CFF Leader Talks About ‘Open Letter’ to President and Concerns with Healthcare Reform

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by Joana Fernandes, PhD |

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The Cystic Fibrosis Foundation (CFF) joined 72 other organizations, each advocating for patients with chronic, rare and life-threatening diseases, in an open letter to President Donald Trump and leaders in Congress. The letter asks that patients’ needs be taken into consideration as lawmakers revise current healthcare policies.

Other groups joining this initiative include the Pulmonary Fibrosis Foundation, the ALS Association, the National Multiple Sclerosis Society, and the Michael J. Fox Foundation.

“Health care reform is a top priority for the new Congress and administration and the Cystic Fibrosis Foundation is working to ensure that any changes put into place recognize the needs of our community,” Mary B. Dwight, senior vice president for policy and patient assistant programs for the CFF, said in an interview with Cystic Fibrosis News Today. (The interview, done in an email exchange, can be found below.)

Plans for healthcare reform are still in the works, but the new administration has made clear it intends to repeal and replace the Affordable Care Act (commonly referred to as Obamacare). Until details are known, leaders at the organizations worry that people with chronic and serious diseases such as CF and without adequate health insurance, or unable to afford such insurance, could be in a fragile position.

“Our goal is to ensure that people with CF have the coverage they require to access the treatments they need, and that the incoming administration and Congress understand the unique needs of our community as they advance new health care policies,” said Preston W. Campbell III, MD, president and CEO of CFF, in a statement on the group’s website.

The letter’s stated purpose is to emphasize that high-quality and affordable health insurance is critical for people with chronic illnesses.

“Americans who rely heavily on the health care system must be assured of adequate and affordable insurance that covers their health care needs,” the letter reads. “The high cost of care and inadequate insurance has led many to skip or delay care. They deserve a health care system that will help enable them to lead longer, healthier lives.”

It also underscores the organizations’ willingness to work with the administration and Congress in establishing a new program.

In an interview with Cystic Fibrosis News Today, Dwight discussed what led the CFF to sign the letter, and of the Foundation’s concerns regarding possible changes in healthcare policy.

Here is the interview in Q&A format:

Q: Why did the CFF decide to join with this open letter to President-elect Trump and Congressional leadership?

A: Health care reform is a top priority for the new Congress and administration and the Cystic Fibrosis Foundation is working to ensure that any changes put into place recognize the needs of our community. In December 2016, we joined 72 other organizations that advocate on behalf of people with chronic, serious, and life-threatening diseases to send the letter to President-elect Trump and Congressional leadership. The letter explained the critical role that high-quality and affordable health insurance plays in helping our communities access essential treatments and care, and expressed our desire to work together in creating a health care system that benefits all Americans, especially these vulnerable populations.

Q: Was a similar letter sent to President Obama and Congress during consideration of the Affordable Care Act (2010)?

A: No, but there are several important safeguards built into the Affordable Care Act that are at-risk if the law is completely repealed. Consumer protections like coverage for people with pre-existing conditions, options for young people to stay on their parents’ insurance plan until age 26 and prohibitions on lifetime and annual coverage caps are critical to our community.

Q: What are CFF’s main concerns regarding possible upcoming changes to the U.S. healthcare system? What points would the Foundation like to see remain in any future reform, and what would CFF like to see added or expanded?

A: Whether through public or private plans, people with CF need access to adequate and affordable insurance. Coverage for people with pre-existing conditions must include guarantees that people with CF will be able to purchase health insurance, their health insurance will not exclude services related to CF, and they will not be charged higher premiums because of their disease. The majority of people with CF, ages 18 to 25, receive their health insurance through their parents’ plan so we want to protect that option. And prohibitions on lifetime or annual coverage caps is critical as these caps can cause individuals and families to spiral into crippling medical debt — often for the most fundamental CF care.

We are also closely watching the ongoing conversations around Medicaid, which provides a critical source of coverage for 50 percent of children and one-third of adults with CF.

Q: How might CFF work with the new administration and Congress to promote and protect the interests of CF patients and others with chronic and rare diseases?

A: Because of decades of hard work with our community, the Foundation already has a strong reputation as a leader among patient advocacy organizations on Capitol Hill. We regularly engage with members of Congress to strengthen access to high-quality CF care, and are working to ensure that the needs of people with CF are top-of-mind in the ongoing discussions around health care reform. We encourage patients to share their personal stories with members of Congress and explain why quality health care coverage matters. For more information, visit: