Maybe some of you may have noticed that I haven’t written a post for over two months. Why this silence? Am I suffering from activism fatigue? Well, maybe a little. But the fact is that no matter how important ‘speaking up’ is to me, it is not possible to charge head down, like a bull at all times. Plus, life, and especially life with HIV it is not always very easy.
During Christmas I willingly took time off to recharge and visit my family in Italy. After Christmas my health started going down: a combination of stressful travel, with delayed flights and closed airports under the snow, a broken boiler with freezing temperatures, and norovirus creating havoc in my guts. I was in bed for over two weeks and then dragged myself back to work. My mood had turned to an extremely dark shade of blue. While the doctors were saying there was nothing wrong with me I was feeling totally crap. Mentally I was trying to organize my life in case of a severe deterioration of my health. Staying here? Going back to Italy? What abut changing doctors if I went back to Italy and the burden I would put on my family? If I stayed here who would cook for me, change my sheets, keep me company if things went really down hill?
Last week I went to hospital and by chance I discovered that the reason why the initial stomach flue has turned into chronic gastro intestinal problems was that I had been overdosing on Darunavir, one of the medications I need to take to stay alive. Since April last year the formulation of the tablet had changed, but the doctors and pharmacist, failed to inform me. So instead of 800 mg a day I was taking 1200 mg, uninterruptedly for 10 months This happened because the hospital in order to save money delivers me the medications (apparently if it does so they don’t need to pay VAT). So there was not a pharmacist handling me the drugs and warning me of the change. Cheaper medications come at a price. I really hope mine is not liver injury, which is a real possibility since my liver is also under the strain of HCV. I am awaiting more tests.
I feel relieved I found out what it was that made me feel so unwell, but I was pushed in a dark place. In spite the fact that doctors say we should now expect ‘near normal life expectancy’ as soon as something goes wrong, this voice inside my head goes: ‘Is this the beginning of the end?’. Scary.
Anyway the activist in me compelled me to make a complaint and ask to have a report from the hospital on what they are doing in order that this does not happen again. I also wonder how many others have had their drugs misdosed. All I have to say to others living with HIV is: always double check your dosage, don’t just rely on the doctors.
Within this personal landscape it is not surprising that yesterday’s headlines in front page of The Guardian ‘Worldwide drug drive could wipe out AIDS’ left me totally unconvinced. The article reports how Brian Williams, a professor of Epidemiology in South Africa, claims that by testing everybody for HIV every year and putting them on treatment straight away for the rest of their lives AIDS would be eradicated in 40 years. This is obviously not based on empirical evidence from a historical/ social/cultural study but on mere mathematical modelling. Taking ARV= Less Infectious Blood and Bloody Fluids= End Of The Epidemic.
Obviously I am concerned by such claims. First , as you have seen from this post, taking those pills for life is not a stroll on the beach. Moreover a merely ‘technological’ approach to prevention has a very limited chance to succeed on a practical and economical level. Over 14 years from the arrival of effective Antiretrovirals only 12% of people have access to it world wide. How would this huge scale up practically work? So far we can’t even reach those who are going to die in the next few months! Another important question is: what would the impact be on people’s human rights and quality of life? If you are interested im my indepth thoughts on this question here is an article I wrote last year on Treatment as Prevention.
Elisabeth Pisani, who, in my opinion , can often be quite controversial, and likes to provoke a heated debate, commented on it too and makes some very good points: One HIV Test Two Results .