Dear Executive Director Kofman:
On behalf of the nearly 50 people in the District of Columbia living with cystic fibrosis, we write to bring your attention to legislation that was recently enacted in your state to prohibit copay accumulator adjustment programs. B25-141 requires state-regulated insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements for drugs without generic equivalents, or for patients who have completed the plan’s prior authorization, exceptions, appeal, or review process for a brand name drug with a generic equivalent. This law takes effect January 1, 2025. B25-141 marks a significant step forward to ensure access to essential treatments for individuals with chronic conditions like cystic fibrosis, and the CF Foundation stands ready to serve as a resource as your agency implements this important law. In preparation for open enrollment, we request that the DC Health Benefit Exchange Authority notify all carriers offering health insurance plans on DC Health Link about this law and thoroughly review plan documents to ensure they do not include copay accumulator programs.
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, we also know that the cost of care is a barrier to care for many people with the disease.
Implementation of B25-141
We applaud the District for passing legislation to ban accumulator programs, but we are also mindful of the challenges that may arise during implementation, as we have seen instances of noncompliance from health plans in other states. For instance, in one state where an accumulator ban went into effect on January 1, 2024, we observed multiple marketplace plans’ evidence of coverage (EOC) stating that third-party assistance will not count toward a patient’s cost-sharing obligations. This led to confusion during open enrollment last year as people reviewed their plan options and left them unsure of whether their plan included a copay accumulator program. Plans informed the state’s insurance department that they had not updated their materials to reflect the recent policy change, but it is unacceptable to not provide patients with accurate information about their potential cost-sharing. Additionally, at least one of these plans continued to not apply third-party assistance to multiple patients’ cost-sharing obligations several months into 2024, leading to disruptions in patients’ access to vital therapies. The plan told us that they had not updated their internal systems to comply with the accumulator ban. All these examples highlight the need for increased oversight from regulators to ensure appropriate compliance with this policy.
As insurers prepare to submit plan language in preparation for open enrollment, we request that you inform all carriers of this newly passed legislation and state that plans may only include copay accumulator programs for drugs with generic equivalents and when the patient has not completed step therapy or the plan’s prior authorization, exception, appeals, or review processes. Because B25-141 will permit the use of accumulator programs in some instances, this has the potential to confuse consumers about when the law applies and to which drugs. As such, we ask that you thoroughly review submitted language to ensure that all plans’ documents, especially consumer-facing materials, make clear when third-party assistance will apply to a patient’s deductible, out-of-pocket maximums, and other cost-sharing obligations. Proactive communication with plans will help ensure compliance with this new law and that consumers have access to clear and accurate information about all plans when the open enrollment period begins on November 1, 2024.
The Cystic Fibrosis Foundation is committed to supporting the successful implementation of B25-141 in the District of Columbia. Please consider us as a resource as you navigate this transition. Thank you for your help in ensuring people who reside or do business in the District of Columbia have access to this important consumer protection.