Medical Hero Story: Jackie Zimmerman, MS Patient Advocate

Jackie Zimmerman is an accomplished entrepreneur, marketing professional, former roller derby league president, and non-profit founder with a “can-do” energy that is immediately evident when you speak with her. She is also a patient advocate for individuals with multiple sclerosis, receiving the diagnosis during college, at the age of 21. In the face of this world-rocking news, Jackie powerfully pivoted, sharing her story with others and later, becoming a patient participant in clinical research.

“It was a total surprise – no one in my family has it,” Jackie said. “My first question was…am I going to die? I didn’t know anything about MS. And all the patient-facing documentation was targeted at older individuals.”

Jackie found this surprising, particularly when she learned that most patients are diagnosed in their twenties. Her response? It was the mid-2000s, so Jackie turned to one of the newest forms of digital communication, blogging.

“Initially, I started a newsletter and then it became a blog. This was before social media, so blogs were how you connected. Blogging got me on the scene of patient advocacy. There are lots of advocates, now, but then, there weren’t as many,” Jackie explained.

Jackie was diagnosed with relapsing remitting MS which first presented during a flare. At that time, the standard of care was injectable medications.

“Which was really scary at 21 – who likes needles?” Jackie said. “My doctor didn’t provide any guidance. He told me to pick whatever medication I wanted. Today, there are many different options and methods of delivery.”

Another factor complicating the treatment of MS is that in terms of symptoms, prognosis and reactions to medications, no two cases are alike.

Jackie first participated in a clinical trial in 2008 for a MS medication, but being in treatment concurrently for Inflammatory Bowel Disease (IBD) was skewing the results and after a short time, she was asked to withdraw from the clinical study. Over a decade would pass before Jackie would join another clinical trial.

During that time, Jackie founded Girls with Guts, a non-profit to support women living with IBD, and her role as a patient advocate scaled, which led to public speaking engagements as well as work with healthcare and pharmaceutical companies looking to connect with patients.

Two factors steered her back to clinical research as a healthcare option for MS.

“I asked my neurologist questions, because I wanted to keep abreast of things, particularly because I write about them as an advocate,” Jackie said. “Being part of a patient advisory board for a bio-pharma company was also a huge driver. I understand about clinical research participation and what it means. The only factor this second time was a consideration about the time commitment – it’s about a 25-minute drive away. The trial does offer transportation if you need, which I think is awesome, but I don’t need it.”

(COVID-19 has accelerated the adoption of virtual clinical trials and the use of digital devices to monitor patient progress. CISCRP recently conducted a survey on the impact of COVID-19 on clinical research. Access the report here).

When asked about other determinants in her decision-making, Jackie commented “I’m married, so my husband was involved. He said it’s my choice, but I considered him in the process, and all the things you think about when you’re involved in a partnership. I know how to talk with my friends and family about clinical trials to allay their fears. I know how to position it so as not to scare anybody.”

Jackie did not consult any patient advocacy organizations for guidance before participating.

“I’m in the minority here because I know a lot more about clinical trials than the average patient. I knew what questions to ask because I had been on a patient panel and participated in an FDA Patient Advocacy training. I’ve spent a lot of time learning about trials.”

The conversation then turned to what advice Jackie would offer readers considering clinical trial participation.

“Oh man, there’s so much advice,” Jackie replied, laughing. “I have so many angles. Mostly, don’t be afraid of them. It’s not a last resort for MS in terms of treatment. It’s a way to assist your community and get access to medications, years in advance. You’re so heavily monitored that the potential for anything going wrong is quite low.”

Jackie would consider participating in future clinical trials.

“Yes – as long as it fits into my life and it’s not an inconvenience or as long as the potential benefits outweigh the potential inconvenience. I know I have a lot of privilege – I can work from home and make my own schedule. If you’re looking at trials that may not fit into your life, know that there are pharma companies working around participant schedules with office and home visits. If it’s not feasible right now, it doesn’t mean that it will never be feasible.”

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