I recently read a terrific new book about AIDS activism that has me very excited. It has powerful insights into the pharmaceutical industry, government regulations and the politics of activism that I believe can be applied to diabetes as well. The book, Impure Science: AIDS, Activism, and the Politics of Knowledge, is written by Steven Epstein.
The movement for AIDS activism began with what is now a historic demonstration. It was May 21, 1990, and over one thousand people turned out to demonstrate outside the headquarters of the National Institutes of Health (NIH).
The demonstration was the brainchild of activists who felt the scientists involved in AIDS research had taken 10 years and $1 billion to look for a cure, yet had turned up almost nothing. Only one drug, AZT, had been designated to treat AIDS, and it was faltering in clinical trials. The demonstrators turned out that day to demand that they – those with AIDS, and those closely related to the thousands of people ravaged by the disease – be included in the design of future research and treatment.
Activists were disheartened by the multitudes dying from AIDS. They felt that the “pure science” approach of elegant trial design and clean data was a limiting factor in the very real and desperate world of an epidemic.
The book shows that as the movement developed, pharmaceutical companies, doctors, activists, policy makers and researchers all maneuvered to protect their own turf. Profit margins, reputations, careers and the concerns of those fighting to keep themselves and loved ones alive were all at stake. While some fought for dominance, others were forced to struggle just to be recognized.
Activists got busy. They demanded that their voices be heard. They learned to function within the bureaucracy of the scientific community. They learned to speak the languages of virology, epidemiology and immunology, so that their voices would be taken seriously. And then they forced their way into the scientific conferences.
Many of the AIDS researchers had come no closer to the AIDS epidemic than counting T-cells in a laboratory. Demonstrators put a human face on the disease.
Through hard work, activists eventually won the right to take a seat at decision-making tables. This was due to their persistence. In doing so, they helped to revolutionize the way drugs are developed and approved.
Time for the “Democratization of Research”
In his book, Epstein makes a call to arms for the “democratization of research,” a potent idea that would greatly benefit the diabetes community as well.
Epstein writes, “(without) the activists, what sort of knowledge strategies would have been pursued? Pristine studies addressing less-than-crucial questions? … Inevitably, there are risks inherent in the interruption of the status quo. But these must be weighed against all other attendant risks, including those that might have followed from letting normal science take its leisurely course while an epidemic raged.”
As a result of the AIDS activists’ dedication and perseverance, the public is probably more aware of AIDS than any other disease. New drug therapies have been rushed to the market that are helping to slow down the progression of the disease and help those with HIV live longer, healthier lives. And people with AIDS now have a powerful voice in the political processes surrounding research and funding.
All of us in the diabetes community need to look at the AIDS movement as a lesson and an inspiration. In a few years, I would like to read a piece similar to this, but in the place of AIDS would be the word diabetes.