When Heidi Scott went to her doctor about numbness on the left side of her face, she quietly hoped it was anything but multiple sclerosis.
She would later learn that the strange feeling was an indication of nerve damage, and that it – like the bladder issues she had experienced years earlier, and the vision problems that were hard to define – were all symptoms of MS. She was devastated by the diagnosis.
“I literally hoped that I had Lyme disease instead of MS because it seemed like a less terrible outcome,” Ms. Scott said in an interview on Tuesday. “When I first got my diagnosis, the only picture that I had was somebody from my childhood who had an aggressive form of MS and died in her early 30s. The very worst case scenario was the only picture of MS that I had.”
According to the MS International Federation, about one in every 400 people in Canada lives with the chronic autoimmune disease, which means the country has one of the highest rates of MS in the world. Women account for about 75 per cent of cases in the country. But MS receives less attention – from governments, philanthropists and other funding organizations – than many other diseases, possibly because it affects fewer people (about two-in-five Canadians will develop cancer in their lifetimes) and is rarely fatal.
That makes a recent donation by a B.C.-based philanthropist all the more significant. The contribution of $33.8-million to the University of British Columbia’s faculty of medicine and Vancouver Coastal Health’s VGH & UBC Hospital Foundation will go toward establishing an MS research program to be known as the B.C. MS Cell Therapies Translation Research Network, or MS Research Network. According to the university, it is the largest known donation to MS research worldwide.
UBC said in a news release that it will put $14.85-million toward recruiting researchers, and another $15-million toward building biomanufacturing infrastructure for development and clinical testing of homegrown cell and gene therapies. Vancouver Coastal Health will put $4-million toward patient care at its MS clinic, as well as other existing services.
The donor, who has chosen to remain anonymous, said in a statement to The Globe and Mail that people living with MS face a serious lack of treatment options, and that the grant is intended to help change that by providing MS patients in the province with access to advanced therapies and new technologies, and by translating research into new treatments.
Megan Levings, a professor in UBC’s department of surgery and school of biomedical engineering, said the funding will help bring together the global research community at the university in a way that is not currently possible.
“Bringing a drug to clinical testing is a huge endeavour, and it’s so much more than just a basic science discovery,” she said. “You need the discovery, which is what my lab works on, but you need the clinician, you need the health care team that’s going to take care of the patient, you need the biomanufacturing that’s going to convert a basic science discovery into something you can actually deliver to a human.”
Dr. Levings, who is also an investigator at BC Children’s Hospital Research Institute, has been recognized internationally for her research on regulatory T-cells, which are white blood cells that regulate the human body’s immune system response. Like living drugs, the cells can sense and respond to their environments and reprogram other cells.
“With T-cell therapy for cancer, you try to amp up the immune response and get it going stronger,” she said. “My lab works on T-cells that have the opposite job, which is to turn down the immune response.”
In people with MS, the immune system attacks the myelin sheath, an insulating layer that forms around nerves in the brain and spinal cord. This can lead to fatigue, and problems with muscle control, cognitive function and vision.
The goal is to reduce the immune response that causes many MS symptoms, Dr. Levings said.
After her diagnosis, Ms. Scott tried an oral medication and a clinical trial before finding success with a new medication administered every six months by injection. The worst-case scenario she feared most at diagnosis never materialized, and she is now optimistic about her future.
Ms. Scott said she is “extremely fortunate” to have experienced minimal side effects, though she acknowledges she will be on the immunosuppressant medication indefinitely.
She added that she is hopeful that the donation will one day lead to a therapy that, for her and other MS patients, would ”not require immunosuppressants for the rest of our lives.”