What You Need to Know: Prescription Drug Affordability Boards and People with CF

More states are establishing prescription drug affordability boards to assess and address the cost and affordability of prescription drugs. Learn more about what these reviews mean for you and your loved ones. 

7 min read
Summary
  • In response to rising prescription drug costs and their impact on health care spending, some states have established prescription drug affordability boards to review certain high-cost prescription drugs and determine if states should take action to reduce those costs. 

  • The primary function of these types of bodies is to reduce government and commercial market spending on prescription drugs and increase affordability for patients by holding manufacturers accountable for high prices.  

  • Preserving access to care and treatments for people with CF remains the Foundation’s paramount goal. We do this by sharing evidence about the benefits of CF therapies and encouraging these reviews to center themselves around the needs of those living with CF.  

What are prescription drug affordability boards (PDAB)?  

In response to rising prescription drug costs and their impact on health care spending, many states have established prescription drug affordability boards to review certain high-cost prescription drugs and determine if states should take action to reduce those costs.

The primary function of these boards is to reduce government and commercial spending on prescription drugs and decrease the price of prescription drugs for patients. Boards may accomplish this through various means, including: 

  • Conducting affordability reviews  
  • Making recommendations to the legislature on ways to lower government spending on prescription drugs 
  • Negotiating how much a state pays a manufacturer for a drug  
  • Setting upper payment limits, or caps, on what a state will spend on a prescription drug  
What is an affordability review?  

Affordability reviews are the process undertaken by a PDAB to assess if a prescription drug’s cost is too high for patients and insurers to afford. State governments also use affordability reviews to understand what prices are being charged by different parties to provide treatment to patients.  

How many states have drug affordability boards?

As of October 5, 2023, 10 states have boards tasked with assessing the affordability of drugs, each with varying responsibilities and authorities. This includes: 

  • PDABs in Colorado, Maine, Maryland, Minnesota, New Hampshire, Oregon, and Washington state

  • Drug utilization review boards in New York and Massachusetts that have authority to negotiate how much the state pays a manufacturer for a prescription drug  

  • Ohio Prescription Drug Transparency and Affordability Advisory Council 

In 2023, lawmakers introduced legislation to create PDABs in Connecticut, Michigan, New Jersey, New Mexico, Rhode Island, Vermont, and Virginia.   

Legislation and regulatory decisions are constantly evolving. To learn if your state has or is considering a PDAB or other review board, email publicpolicy@cff.org.  

If my state has a drug affordability board, will it review CF medications? 

Not necessarily. Each state’s board varies in how it selects the prescription drugs to review. If you have questions about the review process in your state, email publicpolicy@cff.org

What is an upper payment limit (UPL)?  

An upper payment limit (UPL) caps the price a prescription drug can be purchased or reimbursed for by health plans based on the board’s assessment of a reasonable price. This type of cap may be limited to specific plans based on the state and the board’s authority. Not all PDABs have the authority to set UPLs.  

A reasonable price is determined by the board by assessing various factors relating to the cost and access of the prescription drug.  

Manufacturers are not required to accept a UPL and could instead withdraw from selling the drug in affected markets in the state. To date, no states have instituted UPLs. 

How do these boards define affordability?  

While each state has a different definition of “affordable,” review boards consider a variety of factors when determining affordability, such as: 

  • If there are alternative drugs that provide equivalent clinical support at a cheaper price 

  • If the drug’s price affects a person’s ability to obtain the drug 

  • Input from subject matter experts, including clinicians, researchers, manufacturers, and the patient community 

  • If the drug is used to treat a rare condition and therefore has different market considerations  

  • The price the manufacturer charges for the prescription drug

Once all factors are considered, the board is likely responsible for publishing a report summarizing the information considered in the review and their decision-making process.  

What is the CF Foundation’s stance on these boards?  
  • The CF Foundation believes that every person who can benefit from treatment, including CFTR modulators, must be able to access it.  
  • Our priority is to preserve access to care and treatments for people with CF. We do this by sharing evidence about the benefits of CF therapies and encouraging these reviews to center themselves around the needs of those living with CF.  

  • We appreciate the need to increase the clarity of what prices are being charged by different parties, improve affordability, and address sustainability of the health care system. However, solutions to address affordability cannot come at the expense of patient access.  

  • Any affordability review must place the patient at the center of the discussion and include patient voices throughout the process and consider how the board’s decision will impact a person’s ability to access their medication.  

  • It is the responsibility of both states and manufacturers to ensure that all people with CF who can benefit from therapies continue to have access to them. 

How has the CF Foundation engaged with affordability review processes in the past?  

As a patient advocacy organization, the Foundation focuses on ensuring PDABs understand the overall value a prescription drug has for people with CF by providing evidence about the value of therapies, including the impact on long-term health and well-being and how a therapy affects other aspects of CF care.  

We help identify opportunities for stakeholders, such as community members, caregivers, researchers, and providers, to testify to the drug’s ability to change the lives of those on it.   

What happens if my state says that a CF drug is unaffordable?  

If a PDAB determines that a drug is unaffordable, it can take a variety of steps depending on their degree of authority, including making recommendations to the legislature on ways to lower drug spending; negotiating how much a state pays a manufacturer for a prescription drug; and setting upper payment limits. 

How can I learn more about protecting access to CF therapies in my state? 

To learn more about the Foundation’s engagement in your state and opportunities for community advocacy, such as providing your personal story on how CFTR modulators impact your life, contact us at publicpolicy@cff.org.

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