A Fresno man is taking his fight against multiple sclerosis beyond the country’s borders.
He’s seeking an effective treatment that’s available at most major US hospitals but not for MS patients. Every walk around his Fresno neighborhood is a victory for Brian Melton against the disease that, most of the time, holds him hostage in his own home.
“It’s like a roller-coaster ride,” he said. “Every day is different. Some days I feel okay. Some days I feel awful, where I just want to lay in bed all day.”
Brian has multiple sclerosis. Since his diagnosis in 2005, the auto-immune disease has robbed him of the career and the activities he loved and stolen time away from the people he loves.
“There’s days when I have a lot of pain,” he said.
In MS, for unknown reasons, the body’s immune system destroys the myelin sheath around nerve fibers. The sheath is essential for communication between the brain and the body, much like an electrical cord. When the sheath is damaged, it leads to lesions in the brain and spinal cord and patients eventually lose their ability to think and move. Brian takes multiple medications to manage the disease and they’re not cheap.
“$5,000 to $6,000 a month for 30 pills,” Melton said, and the drugs have major side effects. “Lots of weird things in my mind with how I pronounce words and numbness, like burning legs now.”
But Brian hopes to be rid of all drugs and therapies that barely work. For a treatment at a Russian hospital, called Hematopoietic Stem Cell Transplantation, or HSCT, that’s shown incredible results in MS patients around the world. A Facebook page includes stories of people debilitated by MS who had to use walkers but after HSCT are now active and free of drugs
A Youtube video by an MS patient at the hospital in Moscow shows stem cells, which are free of MS, are extracted, treated and frozen. Then the patient undergoes four days of intense chemotherapy to kill their immune system.
Their stem cells are reintroduced to grow new blood and bone marrow cells and rebuild a healthy immune system. The risks are high: patients could die from the aggressive chemo or an infection while their immune system is weak. The procedure is not new and is done in most major hospitals, including in the Valley, for cancer patients. But because it’s still not approved for MS. It’s considered experimental.
“Unfortunately, that’s the country we live in,” Melton said. “Everybody wants to sue and I could go right down the street and have it done but because of this, I have to travel to another country.”
HSCT costs $50,000 at the Russian hospital. Brian’s family and friends held several fundraisers at local restaurants and businesses to raise the money. Brian’s Fresno neurologist, Dr. Perminder Bhatia supports his decision to seek the treatment but wonders how long it will last.
“We don’t know in detail how it’s going to work,” Bhatia said. “Is it going to stop it permanently, is it going to stop it. Five to six years, we don’t know the details.
When Brian returns from Russia, he’ll still need to be seen by Bhatia and an oncologist to check his progress. Meanwhile, Bhatia will be working on his own clinical trials in Fresno, testing upcoming MS drugs but he’ll be closely watching Brian’s results that could add to the growing demand that HSCT be approved and offered to MS patients in the US.
“My greatest hope is to stop the progression,” Melton said. “To be there for my kids as they get older, to have peace of mind that I don’t have to worry about the, ‘What if’s.’ I’m going to be around. I’m going to be around for a long time. Yeah.”