We’re thrilled to announce that today, we’ve launched our new MS search with our partner, the MS Association of America. Now, MS patients and their care partners can visit http://mymsaa.org/ms-information/clinical-trials-search/ to be matched to a clinical trial in seconds. Why is this important? To answer this question, we asked Jeri Burtchell, Director of Patient Initiatives at HealthiVibe, LLC, MS advocate, and clinical trials activist, to tell us her story:
Tell me a little bit about yourself and how you became a patient advocate.
In 1999 I was diagnosed with MS after a series of odd symptoms led me to see a doctor. I was numb from the waist down and barely able to walk at all. I live in a small town so I was referred to the only neurologist available. He ran a full battery of tests from MRIs to nerve conduction studies, and he diagnosed me very quickly. He seemed very competent, so when he recommended one of the four drugs for MS available at that time, we didn’t really discuss my options. “All the others have too many side effects,” he said.
After 8 years on this medicine, however, I was still relapsing every 3 or 4 months. Every time I asked my doctor about switching to a different drug he’d say “Trust me, it’s working. Without it you’d be so much worse.” I was miserable, barely able to walk, in pain, depressed, and contemplating suicide. I knew that MS was a chronic, progressive and degenerative disease, so if it was only going to get worse, what did I have to look forward to?
I never thought to get a second opinion or exploring my options, until one day my doctor had a stroke. I had to find someone else. My new doctor was over an hour away, at a teaching hospital where he was the investigator for a clinical trial for a new MS medicine. He thought I’d make a great candidate and after we talked about participating in a study, he gave me the Informed Consent document to take home and discuss with friends and relatives.
The Informed Consent describes the study in detail and all of the tests and procedures the participants will undergo. After outlining all of the risks and benefits, you are given the option to join. You’re encouraged to talk about it with family and friends to get feedback before you sign on.
Anyone who knows me, knows what a chicken I am (or at least was at that time). I was reluctant to take any medicine and would rather suffer a headache than risk taking an aspirin because I was sure I’d probably bleed to death.
But I felt like I’d hit rock bottom. I was already considering suicide, what more did I have to lose? I felt desperate and signed up. Being the hypochondriac that I am, however, I was driven to look for any information I could about what it was like to be in a clinical trial from the patient perspective. I searched the internet, but found nothing.
It was then that I decided if I couldn’t find it on the internet, then I was going to put it on the internet. I would go on to write what is now considered to be the first-ever patient blog of a clinical trial from start to finish, and that is what really sparked my patient activism.
The study was for the first ever pill form of treatment for MS, and everyone was weary of needles by that time. Some patients talked of “drug holidays” and others decided to forego treatment solely based on their fear of needles, so everyone was interested in how soon a pill would be available. My blog gained many followers and it was in comments section of each post where the conversations blossomed. Everyone wanted to know what it was like to be in the study. Many people told me that my blog and the positive experience I had in the clinical trial gave them the courage to join the study, too.
Can you talk about how you went from patient to patient advocate?
Becoming a patient advocate was never a conscious goal. It evolved over time as one opportunity led to another as if some unseen force was propelling me along the path. With each new possibility, I had to overcome fears and step outside my comfort zone.
After the study was complete, I became a patient speaker on behalf of the medicine. For that, I was forced to overcome both my fear of flying and my fear of public speaking.
But once I did, I discovered that I love public speaking. I loved sharing my positive message of what a dramatic change the clinical trial has made in MS. I went from relapsing every 3 months like clockwork to not having another relapse for over 6 years. Research gave me my life back. I was driven to share my message that research can be a treatment option.
In 2012 I was contacted by a pharmaceutical executive who had discovered my blog. He invited me to share my story at an industry conference in Boston. The audience was entirely made up of people who work in clinical trials, and although many of them had devoted their careers to research, not one of them had ever spoken to a clinical trial participant before. I was astounded.
That insight, coupled with learning that so many trials fall short of their enrollment goals and are either delayed or stopped altogether, made a huge impression on me. I felt compelled to help however I could. I launched Partners in Research, Inc. in 2012 to help raise awareness of the need for volunteers.
