Preserving Access for People with CF: The Importance of Cost and Affordability

Recent therapeutic advances have transformed cystic fibrosis -- adding decades of life and new hope for people living with this disease. To protect this progress, it's critical that people with CF can access high-quality, specialized treatments and care, regardless of income, insurance, or geography.

7 min read
In this article
  • The cost of living with cystic fibrosis can be daunting for many living with the disease. Although nearly all people with CF have health insurance, health care costs can quickly add up to more than what a family can afford, leading to difficult tradeoffs or even delaying or forgoing care.
  • Key stakeholders, states, Congress, and government agencies have introduced proposals that could curb some of the costs associated with high-priced drugs.
  • We support proposals that ensure people with cystic fibrosis have access to comprehensive, specialized care that they can afford, as well as ensure a system that supports investment in new research and development.

Living with cystic fibrosis is expensive. On average, people with CF rely on three oral and three inhaled medications daily and see a multidisciplinary care team four times a year. This treatment and care regimen can be expensive even for individuals with comprehensive insurance.

Although nearly all people with CF have health insurance, health care costs can quickly add up to more than what a family can afford, leading to difficult tradeoffs, and nearly half of people with CF and their families make a decision to delay or forgo care altogether. In fact, 71% of people with CF have experienced some form of financial hardship or issue due to medical bills, with 44% of people reporting challenges paying for at least one medication or service associated with their treatment regimen in the past year, according to a study conducted by George Washington University.

Key stakeholders, states, Congress, and government agencies signaled interest to address prescription drug pricing, and many proposals are being discussed. We evaluate proposals as they are introduced and relay the needs of people with CF to policymakers so they understand how these changes could impact the CF community.

Federal Proposals

  • Medicare out-of-pocket spending on prescription drugs: Medicare Part D, which provides prescription drug benefits, requires Medicare beneficiaries to pay significant out-of-pocket expenses before entering “catastrophic coverage” -- at which point, people with CF pay 5% of the list price of most prescription drugs until the plan renews the following year. There is no cap on catastrophic coverage, posing a significant barrier to treatment for Medicare beneficiaries because 5% of the list price can amount to tens of thousands of dollars in out-of-pocket costs for an individual. We support bills that would cap the out-of-pocket costs a person would pay under Medicare Part D. These policies would alleviate a significant financial burden for people with cystic fibrosis who rely on Medicare and make annual drug spending more predictable.
  • Government price negotiation: Current proposals, if enacted, would allow the government to negotiate drug prices for a limited number of drugs based on the drug’s cost to the program. While CF therapies would likely not be included, it is likely that Medicare Part D beneficiaries would see lower premiums as a result of lower government spending. We support this approach as an important first step to address sustainability of prescription drug spending and affordability for patients, while also preserving a market that rewards innovation.

  • Patent Reform: The CF Foundation supports some policies to reform drug patents, particularly in circumstances when patent extensions are not linked to the clinical effectiveness of the drug. Prolonging a manufacturer’s control could delay the introduction of less expensive, generic alternatives, which has the potential to reduce premiums and cost-sharing for patients overall.
  • Annual price increases that exceed inflation: We support proposals that limit price increases on pharmaceuticals that outpace inflation. We believe in paying for what works and rewarding innovation without limiting a person's access to that innovation. Arbitrary increases are inconsistent with this principle and would be wasteful to the system.
  • Drug pricing and supply-chain transparency: As lawmakers search for ways to curb prescription drug spending, increased transparency into how drugs are priced and what portion of that price is paid by individuals is an important first step. Transparency laws set out to make the starting price of a drug and subsequent price increases understandable to policymakers, advocates, and consumers. This information can provide a window into how manufacturers set prices and pharmacy benefit managers (PBM) handle the discounts they receive from manufacturers. To develop solutions to address the cost of prescription drugs, the CF Foundation supports transparency bills that shed light on manufacturer and PBM pricing practices.

State Proposals

  • Copay accumulator programs: Most people with CF rely on some form of financial assistance to help afford CF treatments and care. Many insurers have implemented policies known as “accumulator programs.” These programs prohibit manufacturer copay assistance from being counted toward individuals' deductibles. As a result, people unexpectedly face high out-of-pocket costs early in the year. Insurers use accumulator programs to manage the rising costs of drugs they pay for their members. However, these programs are shortsighted fixes for systemic issues facing the health care system. Solutions to address treatment costs cannot come at the expense of a person's health and financial well-being. The CF Foundation supports legislation that ban accumulator programs and require state-regulated insurers to apply copay assistance to cost-sharing requirements. This type of legislation has already passed in multiple states.
  • Drug Affordability Review Board: A growing number of states are considering legislation to create prescription drug affordability review boards. These boards would allow states to set an “allowable rate” for certain high-cost drugs. The Foundation is not opposed to the concept of value-based drug reviews, but the review process needs to be informed by all evidence available.
  • Copay caps: Legislation to cap copay costs on medications, such as insulin, is currently being considered in multiple states. This type of legislation bans insurers from charging enrollees more than a certain amount for a 30-day supply of a drug. The CF Foundation supports out-of-pocket caps for insulin and other types of medication as appropriate and relevant for people with cystic fibrosis. To date, we have supported and seen passage of this type of legislation in a number of states.

The CF Foundation and the CF community are working alongside key stakeholders, including policymakers, payers, and drug manufacturers, to ensure that people with cystic fibrosis have access to comprehensive, specialized care that they can afford, as well as ensure a system that supports investment in new research and development.

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