How We Advocate for the CF Community

Alongside the cystic fibrosis community, we advocate for policies and programs that promote access to highly specialized CF care and that help advance research and drug development.

8 min read
In this article
  • Advocacy is an essential part of the Foundation’s mission to find a cure for all people living with cystic fibrosis and to ensure that it is accessible to all.
  • Along with the powerful CF community that we serve, we advocate for federal and state policies that will bolster a person’s access to adequate, affordable care, as well as foster research and development that could lead to one day finding a cure for CF.

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. We ground all of our work in five principles that drive our decision-making and prioritization efforts.

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.

For example, 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).

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 allocate adequate funding for programs and services critical to people with CF. The Foundation also engages with insurers and state payers to promote coverage decisions that support access to high-quality, specialized care.

For example, 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 certain tough budget environments.

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.

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. For example, 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.

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. 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. Eventually, the case was heard and dismissed by the Supreme Court of the United States, ultimately upholding the constitutionality of the Affordable Care Act.

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.

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.

Collaborating with Other 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 serious, acute, and chronic diseases.

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.

For example, in 2020 amid the COVID-19 pandemic, millions of Americans, including those with CF, faced the devastating decision: place their health or their loved one’s health at risk by going to work or possibly lose their income altogether. We led the charge to expand paid family and medical leave to protect people living with CF and other Americans who are most vulnerable to the adverse effects of COVID-19. This includes the CF community sending thousands of messages to their members of Congress to spur action.

For a rare disease, the CF community had an outsized voice in educating staff on Capitol Hill on the importance of expanded paid leave. We hosted our first-ever virtual congressional briefing to highlight the issue. We partnered with other leading patient advocacy groups to call attention to the potential negative impact of not expanding paid leave for those who are at a higher risk for adverse effects of COVID-19. CF advocates shared their stories during virtual visits with members of Congress and also through phone calls, email, social media posts, and 60-plus creative videos during the Foundation’s 12th annual Teen Advocacy Day.

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