Medical pioneer: Meet Diane Kramer, MS clinical trial participant
Diane Kramer first noticed tingling and numbness in various parts of her body in 2000, but it wasn’t until 2010, when she began suffering from cluster headaches and lost all feeling on the left side of her body, that she went to speak with her primary care doctor. Diane, then a nurse, was immediately sent for an MRI which confirmed her diagnosis: Relapsing-Remitting Multiple Sclerosis (RRMS).
What followed was a series of doctor’s appointments and misinformation until Diane found her home in a comprehensive care center, thanks to the assistance from patient navigators at the National MS Society. It was through this experience Diane, who many know as “the girl with MS, a ponytail, and orange shoes,” first discussed clinical trials and embarked on a long journey of research participation -- 17 trials and counting.
Diane spoke with us about her experiences with MS, clinical trials, and what it means to her to contribute to the field.
When you called the navigators, what was that experience like for you?
It was fantastic. Thank goodness. At that point, I had had so much negativity from so many people that if I had had one more negative experience, it might have been the tipping point for me. On the initial phone call, I got MS 101. I was in plastic surgery nursing — MS was not in any way part of my wheelhouse as a healthcare professional. I needed people to talk to me like I didn’t know what was going on, because I didn’t know what was going on. They sent me a pamphlet and some web information. What they gave me is what is now known as the “Knowledge is Power” resources. These are resources that I continue to recommend to people today.
The navigators are funded by the MS Society, not an insurance or pharmaceutical company. Early in my diagnosis I had someone call and tell me they were my care coordinator, but it was actually someone from the insurance company calling to tell me about my co-pays. When you are first diagnosed, you’re in an incredibly vulnerable place — you have no idea which end is up -- so the navigator experience really righted the ship for me. I was really impressed by how unbiased they were.
What sparked your interest in clinical trials? How did you educate yourself on clinical research in this area?
I had spent time reading whitepapers, so I actually knew more than some people about research. But research wasn’t on my radar at all. During my initial appointment with my neurologist, the very first thing he did was confirm my diagnosis and then went through what we do with MS — what care looks like, what disease modifiers are available, the “what you need to know”. Then together we also set short term goals, things I would do in the next month, and long term goals, like marriage and kids, and it was part of that goal setting that opened up the discussion about research.
My doctor was extremely informative. He does quite a lot of research himself. I tend to be a jump-in-with-both-feet kind of person, and he was very helpful in talking me through what each study would entail then sending me home with the resources and not having me sign up on the spot. I found that to be really helpful as time went on and I started participating in projects that weren’t his.
Research became part of my story because it felt like something I was doing.
You feel like MS happens to you and it’s really difficult to find actions that you can take. Research feels like an action — you’re giving something that no one else can do, only you can do it.
Why do you participate in research?
When somebody says, “Research sounds great, how can I get involved?”, that’s an easy answer for me — go to iConquerMS, NARCOMS, sit down and fill out your surveys. You can watch Wheel of Fortune and do it. And your healthy partner can do a lot of them too. When a study involves a healthy subject I’m like, “I’ve got one, he drove me here.” My poor husband. I always hear people are so afraid they are going to get the placebo, and I’ve never had that experience.
I just signed up for trials 16 and 17 over the past three weeks and I just got paid for the first time ever on number 15. I don’t do this for the money. The two reasons you do this are impact and accessibility. What kind of an impact is this going to make? How much does this really matter? And is it accessible?
What was the most difficult part of being in a clinical trial?
The very first trial that I was in I had to pull out of. It wasn’t that it was a bad experience, it was that I had to get stable. I had to focus on me -- not we -- for a bit. Having to coordinate care with studies can be a little tough sometimes. Researchers will do anything they can to make it happen, but I would be going in for my neuro check, sometimes my infusion, and then I would spend hours doing different tests on site. I needed to readjust my expectations for myself. It was so overwhelming that I was not giving the best of myself because I was giving too much of myself. You get disappointed because your expectations are so high. But you can’t do everything.
What advice would you have for others living with MS who might be considering a trial?
The first thing is to choose something that is within your reach as your first dive-in. You don’t need to choose the trial that has you travelling out of state for spinal taps or taking medication for years. Start at the beginning. Start with the registries.
After you start with the easy stuff, you need to be watching research alerts to be seeing what’s interesting to you. I get alerts from all different groups. I watch them carefully because if something is coming out as an alert of a project that just happened, there may be a follow up. Like if there was a phase 2 study, there will be a phase 3. There are thousands of opportunities, and there’s only one you, so choose what interests you.