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The British Diabetic Association (BDA) has been accused in major British newspapers of failing in its mission of advocating for people with diabetes, by hiding information about human insulin's harmful effects on some people.
The British press has covered the issue of adverse reactions to human insulin since they surfaced, around 1987. British people organized and saved animal insulin from its threatened withdrawal by insulin manufacturers. Now, beef-pork insulin will soon be taken off the U.S. market, but there has been no similar national press coverage, and this insulin will soon disappear completely.
According to the March 9 Guardian, a major British newspaper, the BDA initiated a study on human insulin during the early 1990s. Because its chief investigator was Dr. Natasha Posner, it is popularly known as the Posner report. After the investigation, Posner revealed that 10 percent of people with diabetes faced danger from human insulin.
The BDA chose not to reveal these conclusions immediately, because the story was "just too alarmist." Instead of being published on its own, it was part of a larger booklet on animal insulin, which went out as a supplement to the BDA's bimonthly publication Balance.
Matthew Kiln, a London general practice doctor who has type 1 diabetes, and the Insulin Dependent Diabetes Trust (IDDT), an organization dedicated to the preservation of animal insulin, say that the BDA failed the very people it exists to serve.
Human Insulin-The Evidence
The study on human insulin was prompted by 3,000 letters to the BDA from people complaining of problems after switching. The BDA appointed two independent researchers to analyze the letters. The researchers confirmed that, after transferring to human insulin, half the people were frequently passing out from hypos without warning. Other reported side effects were convulsions, losing consciousness at night and even memory loss.
According to the Guardian story, people's lives were drastically changed when they switched to human insulin. The story says that because of their actions on human insulin, some lost their jobs, suffered personality changes, had been refused renewal of their drivers' licenses, were arrested by the police, and even instigated family violence.
Kiln, normally a gentle, mild-mannered person, acted quite differently on human insulin. He hit his wife, his parents and even his friends. He had never done anything like this before, and hasn't done it since he switched back to animal insulin.
"I went through a personality change," Kiln recalls in the March 23 Daily Mail, another British newspaper. "[My wife] Laura pleaded with me to change my medication or threatened she would leave. Thank God, I was able to change back."
Kiln is fine now and back on animal insulin, but he is angry at the BDA for choosing to overlook or diminish what he sees as a huge problem.
Kiln told the Guardian, "The association has failed in its duty to protect and represent the interests of diabetics by not publishing the committee's findings in full." He added that the BDA's job should be to educate people that human insulin has side effects for some. "I and other doctors who understand this issue have been quietly switching some patients back to animal insulin to avoid the problems, but thousands of people are suffering from lack of choice."
BDA: We're On Your Side
Under these accusations, the BDA defended itself, saying it agrees that people should have insulin choice, but the report, published out of context, was the wrong way to do it. BDA's head of diabetes care services, Simon O'Neill, says in the Guardian, "The message of the Posner report was right, it was just too alarmist, but it is a message we have disseminated. It is a message we're still trying to get out. We've campaigned to stop animal insulin being withdrawn. Matt Kiln and we are on the same side."
BDA media relations officer Bill Hartnett told DIABETES HEALTH of one more reason the report was withheld. According to Hartnett, when the report surfaced, the BDA was receiving far fewer telephone calls about human insulin problems. Hartnett says the BDA took this to mean that people were having problems only during the initial "transfer period" from animal to human. Because it wasn't getting as many complaints, the BDA concluded that it just took a while for people to get used to the human insulin, and that after a brief adjustment period, things smoothed over.
Nonetheless, the BDA did petition the insulin manufacturers in 1994 to keep animal insulin on the market, urging the companies to "give people with diabetes the freedom to manage their condition in the way that suits them best."
Although the BDA and other advocates' pleas were heard, British animal insulin activists are not resting contentedly. Recent announcements of animal insulin withdrawals in the United States, Canada and France seem to have rekindled the activists' fire. Novo Nordisk says that it will continue to make animal insulin in places where there is a demand. Kiln and the IDDT say they will work to insure that, in Britain, that demand is voiced loudly.
0 comments - Jun 1, 1999
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.