CF Advocacy Campaign

Your Senators Must Hear Your Voice to Ensure Health Care Rights

The Senate is currently working to replace the Affordable Care Act (ACA), and their proposed legislation will likely contain many provisions contained within the American Health Care Act, that was narrowly passed by the House last month.

Many senators are working over Memorial Day weekend to draft this legislation. Now is the time to contact your senators and urge them to create a replacement plan that contains provisions that protect health care coverage for the cystic fibrosis community, as well as other at-risk populations in our society.

The American Health Care Act, passed by the House, contains many provisions that will be detrimental to those with CF or any pre-existing condition. The return to high-risk pools, premium penalties for those whose coverage lapses, cuts to Medicaid, and reduced policy subsidies will negatively impact many members of the CF community. Please let your Senators know that the House’s health care legislation is unacceptable! Please note that the American Medical Association, AARP, and over 50 other consumer and medical groups are opposed as well.

Thank you for writing today, urging your Senators to craft an alternative to the House Affordable Health Act that will maintain protections for those with pre-existing conditions such as CF, and enable those with CF – or any preexisting condition – 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!

Recipients

  • Your Senators

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Message

Any new health care legislation must protect those with CF and members of other high risk populations

Dear [Decision Maker],

I strongly urge you to work together on a bipartisan version of a new health care act that will contain life-saving protections to millions of Americans who would be unable to obtain affordable health coverage due to pre-existing conditions, including those with cystic fibrosis and other rare diseases. The American Health Care Act approved by the House contains many provisions that will be detrimental to those with CF or any pre-existing condition. The return to high-risk pools, premium penalties for those whose coverage lapses, and reduced policy subsidies will negatively impact many members of the CF community. The Act also puts millions of low-income Americans at risk, with proposed cuts to Medicaid programs. This is unacceptable. Please note that the American Medical Association, AARP, and over 50 other consumer and medical groups are also opposed to this harmful legislation.



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 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]