Healthy Living

Becoming an Advocate for the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation was founded in 1955 by a group of concerned parents who were determined to save their children’s lives. At the time, very little was known about cystic fibrosis and children with the disease were not expected to live past their elementary school years.

However, thanks to the continuous efforts and commitment of thousands of families and volunteers, the Cystic Fibrosis Foundation has added years to the lives of individuals living with CF.

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Today, the Cystic Fibrosis Foundation is known as a global leader in the search for a cure for cystic fibrosis. Their mission is to continue funding research and promoting advancements in both treatment and care – with your help. Becoming an advocate for the CF Foundation will allow you to raise awareness among the general public, spark action, and help shape health policies. Since the state and federal governments play a crucial role in funding healthcare on a national level, you can help to educate these policy makers on the importance of issues pertaining to research on CF, drug development, treatment plans, and access to affordable care.

The Cystic Fibrosis Foundation works to ensure patients’ needs are met efficiently

In order to remain in good health, anyone living with CF must maintain a specific treatment regime on a daily basis that is often rather complex and expensive. Over 50% of people with CF spend $300 or more each month on health insurance premiums in order to maintain their health coverage and they spend over $200 on out-of-pocket costs in order to pay for CF-related medications.

The objective of the CF Foundation is to ensure that the healthcare reforms set in place are able to meet the unique needs of individuals living with CF, regardless of their income, employment status, health status or geographic location. More specifically, the CF Foundation advocates for the following issues:

  • Health insurance for people with pre-existing conditions, including guarantees that those with CF will be able to acquire health insurance and that they will not be charged higher premiums
  • An option for people with CF, ages 18-25, to be able to stay on their parents’ health plans until the age of 26
  • The introduction of premium subsidies for those earning low-income salaries
  • The retention of expanded eligibility of Medicaid
  • The protection of funding for Medicaid coverage
  • The exclusion of annual/lifetime caps on health insurance
  • The opposition of high-risk health insurance pools

The CF Foundation also urges Congress to take approaches when it comes to specialized care for individuals with CF, including the following:

  • The continuous funding of outreach and enrollment programs for health insurance
  • The introduction of a reinsurance program
  • The enforcement of the individual mandate
  • The assurance of robust coverage options for individuals living with CF, including federal cost-sharing reduction payments to health insurance companies

A personal story of CF advocacy

Austin Faught, a father of boy with cystic fibrosis, explains why advocating for cystic fibrosis is a must. In January of 2016, his son, Jack, was scheduled for his 4 month visit in the cystic fibrosis clinic at Texas Children’s Hospital. Faught and his wife had previously confirmed with their insurance company that Jack’s CF care plan would be covered. However, on the same day as Jack’s scheduled appointment, their answer from the insurance company on their coverage was “no”.

Being that the Texas Children’s Hospital was the only pediatric CF center in Houston, Faught and his wife had no other place to turn to. They spent hours on the phone, striving to regain coverage for Jack’s CF care plan. They filed appeals, wrote letters to officials, and their story was even published on the front page of the Houston Chronicle. Yet, their efforts were unsuccessful.

“It was in those moments that I did something I had never done before -- I called Congress. I scheduled meetings with representatives in search of their help,” said Faught. He met with Senator Borris Miles and U.S. Representative John Culberson, who both expressed their genuine concern and compassion for Jack’s situation. “In many other offices, I met with entry-level staff members, and I often left thinking that I had accomplished nothing. But, I learned that every meeting and every call is logged, and the impact of many can translate into real change,” said Faught.

The Cystic Fibrosis Foundation’s March on the Hill

He had no idea how his family’s personal situation would translate into public policy, but it became clear to Faught that advocating for CF is crucial. On March 1st and 2nd of 2016, he traveled to Washington D.C. for the CF Foundation’s March on the Hill – a meeting among advocates and members of Congress on life with cystic fibrosis and the importance of affordable health coverage. That year, more than 100 advocates had gathered from 43 states and together, they participated in nearly 300 meetings. Although Faught was felt nervous advocating in front of elected officials, it became clear to him that his voice, on behalf of his son and other individuals living with CF, needed to be heard. “But, I can tell you firsthand that when you tell your story and tell your elected officials what the CF community needs, they will listen,” he said. His son’s story proved to be a mere depiction of other similar stories among the CF community. “I'm not an insurance expert or a legislator; I'm just a dad who wants the best care for my son,” he said.

The CF Foundation offers a wide range of educational resources on clinical trials and therapies to help improve the treatment of cystic fibrosis. It continuously advocates on behalf of all individuals living with cystic fibrosis. The foundation’s core principles include the following:

  • Affordability – To ensure that all individuals living with cystic fibrosis have access to much-needed care and affordable health insurance
  • Adequacy – To ensure that adequate health coverage includes therapies and healthcare delivered by an accredited care team
  • Availability – To ensure that the available health insurance provides individuals living with CF affordable benefits, regardless of their income, employment status, health status or geographic location
  • Transparency – To ensure that individuals living with cystic fibrosis are presented will all available health-related information in order to help them make important and informed health decisions
  • Value – To ensure that the value of CF care is understood in terms of providing support in healthcare delivery and contributing to a steady healthcare system

This year, the CF Foundation continues to remain a support system for potential therapies that aim to target the disease from all aspects. This is an exciting time for CF-related research because, not only are more CF-related medications being developed in an attempt to successfully treat symptoms and improve quality of life, but several clinical trials are also underway in treating the primary cause of CF.

Although cystic fibrosis continues to remain a challenging disease, the hope is that a cure will be found for all individuals living with CF in the near future. For this reason, the CF Foundation is empowering individuals, such as you, to make a difference and help those with CF access the high-quality therapies and specialized care that they require. Even though you may aware of the issues pertaining to CF, others don’t and this puts you in a unique position to convey the message on behalf of the CF community. Take action for CF and become an advocate today!

References

https://www.cff.org/About-Us/About-the-Cystic-Fibrosis-Foundation/Our-History/

https://www.cff.org/Get-Involved/Advocate/

https://www.cff.org/Get-Involved/Advocate/Health-Care-Reform/Priorities-for-the-CF-Community-in-Health-Care-Reform/

https://www.cff.org/CF-Community-Blog/Posts/2017/Why-We-Must-Advocate/

https://www.cff.org/Get-Involved/Advocate/Our-Advocacy-Work/Policy-Principles/

Photo credit: Hugs for Ari Cystic Fibrosis Foundation