"WAITING IS HARD WHEN TIME'S RUNNING OUT": Tony Whitehead describes his experience of waiting for 3TC

"WAITING IS HARD WHEN TIME'S RUNNING OUT": Tony Whitehead describes his experience of waiting for 3TC

AIDS TREATMENT UPDATE, August 1995
Tony Whitehead

Ten years ago when AZT was developed the drug received enormous publicity in the medical press, the papers and on the financial pages. Some of this was genuine news - it was after all the first drug that showed some anti-HIV activity. But a lot of the publicity was drug company hype aimed at the share price and future profits when industrial production came on line. So people with AIDS were blitzed with the hype only to be told that AZT wasn't available to meet demand. I remember that time vividly because although I was well, my then lover, George, was not, and we were desperate to get hold of the drug for him. It seemed to be his last and only hope. In the public forum of AIDS activism we campaigned as did hundreds of other people here and in the US. But in private we could only sit and wait and hope, conscious always that the clock was running down.

We were lucky. St Stephen's, now the Chelsea and Westminster, was in the forefront of HIV work and better placed than some other centres to access supplies. AZT seemed to help for a while and we were grateful for every new day.

WAITING FOR 3TC

Today, for AZT read 3TC. Again workers in the field are very optimistic about its effectiveness and people with AIDS for whom other antivirals are no longer effective view 3TC as their best chance. I am now among their number and waiting in the queue.

As readers of AIDS Treatment Update may know, that queue is very long. When I was recently in hospital for treatment, the man in the next bed told me he had had to wait 16 weeks for the drug. In that time his KS had developed so rapidly, his legs were black. He blamed this on the long delay and was very upset and angry.

Years of living with HIV and working in the field have armed me with a big dose of scepticism about claims for new drugs and treatments. There is no way of knowing whether prompt treatment with 3TC would have helped prevent the spread of KS in this case. But such rationalisation doesn't entirely insulate me from the cycle of hopes raised, delayed and denied. In my case it's CMV that is running riot. Most of the sight in one eye is lost and there is infection in the other eye. I have tried most of the available treatments and they have proved to be of only temporary effectiveness. I am now about to undergo injections of ganciclovir directly into the eye.

I can't help thinking that if I were taking 3TC it might give my immune system a boost that would aid the effectiveness of the CMV treatment. It might also stem the growing list of other opportunistic infections I have already developed. But like everyone else I have to wait and I don't know for how long, or what might happen in that time.

STRAINED RELATIONS?

There's another thrust to this story. 3TC is available via clinical trials currently underway in the UK. However, the exclusion criteria of these trials prevent many of the most seriously ill people from participating. My partner is on one of these trials, but I was unable to join. Since the trial is randomised he may or may not be getting 3TC but I want to believe he is. Such a situation could give rise to tensions between partners and friends, where the person who is less ill is the only one with a chance to receive 3TC. In the case of my partner and I, there have been no such difficulties; after so many years working in HIV I understand the nature of such trials and accept the situation. But not everyone has my background or experience to come to terms with such a complex situation.

Waiting is hard for most people and the more you are conscious that time is running out, the harder and more painful it becomes.

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Always watch for outdated information. This article first appeared in 1995. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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