After being diagnosed with multiple sclerosis in 2013, Allison Carr tried the typical medications to help slow down the progression of her disease but found that none worked for her. She found a treatment at Northwestern University Hospital called Autologous Hematopoietic Stem Cell Transplant (HSCT), a treatment used for cancer and other diseases but not often for MS. HSCT for MS is only available at one hospital in the United States—and only if patients qualify. Carr is taking the risk and traveling to Chicago to receive the treatment, and her friends have launched a GoFundMe to help cover the costs at GoFundMe.com/HelpAliKickMS.
How did you come to be diagnosed with MS?
I started having some numbness and tingling in my legs, and I thought it was my lower back. Then it moved to the whole left side of my body, so I went to an orthopedic surgeon. He did an MRI and found that I have numerous lesions in my brain and spinal cord. He sent me to a neurologist, and the neurologist looked at my MRIs and said, "You have a really serious case of MS. You've probably had it for 15 to 20 years." I am 44 now. I was a stay-at-home mom for a long time, so I was always so exhausted and I just figured I was tired because of that. I was attending community college and doing great. Then, in winter quarter, I couldn't concentrate. I would watch the teacher and it was like he was speaking Chinese, I literally couldn't grasp anything. It turns out a lot of those things are MS symptoms that I never clued in to.
What is the HSCT procedure?
It's similar to a bone-marrow transplant, only they use my own stem cells instead of bone marrow. First, the doctors give me a low dose of chemo and medication to harvest my stem cells and freeze them. Then, after I recover from that, I go back to the hospital and get several doses of chemo to wipe out my immune system. As soon as they wipe out my "confused MS" immune system, they give me my stem cells back to rebuild my immune system. Even though it's my own immune system that had MS to begin with, somehow the procedure acts as a sort of "reset," and the new immune system doesn't have MS anymore for about 80 percent of MS patients.
What are the risks?
One is definitely death. But my doctor, Dr. Burt, has not had any patients die from this. That's huge. But the hospital has to tell their patients that because, obviously, any time you have chemotherapy, you have that risk. The biggest risk is infection. For about a week, I will have no immune system at all. During that time, I'll be isolated in a hospital room because even a cold could make me extremely sick. The medications have other risks, but so do all the MS medications I'd be on if I weren't doing this procedure.
Why is Northwestern the only hospital where you can get this procedure?
This procedure is like a bone-marrow transplant and is routine treatment for a handful of diseases, mostly cancers and leukemia. So, theoretically, the treatment is available right here in Utah at Huntsman. What is novel about the procedure is using it to treat MS and other autoimmune diseases. Dr. Burt at Northwestern is the only one I'm aware of who will do the procedure on MS patients outside of being enrolled in a clinical trial. There are other facilities in the U.S. that have done clinical trials with this procedure for MS. I believe there's still a trial going on in Seattle. But I think Dr. Burt has treated the most MS patients with this procedure in the U.S. [online] They also do the procedure for MS in other countries such as Canada, Sweden, Israel, Russia, Germany, Australia and Italy. But some of those countries won't do the treatment on anybody but their citizens.
Did you try or seek out other treatments before you looked into HSCT?
Absolutely. I tried three other drugs before seeking HSCT. None of them worked for me. There was only one drug left that my doctor thought might help, but I felt the drug was too risky. The medication is called Tysabri. The drug doesn't have many side effects, but there is one really serious side effect that can happen and I was high-risk for it. Two separate doctors had told me the MS could paralyze me soon, and that's why he thought the risk of Tysabri was worth it. But we disagreed. I had heard about HSCT treatment. And while HSCT had its risks too, it's a permanent solution, where Tysabri only works as long as you take it. HSCT is supposed to stop the MS and you only do the treatment once.
Why are you taking a risk with HSCT?
If I was going to take a risk, I wanted the least possible risk and the most potential benefit. In my view, that is HSCT. I heard a lot of, "Have you tried going to Mexico?" "Have you tried going in a beehive and getting stung by bees?" "Have you tried horse therapy like Ann Romney?" You'd be amazed at the number of suggestions people have for me for a cure for MS. Especially with all the multi-level marketing companies in Salt Lake, I've heard from many people saying, "Just try this pill, it will cure you" and that's just the nature of chronic diseases: When people are desperate for a cure, they'll try anything.