Dear Honorable Members of the House Insurance Subcommittee:
On behalf of the over 800 people living with cystic fibrosis in Tennessee, we write to express our support for HB 2557 and HB 2170, which would direct TennCare to apply for a waiver for continuous coverage for children under age 6 and limit the proliferation of problematic coverage programs known as maximizers and alternative funding programs (AFPs). Together, these bills will help support access to affordable care for people with cystic fibrosis.
About Cystic Fibrosis
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. Cystic fibrosis is both serious and progressive; lung damage caused by infection is irreversible and can have a lasting impact on length and quality of life. As a complex, multi-system condition, CF requires targeted, specialized treatment and medications. While advances in CF care are helping people live longer, healthier lives, these treatments only matter if they are accessible to the people who need them.
HB 2557: Continuous Coverage
The Cystic Fibrosis Foundation supports the state’s proposal to provide continuous coverage for children enrolled in TennCare or CoverKids up to six years of age. Continuous eligibility protects patients and families from gaps in care and promotes health equity, as research shows that individuals with continuous coverage experience fewer unmet healthcare needs and are in better health than those who cycle on and off coverage. In particular, this bill will eliminate coverage gaps that often occur when individuals transition from Medicaid to marketplace coverage.
Research has shown that individuals with disruptions in coverage during a year are more likely to delay care, receive less preventive care, refill prescriptions less often, and have more emergency department visits. Gaps in Medicaid coverage have also been shown to increase hospitalizations and negative health outcomes for ambulatory care-sensitive conditions like respiratory diseases and heart disease. Additionally, continuous coverage can help avoid higher healthcare costs resulting in delayed care.
Consistent care and access to specialized therapies are necessary for people with cystic fibrosis, and any loss or gap in coverage — even for as little as one month — may put people with CF at risk of declining health by forcing them to forgo daily therapies due to cost. For example, according to a survey conducted by George Washington University of over 1,800 people living with CF and their families, nearly half reported delaying or forgoing care — including skipping medication doses, taking less medicine than prescribed, delaying filling a prescription, or skipping a treatment altogether — due to cost concerns. Because CF is a progressive disease, patients who delay or forgo treatment face an increased risk of lung exacerbations, irreversible lung damage, and costly hospitalizations.
Studies show that children of color are more likely to be affected by gaps in coverage so this legislation is an important step towards improving equitable access to care. Additionally, multi-year continuous eligibility and continuity of care is especially critical for children during the critical early years of life. We also urge the state to provide additional data on current rates of churn for children in the demonstration population to help evaluate the effectiveness of this policy.
HB 2170: Maximizer and Alternative Funding Limitations
HB 2170 would limit the proliferation of new coverage arrangements with third-party entities known as maximizers and alternative funding programs. Maximizers often outsource a patient’s drug coverage to a third-party entity that sets the patients’ cost-sharing at a level to maximize use of manufacturer copay assistance. Alternative funding programs are third-party entities that seek to enroll patients in manufacturer patient assistance programs that provide free drugs, which are usually intended for people without insurance. In these instances, patients are usually forced to enroll in these third-party programs or forgo coverage for their drug entirely.
Both of these programs add administrative burden, confusion, and sometimes financial challenges for people with CF trying to get critical medications. Since these programs are run by third-party entities, patients are confused about the role of these organizations and how they are involved in their drug coverage. They also add additional layers of bureaucracy and paperwork that people must navigate and ultimately, if the patient chooses not to enroll, leave patients vulnerable to significant out-of-pocket costs.
HB 2170 would limit the proliferation of these programs in state regulated health care plans by prohibiting insurers from altering benefit designs based on the availability and amount of financial assistance for a drug. While this is an important protection, the legislation could be strengthened by applying this prohibition to “third-party entities” instead of “third-party administrators” as defined in Tennessee Code § 56-7-2902. The existing definition referenced in code may not capture maximizer and AFP programs, as they are not traditional third-party administrators that collect premiums or process claims. Instead, this section of HB 2170 must apply to all entities that contract with health plans and are involved drug benefit design and enrollment.
We understand the challenge insurers face in managing the rising cost of drugs, and that copay and patient assistance programs mask bigger cost and affordability issues in the health care system. However, cost containment strategies that further burden patients are unacceptable. Maximizers and AFPs can impose significant barriers to care for people with CF and we support legislation to limit their further expansion.
The Cystic Fibrosis Foundation appreciates your attention to this important issue for the CF community in Tennessee.