A life changing treatment is out of reach for MS patient

WINCHESTER, Va. (WUSA9) -- 30 year-old Jennifer Crane sits patiently in her doctor's office waiting for an exam. She seems rather relaxed as her doctor entered the room. He asks her to hold out her hands, as he grabs her hands, they shake. He asks her to use her arm to push his forearm, she has to exert her whole body to do so. She cannot hold a pen, and her legs are so stiff she can barely walk.

Jennifer has Multiple Sclerosis, but unlike many MS patients, she doesn't have a lot of pain. Her main symptom is tremors, those tremors keep her from doing most things that come easy to all of us. They also cause her to be homebound, she had to leave her job with FEMA and as a paramedic.

Crane says, "My eyes shake, because I have tremors and I shake so much my eyes actually shake so sometimes watching TV, it's like the TV is going like this (she moves her finger up and down) and that kinda gives me headaches.

She met Dr. Mark Landrio of Neurologic Associates in Winchester, VA. He recommended a procedure called Deep Brain Stimulation, or DBS to stop the tremors.

Dr. Landrio says, "That would allow her to feed herself, to dress herself better, to be able to walk more steady without tremor in her legs."

Its a procedure in which electrodes are placed inside the brain and connected to a pacemaker. This sends electrical pulses to the brain that block what causes the tremors.

Dr. Landrio says, "It's been approved by the FDA all the way back to the late 1990s for the essential tremor and early 2000s for parkinson's disease. It's also used for mood disorders and obsessive compulsive disorder, so hardly a new therapy. It's been shown to work in tremors for quite some time. It hasn't been studied in MS proper, but not all MS patients have tremors as dramatic as Jennifer's. But the underlying cause is not dis-similar."

Dr. Landrio believes Jennifer is a good candidate for DBS, But since the tremors are caused by MS that became an issue with her insurance provider.

Sometimes insurance carriers will not pay for a procedure if there aren't enough formal long-term studies to show it's medcially necessary or effective.
In this case, Jennifer's insurance company informed the doctors right before the operation, that they would not pay for the DBS because it was brought on by MS, leaving Jennifer to struggle with the tremors.

But in a statement from America's Health Insurance Plans, an organization that represents insurance companies, they say "health plans want to make sure patients get the care they need. Coverage decisions are based on medical evidence about patient safety and effectiveness of treatments.

We also spoke to Jennifer's medical provider and they reiterated the same, saying "clinical (health) outcomes with this technology have not been shown to produce results at least equivalent to other approaches."

Dr. Landrio says, "Given the current environment with insurance companies it didn't entirely surprise me. But given the severity of the tremor that perturbed me some. So oftentimes it makes it quite difficult to get the right treatment for the patient.

For now, Jennifer and her mother Brenda say they will appeal the decision. Out of pocket, the DBS procedure would cost them $150,000.

When asked if they can afford the procedure, Jennifer replied, "No, there is no way either me, my mom, no, there is no way."

The Crane family will appeal the decision by their insurance company.


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