The pain makes the simplest tasks, such as buttoning her clothes or writing her name, a challenge. Walking any great distance is out of the question. Abigail Stewart can barely move in the morning and spends up to two hours doing exercises and stretches in bed before she feels well enough to get up.
In between all of that, she has to find time for school, homework and gymnastics classes. That's because Abigail, who lives in St. Thomas, Ont., is 12 years old. She has been diagnosed with extended oligoarticular juvenile idiopathic arthritis, which affects numerous joints, including her ankles, wrists, hips, knees and elbows.
About 24,000 Canadians under 18 live with some form of arthritis, a disease that can cause severe pain, permanent joint damage and serious growth problems. For many, a simple injection of an inexpensive drug called Aristospan can eliminate symptoms and put their arthritis in remission for months at a time. But the company that markets the drug in Canada has decided to stop selling it, leaving patients, doctors and their families scrambling for a solution. Instead of going to their local pharmacy, families now must wait weeks or months for access to the drug – an unnecessary delay that is causing children and teens to suffer irreversible joint damage, according to arthritis specialists and families of those affected.
"We're not giving the best treatment to the right patient at the right time," said Joanne Simons, chief mission officer with the Arthritis Society. "It's delaying the whole process and kids just get sicker."
Although they've been unable to find out why Aristospan is no longer available on the Canadian market, some experts are concerned that this lack of access is part of a wider trend: the growing disappearance of inexpensive, older drugs that have small profit margins.
"We've been seeing it since at least 2010," said Dr. Jacalyn Duffin, a hematologist and historian who holds the Hannah Chair of the History of Medicine at Queen's University. "It's just a tiny little symptom of a huge system problem."
Reports of drugs that are either unavailable or in shortage across Canada have increased in recent years. For instance, the generic drugs haloperidol, an anti-psychotic, and propranolol hydrochloride, a popular treatment for high blood pressure, have been in shortage since last year.
Duffin, who maintains the website canadadrugshortage.com, said many of the drugs in shortage are older, less expensive medications. Pharmaceutical companies note that supply-chain problems or lack of raw materials are often the cause of shortages.
Dr. Peter Dent, professor emeritus of pediatrics at McMaster University and head of the division of pediatric rheumatology and immunology at McMaster Children's Hospital, said he also believes a profit motive may be at the root of the problem.
"What this has done has added a layer of bureaucracy into the process and there's some delay. Is the delay life-threatening? I would say not. … It does … result in some prolonged discomfort," he said.
Currently, Valeo Pharma is the only company authorized to sell Aristospan in Canada. But the company no longer makes it. Although Canadian generic drugmaker Sandoz produces Aristospan for the U.S. market, it doesn't have authorization to sell the drug here. Valeo Pharma did not respond to requests for comment.
Now, the Arthritis Society is pushing Valeo to restart production of Aristospan and for Sandoz to get market authorization to sell Aristospan in Canada. In the meantime, the only way young patients can get Aristospan is for their doctors to apply to Health Canada's Special Access Programme, which is reserved for drugs unavailable in Canada and typically used in life-threatening situations. The drug is delivered from the United States and the amount of red tape means children and teens are left to suffer for weeks for a drug that was once available at pharmacies across Canada.
"It's not really fair to the patients," said Dr. Deborah Levy, a pediatric rheumatologist at Toronto's Hospital for Sick Children. "It's not right of us to be relying on a program to get medication from other countries to treat children at home."
While there are some other drugs available that can be used as alternatives, they don't work quite as well and the effects don't last nearly as long, according to Simons. The duration is important because the drug has to be injected in the joints of children, which typically requires them to be put under anesthetic.
Although the lack of access is serious, experts such as Dent say it has gone under the radar because the pediatric rheumatology community is so small and spread out. There are only about 40 pediatric rheumatologists in Canada and patients living in smaller cities or rural areas often face challenges getting access to the care they need.
Abigail Stewart had to wait six weeks for a recent Aristospan injection. And every day she had to wait, the arthritis did permanent damage to her body, said Abigail's mother, Hope Stewart. "That can never be repaired and that's a bigger cost to our health care system as she gets older," Stewart said in a recent interview.
Stewart pointed out that in addition to suffering cartilage and joint damage, her daughter must take the cancer-drug methotrexate to help keep the disease at bay. Even at relatively low doses, the drug puts her daughter at a greatly increased risk of infections and causes her to feel nauseated for days.
"It's an unnecessary medication that she could have taken for six weeks less if [Aristospan] put her into remission," Stewart said.
Since Abigail had the injection, her pain, inflammation and swelling have all been wiped out and she is on the road to remission, according to her mother. She will need more injections in the future if she wants to keep the disease at bay. But unless something changes, the girl will once again have to wait six weeks, or perhaps even longer, for a medication that used to be available at the local pharmacy.
"Every day of damage is a day of damage that is unnecessary," Stewart said.