Post-its from Practice:
Fear still exists about HIV treatment amongst injecting drug users (Mar 2010)
Yesterday evening I knew it was bad news by the way all the wonderful receptionists collectively and sympathetically handed me an urgent fax. It confirmed that Alex, who had just been discussed at the hospital cancer meeting, had widespread metastases, with the primary as yet unconfirmed.
Alex has been a patient of ours for the last 15 years. He contracted HIV around that time from either sharing or having unprotected sex with his HIV positive partner. She had come here from Dublin in the early 1990s when the HIV rate in injecting was escalating, to seek treatment for both her HIV infection and her drug problem. Alex agreed to be tested and proved positive for both HIV and Hepatitis C.
From the outset he was completely against having active treatment or hospital involvement. He, like several other patients, had seen so many friends die with or without AZT and so he decided that the "ostrich approach" was best. As his CD4 count was over 800 at that time we agreed to monitor him and treat his drug problem.
Soon after his diagnosis, Highly Active Antiretroviral Therapy (HARRT) was introduced. This made a dramatic difference to many of our patients. I remember a dramatic decrease to the number of funerals I was attending: from many to just one the following year. We again talked to Alex about reconsidering his decision to reject treatment but he refused, even after his wife died from an overwhelming opportunistic infection.
Over the next ten years, as Alex's CD4 count fell from 800 to 120, we had this conversation again and again but he would not budge. His reply became "but I'm well and those tablets kill you." Arguments about his compromised immune system did not make him change his mind either. He remained well until about 18 months ago when he presented acutely with the worse seborrhoeic dermatitis that I had seen for over 15 years and a bad bacterial chest infection. Still he declined hospital and we treated him in the community. Then, just less than a year ago, he developed candida in the oesophagus and was not able to eat so agreed to go to hospital. While there, he was stabilised on HARRT and transferred to respite care to allow him get familiar with the regime. The HIV doctors and pharmacist were very helpful and agreed to support me in prescribing his HIV medication. He agreed to take this along with his methadone in the pharmacy.
Howvever, only one week after his discharge, Alex came to tell me that he no longer wanted to take his HIV medication. I had fallen for Alex the first time I had met him with his cheeky smile and his broad, almost incomprehensible Dublin accent. I almost wanted to punish him to try and keep him on the HARRT by refusing to give him methadone if he didn't continue with his HIV medications. I realised that that would have been unethical, and saw that in fact he had probably started it for us. He was fully aware of the implications of his decision, knew he was cared for and could reconsider taking treatment at any time.
Since then his health has been deteriorating, particularly over the last month. In this time his drug use has gone up but it took me until ten days ago to persuade him to be admitted, which was only due to the fact that his abdominal pain had become so bad that it could not be helped by prescribed analgesia and illicit opiods. We now know that metastases are the cause of his pain.
Evidence suggests that HIV transmission amongst injecting drug users has increased again since 2002 with prevalence in London of about 1 in 20. The UK figure is 1 in 73 with about one third of those IDUs being unaware of their HIV infection despite most of them being in contact with services and being tested . So it is clear that HIV has not gone away. We therefore need to continue to screen all people who use drugs for HIV and Hepatitis, and to provide sufficient injecting equipment.
However, not even a diagnosis made Alex accept treatment. In the surgery we have a large number of HIV positive patients. Across all groups most (70%) use both hospital and General Practice appropriately. On the whole there is reasonable two-way communication between specialists and us. One group (14%), which consists mainly of homosexual men, only really use the specialist services. There is also a third group (16%) consisting mainly of injecting drug users, who, like Alex, only use general practice. These latter two groups have both (thankfully) decreased from 28% and 25% respectively ten years ago (Ref 1). Perhaps this will mean that in the future fewer people will fear treatments and prejudice against people who both inject and who are HIV positive. I hope Alex gets another chance to reconsider but I fear he may not.
1. Shooting Up - Infections among injecting drug users in the United Kingdom 2008. An update: October 2009