How and why did you become involved in a clinical trial? And how was that trial for you?
As I mentioned earlier, my diagnosing doctor I had been with for eight years had a stroke. I had to find someone new. When my new neurologist raised the idea of a clinical trial I was open to any option that might help wrangle this awful disease. Not eager to try the interferons, I thought this study seemed like a more attractive option.
At first I was obsessing about every test I would have. Fear of the unknown can be a powerful thing. So I blogged my fears and followed that with a post about what really happened, including photos of all the equipment. None of the tests were as scary as I imagined, and as time went by I noticed a dramatic difference in my disease. It took me a long time to relax and not always be cringing, waiting for the next big relapse to hit me. Even when I finally did have a relapse six years after starting the study, it was so mild I had to have my doctor verify it was a true relapse.
I found that, after a while, I was no longer obsessing about my disease. Dwelling on my symptoms didn’t occupy every waking minute. I gradually turned my focus outward, and began enjoying life again. I was raising a small child at the time –he was born six months before I was diagnosed—so the clinical trial and the benefits I got from the medicine were allowing me to spend quality time with him.
Just before I started the study I was coming out of a huge relapse that had left me using a wheelchair for a month or two due to weakness in my legs. By the time the study started I was back to using a cane. Sometime after the 6-month mark, I realized one day that I didn’t know where my cane was. I had stopped using it. That was the moment I realized how far I had come on this medicine. I broke down and sobbed. I was so grateful for the second chance.
We know that 80% of clinical trials are delayed or closed because they can’t find enough patients to take part. Why do you think more people don’t participate in clinical trials? And how do you think that can be addressed?
There are many reasons studies fail to enroll patients, but I think the number one reason is lack of knowledge. If patients don’t know the studies are out there, they aren’t going to join. The average patient doesn’t know about clinical trials and I think doctors are dropping the ball as they are the most natural conduit between patients and research.
But for whatever reason doctors aren’t talking to their patients about it. Whether trying to protect patients from a drug, procedure, or device that has yet to be proven, or they just aren’t aware of the options themselves, the conversations aren’t happening.
They say that knowledge is power and patients have a right to know their options – all of their options. Not every patient will want to join a study, but I believe they should have easy access to information about clinical trials. In my case, it was totally by chance that I had to find a new doctor and he brought up the idea of research. Instead of waiting and hoping that more doctors will initiate the conversations, we need more resources that patients living with MS will naturally find. Some of the best and most trusted patient resources on the internet are those found on advocacy group websites like MSAA. So the partnership between Antidote and MSAA makes perfect sense and I’m excited for the future of MS research because of it.
You’ve talked in the past about ways that the pharmaceutical industry can make clinical trials more patient-centric by doing some fairly basic things – grouping tests so participants don’t need to take multiple days off of work, providing transportation, providing the drug after the trial if it’s approved, etc. How far has the industry come towards designing truly patient-centric trials?
At the time I wrote that, the industry was just beginning to explore how they might be more “patient-centric”. Back then it was merely a catchphrase with everyone pondering how to engage patients in a way that resulted in actionable change.
During that very first pharmaceutical conference in 2012, I met Abbe Steel, who had spent 23 years in the Life Science industry. Over dinner we discovered our mutual passion for wanting to make a difference in how studies are conducted, to include patients in the design of clinical trials. We stayed in touch and two years later she launched HealthiVibe, LLC and brought me on board. Now we’re entering our third year as leaders in patient-centered collaboration.
The premise behind the company is that the patient voice should play a more influential role in the entire lifecycle of drug development – from protocol design all the way through to drug approval and support programs. We use a systematic, evidence-based approach to help the pharma industry gain insights directly from patients around living with the diseases they are studying in order to influence every part of the drug development process.
