A recent post on the MS-Selfie blog asks and answers this question: What is the “greatest unmet need” concerning multiple sclerosis?
Professor Gavin Giovannoni, the London-based neurologist who writes that blog, lists five unmet needs, many of which I agree with. But those needs are from the viewpoint of someone who treats MS. Here are some thoughts from someone who has lived with MS for nearly 43 years.
These are my hopes for the MS future.
No. 1: Prevent MS
This priority is the same as Prof. G’s top unmet need. If I look at things from a global perspective, with the needs of many trumping my own, there’s no contest. The MS community needs to be more proactive about prevention.
More than 20 disease-modifying therapies are available to slow or stop MS relapses or progression, but there’s nothing available to vaccinate against the illness. The closest thing to an MS vaccine is research to find a vaccine to prevent the Epstein-Barr virus (EBV), which is thought to be a strong risk factor for developing MS.
About a year ago, the U.S. National Institutes of Health (NIH) launched a Phase 1 study to develop an EBV vaccine, giving all such research a big-time push. Moderna, the pharmaceutical company that developed a COVID-19 vaccine at lightning speed, is also sponsoring a clinical trial, using the same mRNA technology as the company’s COVID-19 vaccine.
Others also have research underway. It probably won’t help me, but this research could help millions of others who might, one day, be protected against both EBV and MS.
Do you agree that prevention should be MS hope No. 1?
No. 2: Mend my myelin
To me, myelin means motion. Repair the MS-damaged myelin that coats my nerves, and those nerves might regain their ability to carry the impulses that MS disrupts. That could result in an improvement in my MS symptoms, I hope.
Researchers are studying several experimental remyelination treatments, including CNM-Au8, PIPE-307, and XPro1595. I hope at least one of those studies will lead to an approved therapy.
Am I hoping for the impossible?
No. 3: Approve stem cell transplants
What’s the deal with this? Stem cell transplants to treat MS have been available in Mexico, Russia, the U.K., and elsewhere for years. But they either cost thousands of dollars — not covered by most insurance — or they’re severely limited by government health policies. For people with MS in the U.S., there are only clinical trials.
Late last month, MS News Today published a story about 22 patients who received an autologous hematopoietic stem cell transplant (aHSCT) at a center in Mexico. After two years, all 22 met NEDA3 (no evidence of disease activity 3) criteria. After seven years, 16 of them were still at NEDA3.
The U.S. National Multiple Sclerosis Society believes that “aHSCT is a good treatment option for some people,” particularly those with very aggressive relapsing-remitting MS for whom DMTs have failed.
Six years ago, I wrote that “scientists have been studying stem cell treatments for years and it sure seems as if we’re still crawling when we should be cruising.” The MS community has picked up a little speed, but I don’t think it’s moving fast enough.
Do you?
No. 4: Improve everyone’s MS knowledge
Most people just don’t get it. Most friends, family, co-workers, too many neurologists, and even some people with MS don’t really understand MS. As someone who has lived with it since 1980, has written this column for almost seven years, and has published a book about it, I’m aghast at the lack of MS knowledge I see every day.
We need to have better outreach for education, including in medical schools, about the impact MS has on people’s lives and how people with MS can be helped to deal their disability. I’m trying to do my small part, but as my late father-in-law — an avid sailor — used to say, it’s like shoveling s*** against the tide.
Anybody have any suggestions?
No. 5: Hit it hard, hit it fast
When I was diagnosed, there were no DMTs. How I wish there had been. I jumped at the chance to participate in a Phase 3 clinical trial of Avonex (interferon beta-1a), but by that time, I’d already been living with MS for 15 years.
Many neurologists use the phrase “time is brain” to support their belief that highly effective treatments should be used as early as possible to try to stop MS progression. I agree with them. I wonder what my life would be like if any DMTs, particularly the high-powered ones, had been available 42 years ago.
Now, I’m close to my 75th birthday. Will any of my five hopes for the MS future appear in my lifetime?
I’ll settle for just one.
(A version of this post first appeared as my column on the MS News Today website.)
