News

FDA Approves Siponimod (Mayzent) for Multiple Sclerosis

The US Food and Drug Administration (FDA) has approved siponimod (Mayzent, Novartis) to treat adults with relapsing forms of multiple sclerosis (MS), including clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive (SP) disease, the agency announced.

Approval was based on results of the phase 3 trial, which randomly assigned 1651 patients with SPMS and an Expanded Disability Status Scale score of 3.0 to 6.5 to oral siponimod 2 mg once daily (1105 patients) or placebo (546 patients) for up to 3 years or until the occurrence of a prespecified number of confirmed disability progression events.

For most people, MS starts with a relapsing-remitting course, in which episodes of worsening function (relapses) are followed by recovery periods (remissions). These remissions may not be complete and may leave patients with some degree of residual disability. Many, but not all, patients with MS experience some degree of persistent disability that gradually worsens over time. In some patients, disability may progress independent of relapses, a process termed secondary progressive multiple sclerosis (SPMS).  In the first few years of this process, many patients continue to experience relapses, a phase of the disease described as active SPMS. Active SPMS is one of the relapsing forms of MS, and drugs approved for the treatment of relapsing forms of MS can be used to treat active SPMS. Later, many patients with SPMS stop experiencing new relapses, but disability continues to progress, a phase called non-active SPMS. To read more on this subject and review details on the trail performed, click here http://www.medscape.com And for additional information, click here https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm634469.htm

MS Focus Brighter Tomorrow Grant

Brighter Tomorrow Grant accepting applications June 1

MS Focus will be accepting applications for the Brighter Tomorrow Grant program June 1 through Sept 1. Each year, MS Focus makes dreams come true for people with MS through this program by providing goods and services – valued at up to $1000.00 per recipient – to people with MS nationwide. The goal is to improve the quality of life for people with MS by enhancing their safety, self-sufficiency, comfort, or well-being.

To qualify applications will be available by calling MS Focus at 888-673-6287 or at  http://msfocus.org 

 

MS Focus Cooling Program

Keeping your cool

Overheating may intensify MS symptoms, but cooling can offer significant relief. The MS Focus Cooling Program is now open and taking applications through June 1. Applications can be submitted online, by fax or through the mail. All applications are confidential and will be reviewed by the grant committee. For more information on the MS Focus Cooling Program, or to access these services, call 888-MSFOCUS (673-6287) or visit http://www.msfocus.org/Get Help

 

Second Annual Ken Shafer Bowl-a-Thon soon approaching!

Ken Shafer not only had MS himself, but was a true champion and advocate for those with MS.  He was an educator for 34+ years so we honor him with a yearly Bowl-a-thon to raise money for a yearly scholarship to be awarded to a local student affected by MS.

This years event will be held at the Vinton Bowling Center, 1200 Vinyard Rd in Vinton on Saturday, May 18th from noon to 4 pm.  For just $10 you get three games and shoe rental.  This is open to the public.  There will be a special appearance by Craig Evans, food and door prizes.

Come and enjoy an afternoon of fun no matter your bowling skill!

Gov. Notham signs legislation to increase access to critical health care

POSTED 4:41 PM, MARCH 16, 2019, BY , WTKR.com. NEWS3 TV

Richmond, Va.– Gov. Northam signed legislation on Wednesday that will increase the access to critical health care.

Fair Health Care VA, a coalition of patient, provider, and health care advocacy groups that help secure access to life-saving treatments for Virginians, applauded Governor Ralph Northam for signing House Bill 2126.

The bill improves an insurance requirement known as step therapy or “fail first” protocols.

Step therapy protocols, implemented by insurance companies, require a patient to try and fail on one or more older, often less expensive medications before they can receive the treatment originally prescribed by their doctor.

“I am thrilled that Governor Northam has agreed with the General Assembly that all Virginians, especially those with chronic, complex or disabling conditions, deserve a faster and more efficient process to access the care their doctor prescribes,” said Dr. Harry Gewanter, a pediatric rheumatologist in Richmond, Advocacy Chair of the Arthritis Foundation’s Virginia Chapter, and a Fair Health Care VA advocate. “This legislation will ensure that one more barrier to patient-centered, personalized treatment is eliminated in Virginia. We look forward to the effective implementation of this legislation as it will result in reduced frustration by patients, reduced administrative overhead for physicians and reduced costs for the Commonwealth.”

Last month, the bill passed the Virginia House and Senate with unanimous bipartisan support. Virginia is now the 20th state to take action to improve step therapy.

