I won’t let this disease stop me.
Sounds pretty simple, right? It should be. HSCT has been performed for about 20 years in one trial or another at several facilities around the world with fantastic results. Early on, if someone wanted this treatment they needed to find a trial to be part of. In recent years, those who want to stop their disease can choose to halt their MS by having HSCT at a facility outside of a clinical trial. Unfortunately for most, that comes with a high price tag, travel costs and a lengthy time away from family.
I was lucky to have my insurance cover the cost of my HSCT in Chicago at Northwestern. Dr. Burt gave me HSCT on a compassionate basis. My blessing of that insurance coverage doesn’t go unappreciated. Far too many have had to take second mortgages, crowd fund, sell retirement funds and/or use credit cards to get the necessary funds to get HSCT either in Chicago or at another facilities worldwide.
Dr. Burt just announced that he will be ceasing his program in Chicago. While this is a gut punch for those waiting to get a date for treatment, hopefully those waiting will chose to seek treatment elsewhere or travel abroad to get HSCT. Dr. Burt has committed decades of his life to helping as many patients as he could. He finished three clinical trials on HSCT, published results and treated countless patients off study on a compassionate basis. One commitment that he announced when he released his intent to close his HSCT program was that he will be focusing on educating more doctors on this treatment. This is HUGE! I am hoping that my local neurologist at the Cleveland Clinic, who seems open to HSCT, might consider promoting a HSCT treatment protocol within the Cleveland Clinic.
But until HSCT becomes mainstream, how do we solve this problem? How do we spread awareness? Different diseases have different colored ribbons. Every ribbon represents one hope: a cure. HSCT, in my opinion, is the closest thing to a cure for MS. If performed early enough, the body will stop attacking itself and the nerves may begin to heal. If a person waits too long, the nerve damage will be so far gone that the MS may be halted but reversal of symptoms may not be possible. For most, that is enough. Sometimes, status quo is better than getting worse.
When I was finishing up my HSCT back in June 2012, Jack Osbourne went public with his MS diagnosis. With a new budding immune system, my excitement to share this treatment was overwhelming. I reached out to Jack and Sharon, news outlets and the doctors highlighted on those news outlets. Every message went unanswered. It was disheartening but I held out hope that someone got through to Jack as his MS diagnosis was all over social media. It doesn’t appear that he ever underwent HSCT, but I hope a seed was planted somewhere in his network. I turned my focus to help anyone that reached out to me via mutual friends, my husband or just direct messaged for more information. One referral to Dr. Burt at a time.
Fast forward to Selma Blair. We’ve all followed her journey. She went public early on. The HSCT community all wanted to reach her. I had no idea anyone had, until she posted a photo in front of Northwestern. I was elated! Having a celebrity putting a face to MS and HSCT may change the tide for the 2.3 million people with MS worldwide.
So while we wait to see what new physicians pick up Dr. Burt’s work, let’s applaud Selma Blair for sharing her story so publicly and eloquently. Let’s stop this disease for those looking to get this treatment by helping fund raise for HSCT. It’s just that simple. Together we can make a difference, one HSCT veteran sharing their story and spreading awareness at a time. Paying it forward.
Please consider donating to AIMS, the only charity that I’m aware that is currently helping patients get HSCT with grants. These grants are raised one dollar at a time.