Mom's Story

A discussion about Mom's Story and MS…

Archive for the month “April, 2015”

Study on Escalating MS Therapy Costs in the US Reported in the Journal Neurology

The journal Neurology has recently published a compelling report on a study conducted by a research team at Oregon State University and Oregon Health & Science University that examines the pricing trajectories in the US of disease modifying therapies over the last 20 year and assesses the influence of what appear to be unexplained rising prices.

Access to affordable, high quality healthcare is essential for people with MS to live their best lives. The evidence tells us that early and ongoing treatment with an MS disease modifying therapy is vitally important to controlling disease activity, delaying the accumulation of disability and protecting quality of life. However, today’s healthcare reality is that the high cost of these important therapies prevents full access to them.

The Society is deeply concerned by the rising costs of MS therapies and the negative impact that this has on individuals being able to access these treatments. People with MS must have full access to affordable health care. The Society is committed to bringing together all the stakeholders on this issue to find viable solutions to lower the overall costs of MS care and expand the medication formularies available to people with MS, which too are affected by the escalating prices.

While Society endeavors continue to advance on addressing policy and pricing issues, the Society focuses on helping to ensure that people with MS have access to the therapies they need by assisting them to tap into available options and assistance programs. Our work is grounded in our Access to High Quality Healthcare Principles, which are the foundation for all of our actions.

To establish these strategic principles, the Society convened a task force comprised of people with MS, family members, health policy experts and healthcare providers. The task force also listened to the concerns and thoughts of people with MS through extensive social media monitoring, surveys, and feedback opportunities. The principles were adopted by the Society’s National Board of Directors in November 2014.

We are currently working to understand the complexities of the healthcare system, the interrelationships and points of influence. We have explored data on the formulary restrictions, met with numerous potential partners on these issues and created an extensive database of legislation at both the state and federal levels designed to increase access to medications in order to determine the best path forward for people with MS.

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Experimental drug that may repair nerve damage in MS moves forward

A new study suggests that an investigational drug for multiple sclerosis (MS) may repair myelin according to a study that will be presented at the American Academy of Neurology’s 67th Annual Meeting in Washington, DC, April 18 to 25, 2015.
“This study, for the first time, provides biological evidence of repair of damaged myelin in the human brain, and advances the field of neuro-reparative therapies,” said study lead author Diego Cadavid, MD, with Biogen in Cambridge, Mass., and a fellow with the American Academy of Neurology.
The Phase 2 study involved 82 people who had their first incident of acute optic neuritis, a disease that typically affects one eye and is characterized by inflammation, damage to the nerve fibers and loss of myelin within the optic nerve. It is estimated that about half of people with optic neuritis will later develop multiple sclerosis.
All participants were treated with high dose steroids and then randomly selected with equal probability to receive either the experimental antibody, called anti-LINGO-1, or a placebo once every four weeks, for a total of six doses. Participants were then assessed every four weeks for six months and a final visit at eight months. The drug’s effectiveness in repairing myelin was evaluated by comparing the recovery of the optic nerve latency in the damaged eye at six and eight months to the normal unaffected eye at the start of the study.
The main finding of the study focused on the latency of the visual evoked potential (VEP), a test that measures the visual system’s ability to conduct electrical signals between the retina and the brain. The results showed that people treated with the experimental drug and who did not miss more than one dose (per protocol population) had significantly improved conduction as measured by latency recovery compared to people who received the placebo. At six months, those who received the drug improved on average by 7.55 milliseconds, or 34 percent, compared to placebo. The effect continued to eight months with an average improvement of 9.13 milliseconds or 41 percent over placebo.
In addition, the percentage of subjects whose VEP latency in the affected eye recovered to normal or nearly normal (within 10 percent of the normal eye) more than doubled, from 26 percent on placebo to 53 percent on the drug.
A substudy using an exploratory method of measuring latency called multifocal VEP revealed similar treatment effects.
“More studies are needed to evaluate whether these changes lead to clinical improvement,” said Cadavid.
A second study of anti-LINGO-1 in people with multiple sclerosis is ongoing.
See more at: http://www.neuroscientistnews.com/clinical-updates/experimental-drug-may-repair-nerve-damage-ms-moves-forward#sthash.KsNzebw1.dpuf

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