How Young Voices Can Shape Prescription Drug Policy

Young adults with chronic conditions can face a lifetime of illness — more than 85 percent of children with chronic conditions survive into adulthood. Chronic illness poses a threat to young adults’ current and future livelihood, independence, and dignity. Navigating life with a chronic medical disability from an early age not only hinders the pursuit of higher education and stable employment opportunities but also casts a looming shadow over the financial security of young adult patients.

For young adults with complex, lifelong conditions, access to affordable prescription drugs is a vital necessity. More than half of people (53%) ages 18 to 34 rely on prescription medications; one in five (21%) of those ages 18 to 49 struggle to afford them. This percentage is likely even higher for younger adults, given the high poverty rates among people ages 18 to 24 in the United States. Access to medicines is an urgent need and requires serious solutions.

Young adult patients have powerful voices honed by their lived experiences. They can create meaningful policy changes and improve the lives of those living with lifelong medical disabilities. Lived experience can and should be a driving force in policymaking. Legislation, including the Americans with Disabilities Act and the Inflation Reduction Act, was passed because of the participation of patient advocates.

With the average age in the U.S. House of Representatives and the U.S. Senate 58 years and 65 years, respectively, and think tanks and advocacy organizations often dominated by funding from industry, especially pharmaceutical companies, there is a need for informed and unbiased young voices in the policy dialogue. The Health Policy Scholars program was created to amplify young voices by providing young adult patients with impartial, high-quality education free from the influence of the health care industry.

In the conversation around access to prescription drugs, young adult patients can contribute an essential perspective on pharmaceutical patent abuse, pharmaceutical direct-to-consumer advertising on social media, and clinical trial diversity with an emphasis on data disaggregation.

Pharmaceutical patent reform and the movement to advocate for lower-cost prescription drug options are particularly important to young adult patients who will face a lifetime of reliance on prescription drugs to treat chronic conditions. Young adult patients can speak from personal experience about the importance of access to lower-cost generic options. They also can attest to the devastating impacts of drugmakers’ abuse of the patent system, such as constructing patent thickets (where companies file a web of unnecessary patents on top of a primary patent), pay-for-delay tactics (brand-name drugmakers paying other generic or biosimilar companies to delay market entry), and product hopping (brand-name drugmakers changing formulations of a drug before its patent is set to expire). When they consider changes to the patent system, regulatory agencies such as the United States Patent and Trademark Office, Food and Drug Administration, and Congress need to hear from young adult patients who will be affected by policy for years to come.

Pharmaceutical direct-to-consumer advertising on social media channels — with a unique impact on young adult patients who are digital natives and the primary users of platforms like TikTok and Instagram — is another area for reform and increased regulation. Many of the pharmaceutical industry’s social media schemes, like working with influencers to advertise prescription drugs, are designed to target young adults. Young adult patients are uniquely suited to assist agencies, including the Food and Drug Administration and the Federal Trade Commission, in developing guidelines to stop these predatory practices.

Finally, clinical trial diversity is an area ripe for reform. Currently, many clinical trials and adverse event reporting systems are aggregated to include people ages 18 to 64. It is critical that data are publicly disaggregated to ensure enough young adults are included in clinical trials and to examine young adults versus their younger or older counterparts so that outcomes are better understood. Doing this will require young adult patients to submit comments on clinical trial diversity regulations to ensure their voices are well represented.

Young adult patients feel compelled to participate in the policy conversation because their voices are not fully represented — and cannot be by people without lived experience. Policymakers’ decisions about health care have a significant — even life or death — impact on young adult patients. Educating young adult patients and teaching them how to use their voices to call for positive solutions can help them become the empowered policymakers and advocates needed in the future.