Vicki Kowal, a Nationally Certified Counselor and a Licensed Mental Health Counselor in the State of New Mexico, gave a detailed overview and detailed overview on the September MS/Cancer conference call of how multiple sclerosis(MS) treatments have advanced in the last 11 years.
Her career at the National MS Society began in 2007 as an Information Resource Center (IRC) Specialist, which is known now as a MS Navigator. She is currently a Healthcare Provider Engagement Manager for New Mexico, West Texas, and Southwestern Colorado. Previously, Kowal worked 11 years at the MS Society and is proud of the organizations’ life-changing services for people with MS and their loved ones: MS Research, MS Navigator, MS Support Programs, MS Healthcare, and MS Activism.
Margaret Barney, MS/Cancer Support Group Leader and Executive Director of the MSplus Foundation, said, “One of the most significant topics of Kowal’s talk was that the definition for MS has changed. I found this fascinating, as I was unaware of the new focus.”
Kowal said the previous definition was that MS is an autoimmune disease where the body attacks the central nervous system. The new definition is that multiple sclerosis involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. The exact antigen or target that the immune cells are sensitized to attack remains unknown. Consequently, many experts consider MS to be immune-mediated rather than autoimmune.
Kowal covered several other aspects of MS treatment.
Advancements in the treatment and support of patients with MS
The National MS Society continues to be the largest private funder of MS research in the world, investing more than $1 billion since 1946. Focus is now on progressive MS. Link to MS Research: https://www.nationalmssociety.org/Research/Research-News-Progress/Research-News
The Progressive MS Alliance
The Progressive MS Alliance is a growing global initiative to end progressive MS. The Alliance began by bringing together the world’s leading experts in multiple sclerosis. Their goal is to identify the critical knowledge and treatment gaps where progress must be made to achieve breakthroughs necessary to change the world for people with progressive MS.
With leadership from the National MS Society, the Alliance is transforming the MS landscape in an unprecedented global collaboration of MS organizations, researchers, clinicians, pharmaceutical companies, and people living with progressive MS. The Alliance continues to raise the profile and underline the unmet need of progressive MS, rallying the global community to come together and find solutions.
Disease Modifying Treatments
Kowal reported that the number and type of disease modifying treatments (DMTs) have more than doubled.
In 2007 treatment options were:
· Avonex, Betaseron, Copaxone, and Rebif were the only treatments available in 2007.
· Tysabri was coming back to the market.
In 2018 treatment options include:
· Patients have available 14 disease modifying treatments; three are oral medications, and one, Lemtrada, is a long-lasting infusion.
· Ocrevus is the newest treatment and is the first medication designed for progressive MS. Treatment includes infusions every six months.
· Gilenya was FDA approved for pediatric MS. Many of the disease modifying therapies that are FDA approved for adults are prescribed off-label for pediatric MS patients.
In 2007, the criteria for diagnosing MS in 2007 was that four active lesions were needed on an MRI to lead to a diagnosis (DX). The criteria for diagnosing MS in 2017 was that only two lesions can lead to a diagnosis and patients with clinically isolated syndrome can be put on medications immediately.
MS Navigators for People Living with MS and Their Loved Ones
Kowal said, “In the past, the quality of services received depended on location. We now provide more consistent, unified support to individuals across all 50 states to people living with MS and their care-partners who are seeking information, referrals, and navigation of community resources.”
The top five requests for information are:
· Benefits, insurance, and employment
· Social and emotional support
· Neurologist referrals
· Home care
“We can provide much more than information and referral. We can follow up and ensure the resources worked. We can contact providers and resources if needed. In our system, the same MS Navigator helps the patient with inquiries all the way through,” Kowal said. The National MS society defines MS Navigators as highly skilled, compassionate professionals who connect patients to the information, resources, andsupport needed. These supportive partners help navigate the challenges of MS unique to each patient’s situation.
Individuals facing complex challenges are screened for in-home case management through the Edward M. Dowd Personal Advocate Program. Common case management issues include: multiple urgent needs, inability of family to provide care, isolation or other health and safety risks, inadequate housing, significant changes in mental or physical health.
