Skip to navigation Skip to content

Breakthrough MS Quarterly Update

Winter 2017-18

Share

In this article

California MS Activists Lead the Way in Lowering MS Medication Costs

SB17 Press Conference
SB17 Press Conference

Thanks in large part to the tireless efforts of the National MS Society, California has passed a groundbreaking prescription drug pricing transparency bill, a breakthrough in the Society’s effort to increase the accessibility of MS disease-modifying therapies.

The bill, requires health plans and insurers to publicly disclose information about the costliest drugs as well as those with the highest price increases. It also promotes transparency in pricing by requiring pharmaceutical companies to give notice to the public before raising prices. 

MS activists in California joined with coalition partners to support this bill with strategies including press events and legislative visits. MS activist Victoria Steussel shared her personal journey with MS and the impact this bill would have on her life at a press conference in Sacramento (pictured). MS activist and local Society Trustee Heather Fargo shared her story through a letter to the editor of the Sacramento Bee and was present when  Governor Brown signed the bill in October of this year.

In 2004, the annual average wholesale price for MS medications was $16,000; in 2017 it was more than $83,500
-- an increase of over 400 percent.

“People with chronic illnesses need to have confidence that they’ll be able to get the life-changing medication they need.”
- Cyndi Zagieboylo, President and CEO, National MS Society.

People with MS report high and rapidly escalating medication prices, increasing out-of-pocket costs, confusing and inconsistent formularies, and complex approval processes that stand in the way of getting the treatments they need.  These challenges can cause delays in starting or changing medications, which may result in new MS activity and cause even more stress and anxiety for people already living with the challenges and unpredictability of MS.

The Society has called on leadership from all parties involved — pharmaceutical companies, insurance providers, pharmacy benefit managers, specialty pharmacies, healthcare providers, policy makers, people with MS and others — to work together to focus on getting people with MS the medications they need to live their best lives. 

Medications can only change lives if people can access them. Medications — and the process for getting them — must be affordable, simple and transparent.  By influencing government and societal changes, we remove barriers, create resources, and pave the way for breakthroughs that will change the world for people with MS. With your critical support, we leverage the voices of people affected by MS: inspiring and empowering them to realize they have the power to make change happen.

Visit nationalMSsociety.org/makemedsaccessible to learn more.

Celebrating What We’ve Accomplished Together

The end of the year is a time to look back and celebrate successes we’ve made together in changing the world for people with MS in 2017. 
 
We know breakthroughs build upon each other, each one taking us closer to a world free of MS. There’s been a rapidly evolving focus in the research community around understanding progressive MS and finding ways to stop it and reverse the damage. This is due in part to the activities of the International Progressive MS Alliance, the first global MS research initiative focused on progressive MS. The ongoing, worldwide collaboration with leadership from the National MS Society accelerates breakthroughs for people with progressive MS.
 
The first treatment for primary progressive MS, Ocrevus, was approved by the FDA earlier this year and there are other hopeful possibilities in the pipeline.  Results from a Society-funded phase 2 clinical trial of ibudilast indicate a significant reduction in the rate of brain atrophy in people with progressive forms of MS.  This research is led by a former Society research fellow, Dr. Robert Fox from Cleveland Clinic.  These phase 2 results will hopefully lead the way to testing ibudilast in larger phase 3 trial(s) before application for marketing approval from the FDA. Ibudilast was designated by the FDA as a “Fast Track Product” which could speed its future development as an important treatment of progressive MS.
 
The revolutionary approval of the first progressive MS medication earlier this year has already paved the way for more advancements in progressive MS. Advocacy successes, like in California, will help ensure these new medications for progressive MS are accessible to those who need them most and secure critical federal research funding for future breakthroughs. You can help us drive even more progress in 2018 and beyond through a tax-deductible gift to the Society before the year ends.
 
I’m excited about everything we’ll accomplish together in the coming year, as we build on our successes and push forward towards a world free of MS. Every breakthrough matters and this work would not be possible without your support and generosity. Thank you for your commitment and Happy New Year. 

Yours truly,

Cyndi Zagieboylo, President & CEO
Cyndi Zagieboylo
Cyndi Zagieboylo
President & CEO

Featured Engagement Opportunity: Webcast with Alliance Collaborative Network Researchers

During the joint meeting of the European and American Committees for Treatment and Research in MS (ECTRIMS/ACTRIMS) in October of this year, the Society and the International Progressive MS Alliance hosted an informative webcast featuring Dr. Tim Coetzee and Alliance Collaborative Network lead researchers Dr. Douglas Arnold, M.D., McGill University (Canada); Dr. Gianvito Martino, San Raffaele Scientific Institute, Milan (Italy); and, Dr. Francisco Quintana from Harvard University/Brigham and Women’s Hospital.

