Cheryl Simpson candidly admits that she knew almost nothing about Type 1 diabetes a few years ago. It didn't run in her family and it wasn't present in her husband Steve's family. But in early 2004, as she was watching a special about diabetes on an NBC morning show, she started thinking about her daughter Ellery.
"They were talking about symptoms: extreme thirst, frequent urination, rapid weight loss," Simpson recalled in an interview in a Yaletown photography studio. "Here I was looking at my seven-year-old, who has always been tiny anyway."
Simpson took Ellery, now 10 years old, for a blood test. Four hours later, a lab worker called to say that her daughter should immediately go to BC Children's Hospital, where she was diagnosed with Type 1 diabetes. Their lives have never been the same.
Since then, there have been constant blood tests, which involve painful finger-pricking several times a day. There were multiple daily insulin injections until the family bought a $7,000 insulin pump, which is worn externally. Even now, the pump's stent must be replaced every three days, Simpson said, and often it pops out before then.
"This isn't my disease; it's hers," she emphasized. "I've made it very clear–if I could take it on, I would take it on any day, but I can't."
Insulin absorbs blood sugar, which is converted into energy. In Type 1 diabetes, the immune system attacks and kills beta cells in the pancreas, wiping out insulin production. In Type 2 diabetes, which is often associated with obesity and which can be controlled with medication, the pancreas doesn't produce enough insulin or the body doesn't properly use the insulin that is created.
Ellery, who is still very thin, lives an active life, dancing five times a week, swimming, skating, and going to friends' homes for sleepovers. She is also this year's "youth ambassador" for the Juvenile Diabetes Research Foundation Canada, which will hold its annual Walk to Cure Diabetes at Swangard Stadium in Burnaby's Central Park on May 27. JDRF Canada was started in 1974 by parents of diabetic children, who wanted to help fund a cure for the disease.
In her role as youth ambassador, Ellery has given speeches to various companies, including Orca Bay Sports & Entertainment. She clearly likes performing, and she dreams of being an entertainer. "My favourite singer is Kelly Clarkson," she said.
But her mother said that three or four times a year, Ellery must visit the emergency room when her blood-sugar levels can't be controlled. Sometimes this occurs when Ellery catches a cold or the flu. Simpson said she won't hold her daughter back, even though it's one of the most difficult aspects of being the parent of a child with Type 1 diabetes.
"I still get up at 2 a.m. to check her blood sugar," Simpson said. "She [her blood-sugar level] was 23 last night, but she was 2.3 the night before. So you never know what you're going to run into. It's a 24-hour process. Everything your family does is geared around diabetes."
For anyone living with diabetes, there is a great deal of significance to Ellery's blood-sugar numbers on these two occasions. If the level is too high over a prolonged period, this seriously elevates the risk of long-term complications, which include heart attack, stroke, kidney failure, blindness, and amputation. If Ellery's blood-sugar level of 23 were to persist, this could create such hazards.
B.C.'s clinical-practice guidelines suggest that doctors try to maintain blood-sugar levels in their diabetes patients below seven over time. The ideal measurement for Type 1 diabetics is between four and six.
Sustained high blood-sugar levels can have an impact wherever blood flows in the body. But if high levels create havoc later in life, low levels can kill a person by putting them in a coma. The medical term for such low levels is hypoglycemia. This means that Ellery's 2.3 measurement presents risks.
"Like any parent, you want your child to have a long, happy, and healthy life, and not have diabetes anymore," Simpson said.
Diabetes is an autoimmune disease. According to Dr. Bruce Verchere, director of the diabetes research program at BC Children's Hospital, with Type 1 diabetes some of the body's T cells mistake the beta cells for foreign invaders and kill them. That prevents the body from producing its own insulin.
"Type 1 is increasing–and it seems to be true of other autoimmune disease–and we don't know why," Verchere told the Straight in a phone interview.
On March 10, the JDRF Canada held a "research forum" at the Hyatt Regency Hotel in Vancouver. One of the parents and a foundation director, Mike Cyr, told the audience that Type 1 diabetes was increasing by three to five percent per year in Canada. "It's a big problem, and it's getting bigger every year, which is why the fundraising efforts of JDRF are so important," Cyr said.
Dr. Pere Santamaria, a University of Calgary professor of microbiology and infectious diseases, said in his lecture that patients with Type 1 diabetes are born with some risk of developing the disease, "but the contribution of that risk is relatively minor". He said there must be "inciting events", which could be environmental triggers.
"These inciting events will interact with this genetic makeup that prediabetic patients have," Santamaria said. "That would elicit a response of the white blood cells of the immune system that would start attacking the cells that produce insulin."
This means that children and adults with Type 1 diabetes must have regular injections of insulin to survive. Either that or their families must by an expensive insulin pump and spend almost $4,000 more per year to keep it operating.