Individuals can contact an MS Navigator in several ways:
· Email: ContactUsNMSS@nmss.org
· Call: 1-800-344-4867
· Webchat: Monday – Friday 7a.m. – 5 p.m. MST, via www.nationalMSsociety.org. Link to MS Navigator information: NMSS Resources Support
MS Support Programs, including peer support, wellness, exercise, and nutrition
The National MS Society continues to offer in-person support groups, online support groups, a peer support line, monthly webinars, and in-person education programs that result in positive changes, including diet, exercise, symptom management, coping skills, mental health, and increased social support. Support is for people living with MS and their loved ones (care partners). The link is https://www.nationalmssociety.org/Resources-Support/Find-Support.
Kowal said, “Now we are using money to research quality of life and wellness such as MS diet and exercise.
Another step was the development of a Wellness Guide, which can be accessed via link: NMSS Wellness Discussion Guide for People with MS
Research has a new emphasis on wellness, such as weight, exercise, nutrition, dental health, smoking cessation. Examples include the following:
· Smoking increases the chances of getting MS.
· Smoking makes DMTs less effective or ineffective.
· Smoking increases cognitive problems in MS.
Kowal stated, “We now have dedicated Healthcare Provider Engagement staff to grow the MS workforce. The Society offers resources and professional education for healthcare students and providers, including neurology, pediatrics, nursing, mental health, long-term care, primary care, social work, rehabilitation, and the VA to ensure people with MS receive comprehensive MS care. We have 334 partners in MS Care in the U.S. and thousands of healthcare providers and students who are connected to NMSS.”
The 100,000 volunteer MS activists nationally and locally influence change related to research, healthcare, and more. Here is link to our Current Advocacy Issueshttps://www.nationalmssociety.org/Get-Involved/Advocate-for-Change/Current-Advocacy-Issues
· More medications will be available such as Ocrevus (Ocrelizumab) for PPMS and RRMS impact
· Breakthrough MS campaign goal to raise $1 billion dollars in five years
· Consistent resources will be available online via our website, which will help people access info anytime from anywhere.
MS is an isolating disease and can be more isolating due to advanced symptoms, lack of MS specialists, lack of connection to other people who have MS, and culture. Therefore, we have dedicated staff who focus on special populations and healthcare providers who serve special populations, such as the following:
What Needs to be Done
· Affordable healthcare
· Increase access to specialists
· Increase MS workforce
· Advocacy to reduce price of medications
· Advocacy to invest in research
MS/Cancer member questions:
On the MS/Cancer call, Kowal answered questions from participants about MS treatment.
What is the percentage of pediatric patients with MS.
Kowal cited theNational MS Society Pediatric MS: “Estimates suggest that 8,000-10,000 children (up to 18 years old) in the United States have MS, and another 10,000-15,000 have experienced at least one symptom suggestive of MS. Studies suggest that two to five percent of all people with MS have a history of symptom onset before age 18.”
Is there research about MS and probiotics?
Kowal cited this study: Mouse-Study-Traces-Links-Between-Diet, Gut-Bacteria. “They have plans for continuing this line of research to identify therapies or probiotics that can reduce inflammation to turn off or decrease disease activity.”
What is latest research on MS diet?
Kowal referenced the MS Research News, Diet, which can be found at https://www.nationalmssociety.org/Research/Research-News-Progress/Diet.
What about gluten free diet (GFD)?
Kowal cited Diet-and-Multiple-Sclerosis-Bhargava-06-26-15.pdf, which reported:
“There is no evidence for a role of GFD in patients with MS. Multiple studies suggest that people with MS have the same prevalence of anti-gliadin and anti-TTG antibodies (antibodies elevated in Celiac disease) as healthy controls. GFD is a treatment for celiac disease and dermatitis herpetiformis (a chronic, itchy, bumpy and red rash). It has also been evaluated in other autoimmune conditions such as rheumatoid arthritis with no definite role for GFD noted in these disorders.”