I was living in Auckland, NZ when I was diagnosed with HIV in the mid 90s and the prognosis was still, even then, pretty much terminal. AZT was the only treatment prospect and it’s toxicity seemed at least as problematic as HIV itself.
The trick seemed to be a balancing act – measuring the decline of CD4s against the arrival of much better medication. When my CD4s finally went below 350 and I began to develop opportunistic infections the best medication on offer had not been approved in NZ but had been in Australia. I sourced some through a largely gay HIV/AIDS organisation in St Kilda, Melbourne. The meds were remainders or unused and returned drugs from men who had died or were unable to continue with them.
The organisation redistributed these meds in what I think was a good ethical gesture though I’m unsure of its legality. The meds were free and posted to me monthly in Auckland and I think this was technically illegal – they hadn’t been approved for use yet in NZ. They soon were and I became able to receive them through the infectious diseases clinic at Auckland Hospital. Organising the drugs with the treatments officer in St Kilda was a huge relief. It’s difficult to overstate the value I attached to them, despite side effects. And sourcing them through a peer-based organisation was one of the smartest things I did, it established a necessary relationship that became the template I would continue to use in all my subsequent retainment in medical care.
It has always been important for me to compare information from medical specialists with community HIV/AIDS groups I think mainly because they have had such a critical role in disseminating the best information soonest and framed to suit me and obviously they have such a highly vested interest in having the best information.
Later I moved to Melbourne and after a period it I developed resistance to a couple of the meds I was on and this gave me opportunity to take a treatment interruption. My CD4s had recovered to between 500 and 800. I felt some degree of disappointment that they hadn’t climbed higher and never felt especially in the clear and always had some anxiety about them dropping. A treatment break provided me with a welcome opportunity to be free of the side effects of the meds. These were mainly severe gastro problems and exhaustion.
But the interruption also left me anxious about how long my CDs would remain okay. I took the opportunity to travel to London. I made a few overtures about finding where I could receive treatment in London as a foreigner, and also started investigating the very latest treatments that may have been available in London but not yet available in Australia. After few months I could detect a sort of ‘drag’ in my body, a mental and physical lethargy, and also noticed the reappearance of fungal infections that suggested my immune system was beginning to struggle again.
I hooked up with the University College of London near Oxford Street who claimed not be immigration police and accepted me without looking at my immigration status. The college was excellent and I was made really welcome and completely assured by their medical expertise that was developed from having such any enormous and varied HIV caseload. I was also equally assured by their patient centred ease – they didn’t present like a medical monolith. And yes, my CD4s were declining and a new regime of meds was suggested and I began taking it. The CD4s recovered and the infections diminished.
The new meds were available in Australia when I returned. This was a big relief. But I began to be strangely chronically ill. This was assumed to be HIV related. Later, it was found I had chronic Hep B. I had been vaccinated against Hep A and B before travelling to London but the B vac possibly failed because of my impaired immune system. Because I had been vaccinated for Hep B it was discounted as a possibility and not tested for. It took some time for the diagnosis to be made – the suggestion to test for Hep B was in fact made by a nurse with a long association and close proximity to symptoms through caring for patients with HIV and Hep B and C. The Doctors were surprised but relieved to have the infection diagnosed. A knew combination of four anti-viral drugs did, after several years, ultimately clear the Hep B and allowed my CD4s to climb above 800 for the first time and keep climbing to between 1000 and 1300. My viral load has been undetectable for about ten years.
Beginning treatment, remaining in care and paying attention to the care has been critical – first it’s kept me alive and then I have been managed through a treatment interruption, and a restart along with the extra development of Hep B. It has often been exhausting but I wouldn’t be where I am now without the astonishing concern and skill I have had from many dedicated people.