Female Disruptors: Suzanne Robotti has shaken up transparency about side effects
I have a plaque on my wall that makes me smile every time I see it. It says, “Not to spoil the ending for you, but everything’s going to be OK.”
I had the pleasure to interview Suzanne Robotti. Suzanne is the founder/president of MedShadow Foundation, the independent nonprofit that informs people about the side effects of medicine. She currently serves on the FDA Drug Safety and Risk Management Advisory Committee as the Consumer Representative. Robotti founded MedShadow in 2012 after two major health issues drove her to become engaged in patient advocacy. Robotti’s mother, like millions of other women in the 1950s and 1960s, took the prescription drug DES (diethylstilbestrol), which was thought to prevent future miscarriages. The drug was widely used despite earlier publication of a study that linked DES to reproductive organ malformation and even cancer. DES was eventually taken off the market in 1971. When Robotti reached childbearing age herself, she discovered she was infertile due to DES exposure. This prompted her to join DES Action USA, a patient advocacy group. In 2010, her son’s physician prescribed Ritalin for his ADD, but was unable to explain the medication’s side effects. This prompted concern about the long-term effects of this stimulant on her son’s developing brain. These two experiences prompted Robotti to form MedShadow Foundation as a means of bringing the issue of medication side effects into the public discourse. In 2015, DES Action USA joined MedShadow Foundation after 30+ years as one of the most effective grass roots education and advocacy groups ever. DES Action’s work continues as Robotti serves as executive director for the membership organization.
Thank you so much for doing this with us Suzanne! What is your “backstory”?
I’m passionate about teaching the public about dangerous side effects of medicines because I was personally affected twice. The first time was when I reached puberty, I learned that all my reproductive organs had been damaged when I was in utero and because of that, I would never be able to become pregnant. The damage to me was caused by a “miracle drug” called DES that my mother had been prescribed when pregnant with me. Fertility organ damage was a typical side effect although it wasn’t usually discovered until years later when girls reached either puberty or attempted to become pregnant. DES was the world’s first synthetic hormone and endocrine disruptor and millions of pregnant women in the 1940s, 50s, 60s and early 70s were given it.
Many years later, my son was diagnosed with ADHD and Ritalin was prescribed. After asking how Ritalin would affect his developing brain, I discovered that no one knew, there were no long term studies on the effects of Ritalin on teens (there still aren’t). To me, raising a child with moderate ADHD, the risks were too high. We successfully addressed his challenges with cognitive behavioral therapy.
Why did you found your company?
My DES exposure and his ADHD diagnosis motivated me find a way to warn people that medicines can cause devastating side effects that may not be easily or quickly discovered. Five years ago I launched MedShadow.org as an independent non-profit so that people can get unbiased information the side effects, long term effects, risks and benefits of medicine.
MedShadow.org has 120,000 page views per month and enlists award winning medical and science journalists to write original articles. In 2015, the Board of DES Action USA voted to donate the organization to MedShadow to run. As a “DES Daughter” I’m honored to now manage DES Action USA, the nonprofit that has served as the primary information and advocacy group for the DES-exposed community.
In 2017, I was named to the FDA Drug Safety and Risk Management Advisory Committee as the Consumer Representative, which brings my patient advocacy to a new level. I now have a seat at one of the tables where drug safety and the protection of patients is paramount.
I’m proud that for five years MedShadow has earned the seal of “HONcode” standard for trustworthy health information and for the past three years has received the prestigious designation of Great Nonprofit, along with several other awards for health websites.
What is it about the work you’re doing that’s disruptive?
We are disrupting the status quo in 3 ways: we are putting the person first — a person who needs medicine is not just a patient. With about half of all Americans regularly taking an average of four prescription drugs you need to know that a drug you are trusting to make you feel better won’t give you such side effects that you can’t live your life. Is it worth taking statins if it puts you at a higher risk of diabetes?? We give you the full information so that you can decided if the side effects are worth the benefit of the drug or if you should seek an alternative — the same way I did with my ADHD kid.
Which leads to disruption #2: We are independent of any pharmaceutical influence. Because we won’t take money from drug companies, we can speak the whole truth, not just what drug companies pay us to say or, worse, pay us to stay silent about.
Disruption #3: MedShadow is the only nonprofit whose sole focus is on the side effects of medicine. We hire leading science and medical journalists to do original reporting, publish “first person” stories from people badly affected by medicines and write our own commentary on issues relating to our mission. While other sources may include mentions of side effects in their reporting, MedShadow is the only site that dives deeper on the subject of side effects of medicine.
We all need a little help along the journey — who have been some of your mentors?
Kari Christianson and Fran Howell, previously the Research Director and the Executive Director of DES Action, have helped me understand the implications of my exposure to DES for years. When I told them about my idea of MedShadow they cheered me on and still give me great advice.
Sidney Wolfe, the co-founder of Public Citizen and a physician was the Consumer Representative on the FDA’s Drug Safety and Risk Management Committee before me. He’s been great, speaking to me about his experiences on the Committee, sharing how he thinks about drug safety and generally being accessible.
Diane Zuckerman offered me a scholarship to a training program run by her organization, National Center for Health Research. This was incredibly helpful in filling gaps in my self-education and in teaching me about the existence of the FDA Committees.
The staff of MedShadow and DES Action are the people who keep me going every day, offering ideas and insights I never would have gotten to on my own.
How are you going to shake things up next?
We want to get closer to our fans by holding brown bag lunches with prominent speakers and medical professionals. We want to create educational modules for middle school students to learn how to use medicines respectfully. They need to know that just because that medicine is, literally, within reach in their home medicine cabinet, that doesn’t mean it is safe for them to take, or party with. Medicines and supplements have a very specific effect within a human body, that’s why we take them. And we’d like to broaden our mission to explore just what is “healthy” in the alternative health community and what is not. Does acupuncture really work? For what? What’s the difference between GMO and simple cross breeding that’s been done for 2000 years?
Can you share 3 of the best words of advice you’ve gotten along your journey? Please give a story or example for each.
The first content manager I hired for MedShadow didn’t share my vision and we struggled for a couple of years to work effectively together. Still, I thought her background and intelligence made her ideal for the job. My best friend (now a therapist and coach) told me that the perfect person might not be the right person. It helped me to realize that our constant clashes were holding both of us, and MedShadow, back.
I have a plaque on my wall that makes me smile every time I see it. It says, “Not to spoil the ending for you, but everything’s going to be OK.”
What’s a book/podcast/talk that’s had a deep impact on your thinking? Share a story with us.
In 1991 I took a birthing class taught by Elisabeth Bing, the co-founder of ASPO/Lamaze. I signed up because, from an odd combination of opportunity and timing, I was starting a small magazine targeted to childbirth educators. Since I was not a birth instructor and I’d never had a baby, I needed to learn more about it. When I took Elisabeth Bing’s Lamaze class, she was in her 80s. She taught us that fear increased pain of labor and that understanding what your body was doing would lower the pain. She taught us that fully participating in birth was hard, painful and so rewarding. Such wonderful life lessons!! 50 years after she started the Lamaze revolution in birth, she was still giving women the tools they needed to manage their births. She was extraordinary.
Some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might see this. :-),
Atul Gawande. I knew nothing of medicine or healthcare (beyond childbirth!) when I started MedShadow. All I knew was that we need to change our attitude about the safety of drugs and surgery. I found one of Dr. Gawande’s Vanity Fair articles on how medicine should possibly be run more like the Cheesecake Factory restaurant — he broke my brain open to possibilities. I’ve been an avid reader of his work and a huge fan ever since.
How can our readers follow you on social media?
● Twitter or @MedShadow_Su