Watch it now to learn more about the global work taking place to change the world for people living with progressive MS.

Society Commits $13.8 Million for 40 New MS Research Projects

Following a recent meeting of the Research Programs Advisory Committee (RPAC), the Society committed $13.8 million to support 40 new MS research projects. These are part of a comprehensive research strategy aimed at stopping MS, restoring function that has been lost, and ending the disease forever. This financial commitment is the latest in the Society’s relentless research effort, with 360 projects under active management.

In 2017, the Society invested $40 million for new and ongoing studies.

As the largest nonprofit funder of MS research in the world and a recognized global leader in driving MS research, the Society stimulates studies worldwide, leverages opportunities, fosters collaboration among foremost experts, and shapes the research landscape to address the urgent needs of people with MS.

Over the more than 70 years since Sylvia Lawry founded the National MS Society, research success have changed the lives of everyone affected by MS, fueled by the critical contributions of Society donors and directed through the careful allocation of those funds to the most promising researchers and research endeavors.

To advance MS research with the highest potential to accelerate breakthroughs, the Society vets each research proposal we receive through a rigorous scientific peer review process. The Society’s Research Programs Advisory Committee (RPAC) is comprised of some of the world’s most renowned scientists who provide the Society with critical advice on strategic research initiatives and funding decisions that have the best chance of moving us closer to a world free of MS.

RPAC oversees the crucial work of the Society’s peer review committees, which review grants for basic and clinical MS research, evaluating applications in terms of the significance of the project, the relevance of the project to MS, the approach or methods to be used, the innovation of its concepts, the investigator’s qualifications and available resources, and suitability of the proposed budget.

Though we have made tremendous progress, there are still critical questions we must answer that RPAC and the Society use to drive research priorities and investments:
  • Why does MS affect certain people and not others?
  • What is the cause of MS?
  • How do we stop MS progression?
  • How do we repair the damage caused by MS?
  • How do we reverse symptoms and promote wellness? 
You can learn more about the progress being made to answer these questions by watching this video.

Momentum in MS research continues to build, and your support is critical to fueling breakthroughs on the horizon. Connect with the Society to find out what’s happening in the MS research pipeline and how you can be part of the next major breakthrough.

Bequest Gift Inspired by 32 Years of Passion for the Mission

Susie Collins with Georgia Society staff
Susie Collins with Georgia Society staff

Susan M. Collins, or “Miss Susie” as she was affectionately known, lived a quiet, humble life.

“She was a woman of uncommon fortitude,” says Georgia Society President Roy Rangel. “She lived in a simple home. She didn’t drive or own a car. She walked to the bus stop and took the bus and then a train to travel (the 20 miles) to work every day.” 

During her 32-year career with the Society as a receptionist, office manager and fundraising project coordinator, Miss Susie was inspired by event participants, donors and those living with MS. She devoted her life to helping change the world for people affected by MS but with very little fanfare. 
“She was a very private lady,” says her brother Jeff Collins. “She was proud of her contributions, but she didn’t gloat about what she did.”

After Miss Susie passed away in January at the age of 71, the Society received a $250,000 bequest from her estate, a demonstration of her inspiration and passion for the Society’s mission garnered over more than 30 years. 

“[Susie] just wanted to help people with MS in any way she could, and her generosity and passion to make a difference live on,” Rangel says.

Miss Susie was known for her modesty and for her devotion to the National MS Society. 

“When she had something to say, everyone listened. She didn’t say much, but whatever she said we took to heart. Some passionate people are loud and aggressive. She exhibited her passion in a different way.,” Rangel says.
Miss Susie was an integral and beloved part of the Georgia staff, serving as the de facto editor and archivist. 

Before settling in Atlanta, Miss Susie attended the University of Michigan. After graduation, she modeled professionally in Chicago and New York, and then held administrative assistant positions for renowned professors at Columbia University and the University of California, Berkeley.

“She was a very caring and interesting person,” Jeff Collins says. “She was an unfailing friend.” 

Miss Susie’s dedication to the Society’s mission, and her firsthand interaction with those in the MS movement over more than 30 years, inspired her to leave a legacy that will continue to make an impact on the lives of people with MS.

Generous gifts from people passionate about the MS movement ensure that the work of the National MS Society can continue for years to come. Whether you would like to put your donation to work today or benefit the Society after your lifetime, a planned gift will help stop MS in its tracks, restore what has been lost and end this disease forever. To learn more about the giving options and benefits available, visit plannedgiving.nationalmssociety.org.

Share