Dear Chair Warren and Chair Pickett:
On behalf of more than 1,600 people living with cystic fibrosis in Pennsylvania the Cystic Fibrosis Foundation writes to express our strong support for HB 404, HB 535, HB 618, and HB 755, which would let young adults stay on their parent’s health insurance until age 26, prohibit health insurers from imposing lifetime or annual dollar limits on coverage, codify critical protections for individuals living with pre-existing conditions, and require coverage of preventive health care services, respectively. This legislation would provide an important backstop to preserve critical protections for people with chronic and life-threatening conditions, including cystic fibrosis.
About Cystic Fibrosis and the Cystic Fibrosis Foundation
Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. There are close to 40,000 children and adults living with cystic fibrosis in the United States, and CF can affect people of every racial and ethnic group. CF causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, which can lead to life-threatening infections. As a complex, multi-system condition, CF requires targeted, specialized treatment and medications.
As the world’s leader in the search for a cure for CF and an organization dedicated to ensuring access to high-quality, specialized CF care, the Cystic Fibrosis Foundation accredits more than 130 care centers nationally — including 16 in Pennsylvania — that provide multidisciplinary, specialized care in accordance with clinical practice guidelines. As experts in CF care, the CF Foundation and our care centers understand the need for access to adequate, affordable health coverage. For those with CF, health care coverage is a necessity, and interruptions in coverage can lead to lapses in care, irreversible lung damage, and costly hospitalizations — compromising the health and well-being of those with the disease.
HB 404 — Dependent Coverage Until 26
The Affordable Care Act (ACA) allows young adults to stay on their parent’s health insurance until age 26. Continuous health care coverage is critical for people with CF to obtain necessary care and treatment. Extending the option for dependent coverage until age 26 provides a safety net for young adults as they transition into the workforce, ensuring young adults do not need to cycle through different plans as they change jobs or go through periods without any coverage at all. Prior to the ACA, young adults with CF often faced serious job lock and encounter barriers to their professional development as they made work and life choices that were dictated by their ability to secure and pay for their health care. Allowing young adults to stay on their parents’ plan for a longer period of time helps ensure access to care and lets this population make decisions to advance their career without fear of losing their coverage.
We urge you to support HB 404 and help ensure that young adults are allowed to stay on their parents’ health insurance until age 26 in Pennsylvania in the event that the ACA is repealed.
HB 535 — Annual and Lifetime Limit
The ACA prohibits health insurers from imposing lifetime or annual dollar limits on essential medical care, a critical protection to ensure people with CF have access to needed care. People with CF could quickly hit an annual or lifetime coverage limit through hospitalizations for multiple pulmonary exacerbations or if they have a lung transplant. After hitting a coverage limit, people with CF would be responsible for the full cost of their care, which could lead them to delay or forgo treatment and face an increased risk of lung exacerbations, irreversible lung damage, and costly hospitalizations.
We urge you to support HB 535 to ensure this critical protection remains in place in Pennsylvania, should the ACA be repealed.
HB 618 — Pre-Existing Condition Protections
The ACA prohibits health insurers from denying coverage to people with CF and other pre-existing conditions or charging people more for their coverage because of their health status. In addition, the ACA prohibits insurers from excluding coverage of any care associated with a pre-existing condition or from limiting benefits associated with a pre-existing condition like CF. Prior to the enactment of the ACA, these practices were commonplace among insurers, who could reject people with CF based on their diagnosis or increase the costs of their coverage. The ACA’s protections for people with pre-existing conditions mean that people with CF are treated the same as those without chronic health conditions in terms of access, affordability, and adequacy of their coverage. However, should the ACA be repealed, these discriminatory practices could return, leaving people with pre-existing conditions vulnerable to gaps in coverage, financial hardship, and devastating health consequences.
HB 618 would safeguard these critical protections under state law, ensuring that individuals with CF and other pre-existing conditions cannot be denied health insurance or charged higher premiums due to their health status in state-regulated plans, regardless of federal action. We urge you to support HB 618 and help secure access to adequate healthcare coverage for people with CF and others living with pre-existing conditions in Pennsylvania.
HB 755 — Preventive Health Care Services
The ACA requires health insurance policies to provide coverage of preventive health care services at no cost to the patient. People with CF, along with all Pennsylvanians, benefit from age-specific preventative care to help manage general health conditions, as well as other age-appropriate primary care like health screenings for cancer, immunizations, and more. As the CF population continues to age, it will become all the more important to protect coverage for preventive screenings through pap smears, mammograms, colonoscopies, and other lifesaving measures. We urge you to support HB 755 and help secure access to coverage of preventative health care services without cost sharing for people with CF and others in Pennsylvania.
The Cystic Fibrosis Foundation appreciates your attention to this important issue.