PITTSBURGH (KDKA) – There’s a new treatment for MS patients who’ve tried everything and have yet to find something that works for them.
It’s not cheap, but it is providing new hope for patients who feel like they’ve run out of options.
Barbara Baird has had multiple sclerosis for 27 years.
“I walk with a walker, I’ve walked with a cane,” she said, “I’ve been in a wheelchair, I’ve been in bed. So I’ve had a lot of different symptoms.”
It used to be there were no medications to treat it. Over the past two decades, about a dozen medicines have come along. She’s tried them all – to reduce inflammation and to soothe the immune system.
Now a new medication, originally used for cancer, has been FDA approved for MS. It’s called Lemtrada.
“I’m hoping that this would be one that might work for me,” said Baird.
“We’ve increasingly borrowed from other fields, cancer, rhematoid arthritis,” Dr. Thomas Scott, a Neurologist at Allegheny General Hospital. He added, “We just treated our first few patients in the last two weeks.”
The drug targets and destroys certain types of inflammatory white blood cells before they get into the brain and spinal cord to do damage.
Multiple sclerosis is an autoimmune disease where your own body attacks the coating on nerve endings in the brain and spinal cord. The nerves becomes like frayed wires, and essentially short circuit.
You can have numbness, weakness, vision trouble, balance problems and other symptoms, depending on which parts of the central nervous system are affected.
In studies, Lemtrada decreases flare ups of symptoms and the formation of new plaques.
“This is the kind of drug you take when you’ve tried everything else,” said Baird.
The FDA recently approved the drug, though about a year earlier it had rejected it. Advocacy groups pushed for approval.
“I think the advocacy groups have a role to play as far as making sure these drugs are looked at in a timely fashion,” said Scott. “I don’t think the advocacy groups are going to sway the FDA in terms of approving a drug from a scientific standpoint, or from a safety standpoint.”
The safety concerns include one in five people developing thyroid problems and one in 50 having trouble with clotting cells called platelets. Also kidney issues and severe infections are a concern. But despite these concerns, the drug is approved in Europe.
It’s given by vein, once a day, for five days straight. Then a three-day treatment is given a year later. In the meantime, there’s monthly bloodwork.
“It’s really high maintenance,” said Baird.
And there’s the cost. It’s $20,000 a vial. The drug company is footing the bill for Baird’s medicine, but there are additional expenses.
“The infusion process will be where it’s costing me money,” said Baird.
Baird has high hopes to match.
“That I won’t have to use my walker,” she said. “That’s my biggest hope. Because my son is 24. He might get married. And I don’t want to have to go down in a walker. It’s just not my thing.”
“Unfortunately this is not a medicine that is going to be restorative for a patient who is already in a wheelchair for many years,” said Scott. “It’s not going to restore their nervous system.”
Even so, she is willing to take the risks.
“This is my last hope right now,” said Baird.