MS News That Caught My Eye Last Week: Mavenclad, Sativex, Mistreatment, Patient Survey

Trial Will Test Mavenclad for Advanced Progressive MS

I often think that researchers have forgotten about people whose MS has progressed to an advanced stage. But MS patients who have moved into a wheelchair deserve treatment with a disease-modifying therapy as much as those who are just beginning their MS journey. So, bravo to these scientists for their efforts. It’s a shame that this trial is limited to the U.K., but at least it’s something.

After some delays due to the COVID-19 pandemic, the Phase 2/3 clinical trial evaluating whether Mavenclad (cladribine) can slow the worsening of hand and arm function in adults with progressive multiple sclerosis (MS) and very limited walking abilities, has recruited its first patient.

The study, ChariotMS (NCT04695080), aims to enroll up to 200 patients with advanced progressive MS — a population typically excluded from clinical trials — at 20 sites across the U.K. More information about contacts and locations is available here.

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August 13, 2021 News by Marisa Wexler, MS

Heat, Variable Temperatures Found to Increase Risk of MS Hospital Visits

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Third Phase 3 Trial of Sativex, Cannabis Extract for MS Spasticity, Planned

I’ve seen a lot of interest among the patient community in the Sativex spray, and I recently wrote a column about it. Jazz Pharmaceuticals already has various studies underway, including a small study in Brussels, which reported encouraging results. Sativex already is available in 25 countries, including most of Europe and Canada, but not in the U.S. Let’s hope all of this research leads to an approval here soon.

Jazz Pharmaceuticals is planning to open a third Phase 3 clinical trial of Sativex (nabiximols), an oral spray that contains cannabis extracts, as an add-on treatment for people with multiple sclerosis (MS) and spasticity, the company announced.

Set to start this year, the RELEASE MSS5 trial (NCT04984278) is expected to enroll about 190 adults with any type of MS and spasticity (muscle stiffness and spasms). While study sites are yet to be announced, contact information is available here.

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Many MS Patients Report Mistreatment by Caregivers

Back in February, I wrote about a study reporting that people with MS were mistreated by family or friends who care for them. This study, also conducted by a branch of the University of California, has reached similar findings. The most common type of abuse was psychological, followed by patient neglect. To a lesser extent were reports of financial, physical, and sexual abuse.

More than half of people with multiple sclerosis (MS) who require an informal caregiver have experienced abuse or mistreatment by that caregiver, according to a study conducted in California.

The study, “Validity and Reliability of the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS) in Assessing Abuse and Neglect of Adults with Multiple Sclerosis,” was published in the International Journal of MS Care.

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US Survey Finds High Rates of Dissatisfaction With Quality of Life, But Satisfaction With Healthcare

I’m surprised that only 40% of people with MS are dissatisfied to some extent with the quality of their lives, according to this survey. I thought this number would be much higher. I’ve lived with MS for over 40 years, and although I think I’ve had a really good life, I’m certainly dissatisfied with some aspects of it.

I’m also surprised that more than 70% of people with MS report being satisfied with their health insurance and treatment plans. That’s not what I read on the MS social media sites I follow. I think there’s a lot more dissatisfaction with a lack of insurance coverage, particularly for medications, and with a lack of MS knowledge and patient skills by many neurologists. What do you think?

More than one-third of people with multiple sclerosis (MS) who responded to an online U.S.-based survey are dissatisfied with their quality of life, and more than one in four MS patients are pessimistic about their future, according to the results of the survey, conducted by Multiple Sclerosis News Today.

Nonetheless, the findings show that about three-quarters of the MS patients surveyed are satisfied with their treatment plan as well as with their health insurance, and four out of five are not considering changing their medication.

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