How We Advocate for the CF Community

Alongside the cystic fibrosis community, we advocate for access to highly specialized CF care, programs, agencies, and policies that help advance research and drug development. We also raise awareness about the disease.

Core Principles of Our Policy Work

The Cystic Fibrosis Foundation's policy and advocacy work is grounded in five principles that drive our decision-making process and prioritization efforts.

  1. Adequacy: Adequate health insurance covers therapies and care delivered by an accredited care team using the latest research, clinical care guidelines, and best practices.
  2. Affordability: Affordable health plans help ensure that people living with CF can access the care they need from an experienced CF care provider without undue financial burden.
  3. Availability: Available health coverage provides adequate benefits at an affordable cost regardless of an individual's income, employment, health status, or geographic location.
  4. Transparency: Transparency about health care information can help ensure people living with CF, clinicians, and institutions have all available evidence when making important decisions.
  5. Value: Increasing our understanding about the value of CF care can support the delivery of high-quality care and contribute to a sustainable health care system.

How We Influence Policy

Whether by passing health care legislation or determining budgets, federal and state governments play an important role in CF research, drug development, and access to care. At all levels of government, we empower the CF community to engage with their representatives on issues affecting their health.

Federal Policy

The Foundation is a leading patient advocacy voice on Capitol Hill. We carefully monitor and analyze federal legislation and administrative proposals to help shape policy decisions that benefit people with cystic fibrosis.

How We Make a Difference 

In 2019, Chad Riedy, an adult with cystic fibrosis, testified at a U.S. House of Representatives Education and Labor Committee hearing about threats to insurance coverage that workers with pre-existing conditions face. The hearing focused on the impact of the Affordable Care Act (ACA) on insurance provided by employers. Riedy advocated to keep critical health care protections included in the act such as a ban on annual and lifetime coverage caps, limits on out-of-pocket expenses, and the option for young people to stay on their parents' insurance plan until age 26. His testimony also provided insight into the robust drug pipeline supported by the research and development championed by the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH).

“I am here today with hope for the future -- a future where I grow old with my wife and see my kids grow up, graduate college, get married, and start families of their own. This is all because of the access that I have had to adequate and affordable coverage and the protections that the ACA has provided,” Riedy said. “I am not asking you to take care of me, as I am already doing that myself. I understand that the law is not perfect, but the protections it contains are critical to me and millions of other Americans with pre-existing conditions.”

We also work closely with the Congressional CF Caucus to garner support of elected officials to fulfill our mission to find a cure and help all people with cystic fibrosis lead fuller, healthier lives. The caucus includes more than 130 bipartisan members who raise awareness of cystic fibrosis; support CF research, drug discovery, and development; encourage collaboration between the public sector and private organizations; and support access to quality, affordable cystic fibrosis care.

State Policy

We help ensure states fund programs critical to people with CF. The Foundation also engages with insurers, such as Medicaid, to promote coverage decisions that support access to high-quality, specialized care.

How We Make a Difference

Along with community members in Ohio, we have consistently advocated for funding for the Children With Medical Handicaps (CMH) program, which covers critical CF treatments and care that may not be covered by private insurance. Around 40,000 Ohio families rely on CMH to supplement their insurance and enable access to the lifesaving care they need. As a result of our advocacy, programs like CMH remain a meaningful resource for people with CF despite unpredictable state budgets.

“[CMH] helps families whose children are fighting life-limiting genetic diseases receive comprehensive support in navigating insurance markets and coverage plans … [CMH] keeps families working and keeps them out of medical bankruptcy.” -- Kim Mathews, spouse of an adult with CF, during her testimony on April 10, 2019 before the Ohio House Finance Subcommittee on Health and Human Services

Regulatory Policy

We partner with the NIH on research that builds the foundation for critical new therapies for CF and other diseases. Working with the FDA, we have supported the modernization of clinical trial design to make it work for patients with rare diseases, provided expert advice during drug evaluations, and encouraged efforts to streamline the process for approving safe and effective therapies.

We also work with the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services, and their state regulatory counterparts to ensure that regulatory policies support access to health coverage for people with cystic fibrosis.

