Dear Chair Nosse and Members of the Committee on Behavioral Health and Health Care:
On behalf of the nearly 470 people living with cystic fibrosis in Oregon, the Cystic Fibrosis Foundation writes to express our support for SB 289, which updates the Oregon Prescription Drug Affordability Board’s (PDAB) affordability review process to ensure reviews are objective and grounded in evidence. Current statute mandates that the PDAB identify exactly nine prescription drugs and at least one insulin product each year. SB 289 would allow the PDAB to identify up to nine prescription drugs annually, ensuring that decisions are grounded in data and real-world patient experiences — not arbitrary numerical targets. However, the bill does not update the requirement for the PDAB to identify at least one insulin product annually. We urge the committee to support this legislation and recommend amending the bill to allow the PDAB to identify up to one insulin product each year.
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 lung damage, life-threatening infections, malnutrition, and other complications. Cystic fibrosis is both serious and progressive; lung damage caused by infection is often irreversible and can have a lasting impact on length and quality of life, resulting in extended hospitalizations, transplant, or premature death. As a complex, multi-system condition, CF requires targeted, specialized treatment and medications. There is no cure.
SB 289 Promotes Objectivity in the Affordability Review Process
SB 289 allows the PDAB to identify up to nine drugs each year, rather than requiring the Board to identify exactly nine. The current requirement that the PDAB identify nine drugs each year may create affordability challenges, and risks introducing bias into the affordability review process by compelling the Board to find a specific number of unaffordable drugs. We understand requiring the Board to evaluate a certain number of drugs every year, but pre-determining the outcome of these reviews undermines the credibility and objectivity of the process. This legislation will give the Board the authority to make its decision based on the data shared during the affordability review and better reflect the true affordability challenges faced by patients and the healthcare system.
Recommendation: Apply “Up To” Standard to Insulin Products
While SB 289 appropriately allows the Board to identify up to nine prescription drugs each year, it does not change the requirement to identify at least one insulin product annually. Maintaining a fixed quota for insulin products creates the same risk of bias that this legislation seeks to address with other prescription drugs. We recommend amending SB 289 to allow the Board to identify up to one insulin product each year, consistent with the changes made to the broader prescription drug identification process. This would ensure that decisions related to insulin products are similarly grounded in data and real-world patient experiences, rather than a fixed numerical quota.
We support this legislation and urge the committee to amend and adopt SB 289 to protect the credibility and effectiveness of the affordability review process for all drug classes, including insulin products.