MS News That Caught My Eye Last Week: Stem Cell Trial, Young PWMS and DMTs, Exoskeleton, Tests for Kids
Stem Cell Transplant Trial Enrolls First Patient in Minnesota
It looks as if we’re moving closer to the day when stem cell transplants become an approved MS treatment in the U.S., at least I hope so.
A trial is enrolling subjects to test the stem cells against several high efficacy DMTs: Tysabri (natalizumab); alemtuzumab (sold as Campath and Lemtrada); Ocrevus (ocrelizumab); Mavenclad (cladribine); Kesimpta (ofatumumab); and rituximab (an experimental therapy used off-label in MS). Up to 156 patients will be enrolled and then followed for six years.
A clinical trial investigating patient-derived stem cell transplants for the treatment of people with severe relapsing forms of multiple sclerosis (MS) has enrolled a patient in Minnesota.
The patient was enrolled at the University of Minnesota Medical School, one of two trial sites in the state. An additional 18 sites in the U.S. and one in the U.K. also are, or soon will be, recruiting participants for the BEAT-MS Phase 3 trial (NCT04047628). More information is available here.
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DMTs Underutilized in Younger Patients, Study Indicates
Everything I’ve read about MS indicates the earlier that treatment is started, the more effective it is at slowing or stopping disease progression. So, I have to wonder why DMTs are underutilized in younger people with MS. Unfortunately, this study only gives us half a loaf; it doesn’t look at what the reason for this might be.
Nearly a third of people with multiple sclerosis (MS) who are younger than 40 are not being treated with disease-modifying treatments (DMTs), even though younger individuals are expected to get the most benefit from DMTs, according to a new study.
“DMTs for MS are more frequently used at younger ages when there is likely higher disease activity, yet a substantial proportion of younger PwMS [people with MS] remains untreated,” researchers wrote.
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Robotic Exoskeleton Intervention Improves Motor, Cognitive Function
It’s well known that exercise helps both body and mind of people with MS. But patients with severe walking problems are often unable to participate in the kind of intensive exercise needed to get good results. It’s great that an exoskeleton can help obtain this. My question, however, is where can someone be treated with this robotic tool and, if you can find it, will insurance cover it?
Four weeks of robotic exoskeleton-assisted exercise rehabilitation, called REAER, worked better than conventional gait training in improving mobility and cognitive function in multiple sclerosis (MS) patients with substantial walking difficulties, according to a small trial.
A robotic exoskeleton consists of an externally worn device that encases a user’s hips, back, and legs during rehab, providing greater physical performance.
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Meaningful Cognitive Gains in Pediatric MS Captured Using Pencil-Paper Test
You may have seen this paper-and-pencil test. It requires someone to substitute numbers for symbols and, recently, it’s been available in some MS apps as well as in healthcare offices. It’s useful for assessing adults as well as children with MS.
A computer-based training program that exercises distinct components of attention and working memory can improve cognition in young people with pediatric-onset multiple sclerosis (POMS), a new study indicates.
Findings also support a common pencil-and-paper measure of cognition, called the Symbol Digit Modalities Test (SDMT), in detecting clinically meaningful changes in thinking abilities and concentration among these children.
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Comments
Antoinette (Toni ) Brennan
I had a myelo HSCT for my MS almost 7 years ago. It was very successful transplant! The US is way behind on this important treatment for MS. I received my treatment at Heidelberg, Germany. Outstanding treatment by exceptional doctors!
Ed Tobias
Hi Toni,
How fortunate you are to have been able to receive HSCT to treat your MS. I hope you continue to do well with it.
Ed
Jody Massimino
I first would like to say “Kudos” to you for the hard work and dedication you have invested in learning about MS. I was diagnosed at 39 and will be 64 Thursday. It’s a very humbling disease for sure. I am interested in any/all trials should you need an older person.
Thank you your story uplifted me.
God bless and keep you strong,
Jody Massimino
Ed Tobias
Hi Jody,
Thanks for your comments. I don't select people for trials, nor do the writers whose articles are published on this website. However, if you continue to visit MS News Today you'll often see articles about new trials. The website of the National MS Society also keeps track of them.
