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How do you get a giant pharmaceutical company to listen? Make a lot of noise, say the founders of three patient advocate groups that formed when animal insulins were pulled from the market in Europe and North America.
Novo Nordisk spokesperson Susan Jackson claims that company "policies on insulin have not been impacted by patient advocacy groups." Dr. Matthew Kiln, London physician and co-founder of England's two-year-old Insulin Dependent Diabetes Trust (IDDT), thinks differently.
When IDDT organizers circulated surveys from 600 patients who said they had experienced problems with human insulin, Dr. Kiln believes Novo, which sold $1.2 billion worth of diabetes care products in 1995, had no choice but to respond-they promised to keep animal insulin on the market for at least the next five years. "Before, they hadn't made any guarantees," he said.
"The drug company is in an awkward position," Dr. Kiln added, "if they withdraw animal insulin now they'll have egg on their faces." That was the plan all along, he says-"to make sure that animal insulin is still available."
This is the common cause that unites these three independent groups: the IDDT, the Canadian Committee for Diabetic Rights and the Swiss Patients Association for Preserving Natural Insulin. All believe that human insulin may have serious side-effects for some people. But it's not so much the potential risks associated with human insulin that drives these activists; it's more their firm belief that people with diabetes should be informed and have a choice. It shouldn't be the drug companies that decide which insulin you inject.
Home-Bottling in Berne
"We do not want to be overrun by human insulin," said Dr. Arthur Teuscher, a long-time Swiss physician who founded the Swiss Patients Association in 1989 for fear that animal insulin would be eliminated entirely in Switzerland.
Dr. Teuscher, who has over 40 years of experience with all different kinds of insulin, believes human insulin is to blame for hypoglycemia unawareness-an abrupt onset of hypoglycemia without the typical warning signs. As the first physician in the world to switch his patients from animal to human insulins, Dr. Teuscher was particularly dismayed to find that 36 percent of his patients suffered such a loss in warning symptoms when they took human insulin.
Having experienced a whole host of troubles after switching, one disgruntled patient who had been using animal insulin for 20 years stormed into Dr. Teuscher's office, slammed a vial of human insulin on his desk and said, "I've had enough of this stuff. I want my old insulin back!" After this particular incident, Dr. Teuscher said, many patients came forward with similar complaints.
So when Novo Nordisk, which enjoys a 95 percent share of the Swiss insulin market, pulled the only short-acting animal insulin in cartridges for use in a pen, Dr. Teuscher did not wait to respond.
Why not bottle our own animal insulin, he thought? Using Novo Nordisk animal insulin (still available in vials) and emptied pen cartridges, Dr. Teuscher and his Swiss Patients Association began preparing animal insulin for use in pens at a university pharmacy in Berne.
Logistics are tough, he says-home-bottling is "a little medieval"-but Dr. Teuscher hopes to demonstrate to the drug companies that the need for animal insulin exists. Roughly 60 percent of Europe's insulin users rely on pens to inject insulin, compared to only 1 percent in the U.S., according to a Knight-Ridder business report. "We cannot wait until an insulin disappears; we have to start early to pressure insulin manufacturers to keep making animal insulin," Dr. Teuscher said.
He admits that the majority of Switzerland's 40,000 people with diabetes who use human insulin say they have no problems. But he wonders if these people might notice a change for the better if they switched to animal insulin. "There are more severe hypoglycemic episodes now with human insulin than in the old days" when animal insulin was the mainstay of insulin regimens, Dr. Teuscher said. "We want to warn people who do not tolerate human insulin. We want to protect the interests of our patients."
Making a Case for Animal Insulin in Canada
Patient advocates in Canada believe there is power in numbers. Teaming up with their country's largest diabetes organization has given the Committee for Diabetic Rights (CDR) the money and manpower they lacked on their own.
When animal ultralente was pulled from the market in Canada, CDR advocates vigorously lobbied the Canadian Diabetes Association (CDA) to put pressure on the drug companies and to recognize the potential risks associated with human insulin.