Simpson said it bothers her that B.C. won't pay for insulin pumps through the health plan, whereas Ontario does pay for them for children. Simpson claimed that these pumps can reduce the likelihood of diabetic complications by up to 30 percent. "It drives me nuts," she said.
B.C. Health Minister George Abbott told the Straight that officials in his ministry are reviewing the PharmaCare program's coverage of diabetes medications and related medical supplies. "Insulin pumps would be a part of that review as, of course, a medical supply," he said.
Abbott said that he doesn't think it's appropriate to compare different provinces' diabetes care purely on the provision of one medical device. "I think you need to do a comparison in the full spectrum of diabetes support and not just on insulin pumps," Abbott said.
Adrian Dix, NDP MLA for Vancouver-Kingsway, told the Straight he was diagnosed with Type 1 diabetes in 1992 at the age of 28. At the time, he was training to run the Seattle marathon. "I was feeling sicker and sicker," Dix recalled in an interview in his constituency office. "I was eating and peeing, eating and peeing."
His doctor referred him to the hospital, where he was stabilized after three days. During a diabetes-education session, he met a man who had been using the same syringe for six months because of the cost. (Syringes are designed to be used only once, although many people with diabetes reuse them for short periods of time.)
"It's not any secret that people who have more money under average conditions live longer," Dix said. "Those conditions are multiplied when you're talking about having a chronic disease. The inequality is magnified."
He cites the price of glucose-test strips as one example. He said they cost $1 each in 1992 and cost the same today. If he tests his blood-sugar levels four times a day, he will pay almost $1,500 per year for glucose-test strips.
"No one can tell me those don't cost pennies to make," Dix said. "No one can tell me that we didn't pay for the research long ago.”¦There is no competition. So the taxpayer is being ripped off through the PharmaCare program, but mostly the sick are being ripped off."
A ministry spokesperson, Sarah Plank, told the Straight that the PharmaCare program spent $53 million on diabetes-related products in 2006, including $21.6 million on glucose-test strips. She said the strips, which are bought at retail prices, are also part of the review. "We are definitely looking at how we can achieve some savings," Plank said.
Dix noted that his disease has not prevented him from doing interesting things in life, including serving as the principal secretary to former premier Glen Clark. There are many other successful people with Type 1 diabetes, including actors Halle Berry and Mary Tyler Moore, and Vancouver police constable Ian Barraclough, the first police officer with the disease ever hired in Canada.
Dix said he's one of the lucky ones because he has a good job and can afford proper nutrition. "For the Type 1 diabetic, that's the whole game: the ability to balance good food and insulin."
James Hirsch, author of Cheating Destiny: Living With Diabetes, America's Biggest Epidemic (Houghton Mifflin, 2006), is another success story among Type 1 diabetics. A former reporter with the New York Times and Wall Street Journal, he decided at his mother's funeral to write a book about diabetes.
"She didn't die from anything related to diabetes," Hirsch told the Straight in a phone interview from Massachusetts. "She had cancer. But she had devoted a lot of her adult life to raising money for diabetes."
His older brother Irl, who was diagnosed with Type 1 diabetes in the 1960s, is a successful Seattle endocrinologist who treats people with the disease. At their mom's funeral, Hirsch recalls the rabbi saying how much his family had done for diabetes.
"It was a very generous comment, but it made me think, 'What have I done?' I haven't done anything except survive," he said. "At that moment [I thought], 'I'm going to write a book someday about diabetes.' I always saw the book as part of our family's contribution to the cause."
The book reviews the history of the disease, and the impact on people's lives, including Hirsch's six-year-old son, Garrett, who also has Type 1 diabetes. "I described diabetes in the book as an endless conversation with your own body," Hirsch said. "The reason you think about it all the time is that your blood sugar is a constantly moving phenomenon."
He also writes about research into the disease, focusing considerable attention on Dr. Denise Faustman. In 2001, she reported that her Massachusetts lab had successfully reversed Type 1 diabetes in mice.
"My parents were told in the 1970s that diabetes will be cured in five years," Hirsch said. "I came to that whole subject matter of 'scientific research for the cure' with a pretty jaded perspective. I understand the feelings of betrayal that a lot of patients have because so much has been promised and so little has been delivered."
Vancouver resident Colleen Fuller, founder of the Society for Diabetic Rights told the Straight that she is encouraged by Faustman's research. Fuller, an author and frequent critic of high drug prices, said that Faustman's emphasis on adult stem cells has put her in conflict with researchers who prefer using embryonic stem cells to try to regenerate beta cells. "If embryonic stem cells offer cures, that will be great," Fuller said. "Right now, I'm banking on the adult stem cells."
Verchere said that Faustman and others have performed a valuable service in demonstrating that pancreatic beta cells can regenerate when the immune system is suppressed in mice. However, he said there is a difference of opinion on whether those regenerated beta cells in mice were created by injecting adult stem cells into the mice or if they would have come back on their own because parts of the immune system had been blocked.