How We Make a Difference

Each year, we encourage CF community members to ask their members of Congress to continue robust funding for the NIH and FDA. Thanks to advocates in the CF community and beyond, we have seen significant increases in funding for both the NIH and FDA in recent years. The Foundation also advocated for the passage of the Expanding and Promoting Expertise in Review of Rare Treatments (EXPERRT) Act, which was signed into law in 2012. This legislation included measures to increase participation by patients and external experts in the FDA's review of new drugs for rare diseases such as CF. In 2015, the Foundation successfully advocated for the passage of the Ensuring Access to Clinical Trials Act, which allows people living with rare diseases to participate in clinical trials without fear that the additional compensation may make them ineligible for government benefits. 

Reviewing and Responding to Judicial Actions

As the health care landscape rapidly evolves, courts play an important role in reviewing policy changes. When appropriate, the Foundation weighs in on health care-related court cases to explain their impact on patients.

How We Make a Difference

For example, in 2018 a federal judge in Texas ruled in Texas v. United States that the ACA was unconstitutional because of the repeal of the individual mandate in December 2017. In the week after the decision, the Foundation mobilized more than 2,000 CF community members to ask their members of Congress to act swiftly to restore protections for people with pre-existing conditions. The CF Foundation also filed an amicus curiae (friend-of-the-court) brief in this case, as in others, to advocate for people with CF.

Insights From Compass 

Through CF Foundation Compass, the Foundation provides a free, personalized service that helps people with CF handle insurance, financial, legal, or other issues. It is through Compass that the Foundation truly understands the personal impact and prevalence of issues in the health care system. The Compass and policy teams work closely together to examine health care trends, identify widespread access issues, and elevate them to the attention of state and federal policymakers.

How We Make a Difference

As an example of this collaboration, Compass case managers alerted the policy team to several challenges people with CF and care center teams were experiencing with California's Genetically Handicapped Persons Program (GHPP), a program that provides health coverage to adults with specific genetic diseases, including cystic fibrosis. The policy team reached out to program officials at GHPP to discuss the experience of the CF community. Now, Compass case managers, the policy team, and GHPP program administrators are discussing how to manage these issues and find solutions for the future.

Working With Other Patient Advocacy Organizations

We frequently partner with other patient advocacy organizations to educate policymakers about the impact of health care proposals on the millions of Americans living with rare and chronic diseases. 

How We Make a Difference

In 2018, we partnered with the American Heart Association, the Leukemia & Lymphoma Society, the American Lung Association, March of Dimes, and other patient advocacy organizations to host a congressional briefing on the proposed short-term health insurance rule, which would likely drive up health care costs for people with cystic fibrosis. When the rule was finalized later that year, the CF Foundation joined 26 patient groups to express disappointment over the administration's decision to extend the availability of these plans. We continue to monitor this issue in the states and seek opportunities to support legislation that limits short-term health insurance plans so people with CF have adequate and affordable health care options.

How the CF Community Mobilizes

Volunteer advocates lead the charge in helping federal and state policymakers understand the needs of the cystic fibrosis community. Members of Congress want to hear from their constituents and understand how their decisions will impact people in their communities. To be an advocate, all you need is a passion for helping people with CF and the willingness to make your voice heard. CF advocates are active across all 50 states and Washington, D.C., and include people with CF and their family members, friends, and clinicians.

How We Make a Difference 

In 2017, health care reform became a hotly debated issue as the White House and Congress focused on repealing and replacing the ACA. Although the ACA is not perfect, it includes many critical protections for people with CF, including coverage for people with pre-existing conditions, prohibitions on lifetime and annual caps, and options for young people to stay on their parents' insurance plan until age 26.

For a rare disease, the CF community had an outsized voice in the debate. We partnered with other leading patient advocacy groups to call attention to the potential negative impact of the proposed legislation on people with CF and the millions of other Americans living with chronic conditions.  CF advocates shared their stories during in-person visits with members of Congress and also through phone calls, email, social media posts, and local opinion pieces in newspapers.

Because of the mobilization of patient advocates across the country, we were successful in staving off harmful legislative changes and preserving important patient protections in the Affordable Care Act.

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