The most exciting part of all the work we do has to be regarding our clinical trial participant experience survey platform, HealthiPerspectives. We work with our clients to collect feedback from patients who are in ongoing studies to uncover the hurdles they are facing regarding everything from travel to and from the study site to reimbursement for out of pocket expenses and how well the site communicates with them. This feedback, from patients who are actually participating in the study, has led to real-time protocol adjustments to improve the study participant experience.
This is exciting on so many levels. While I was in my study, I was proud to be a part of it, never missing an appointment, always willing to give blood and urine, fill out surveys and undergo tests, but I never felt like the quality of my experience in the study was that important.
So, years later when we launched our HealthiPerspectives participant survey I felt like we had empowered trial patients to play an instrumental role in shaping that patient experience and hopefully make future studies more patient-friendly.
What’s the biggest clinical trial myth you’ve seen? Do you think anyone out there is doing an especially good job dispelling these types of myths?
There are so many myths it’s hard to know which one to pick! I think the two most damaging myths would be that clinical trials are dangerous, and that once you sign the contract to join (the Informed Consent), you can’t get out.
A contract is a contract, right? All you have to do is watch one of the judge shows on daytime TV to see that every time someone produces a signed contract, the other party to the lawsuit loses. It’s hard to escape the mindset that when you add your signature on the dotted line, there’s no going back. But the truth is patients have total control. Their participation is the biggest gift to science that anyone could give, and you can leave a study at any time for any reason – or for no reason at all. Nobody is ever committed to completing a study they no longer want to be part of.
As far as danger goes, while it’s true that clinical trials are important to learn how effective or safe a drug, device, or procedure is, researchers are very cautious and attuned to how participants are responding. I received the best healthcare I’ve ever had when I was in a clinical trial. You have access to cutting-edge medicine with the top specialists who are giving you their focused and undivided attention.
Within the MS community I see patients becoming more interested and open to the idea of participation, and overcoming this idea that studies are inherently dangerous. I think organizations like MSAA have done a lot to support science, educate patients, and encourage participation, and in doing so, they help dispel these myths.
We see lots of people turning to social media for health information these days. What are your thoughts on that? Where do you get most of your medical information?
Seeking health information through social media is a double-edge sword. While we value the opinions of fellow patients—because only someone living with MS truly “gets it”—that doesn’t mean they are medical experts. You have to always consider the source. Other patients in our community can provide feedback on their experience with medicine, tips on how to deal with symptoms like fatigue or spasticity, and even be a source of leads for finding great neurologists or MS centers. But when it comes to diagnosing or making a prognosis, leave that to the experts.
The internet is an empowering tool and so convenient for many of us who are stuck at home or live in rural communities and don’t have ready access to expert medical advice. But it can be hard to navigate if you don’t know how to tell a reputable source of information from an unscrupulous one.
For that reason, I tend to stick to trusted sites for medical information. Sites that are hosted by advocacy groups, healthcare organizations, or academic institutes are a great place to start. I always look for cited sources at the end of an article to see where an author got their information. I steer clear of sites that make claims that are too good to be true. If there was a cure for MS it would be on the news – and maybe with more research, one day that will happen – but it won’t be on some shady website asking you to open your wallet.
What excites you most about MS research today? What would you say to those in the MS community who want to know more about participating in trials?
There is so much going on in MS research today. From patient driven research initiatives like iConquerMS to studies examining the role of our gut bacteria in the development and progression of MS, it’s an exciting time. I remember when patients longed for the day a pill was available. It seemed like an impossible wish to fulfill, and if nobody had volunteered for the clinical trials, it would have been.
For people who want to learn more about participating in studies, start by talking to your doctor. If they aren’t going to bring up the subject, it’s up to patients to start that conversation. Use Antidote’s new tool on the MSAA site to learn about your options together with your doctor. Take your phone or iPad with you and bring the site up right in the exam room. Who knows? Maybe together you’ll find a study that is a life-changing for you as mine was for me.
And keep in mind that the amazing advancements we are seeing in science today are only made possible by patients who participate in clinical trials. It takes everyone working together to make progress against this disease. So don’t just wait for a cure – volunteer!