Thank you for the opportunity to comment on the work of the Colorado Prescription Drug Affordability Board (PDAB) as it begins to conduct affordability reviews. Generation Patient is a nonprofit organization created and led by young adults with chronic and rare conditions. We are proudly independent of all private healthcare industry funding, including from the pharmaceutical, insurance, and hospital industries. Our organization focuses on peer support, advocacy, and access to educational information and resources as fundamental pathways to empowerment.
According to the Georgetown University’s McCourt School of Public Policy, 53% of people ages 18-34 use prescription drugs. Moreover, 21% of people ages 18-49 years old say they have difficulty affording their medication. The share is likely to be even higher for younger adults given that the highest poverty rate in the United States is between the ages of 18-24, but given that research does not sufficiently focus on young adult populations, there is no specific data to cite. As young adult patients living with chronic medical conditions, we struggle to afford the prescription drugs that allow us to live and thrive. While our diagnoses and experiences differ, the high price of the prescription drugs that we rely on to survive and maintain our quality of life is a uniting factor for nearly everyone living with chronic health conditions in the United States - especially young adult patient, especially because we will depend on treatments not only for a few years but throughout our entire lives.
For example, one young adult patient takes Enbrel to treat her chronic condition. The medication carries a list price exceeding $1,000 per month. Between her family’s insurance plan for which she is still eligible and a manufacturer provided co-pay card, Victoria is able to afford the medication. Nevertheless, as a medical student who is in debt and without a steady source of income, Victoria worries constantly that the manufacturer support could end at any time and about the options that will be available to her when she turns 26 and is no longer able to stay on her family’s insurance.
Young adult patients - like all patients - need innovative prescription drugs at fair prices. Innovation and affordability are not mutually exclusive. The work of the Colorado Prescription Drug Affordability Board is integral to holding pharmaceutical companies accountable and increasing the transparency of prescription drug prices.
The Colorado PDAB is charged with reviewing affordability and, if applicable, setting upper payment limits on some of the highest-priced drugs, many of which treat chronic conditions, precisely because of the financial burden that accessing these drugs places on both the patients who depend on them and the health system as a whole. This holistic review of how these drugs are priced and accessed provides an important foundation for legitimizing what so many patients know — that many drugs are prohibitively expensive, creating an often insurmountable barrier to access for the patients who need them. Furthermore, the upper payment limit setting process is one of the few tools that states have to create accountability for manufacturers and to increase the ability of patients with the highest utilization rates to access some of the most high-priced drugs.
The PDAB’s draft affordability report on Trikafta mentions that many patients rely on patient assistance programs (PAPs) in order to afford the expensive drug. While this assistance can make the drug more affordable for patients in the short-term, there are important draw-backs that should be considered when factoring PAPs into an affordability review of a drug. First, PAPs do not address the root cause of the expense of a drug - the ability of the manufacturer to set the price and by insulating the patient from the list price can perpetuate the ability of the manufacturer to continue to set exorbitant prices. Second, PAPs are not always a reliable source of financial support, and the manufacturer can cut off access to a patient at any time. We have heard stories where a patient has their assistance pulled the day they were to receive their Stelara injection.
As we continue closely following the work of the Colorado Prescription Drug Affordability Board, we hope that the reviews will continue to prioritize patients over private healthcare industry interests. We are grateful for the opportunity to submit this testimony, on behalf of our community of patients and the next generation of patients.