Commentary by Dominique Daniels, Manager, Community and Patient Support, Color of Gastrointestinal Illnesses

A television commercial changed my life. 

That might sound strange, but after years of misdiagnoses, dismissed symptoms and treatments that never quite worked, it wasn’t a specialist or a hospital brochure that finally pointed me toward relief. It was an ad I saw on TV. 

My story is not unique. For millions of patients who have historically faced barriers to diagnosis, treatment and specialist care, that kind of information can be the difference between suffering and getting the care we need. 

For nearly two decades, I lived with a chronic illness that doctors repeatedly dismissed. I was told it was probably something I ate. I was told that it wasn’t a big deal, and maybe I should try to eat more fiber. It took years, and a physician that was willing to listen, before I finally got the colonoscopy that led to my diagnosis.

But even after my diagnosis, I spent years navigating treatments that didn’t working well enough. One of my doctors retired, then a new one brushed off my symptoms and told me my case was “mild” despite my continued struggles. I went nearly three years longer than I should have before starting the biologic that would, at last, give me real relief. 

What ultimately changed how I managed my illness wasn’t a specialist referral or a hospital brochure. 

It was a drug ad. 

I saw a commercial for a medication, heard what it treated, and something clicked. I did my own research and returned to my doctor armed with questions about the benefits and risks, unsure whether the drug was right for me. Together, we decided to start the treatment, and I’ve now been on it for more than two years. 

Like many others, I benefitted from improved utilization and adherence after exposure to a drug ad. That conversation — and the treatment it led to — has meaningfully improved my quality of life.

Now, leaders in Washington are considering eliminating the “adequate provision” requirement, which allows drug ads to remain concise while ensuring patients like me have access to critical health information.

Critics of drug ads often argue that they’re confusing, or that they push patients toward medications they don’t need. But that framing misses the point entirely, and it misses patients like me.

We are not passive consumers waiting to be manipulated. We are people doing everything we can to understand our own conditions and advocate for our own care. For those that believe drugs ads are misleading, they should know that the quality of information in drug ads is subject to higher standards than any other consumer market. 

I recently learned that roughly 70% of Americans exposed to drug ads take action, like scheduling a doctor’s appointment — just as I did after seeing the ad that ultimately changed my treatment plan. Excessive oversight and regulations — so burdensome they effectively drive these ads off the air — would ultimately hurt patients.

For months, federal leaders have floated requiring drug ads to list every conceivable side effect, regardless of how infrequently that side effect actually manifests. With the Unified Agenda of Regulatory and Deregulatory Actions proposing exactly that, the threat is no longer hypothetical. 

Overwhelming patients with an exhaustive list of every rare side effect risk doesn’t make us more informed — it makes us more confused, and potentially more afraid to pursue treatment that could help us. There’s a difference between meaningful disclosure and regulatory clutter designed to make ads unworkable.

I’ll never forget the day I got my first diagnosis.

I looked around the waiting room and realized I was the youngest person there, the only woman that was being seen, and the only Black patient. When I sat in that waiting room and realized how alone I looked among the other patients, I made a silent promise to myself that I would not let my story be invisible. 

Every patient deserves to feel seen, heard and empowered as they navigate the complexities of the American health care system.

Today, through my work with Color of Gastrointestinal Illnesses, I meet patients every day in search of what I was looking for: community, education, representation, and the opportunity to pursue a better, healthier quality of life. We each have our own versions of the same journey, but we share one unifying factor: patients like me and my peers at COGI often fall through the cracks of a system that wasn’t always designed with us in mind.

We have to fight harder to be heard. 

Washington should listen to patients like us before it acts. Restricting drug ads doesn’t protect patients. It keeps people like me suffering longer than necessary.

Informed and engaged patients are healthier patients. 

Whether through community support, patient education, advocacy or responsible health communications, people deserve access to the information that helps them make informed decisions about their care. 

Don’t take away the tools that help us get there.

Dominique Daniels is the manager of Community and Patient Support at Color of Gastrointestinal Illnesses, Inc. COGI can be found here. View Dominique’s story in her own words here.

Credit: The Well News. View the original publication here.