On March 2, 102 advocates met with 282 members of Congress or their staff to talk about life with cystic fibrosis and the importance of quality, affordable health coverage.
Participants emphasized the demanding medical needs of people with CF and the staggering costs associated with such a high level of care. For example, half of people with CF spend $300 or more on monthly premiums to maintain coverage. Just as many people with CF spend over $200 out-of-pocket each month on CF-related medications.
“While the future of health care is being fiercely debated in Washington, our volunteers met directly with their Members of Congress to explain the importance of quality health insurance in accessing life-saving treatments and care," said Mary Dwight, senior vice president for policy and patient assistant programs for the CF Foundation. “Our community is an inspiration, and together, we are tenacious advocates for people with cystic fibrosis.”
Protections in current health care law that are critical to people with CF and their families, include:
- Coverage for people with pre-existing conditions, including guarantees that people with CF will be able to purchase health insurance, their health insurance will include services related to CF, and they will not be charged higher premiums because of their disease
- Options for young people to stay on their parents' health insurance plans until age 26, as a majority of people with CF ages 18 to 25 still receive health insurance through their parents' plans
- Prohibitions on lifetime or annual coverage caps, which can otherwise cause individuals and families to go into crippling medical debt in order to access vital care
- Supporting Medicaid by retaining expanded eligibility and ensuring adequate funding, as Medicaid provides a critical source of coverage for 50 percent of children and one-third of adults with CF
Advocates also asked their members to support robust funding for the National Institutes of Health and the Food and Drug Administration. Both agencies play a crucial role in the development of new, specialized treatments and therapies for people with CF.