CMSC Statement Says Control of MS Treatment Should Stay With Prescribers

Pauline Anderson

October 28, 2015

A new position statement from the Consortium of Multiple Sclerosis Centers (CMSC) concludes that prescribers should be the ones to decide on the best treatment for each individual patient with multiple sclerosis (MS).

"The varied and individualized course of MS mandates full access to symptomatic management as well as disease modifying therapies which, in the best judgment of the prescriber, offer optimal treatment outcomes," the documents authors write. "Medications to treat symptoms are carefully decided on an individual basis and by best practice regimens. Access to rehabilitation services for (MS) patients and to drugs to treat symptoms such as pain, spasticity and bowel problems in these patients is becoming increasingly difficult."

Although some barriers are understandable given how expensive MS is to manage, there are now "multiple hurdles and road blocks" involved in accessing therapeutic modalities for patients with MS, David Jones, MD, assistant professor, neurology, University of Virginia Health System and co-chair of the advocacy committee of the CMSC, told Medscape Medical News.

Dr David Jones

For example, he said, speech language evaluations are not being approved by the payer even though many patients with MS experience dysarthria or difficulty speaking. Another example is bowel problems, not uncommon among patients with MS and readily manageable by medication.

"In many instances, that medication is not specific for MS but specific to bladder dysfunction, and you have to jump through hoops to get the approval, because there's a lack of understanding on the part of payers that managing MS is not just disease modification," said June Halper, CEO of CMSC.

The situation now is that the payers, not the clinicians, are deciding what drugs patients with MS can get, Dr Jones said.

As more and more CMSC members complained about lack of access and began asking the CMSC to help, the consortium decided to draft a position statement on the topic.

Pervasive Problem

"It's getting to be such a pervasive problem," commented Dr Jones. "It has reached the point where we can't continue to fight on a case-by-case basis anymore."

MS management has changed dramatically over the past few decades. Before the advent of disease-modifying therapies, MS symptoms and rehabilitation were the main focus of management.

"When I first started in MS back in 1980s, all we could do was take care of the symptoms, provide rehab, and keep our fingers crossed that patients wouldn't have attacks," said Halper.

Today, there are 12 US Food and Drug Administration–approved disease-modifying therapies for MS. Some of these have very complex risk-benefit profiles, said Dr Jones. "You still have to go through the struggle to access the one that you and the patient think is most appropriate."

These drugs are also expensive. "The cost of drugs has been exponentially increasing," said Dr Jones.

So the pendulum has swung away from symptomatic management and toward disease modification. "Symptom management has taken somewhat of a secondary role, which I think is completely inappropriate," said Dr Jones.

Rehabilitation services, such as speech, occupational, and physical therapy, are increasingly being restricted because of lack of research directly related to MS. But Dr Jones pointed out that it's difficult to carry out randomized controlled trials to prove the effectiveness of these therapies in patients with MS.

Payers also want clinicians to follow a clearly defined algorithm, suggesting they "do step 1, then step 2, then step 3," said Dr Jones. "The problem with that is that it assumes MS is a homogenous disease that affects every individual the same way. You need to be in my clinic for only about 3 hours to realize that everybody is different."

Some patients may have vision issues, others have speech or swallowing problems, while still others may have other complaints, said Halper.

Access Critical

Asked to comment, Lily Jung Henson, MD, chief of neurology, Piedmont Healthcare, Atlanta, Georgia, offered "kudos" to the CMSC for "stepping up and putting it out there."

"Given the significant number of symptoms in MS, including fatigue, pain, tingling, bowel and bladder symptoms, cognitive difficulties, and the impact of these symptoms on quality of life in MS patients, it's absolutely critical that patients have access to therapies that will allow them to function better," she said.

It's "just disingenuous" that insurers are refusing to pay for therapies because they haven't been tested in MS, said Dr Jung Henson. "In clinical practice, we use medications off-label frequently, and quite frankly, it's just not cost-effective to do a study to show that therapies are helpful. So why force patients to live with symptoms when there are therapies that in clinical practice we know are helpful?"

Will the position statement change the situation? "That's hard to say, but unless you put the statement out there, insurers will continue to keep chipping away at treatments," said Dr Jung Henson.

To access the position statement, visit


Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.
Post as: