Who Gets to Decide What Patients Know?
The American media landscape teems with offers to upscale your mattress or replace an outdated device. It is peppered with ads for medicine treating ailments you may never have with side effects you would not wish on anyone. We mock TV ads for being cheesy, repetitive, and unavoidable until it is our turn and we are the ones ready to toss that old mattress, replace our outdated smartphone, or treat a problem your doctor flagged at your last checkup. Ads can give us timely information – information that makes a difference and empowers us to lead a better, healthier life.
Having lived with multiple sclerosis (MS) for more than thirty years, I rely on ready access to all aspects of health information, and I am well aware of what we stand to lose when it is restricted. That is why I am alarmed by any policy proposal that would make it harder for American patients to learn about the latest medical therapies and treatments.
The U.S. Department of Health and Human Services (HHS) and the Food and Drug Administration (FDA) are considering regulatory changes to drug advertisements that would cram ads with extra, often unhelpful side effect disclosures, overwhelming viewers and making ads virtually useless to people like me. Current regulations already guarantee ads for medications are factual and balanced, layered with warnings and alerts to potential side effects.
The Trump administration knows better than anyone the importance of protecting the free flow of health information. During the pandemic, federal officials and social media platforms took steps to limit speech around medical information, dictating which voices could be heard and which facts would be repressed. Esteemed scholars, leading scientists, and frontline practitioners, including the current heads of NIH, Jay Bhattacharya, and HHS Secretary, Robert F. Kennedy Jr., were censored online and targeted by the political establishment, in some cases for the only “crime” of sharing informed opinions and data, encouraging people to consider information and decide for themselves.
Some of the very people who were silenced or cancelled for sharing health information then are now the ones pushing to silence – even outright ban – critical health updates. Whether in medicine or civil society at large, our leaders ought to know the importance of free speech. Their commitment to making America healthy again and radical transparency gives many patients like me hope. It gives us hope that we will get access to unfiltered medical information, without corporate or governmental censorship. Whether it is a venerated doctor, the publication of new data, or even drug ads that make some of us roll our eyes, patients do not need Washington to be their nanny.
For patients with a progressive disease like me, the stakes are deeply personal. Managing my MS requires lots of study. Making good choices about my care requires a steady flow of research data and regular updates about innovations around symptom treatment. It allows me to have meaningful conversations with my doctor, including weighing an advertised treatment, so that together we can make decisions to best manage my health. Withholding information from patients is not just a matter of First Amendment rights and constitutional law for me. It is life or death.
Patients become their own best advocates when equipped with the tools to enter their doctor’s office with knowledge, ready to be active participants in their care. Whether through scientific articles, news coverage, or even television commercials, knowledge helps create an informed patient. The informed patient is empowered to understand their options and participate fully in decisions about their health, regardless of their condition, community, or circumstance. The informed patient does not have all the answers, but they know enough to start the right conversations and seek out care.
The decision to pursue a treatment always rests with the patient and their team of medical professionals. I have often first learned about innovative medical treatments from an advertisement, and then was able to discuss them with my neurologist, prompting my doctor and me to consider every option. That conversation is important, regardless of whether we pursue that specific new treatment option or not.
This progress is what we risk losing if we renew the dangerous habit of repressing legitimate, factual information. I know that many people dislike drug ads (or any ads, for that matter). I can find them annoying, too. But I should have the freedom to be informed and be the one who can freely press the mute button – not Washington – if I choose. I want to use my freedoms to find the best ways to live in the body I have, to enjoy my family for as long as I can, and to find hope anywhere I can.
The federal government should not be in the business of limiting what people can read, hear, or learn about their health. Informed patients are healthier. And an informed population is stronger. Preserving the free and effective flow of medical information is not just about patient health. It is about protecting principles that make our society thrive.
John “CZ” Czwartacki is the Executive Director of the Informed Patients Project and has lived with multiple sclerosis for 33 years.
