost of treating diseases such as CF.

- Implementing Continuous Coverage Protections: These "protections" only ban insurers from discriminating against people with pre-existing conditions if these people already have insurance. Anyone who goes uninsured for a short period of time is at risk of being denied, charged higher rates, or having no coverage for care related to one's preexisting condition.

- Ending the Individual Mandate: It is estimated that repeal of the individual mandate could cause millions of people to drop their insurance, causing chaos that would allow insurers to leave the market mid-year.

- Funding Medicaid Via Block-Granting: Block grants would signify a cut in Medicaid, and provide no flexibility to states to meet the needs of their residents should costs increase. Currently over half the children with CF in our country are covered by Medicaid.

- Providing a Non-Income Based Refundable Tax Credit: This proposal provides the same tax credit to all, regardless of one's income. This proposal benefits a few and burdens a large number.

- Providing a Tax Deduction for Health Insurance Costs In Lieu of Offsets: While this is helpful for those who can afford coverage, individuals and families who need the current offset to pay for their monthly insurance bills may be forced to drop their coverage.

- Placing Per Capita Caps on Medicaid Payment to States Based on Population: States would receive a set amount of money per enrollee, with no adjustments for increased medical costs. As such, states may be forced to cut services to those most dependent upon support.

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]