Jackie Zimmerman is an accomplished entrepreneur, marketing professional, former roller derby league president, and non-profit founder with a “can-do” energy that is clear when you speak with her. She is also a patient advocate for people with multiple sclerosis, also called MS. She herself received the diagnosis during college at the age of 21. In the face of this news, Jackie decided to share her story with others. She later became a 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. To help process this news, she turned to 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. With this form of MS, symptoms may “flare up” and then seem to be gone for a period of time. Jackie’s first symptoms were during a flare. At that time, the standard of care was given through an injection.
“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 complication in the treatment of MS is that in terms of symptoms, reactions to medications, and outcomes, no two cases are alike.
Jackie first participated in an MS clinical trial in 2008. However, she was unable to complete it due to unrelated treatment she was receiving for inflammatory bowel disease, also called IBD. 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. She became a more active patient advocate. This led to public speaking engagements and work with healthcare and pharmaceutical companies looking to connect with patients.
There were 2 factors that 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.”
When asked about other influences 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.”
Jackie shared some wisdom based on her experience with 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.”
Note: COVID-19 has led many sponsors to offer 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.