Valerie Belsito is one of an estimated 100,000 Canadians living with Multiple Sclerosis.
As described by the MS Society of Canada, MS is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. MS symptoms can include extreme fatigue, lack of coordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes. Its effects can be physical, emotional and financial.
Canada has the unfortunate distinction of being the country with the largest population of people living with the disease. That Canadians must travel internationally to receive the most innovative and effective treatment’s is an irony not lost on anybody.
At 48 years old, Valerie has been wheelchair bound for 10 years. Twenty years ago, early symptoms presented in Valerie and today she says it could be worse. With limited aid from personal support workers in her home twice a day, an hour in the morning and half an hour in the evening, Valerie makes the best of her situation. Unable to transfer herself from her wheelchair to the toilet, Valerie may be sitting in unpleasant circumstances until a worker returns in the morning or the evening. When the wait is unbearable, she turns to family members as a last resort. A catheter has been installed though its’ reliability is less than satisfactory.
Living in her geared to income home that is not wheelchair accessible, Valerie makes the best of her situation anticipating the coming and goings of her children, finger feeding herself chocolate pudding when she gets a craving and poking around on the computer. Housing authorities have tried to encourage her into an accessible apartment but Valerie is unwilling to surrender her remaining independence or her hope that someday she may not need accessible housing.
“I want to stay in my home. I’m not ready for that one yet,” said Valerie, her eyebrows knit together.
A cure for MS has not been declared but the medical community has introduced stem cell therapy as life-changing procedure for people with MS. The therapy gathers and stores stem cells from a person’s own bone marrow. The rest of that persons individual cells are depleted by chemotherapy. Stem cells reintroduced into the body, migrate to the bone marrow and over time produce new white blood cells. The goal of this therapy is to reset the immune system.
Presently, in Canada there are two stem cell therapy trials for people living with MS underway at the Ottawa Hospital. However, regulating the treatment is a long way off and participants in the trials must fall within a restricted criteria. The trials offer stem cell therapy to individuals 18 to 50 yrs. who are experiencing ‘relapsing-remitting MS’. These individuals may experience a flare-up of symptoms that is followed by a period of remission. The second group of trial participants are those who experience aggressive forms of MS but are still in the early stages of MS and where existing therapies have been unsuccessful. Researchers claim that either of these therapies would not benefit people, like Valerie, who have had significant disability caused by MS. Both trials use adult stem cells and/or umbilical cord stem cells.
Though stem cell therapy is covered by Canadian healthcare only 5% of MS sufferers qualify for the treatment. Valerie’s family has organized a couple of fundraisers and a gofundme page with the goal of raising approximately $20,000 so that Valerie can seek stem cell therapy outside of Canada. Valerie is hoping to schedule her stem cell therapy treatment through StemGenex – a treatment centre located in San Diego. StemGenex offers stem cell therapy using adult stem cells only- its’ origination less controversial than the harvesting of embryonic stem cells.
Testimonies from people with MS who have received stem cell treatment indicate that the therapy makes a difference. Valerie isn’t a Pollyanna when she talks about the possibilities after stem cell therapy but she is hopeful for something better.
Looking around her tiny home, Valerie allows herself to imagine what life could be like after therapy.
“I want to be able to do simple things. I would like to not have to depend on my kids to clean my house and get my meals. I would like to be able to cook again and wipe off my kitchen counters. Even if I don’t walk ever again, I’d love to have use of my upper body. Walking again would be awesome, I haven’t done it for ten years and if that doesn’t happen I’m ok with that. But regaining the use of my upper body would mean recovering my own independence. I could eat by myself, go places alone without being fearful…Right now I can’t even open my own front door or go outside to sit on my deck and take in the sun. I can’t even do that. I’d like to do all of that.”
Six years ago Valerie was tasked with raising funds when she opted for an alternative surgery in Costa Rica. In 2009 it was discovered that people with MS present a condition called chronic cerebrospinal venous insufficiency –a narrowing of veins in the neck and chest that carry blood away from the brain and spinal cord. The medical community theorizes that the slowed flow of blood collects in the brain and spinal cord leading to oxygen loss and iron deposits in the brain. The surgery alleviated this condition in Valerie and for a time she experienced some improvements- her eyesight and hand dexterity improved and overall deterioration slowed down.
Valerie shakes her head when she speaks about the costs associated with the long-term care required for those most debilitated by MS. Though her medication costs covered by ODSP are relatively minor, Avonex, a common drug used to manage MS symptoms can costs as much as $20,000 per year.
“The government is willing to pay that for people who have MS for years and years. Why? You could spend $10,000 on the therapy for them and get them better, improve their lives dramatically.”
It is unforeseeable when stem cell therapy will be available and to whom it will be available. Spokesperson for the Ottawa Hospital only offered a vague reply to the question.
Stem cells are used in Canada to treat leukemia, multiple myeloma and other blood cancers. The Canadian Stem Cell Foundation states that a national stem cell strategy is overdue, citing numerous diseases –respiratory, heart, Chron’s, that could be treated through stem cell therapy but aren’t at this time. CSCF also mentions that a strategy would provide an economic advantage as new therapies and products are developed in Canada.
Valerie tries to remain hopeful about the future but doesn’t feign cheerful determination. MS gets her down and that’s just the way it is. “I get so depressed sometimes. I do push myself, even when I’m tired, I still whip around in my chair and sit in front of the computer and do things. But when I go out I get a lot of anxiety –especially if I have to go somewhere alone.”
Gazing for a moment down the path where stem cell treatment might never be received, Valerie despairs. She envisions a grim future that many of her friends with MS live as a reality. “I’ll be bedridden, relying on personal support workers for my every need. Maybe I’ll be in a nursing home. I don’t want my life to be spent in bed. I can’t imagine laying there and sleeping and watching T.V. and sleeping some more.”
So far Valerie has raised just over $1,200 of her $20,000 goal. If you are able to contribute to Valerie’s stem cell therapy piggy bank please check out her GoFundMe page.
You can also participate in a Paint Nite fundraiser for Valerie on Wednesday, September 14th. You can purchase your tickets online by clicking here.