"That's where the controversy lies and where we need new research," he said.
Meanwhile, the New York–based JDRF International is promoting the creation of an "artificial pancreas", better glucose-monitoring, and the transplantation of beta cells into people with diabetes. Hirsch, who has criticized the JDRF International's emphasis on the word cure, said he strongly supports the organization's decision to fund research into the artificial-pancreas project and a continuous glucose sensor.
"These are not cures for diabetes," he noted. "But they do have the promise of improving therapy for patients."
However, Hirsch said he has concerns with the JDRF International's emphasis on islet-cell transplantation, which is occurring in Vancouver and in other centres. The term islet is used because the beta cells are found on islets in the pancreas. This procedure generated tremendous enthusiasm in 2000 with the "Edmonton Protocol", when seven patients were taken off insulin after receiving transplants and being put on immunosuppressive drugs.
"I think now it's clear that islet-cell transplants will not be the cure for diabetes," he said. "After three, four, five years, the islets wear out, so it does not represent a long-term solution. The fundamental problem with islet-cell transplantation is that it doesn't address the underlying disease."
At the March 10 JDRF Canada forum in Vancouver, Dr. Greg Korbutt, a researcher with the Edmonton group, explained the successes and shortcomings of islet-cell transplantation. He said that after three years, 50 percent of transplant recipients are still off insulin. However, after five years, only 10 to 15 percent of patients still don't need insulin. On the upside, he said that those who require insulin have better control over their blood sugar than they did prior to the transplants.
"It's still successful to some degree, but it's still not getting these individuals off insulin," he said.
Korbutt said the challenges include developing better immunosuppressive drugs, a shortage of pancreases for transplantation, and finding a better location for the transplanted cells than in the liver, where they are now stored in the body after relatively noninvasive surgery.
Hirsch said that it will require a "massive undertaking" to slow the onslaught of Type 2 diabetes (see page 48) and develop cures for both forms of the disease. He likened the challenge to former president Franklin Delano Roosevelt's decision to tackle polio in the 1930s. He said that what's needed is for a nationally known figure with the stature of Oprah Winfrey, Colin Powell, Bill Gates, or the president to focus everyone's attention on the epidemic.
"Right now, 4,000 Americans are diagnosed each day with diabetes," Hirsch said. "That's huge. What we know is the longer you have diabetes, the greater the risk you have of developing complications."
Hirsch said that he has encountered only two U.S. politicians who have given the diabetes explosion anywhere near the attention it deserves: Arkansas Governor Mike Huckabee, a Republican who lost 100 pounds after being diagnosed with Type 2 diabetes, and former U.S. president Bill Clinton, who also hails from Arkansas. Hirsch said that Clinton spoke in March at a symposium for global diabetes and acknowledged that he hadn't understood the magnitude of the issue when he was in the White House. Hirsch said that now, Clinton is directing some of his foundation's resources to the epidemic.
"My own hope is that at some point he bumps into his wife and he tells her about how serious diabetes is so she can raise the glycemic index on the campaign trail," Hirsch commented. "There are a lot of votes in diabetes."
Hirsch emphasized that he would tell this to any political candidate, no matter which office they were seeking in virtually any country in the world. "People care about this disease for obvious reasons," Hirsch said. "It affects them very deeply and profoundly. If a politician were to get up and start talking about ways to help people with diabetes–whether it's making sure they have enough money for their medications or ensuring that there are fresh produce stands in your neighbourhood–I think that message would be very well received by voters. You can win an election on a diabetes platform."
As a Type 1 diabetic, the NDP's Adrian Dix has an awareness of this issue that far exceeds that of most politicians in B.C. He said he'll be joining the JDRF Canada's annual walk on May 27. But will he be joined by MLAs who are willing to learn more about this disease, including the impact of insulin pumps on children with Type 1 diabetes?
"Here's a great improvement in treatment in that kids don't necessarily have to inject themselves every day," Verchere told the Straight, "but it's only available to the more better off. And you know, the same is true of some other aspects of care that the patients are on the hook for."
Verchere noted that better glucose control and more effective monitoring can delay and possibly even limit the likelihood of kidney failure, amputations, and cardiovascular disease. "I think you have to accept the up-front costs," he said. "There is a payoff for the government later on in that there will be cost savings. They'll be cheaper patients down the road."
So far, B.C.'s health minister hasn't been convinced of this. "We always try to learn from the health professionals as to what's effective and what's not," Abbott said when informed of Verchere's comment about the value of insulin pumps. "We certainly welcome his comment."
Simpson said she was delighted to hear that the ministry is evaluating the possibility of funding insulin pumps for kids with diabetes. "These are children, for God's sake," she said.