CF Advocacy Campaign

Ensure New Health Care Legislation Protects Those with CF

The Senate has released its proposed replacement for the Affordable Care Act (ACA), and it contains many provisions that are detrimental to the cystic fibrosis community. We must let our Senators know that this health care act will bring harm to the CF community and the rare disease community. Time is critical!

Provisions within the proposed legislation that will be detrimental to those with CF include significant cuts to Medicaid funding, per capita caps on Medicaid funds to states, the inclusion of waivers related to Essential Health Benefits, higher rates (up to 500%) for older enrollees, a phase out of insurance subsidies and reduced tax credits. The "actuarial value" — the amount that insurance would be required to cover of a person’s medical cost — would be lowered to 58%, down from 70% for the ACA's benchmark plans. This 12% additional cost to consumers could be devastating and would certainly reduce the value of the tax credits. The plan has no individual mandate for insurance, and removes the mandate for large employers to provide insurance to their employees. It is still estimated that with these changes, over 20 million Americans will lose their health insurance by 2026. Please let your Senators know that the only acceptable replacement for the Affordable Care Act is one that maintains vital protections for all, and especially those with pre-existing conditions such as CF, and which enables those with CF and other at-risk populations to secure affordable health coverage.

CFRI’s Many Voices ~ One Voice Advocacy and Awareness Campaign needs your voice. It is critical that your representatives hear from you!



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Ensure New Health Care Legislation Protects Those with CF

Dear [Decision Maker],

I am very concerned about the Senate's proposed health care act, which will be detrimental to the cystic fibrosis (CF) and rare disease communities. Provisions within the proposed legislation that are detrimental to those with CF include significant cuts to Medicaid funding, per capita caps on Medicaid funds to states, the inclusion of waivers related to Essential Health Benefits, higher rates (up to 500%) for older enrollees, a phase out of insurance subsidies and reduced tax credits. I am very concerned that the "actuarial value" would be lowered to 58%, down from 70% for the ACA's benchmark plans. This 12% additional cost to consumers could be devastating to our community. The plan has no individual mandate for insurance, and removes the mandate for large employers to provide insurance to their employees.

The only acceptable replacement for the Affordable Care Act is one that maintains vital protections for all, and especially to those with rare diseases such as CF, and which enables those with CF and other high-risk populations to secure affordable health coverage.




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. Please reject any proposed health care legislation that fails to protect the most fragile members of our society! You can make a difference in the lives of 30 million people affected by rare diseases in America, including 30,000 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.

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