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Milwaukee mother denied treatment that could reverse her MS

MILWAUKEE-Lakesha Johnson wants to be a good wife and mother. But her multiple sclerosis keeps getting in the way.

\"I have blurred vision. I see four of you now,\" the 33 year old recently told CBS 58's Michele McCormack in an exclusive interview from her Milwaukee home.

\"I also have this blind spot in the middle which is really weird and my right leg goes completely numb. I'm dragging it.I can't feel it at all.\"

She was diagnosed in 2007. Traditional drugs have failed her. She undergone 22 sessions of chemotherapy with steroids. The symptoms keep coming on.

There was new hope recently when her doctor told her she was an excellent candidate for a stem cell transplant study at Northwestern Hospital which uses an MS patient's own stem cells.

\"Their neurological disability reverses.\" the study's founder Dr. Richard Burt told CBS 58 News during a recent tour of his lab in Chicago.

\"Even though they're on no therapy after this treatment for MS,\" he explained, \"they improve neurologically at six months. They're better at one year than six months and the maximum improvement is two years after the procedure with reversal of what had been neurological deficits.\"

Dr. Burt says hundreds of patients from around the world have come to his lab to take part in his study. The cost about $125,000 dollars.

\"Most insurance companies pay.\" says Dr Burt. \"Medicaid which is federal pays as does Medicare in Illinois at the state level. But there are some rare companies who do not.\"

Lakesha Johnson's health insurance provider is one of the rare exceptions.

But Dr. Burt is hopeful.

\"This is a process of getting certain people who have put blinders on  and have said no to get them to listen. For this particular insurance company I've said I'll come present data, talk. Those offers have never been accepted.\"

LaKesha says it's the kind of thing that challenges her optimism.

\"It's crazy,\" Johnson explained, \"because the letter I got the last time is like the letter I got every single denial.\"

It was then at the urging of a friend, when she was feeling her lowest after yet another chemo session, that Johnson did something she never imagined; .she went public with her private struggle.

She went on YouTube to ask for money. She's created a blog and facebook page and between friends, former classmates, and strangers she's raised $12,000.

\"I'm hoping this reaches the right people,\" Johnson's husband Anthony told CBS 58 News.

The family's insurance is Blue Cross Blue Shield Minnesota and provided through his work. They've never had problems before and had one message for the powers that be.

\"This is eating at our family. What if this was your wife or mother or sister? What if the shoe was on the other foot? You would want this done.\"

Blue Cross Blue Shield Minnesota said it could not comment on specific cases but offered this statement:

\"All medical policies are written with the goal of ensuring the safest and most effective care for our members. We consider bone marrow stem-cell transplantation for the treatment of autoimmune diseases, including multiple sclerosis, to be investigative at this time.

Blue Cross and Blue Shield of Minnesota routinely looks at coverage practices in the industry for the treatment of MS. The prevailing practice among other commercial insurers and government health programs is that conventional, evidence-based immune disorder therapies are covered, while this type of stem cell treatment typically is not. That is our practice as well. We  evaluate policies based on the latest medical evidence available and continue to monitor changes in research and clinical data. Should future studies indicate that such stem cell procedures meet the same safety and efficacy standards as proven treatments, our policy may be revised to reflect such findings.\"


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