Speak Now: Repeal of the ACA Jeopardizes Vital Protections for Those with CF!

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Urgent Call to Action! The President-Elect Vowed Today to Repeal the Affordable Care Act (ACA).

In his first press conference held on Wednesday, January 11, the President-elect vowed that the repeal of the Affordable Care Act is one of his first priorities after taking office. Currently the Senate is working on a bill to repeal the ACA (often referred to as “Obamacare”), with a deadline of January 27th. Contained within the Affordable Care Act are protections that are vital to our CF – and rare disease – communities. As our elected officials debate the next step, it is critically important that they hear from you about what must be included in any revised legislation to protect you and others impacted by cystic fibrosis or any other health condition.

Historically, it has been very challenging for individuals with cystic fibrosis to obtain private health insurance. Because of the Affordable Care Act, insurance companies can no longer deny coverage to individuals due to a pre-existing condition, nor can insurance companies charge people with pre-existing conditions higher rates. Insurance companies can no longer put lifetime or annual dollar limits on essential health benefits including screenings, preventative care, and therapy for most life threatening diseases. In addition, the Affordable Care Act allows young adults to remain covered by their parents’ health insurance until the age of 26 years.

The Affordable Care Act also expanded the number of children who receive coverage through Medicaid. Over half of all children with cystic fibrosis are covered through Medicaid, which provides a literal life-saving safety net to them.

Repeal of these provisions could be catastrophic for many members of the cystic fibrosis and rare disease community. Please write to your Congress Members and Senators today, urging them to maintain these protections as they debate the repeal and/or replacement of the Affordable Care Act! This letter will also be sent to your state representatives, to inform them of your views on this critically important issue.

The protections provided to the CF community through the ACA extended to all Americans, and the ACA has helped millions of people across the U.S. The Department of Health and Humans Services reported this month that even before the open enrollment period has closed, over 11.5 million people have signed up for ACA-based healthcare plans – a record number.

It is critical that your representatives hear from you! Some members of the Congress and Senate have proposed delaying repeal of the ACA until a full replacement bill can be created. They must hear from the CF community, urging maintenance of the life-saving protections currently contained in the ACA.

CFRI’s Many Voices ~ One Voice Advocacy and Awareness Campaign needs your voice. Changes in our current healthcare laws may prevent those living with a rare disease to access affordable health insurance, and reduce access to potentially life-saving treatments. Please share this message with your friends and families. You can make a difference!

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Message

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

Dear [Decision Maker],

As you debate the future of the Affordable Care Act, I urge you to maintain the provisions contained within the Act that provide life saving protections to millions of Americans who would be otherwise unable to obtain affordable health coverage due to pre-existing conditions. Most specifically, the cystic fibrosis and rare disease communities will be negatively impacted should provisions related to pre-existing conditions be removed. I strongly urge you to protect health care coverage for those who are most vulnerable in our country including many young children battling fatal diseases who would have otherwise been ineligible for coverage and unable to obtain life saving therapies and medications.

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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 were part of the Act!

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. It is heartbreaking that the median age of death for an individual diagnosed with cystic fibrosis is only 29 years.

I am proud to be part of Cystic Fibrosis Research, Incorporated (CFRI) and its 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.

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