Though animal ultralente is still unavailable in Canada, Jaqui Roland, co-founder of the CDR, regards CDA's willingness to work with their organization as a success in and of itself. "The CDA has acknowledged that human insulin has side-effects. They acknowledge that there is validity in our belief that not all diabetics should be switched to (human insulin)," she said. The CDA was also won over to the CDR's assertion that both animal and human insulins should remain available, Roland added.
Working together has meant publishing articles about the human and animal insulin debate in the CDA's publication, Canadian Diabetes, which has a nationwide circulation of 5,000. "The biggest thing is dissemination of information; there just has to be more of that," Roland said. "A lot of people would get involved if they knew more. That's why we work with the CDA."
What really irks Roland is the fact that Novo Nordisk, also the main supplier of insulin in Canada, keeps a stash of animal ultralente available only to people who provide a letter from their physician. This proves the drug company's awareness of the insulin's value, she says, and yet they still keep it off pharmacy shelves because it may not be profitable.
"Novo Nordisk knows there are problems for people who want to use animal insulin, but they say (its removal) is strictly a financial decision," a frustrated Roland said.
Getting the Word Out
Newsletters are a popular way for these activist organizations to reach the masses. The IDDT publishes a glossy, 16-page quarterly newsletter about the latest happenings in diabetes and sends it to some 800 subscribers, according to Dr. Kiln.
The newsletter "has been extremely informative," says Liverpool subscriber John Carrier, who has had diabetes for 25 years. Carrier said he suffered from bouts of hypoglycemia unawareness when he switched to human insulin, but his doctors refused to acknowledge that the insulin might have something to do with it. "The medical profession was turning around and saying to me `it's your problem; you're doing something wrong.'" He said he had to beg his doctors to put him back on animal insulin.
Tired of having his concerns ignored or, worse yet, ridiculed, Carrier was thrilled to find out about the IDDT. "The newsletter was like a breath of fresh air. They knew the problems I was having. There was somebody out there listening to what I was saying," he said.
Wanting to share the new-found information source, Carrier tried to distribute the newsletter at a local diabetes clinic, but a disapproving nurse confiscated them. "She told me she had 15 years of professional experience with diabetes, but I said 'that's fine, but do you have diabetes?'"
Dr. Kiln said this hostile attitude to the IDDT is not uncommon among the medical establishment. "They think we're trouble makers. They think we're trying to get human insulin off the market, which isn't the case at all," he said, adding that clinics won't allow them to put up posters saying that there may be problems with human insulin.
It's not as though Dr. Kiln, who also has diabetes, is a radical. He served on a team of researchers investigating potential problems with human insulin for the British Diabetes Association (BDA). When the BDA disbanded this committee, Kiln co-founded the IDDT because he knew the important questions had not been answered.
He knew from personal experience. Kiln said he nearly died a few times after suffering from severe nighttime hypoglycemic attacks while using human insulin. "After a year with human insulin, my control became worse and worse, but my diabetes specialist didn't seem to think there was a problem." Luckily, as a physician, Dr. Kiln could take matters into his own hands. "I just changed myself back (to animal insulin) and found that things got much better."
He knows that not everyone is so lucky; they can't diagnose and prescribe for themselves. For this reason, getting the word out to as many people as possible, educating them about the disease and its treatments, is of utmost importance.
All three groups, which rely on volunteer help, have been savvy about spreading the news. Dr. Teuscher's Swiss Patient's Association also publishes a regular newsletter, called The Free Choice of Insulin, which goes out the group's 300 members.
Roland said her Canadian organization was originally formed to contact only people affected by the withdrawal of animal ultralente. Later they expanded their focus to include all of Canada's 20,000 animal insulin users.
By broadening their scope, they attracted more interest. She hopes more people with diabetes get involved and exert their influence as consumers. "Today it's animal ultralente," Roland said. "But who knows what it is tomorrow? It could be your kind of insulin."
Diabetes Health is the essential resource for people living with diabetes- both newly diagnosed and experienced as well as the professionals who care for them. We provide balanced expert news and information on living healthfully with diabetes. Each issue includes cutting-edge editorial coverage of new products, research, treatment options, and meaningful lifestyle issues.