How patient voices can drive meaningful change
Nearly 90% of teens and young adults who use social media say they use it to find information about their healthcare. However, as pharmaceutical marketers have shifted more and more of their budgets towards selling their products on social media, especially via paid influencers, the US Food and Drug Administration’s (FDA) regulation has lagged behind.
A new landmark legislation, The Protecting Patients from Deceptive Drug Ads Online Act, introduced by Senators Durbin (D-IL) and Braun (R-IN), directs the FDA to update and enforce its regulations for how prescription drugs are promoted on social media. It does this by focusing the agency’s attention specifically on deceptive or misleading communications by telehealth companies, social media influencers, and health providers.
This act is a direct result of the work of Generation Patient, led by its founder and BMJ patient advisor, Sneha Dave. What makes this legislation particularly noteworthy is that it was heavily influenced by patient advocacy, especially from a young patient group. It’s not often that patients lead the charge for legislation like this. Dave’s group has been discussing this issue for over three years, keeping it continually relevant in public discourse, and now they can finally see bipartisan support for their efforts. Dave told us:
“Not only is this legislation bi-partisan and led by the perspective of patients, but it also is supported by academic societies and patient groups, who have seen this legislation as a protective public health measure.”
As Generation Patient was establishing its health policy arm, the Health Policy Lab, it soon realised there was a widespread issue with how prescription medications were being marketed on social media, particularly through influencers. As a result, it began to focus on how legislation could improve oversight and protect vulnerable patients, especially the younger ones.
“Our young adult patient demographic is native to the social media landscape, and it’s exciting to formulate something from our experiences as a young adult patient advocacy group.”
One major concern Dave highlights is the growing trend of micro-influencers promoting prescription drugs without proper safety information. Those that pose the unique concern are influencers who have a smaller following and an increased parasocial relationship with younger audiences. She shares an example: an influencer had casually recommended a migraine medication to a follower in a comment section with a simple “you won’t regret it” comment. These kinds of micro-interactions lack the regulatory oversight needed to ensure that patients receive the full picture, including possible side effects and contraindications, explains Dave. She also raises the issue of the virality of drug advertisements:
“One advertisement had nearly a million likes and over 200 million views, with no safety information—it just talks about how easy it is to get access to this particular prescription drug.”
Motivated by these findings, Dave and her team took action, advocating for legislation that would improve oversight of pharmaceutical marketing practices on social media. Their efforts have led to the introduction of a pivotal bill that would increase the capacity of the FDA to take more proactive measures on TikTok and Meta. It also empowers the FDA and the Federal Trade Commission (FTC) to collaborate on regulating social media advertisements. The legislation also proposes the creation of a public database to enhance transparency around pharmaceutical marketing, ensuring that patients have access to vital information about the medications they consider.
The impact of this patient advocacy work is profound, especially given the complexities of navigating political landscapes during an election year. Generation Patient’s perseverance has garnered bipartisan support and medical industry endorsement, illustrating the power of patient-led initiatives in shaping public health policy. The introduction of this legislation not only addresses an immediate concern but also sets the stage for future reforms in other health-related areas, such as non-prescription drugs and medical devices.
“We hope the FDA engages our community and other patients in creating public-facing materials, as historically they have not been the most accessible for patients. This could serve as a model for regulating other health-related content on social media, inspiring similar legislation in other areas of public health.”
Dave’s story exemplifies the significant role that young advocates can play in influencing policy and protecting public health. As the conversation around ethical social media marketing continues to evolve, the groundwork laid by Generation Patient offers hope for a more transparent and responsible approach to pharmaceutical advertising.
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The Protecting Patients from Deceptive Drug Ads Online Act is endorsed by Generation Patient; the American College of Physicians; the American Academy of Neurology; the American Academy of Family Physicians; the American Association of Child and Adolescent Psychiatry; the American College of Gastroenterology; the American Psychological Association Services; Doctors for America; Public Citizen; Public Interest Research Group; Light Collective; Young People’s Alliance, and Connecting to Cure Crohn’s and Colitis.
In February, Durbin and Braun sent a letter to the FDA urging it to swiftly update its enforcement tools to reflect the current social media platforms and tactics used to promote prescription drugs and prioritise the protection of children from harmful and inaccurate medical advice.
The Protecting Patients from Deceptive Drug Ads Online Act one-pager on the bill can be found here>>
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About Sneha Dave, Founder & Executive Director, Generation Patient
Sneha Dave is the executive director at Generation Patient, a nonprofit that drives meaningful change for the future of young adults with chronic and rare conditions through direct support and system change. Under her leadership, Generation Patient has grown its areas of peer support as an intervention in the care of young adult patients, having led nearly 600 peer support meetings and serving as the youngest principal investigator on an award through the Patient-Centered Outcomes Research Institute.
She has also led Generation Patient’s three health policy areas of focus, including reforming the patent system, clinical trial diversity, and increasing oversight of pharmaceutical advertisements on social media. Generation Patient has secured support from major foundations such as the Commonwealth Fund, Arnold Ventures, Disability Inclusion Fund, and others to ensure the young adult patient’s voice is positioned to drive change. Dave has spoken at the White House, Aspen Ideas Health, and Capitol Hill, featured nationally on C-SPAN, and is a past contributor for U.S. News and World Report. She is part of the Comparative Effectiveness Public Advisory Council, an independent appraisal committee of the Institute for Clinical and Economic Review.
She also serves on various advisory boards, including a panel for the British Medical Journal, a grantmaking committee with the Robert Wood Johnson Foundation, and part of the Yale Collaboration Regulatory Rigor, Integrity, and Transparency advisory board. Dave was awarded two academic fellowships with the Association of Health Care Journalists.
For her work, she was recognised as an American Association of People with Disabilities Emerging Leader in 2020. Dave graduated from Indiana University in May 2020, majoring in chronic illness advocacy and journalism.
Generation Patient is a nonprofit driving meaningful change for young adults with chronic and rare conditions. Generation Patient facilitates events, online programmes, and advocacy initiatives for young adults living with chronic and rare conditions to ensure that they have the opportunities and resources to thrive. https://generationpatient.org/
