Friday, January 20, 2012

What About Progressive MS?

Tim Coetzee, PhD
Chief Research Officer, National MS Society

Recent news stories have again brought sharp focus to an issue that can’t be brushed aside. No matter how many successes there have been in developing therapies for MS, many of them do not apply or don’t work well in people whose MS either started out without relapses (the primary-progressive form), or whose MS started with relapses, but eventually got worse and worse (the secondary-progressive form).

We are painfully aware of this issue. When the Society held a think tank focusing on progressive MS over a year ago, one of the first things participants discussed was the knowledge gap about progressive MS.   

We need to fill this knowledge gap with more research that will get us to a place where we can stop MS progression in its tracks and fix what’s been damaged in the nervous system. Here are a few of those unknowns related to gaps in progressive MS:
  • What are the underlying mechanisms that influence why some people have very slow progression while others worsen quickly? Answers to these questions will help point to new therapeutic targets. 
  • What factors influence the transition from relapsing MS to the secondary-progressive stage of MS? Understanding these factors should make it possible to interfere and stop progression. 
  • What causes nerve degeneration in MS? Finding ways to stop the loss of nerve tissue, and to repair the loss, is crucial to restoring function. 
  • How similar or different are progressive forms of MS? Determining this will help inform future research and clinical trials.

Progressive MS is front and center in the Society’s Strategic Response to MS, which guides the Society in its mission to end MS forever. One of the next steps from the think tank is happening this week in Washington, D.C.: the launch of an international consortium on progressive MS by leading MS societies around the world. The idea is that combining our forces will propel this effort forward much faster than if we each try to tackle it alone.  

In coming weeks, I’d like to share with you how the Society, our collaborators and others are working together to advance treatments and understanding of progressive MS. This includes clinical trials now underway in progressive MS; the promise of stem cells; progress in nervous system repair; and new insights into what’s causing progression. In the meantime, I’d like to point out a few resources on our website that may be helpful.

Click here to view video related to progressive MS.

View the Webcast “Research to Improve Quality of Life” with moderator Tracey Kimball and panelists Dr. Dennis Bourdette, Dr. Robert Motl, and Dr. Nicholas LaRocca.

Read more information about progressive MS.


  1. As SP MS sufferer for 6 yrs, I always felt the Society was overly focused on the 85%-ers just like the the pharmaceutical companies. I understand the economics for the pharmaceuticals but the Society? I'm very glad to see this article. Please cure the 15%-ers too.
    -- Greg

  2. As a physical therapist specializing in treatment of MS, I want to bring the groups attention to another facet of this problem:Medicare is willing to pay for PT, OT, and SLP services for patients with relapsing remitting MS, but are likely to consider these services for patients with progressive MS "maintenance" and therefore not cover them. I am printing below Medicare's response to my specific query about this. It indicates that not only is there more limited medical management for progressive MS, but less of willingness for insurance to pay for rehab services for this population. I wonder if there was more medical management if the perception of rehab for progressive MS would change as well.

    Here is Medicare's response to my question about treatment of progressive MS

    "During the Medicare conference regarding rehabilitation services on January 5, 2012, a question was asked about coverage for services provided to patients with progressive Multiple Sclerosis and Parkinson’s disease. I stated that I would send this question to the Medical Directors. I have received their reply and wanted you to be aware.

    This is the question that I sent to our Medical Directors:

    “Over the last few months, while doing educational sessions with PT providers under medical review, several providers have expressed concern about patients with Multiple Sclerosis and Parkinson’s disease.

    I have always explained the issue about the potential for progress being a coverage guideline and for maintenance that the condition of the patient must be so complex that no one else could do the services.

    Last week a therapist was discussing patients with a progressive form of MS where they do not have exacerbations but a continual progression of the illness and that it is not safe for anyone else to treat as their gait becomes unsteady. The therapists believe without the treatment, the patients will decline much faster. Medical Review denies the services as maintenance.

    I just wanted to be sure I am correct when I say this is not covered or to see if you have any other thoughts about this.”

    The three Medical Directors all agree that in this situation, continued therapy services would be considered maintenance and not covered by Medicare.

    Sally Rosiello, BSN, CPC

    Provider Outreach & Education Consultant

    National Government Services

    1. Sally, this does not surprise me. I am "officially" listed in all medical files as RRMS in order that I may receive meds under Blue Cross insurance. In truth, I have been PPMS from the start! Sad but true... Thank you for sharing what you have learned!

    2. The problem highlighted above is a very real one, annually affecting tens of thousands of Medicare beneficiaries around the country who are allegedly not improving or have stabilized. Known generally as the Improvement Standard, this policy has no support in the Medicare statute and runs directly contrary to several Medicare regulations. Nevertheless, it is generally accepted and applied, especially at the lower levels of Medicare review. Because of the significant impact of this illegal standard, the National MS Society has joined with five other national organizations and six individual beneficiaries in a case filed as a nationwide class action in federal court in Vermont and known as Jimmo v. Sebelius, No. 11-cv-17 (D.Vt.). The government’s motion to dismiss was denied, and plaintiffs’ motion for class certification is pending.

  3. I was RR for 7 years so I started out with insurance coverage for the ABC drugs. Now that I have 'advanced' to SPMS I'm still able to be covered. I'm very thankful for the research that is being done all over the world!