Twin Falls multiple sclerosis patients are traveling to get new treatment – Coeur d’Alene Press

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Aug 28 2017

TWIN FALLS Over 30 years, Judy Fisher has been left with very few options for treating her multiple sclerosis.

But for the Twin Falls resident, who has the primary progressive form of the disease, theres finally an approved medication she can try.

The Food and Drug Administration approved Ocrevus in March after a large study found it slowed progression of the neurological disease and reduced symptoms. Its approved for both patients who have relapsing and primary progressive forms of MS.

This medicine is really promising, Fisher said.

Its the first FDA-approved medication shown to be effective in treating primary progressive MS. But for months, Magic Valley residents whove wanted to try the new treatment which is delivered intravenously have been forced to travel elsewhere.

Every time theres a new drug on the market, health systems decide whether to add it to its formulary, and that determines whether it will be available to patients.

Dr. John Steffens, a neurologist at St. Lukes Magic Valley Medical Center, told the Times-News on Thursday he received confirmation Ocrevus will be offered at St. Lukes infusion centers soon.

He has about a dozen MS patients who are receiving the new treatment. Most of them have primary progressive MS, but a few have relapsing form of the disease and havent seen results with other medications.

Theyve been traveling to other health care facilities such as Cassia Regional Hospital, Saint Alphonsus Regional Medical Center in Boise, Portneuf Medical Center in Pocatello and University of Utah Hospital in Salt Lake City.

Since 1993, 14 drugs have been approved to slow the most common form of MS, but everything tested against primary progressive MS failed until now. An estimated 15 percent of MS patients have the primary progressive form of the disease, Steffens said.

In primary progressive MS, the diseases course varies among patients, but symptoms gradually worsen from the start and there usually are no periods when symptoms subside.

Symptoms are caused by the immune system attacking the fatty coverings on nerves in the brain and spinal cord that protect them, much like insulation on electrical wiring.

As the coverings deteriorate, nerve messages arent properly transmitted, disrupting movement and muscle control.

For years for people who have primary progressive MS, doctors were left to treat symptoms and cross their fingers hoping a new medication would be developed, Steffens said.

Hed also have patients try other MS medications to see if theyd work, but they often didnt.

Fisher was diagnosed with MS in 1988 when she was in her 30s. Now shes 63.

Ive been lucky, she said. I havent progressed fast at all.

The only prescription medication shes taking is a water pill. Weakness in her right side due to MS, she said, hasnt gotten much worse over the years.

Seven years ago, she underwent stem cell treatment in Germany and saw excellent results. For three months, I was darn near perfect, Fisher said. Im still reaping the benefits from it.

But many of the symptoms have returned, she said. I would give anything to do stem cell again, but its too expensive.

At an appointment with Steffens her neurologist a couple of months ago, Fisher expressed interest in Ocrevus.

But it just came out, Fisher said. He said he had like three or four patients now doing it. I am waiting to see what goes on with them.

Will she try Ocrevus? If theres any way I can afford it, you bet I am, Fisher said. Her next neurology appointment isnt until November.

Active in the local MS community, especially with fundraising walks, Fisher said theres a lot she doesnt know about Ocrevus, but she has read about it.

This is big for that type of MS, she said. It has helped even mobility on people and that is what I would be looking for.

Compared to study participants getting dummy infusions, patients given Ocrevus infusions had slower declines in walking ability and slower disability progression over nearly 2 years.

The Ocrevus group also had fewer new brain-damaging lesions develop but slightly higher rates of certain side effects, including upper respiratory tract infections and tumors developing in various parts of the body.

Ocrevus is given intravenously every six months. It takes about half a day to receive treatment, Steffens said. Its a really logistically simple drug to give.

The medication also seems to be well tolerated among patients, he said, and has the fewest side effect warnings among any MS drugs he has encountered.

During a recent follow-up appointment with Steffens first patient who has received treatment, the person is walking better now than in three years, he said.

But he doesnt know if thats a placebo effect or if that will be a sustained benefit.

And the bad news for MS patients, Steffens said: We still have no cure for any form of the disease.

One common dilemma for MS patients can be figuring out how to pay for often-costly treatment.

Ocrevus was developed by Genentech, part of Swiss drugmaker the Roche Group. Genentech, based in South San Francisco, Calif., has said the initial list price without insurance is $65,000 a year.

So far, Steffens hasnt heard of any of his patients having problems getting the treatment covered by insurance.

And with patient assistance programs factored in, too, co-pays are typically less than $100, he said.

We were expecting huge, huge pushback from insurance companies, he said, but that hasnt been the case.

After years of waiting, it means more local MS patients may be able to finally get the help theyve been looking for.

The Associated Press contributed to this report.

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Twin Falls multiple sclerosis patients are traveling to get new treatment - Coeur d'Alene Press

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