Good luck,
Ed
Rose Marie Kamenitz
Not sure what u r saying about experimental BMT. I had mine in 2002, 19&1/2 years ago. I had to live in Chicago for 3 months. It was autologous & I had to donate my own cells to be washed of the MS “ markers” adhereing to my cells . I am an RNC who went through so much to try to regain my life. Diagnosed in 1989 @ 39 years old. They also did hi dose chemo & TBI. Shielded all important body parts, thyroid, kidneys, lungs, & genitalia. I was #24 in this trial for R/R even though I have SPMS. He wanted to see if it would help me in anyway possible. It DID help delay progression a little bit, meaning I only have my right side affected. Nothing on the left!! But just wanted to let you know these autologous BMT cells have been around a long long time. Still not sure what u mean by “new” treatments when indeed it has been around for years. This is NOT true! I am living proff!! Hoping u can recant this erroneous statement. Now they are even covered, BY insurance , back then they were inconceivable . Anyhow hope
Ed Tobias
Hi Rose Marie,
Were you in Dr. Burt's trial. If so, that was a small trial at one clinical center. The trial reported in this article will enroll more than 100 people at multiple locations.
aHSCT is certainly not new, and the article doesn't refer to it that way. But, the FDA has not yet approved aHSCT as a treatment for MS. So, the treatment is still considered to be experimental in the US for people with MS. I don't know of any insurance company that will cover it, so I'd appreciate an example that I can share with others.
I hope you do well with your aHSCT treatment.
Ed
barbara dascalos
Not true...google "does hsct for ms need fda approval"
fda licenses food and drugs not medical surgery/procedures...major mistake to tell people.
Ed Tobias
You're correct, Barbara. The medications used for an HSCT treatment have been approved by the FDA. I should not have said that in an answer to an earlier comment and I appreciate your pointing out my error.
However, HSCT has not yet gained the formal support of the medical medical community as an MS treatmeht. As far as I can determine, it's also not being approved by the medical insurance industry. Until someone can show me examples of insurance companies paying for HSCT I'll stand by what I wrote in my column that we may be getting closer to approval. I don't believe we're there yet.
Ed
Anthony Hoysted
No doubt the robotic exo-skeleton can assist people with MS who have difficulty walking to improve their gait. However, at present, it does seem somewhat hi-tech and expensive, and out of the reach of most people. However, exercising (including working on gait) supported by water in a swimming pool or hydrotherapy pool is within the reach of many, and may be a reasonable alternative.
Ed Tobias
Hi Anthony,
I agree and I do a lot of exercising in the pool, walking and swimming. I also did some horseback riding as therapy.
Ed
Jenny Mister
This reply is for ANTHONY HOYSTED, I included that because I’m not sure where this will end up. You should look into rehab centers that have Lokomats. When I just looked them up they have become quite complicated machines. When I used it a simple robotic part that attached to one leg and helped guide your leg while walking on a treadmill. It was all one device and incredibly effective at training your affected leg to walk properly.
pina
Hola, leo los comentarios y siento ilusión de que pueda recibir un tratamiento con células madre. Tuve un diagnóstico en año 1998, solamente hormigueos en pie derecho. Sin tratamiento durante los primeros cinco años, que comienzo con Interferón beta 1a Avonex.
Recibo el tratamiento durante cinco años seguidos y mi vida era tan normal como una persona absolutamente sana.
Un médico neurólogo, no creía en los Interferones y me niega continuar el mismo.
Sin tratamiento a los tres años se instala lentamente mi EM comenzando a progresar con espasticidad en miembros inferiores.
Ahora hace nueve años que no recibo nada de nada, y tengo la esperanza de poder alcanzar un medicamento que remielinice mis lesiones medulares y tratar de mejorar mi calidad de vida.
¿Podría ser posible que me tengan en cuenta en un ensayo?
Vivo en Uruguay pero podría eventualmente, viajar.
Saludos!
Ed Tobias
Translation by Google Translate:
Hello, I read the comments and I am excited that I can receive a stem cell treatment. I had a diagnosis in 1998, only tingling in the right foot. No treatment for the first five years, which I start with Avonex Interferon beta 1a.
I receive the treatment for five years in a row and my life was as normal as an absolutely healthy person.
A neurologist, did not believe in Interferons and denies me to continue the same.
Without treatment at three years my MS slowly settles, beginning to progress with spasticity in the lower limbs.
Now it has been nine years since I have received anything at all, and I am hopeful that I will be able to reach a medicine that remyelinates my spinal cord injuries and tries to improve my quality of life.
Could it be possible that they take me into account in an essay?
I live in Uruguay but could eventually travel.
Greetings!
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Hello Pina,
I'm sorry that you've had a difficult time receiving treatment. There are clinics in Mexico and Russia where stem cell transplants are performed, but they are expensive. However, it's much easier to get one in those countries than it is in the US.
Good luck,
Ed