Hayden woman to undergo experimental treatment for MS
Rami Amaro is betting on an experimental stem cell transplant treatment to fight off multiple sclerosis.
It’s a risky – and expensive – procedure that the Hayden woman hopes will stop the degenerative effects of MS, a disease that affects brain function. Though she has undergone conventional treatments and is taking interferon shots every other day, Amaro has accepted – and has convinced her husband and four children – that a more radical approach is needed if she is to live the life she envisioned for herself.
The treatment is part of a study conducted by the Fred Hutchinson Cancer Research Center in Seattle. It focuses on people with early confirmation of severe MS. It will require Amaro to spend two months on the transplant floor of the University of Washington Medical Center as her doctors destroy her immune system and then reboot it by transplanting stem cells previously extracted from her bone marrow.
What makes this procedure different from other stem cell transplants in patients with neurological autoimmune diseases is that the extracted stem cell samples are rid of T cells, the white blood cells that play a key role in protecting the body against disease, said Bernadette McLaughlin, a research nurse coordinating the study.
Older T cells, she said, have experience, or memory, that provoke them to cross into the brain and do damage.
If such T cells are replaced with new ones created by the transplanted stem cells, the hope is that the new T cells won’t behave in such a way, thus disrupting and perhaps even reversing the effects of MS.
If the treatment receives approval for widespread use, it would give hope to about 5 percent of MS patients, McLaughlin said.
Amaro’s symptoms began appearing several years ago. But it wasn’t until she was campaigning for a judgeship that her vision began to fail and her arm became clumsy.
She lost that 2006 race to unseat 1st District Judge John T. Mitchell despite outspending him, including using $48,000 of her own money, according to campaign reports.
Then in 2007, when she was in Cincinnati with her husband, Lance, she lost her vision and was rushed to the hospital. Her MS diagnosis was confirmed.
“I thought maybe I was having a stroke,” she said.
In the two years since, she has experienced the frustrating, painful and frightening symptoms that afflict MS patients. Her vision continues to be troubled. She is losing some of the executive brain functions that helped her become a successful attorney. And she has lapses in memory.
In response, she has stopped her general law practice and is now focused on taking care of her family while they take care of her as she prepares for the treatment, possibly before the end of the year.
The study of some 26 patients is not recruiting participants, McLaughlin said.
The mortality rate for participants is between 3 percent and 5 percent. While that may seem like good odds, it’s considered high by neurologists and others, who point out that the procedure is not considered lifesaving.
While it’s too early to confirm success rates, initial results of numerous stem cell transplant studies have led researchers and patients to settle on a 60 percent to 80 percent recovery.
Amaro, who beat thyroid cancer in her mid-20s, considers herself a prime candidate for the study and is confident she’ll end up in the positive column.
The treatment will cost more than $210,000. Though her health insurer has yet to approve payment, she believes it will.
“This is my chance to see my children grow up and maybe one day see grandkids,” she said. “It has to work. It’s a risk I’m willing to make.”