AIDS activists were trailblazers
Margot James praises the input of gay AIDS sufferers in gaining treatment for the disease and campaigning for support in other medical areas.
Last month’s 16th International Aids Conference in Toronto is worth reflecting on in light of the last two decades.
When I started my healthcare PR business in the mid-eighties few of us had heard of HIV and Aids.
That changed swiftly and the disease became a death sentence of terrifying proportions.
The pharmaceutical industry developed medicines that transformed Aids from a terminal illness to a chronic disease in a very short timeframe. At least for those living in the developed world.
Another transformation occurred on route, and that was the evolution from the ‘accepting patient’ into the ‘demanding consumer’ of healthcare.
Gay men were undoubtedly the catalyst for this movement. When it looked as if Aids was going to be dismissed as the “gay plague”, with scant attention devoted to getting treatments to those whose lives were threatened, gay men got organised.
Groups like the Terence Higgins Trust and ACTUP were trailblazers for a new kind of pressure. For the first time a group of people suffering from a life threatening illness were not lying down and taking whatever was on offer. I worked on the launch of the St Stephen’s Aids Research
Appeal in 1990.
Part of that launch included a state of the art public information service.
Gay men were getting informed, so much so that they ended up knowing a lot more about the experimental treatment options under investigation than did most doctors.
These pioneering men were the forerunners of what the Department of Health now laud as “expert patients.” They had to do more than get informed. They had to lobby hard for the money to go into making triple therapy widely available to those in need. Money was eventually prized out of the system but not without a fight.
Many other groups that champion people’s right to better healthcare have taken a lead from the experience of Aids activists.
The fact that so many more women can now access the drug Herceptin for breast cancer is testimony to the strength that can come from campaigning.
I am still using the knowledge I gained during this era as I campaign in support of hospitals, wards and other medical centres of excellence that are now threatened with closure under this Government’s dramatic cutbacks to front line NHS services. In defending people’s right to decent health care we can never be complacent.
Margot James is Conservative Party Vice Chairman.
This article first appeared in the September issue of The Pink News which is out now