Parents Like Me Can’t Afford Restrictions on Health Information 

For as long as I can remember, I’ve been passionate about sharing knowledge with others. I spent 25 years as a news reporter in Detroit making a career out of it. When both my daughters were diagnosed with cystic fibrosis (CF), that passion didn’t fade. In fact, it only grew stronger as I knew that more information could lead to better health outcomes for my children. That’s why I find recent proposals from the U.S. Food and Drug Administration (FDA) to expand disclosure requirements in drug ads deeply troubling, especially if they overwhelm patients and families and make information harder to use. 

CF is a rare disease with just 40,000 people diagnosed in the U.S. There is no cure, but new medications help about 90 percent of the community better manage their condition and lead a high-quality life. More information empowers moms like myself and other patients to have better conversations with our care providers. It shapes the questions we ask, the choices we make, and the care our children receive. Restricting any flow of health information limits what parents can access when trying to make the best decisions for their families.  

I know drug ads do more than market a new treatment. They can inform and educate the public. They prompt patients and their families to learn more about a condition and a treatment’s potential side effects. They can serve as a bridge reminding people of what treatments are available. A 2025 survey found that 83% of patients living with a chronic disease feel treatment advertising has been beneficial, with two-thirds reporting a better understanding of their options.  

I have seen the benefits of these firsthand. A drug ad about enzyme treatments for individuals who can’t properly digest food, including those with CF, not only informed me about new options to consider for my family, but also broadened awareness and made the condition feel less isolating for my girls. That kind of visibility can ease stigma and make difficult conversations a little easier. 

My husband and I come from large families – ten siblings in total – and no one had ever been diagnosed with CF. We had no idea we could even be carriers until our first daughter, Molly, was born in 1994 and we began noticing red flags. She was always hungry, shook when she ate, had a distended stomach and tasted salty when we kissed her. Newborn screening for CF didn’t exist then, and information wasn’t easy to find. Ultimately, it was a “Kiss Your Baby Campaign” Public Service Announcement (PSA) on a local news station that pushed me to call our pediatrician and seek answers.  

These encounters have showed me just how powerful access to health information is when trying to understand a condition. Information can come in many forms, including a PSA, an educational brochure, or even a drug ad we see during the commercial break of our favorite TV show or sports match.  

Conversations about treatment options continued when our second daughter, Emily, was also born with CF. Raising two girls with a chronic disease has shown me that access to clear, reliable information is essential. Families are fighting for it, desperate for it, and sometimes not even aware of what information they’re missing until it matters most. When you love your children more than anything, you feel a responsibility – a need – to find information that might help them. As a parent, I could never accept that something important to my daughters’ care might exist without my knowing about it. 

Truth be told, I struggle to understand the argument against receiving health information, including from drug ads. It overlooks how parents engage in their child’s care. Drug ads don’t force anyone to take medication. They create awareness and help parents stay informed about treatment options. In a health care system that 63% of individuals struggle to navigate, that kind of entry point matters. Proposals to add additional regulations would significantly reduce the usefulness of drug ads for my children and me.

I know the questions that immediately come when your child is diagnosed with a chronic disease: What are our options? What can I do to help my child? Without access to information, these questions can go unanswered, and without answers, hope is harder to find. Hope begins with access to health information and the tools to make the right decisions. 

As a reporter, I was trained to dig for answers. As a mother, I had no choice. Caregivers don’t need less access to health information. We need more of it, and we need it to be accessible. Because sometimes, a single piece of information can change the course of a life.

Laura Bonnell is a former radio news reporter in Detroit, now dedicated to raising awareness about cystic fibrosis as president of The Bonnell Foundation.