Piner Man is Cleveland Clinic's First MS Patient for Special Treatment
DeWayne Durr was devastated when he was diagnosed with multiple sclerosis (MS) at age 41.
According to the National MS Society, it is estimated that 2.3 million people live with MS world-wide and that 1 million people over the age of 18 in the U.S. live with the disease. There is no known cure.
“MS can be debilitating,” Durr said. “Symptoms can vary but there’s always that fear hanging over you. What if I get up tomorrow and I can’t walk. What if… what if… you worry about it every single day. Even if the worse never happens, there’s still the worry.”
Now at age 46, the Piner resident is symptom free, thanks to experimental treatment at Cleveland Clinic.
What is MS?
MS is a disease in which the immune system eats away at the protective covering of nerves. Resulting nerve damage disrupts communication between the brain and the body. This causes many different symptoms, including vision loss, pain, fatigue, and impaired coordination. The symptoms, severity, and duration can vary from person to person. Some people may be symptom free most of their lives, while others can have severe chronic symptoms that never go away.
Durr’s MS Journey
Early on Durr was only experiencing some vision issues. He eventually stopped seeing his neurologist. For the most part wen about his usual life until a minor auto accident in December 2018. He hurt his back. Gradually he started having other neurological issues. By April 2019, he was not able to walk for a week, except for very short distances with a cane. He missed a week of work and could only move from room to room in his house.
In may, at the Cleveland Clinic, he underwent an MRI. The MS was “highly active.”
Physical therapy and medications that suppress the immune system can help with symptoms and slow disease progression. Durr however, was not interested in the medications due to the side effects, as well as cots.
“The average wholesale cost of these drugs is $66,000 to $91,800 per year with the cost continuing to rise,” Durr said. “Just earlier this year I took one round of Ocrevus. A drug that seems to have some success in stopping disease progress. The amount paid by my insurance company was $65,600. This infusion is required to be taken once every 6 months. That is an annual cost of $131,200.”
Durr said that he is 46 year old and assumed if this drug worked for him, for the rest of his life, and he lives to be 80, that would be a life time cost of more than $4 million, assuming the cost of the drug does not increase.
He wanted other options. So he did his research. In 2019, Durr learned about Hematopoietic stem cell transplantation (HSCT), a procedure that aims to “reset” the immune system, according to neurologist Dr. Navneet Majhail who over saw Durr’s treatment at the Cleveland Clinic.
Hematopoietic stem cells are taken from your bone marrow or blood before your immune system is wiped out with chemotherapy, he said.
This procedure has been offered in various locations around the U.S. as a clinical trial. Actress Selma Blair underwent the trial at Northwestern Hospital in Chicago. Durr applied for Northwestern, but the trial was ending.
“Feeling defeated and hopeless, I felt that the only way I was going to get this treatment was to travel to Clinical Ruiz in Mexico,” he said. “For about $60,000, I could have this treatment performed. Not exactly money that I have in my pocket.”
In 2020, however, Durr was given the opportunity to pursue this treatment at the Cleveland Clinic. He was the clinic’s first patient to have HSCT for Multiple Sclerosis.
“I had gone through a lot to get to that point,” Durr said. “But the entire time God had a plan. Prayer works. One door would close, I’d pray. Another would close again, I’d pray.”
Majhail said that it has been a pleasure to help Durr.
“He’s really a great guy and he’s very passionate,” Majhail said. “He didn’t give up. He was determined to get this treatment and he’s determined to share about it with others. Hes a strong advocate.”
Durr’s treatment was completed on November 2020. He had a new baseline MRI a month later.
“The MRI revealed that there was no new activity, no new lesions, and no current activity. In other words, the procedure was a success,” Durr said.
Although Majhail is pleased with Durr’s success, he said that the treatment is still evolving and clinical trials continue.
“It’s still very early and there are no long term results for us to look at but things look promising.”
Durr said he is happy he kept going.
“When I got the MRI results I was just so happy and I was crying,” he said. “There were so many hurdles. I never stopped.”
Written by Melissa Reinert, RCN contributor