In some cases, patients who have already failed on these medications must fail a second, or even third time, before receiving the lifesaving treatment they need.

HB 2126, introduced by Delegate Glenn Davis of Virginia Beach, improves step therapy by creating an expedited, transparent, and evidence-based system when a patient’s unique situation requires a deviation from step therapy.

“I tried and failed three times on the same chemotherapy for my stage four lymphoma before I was finally able to get the life-saving cure that resulted in my first cancer-free scan in 20 years,” said Tom Ema, a patient advocate with the Coalition. “As a patient who has experienced step therapy, I know how important it is for patients to have access to the high-quality care they need, not just the treatment that happens to be cheapest. I’m thankful that step therapy reform has been signed into law and patients will now be able to access the treatment prescribed by their doctor immediately.”

 

For more detail on the specific protocols, Click here

March 13th is Roanoke Valley Gives Day!

The Multiple Sclerosis Alliance of Virginia, in partnership with the Community Foundation serving Western Virginia, is pleased to participate once again in Roanoke Valley Gives Day on 3/13/19.

A recently released study confirms that 1 million Americans have this incurable disease, easily double the long-accepted figure of 400,000.  This is no longer a rare disease.  “What this means is that we have to work harder, because there’s more of a need than we had realized,” said Nick LaRocca, vice-president of healthcare, delivery and policy research for the NMSS.  “For people living with MS, it means we have a larger constituency, and that we have clarified something important about the nature of MS as a medical condition.”

With March being MS Awareness Month, the MSAV is combining two of its major fundraising drives, our 365 Club Drive and Roanoke Valley Gives.  We gratefully request anytime between now and midnight on March 13th, anyone who wants to support someone with MS go to rvgives.givebig.org, select MSAV as the charity, mark 3/13/2019 as the processing date and use the credit card of their choice to make their donation. 

The MS Alliance of Virginia was formed four years ago precisely to deal with the day to day needs of our local MS community.  As new people are being diagnosed and those dealing with the disease every day face new challenges, this organization is here to offer education to them, their care partners, their family and friends.  We guide people through the maze of health care towards organizations that can assist with special needs, services, financial assistance, medical needs such as MRI’s or help offsetting the high cost Disease Modifying Treatments, ramps and other mobility assistive technology.  The need is great and based on the numbers we are seeing in our community, growing  rapidly.

We greatly appreciate any donation you can make to support people with MS.

New MS Treatment Guidelines

In an article published in Momentum by Aviva Patz he reveals the American Academy of Neurology (AAN) has unveiled new disease-modifying treatment guidelines for people with multiple sclerosis, the first revisions in more than 16 years.  These guidelines affect those newly diagnosed or who have been living with MS for years and cover treatment protocols for the full range of MS types.  Be sure to read more to find out what you should know about treatment recommendations, what you should do now, and conversations you may want to have with your doctor.

Lack of Diversity in Clinical Trials is a Danger to Multiple Sclerosis Patients

According to an article at Multiple Sclerosis News Today, at least one doctor at U.K. Healthcare’s Kentucky Neuroscience Institute wants more diversity in clinical trials. It’s not just about social equality – Dr. Jay Avasarala, a specialist in multiple sclerosis and neuroimmunology, knows that non-diverse clinical studies are having a real health impact on minorities.  He has seen through his practice that Multiple sclerosis presents and progresses in completely different ways in black people and white people and this is where Dr. Avasarala’s concerns arise.  Find out more.

 

NEW RESEARCH COULD STOP MULTIPLE SCLEROSIS IN ITS TRACKS

In our summer conferences for the past few years, Dr. Alban Gaultier has been telling us that the gut is the key – to eat our yogurt.  When a person has multiple sclerosis (MS), their immune system causes inflammation that affects parts of the central nervous system, including the brain. We can’t currently cure MS, just slow it down — but a specific type of cell originating from the gut could change that.  In a  paper recently published in the journal Cell, a team from the University of Toronto and the University of California San Francisco describes a discovery of cells that migrate to the brain from the intestines.  Find out more.

FDA Safety Announcements and Prescribing Information Changes

The FDA issued safety announcements for Gilenya and Lemtrada in November 2018. These announcements led to changes to the prescribing information for both drugs.

The prescribing information for Ocrevus was updated to provide more detail on the recommended timing of vaccinations prior to starting Ocrevus and the safety and effectiveness of vaccinations after Ocrevus administration.

Read the updated prescribing information for GilenyaLemtrada and Ocrevus.