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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 .

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12 thoughts on “ARVs Trouble Me In More Than One Way

  1. Ciao Silvia
    era da un po’ che non ti sentivo,ma ti ho pensata moltissimo in questo periodo. Oggi ho letto il tuo blog e mi spiace tantissimo per quello che ti e’ successo,si in effetti un gran bel consiglio guardare sempre il dosaggio. E chi li guarda? Ormai dopo anni che prendiamo terapia, ci rechiamo in farmacia e portiamo a casa le nostre scatole di pillole per ingurgitarle. Bando alle ciance. Spero che ti rimetti presto. Un abbraccio e un in bocca al lupo!Vuoi tornare in Italia?

  2. Grazie Nicky,
    No non torno in Italia! Solo quando stavo molto male per un momento Ho pensato a le mie opzioni se dovessi deteriorare. Ma speriamo di non doverci pensare per un bel po’! Un abbraccione. Sx

  3. Hi Silvia, I read the FDA Literature on Prezista and found that in a study of Darunavir overdosage (higher than yours) there seem to be no problem; however there is no known antidote to get Prezista out of your body.

    I pray that you are doing well.

  4. Thank you for your interest. I am feeling much better now that I have been back on the normal dosage for a few weeks. All the side effects have subsided and I have the highest CD4 count ever… At least there were some positive ‘side effects’ too :-).

    I noticed you have a denialist blog. Please do not misquote me, I believe ARVs have played an essential role in keeping me healthy, and it is really unfortunate that the hospital has been negligent in how it handed the prescription. I have made a complaint and I hope as a result that any person who is given a new prescription will have a face to face conversation with a doctor or a pharmacist. Also Iam 100% Italian, not Ital-American! 😉 Sx

  5. I am (really)glad to hear that you are doing well.

    I would never misquote anyone, or take anyone out of context so please forgive me if I have, your “about me” doesn’t give the full admission that you are indeed 100% Italian, my bad.

    I don’t have a “denialist” blog, I am not “In Denial” about anything, however I am an HIV/AIDS Denyalist but that doesn’t mean I cannot communicate with you , we share a common bond. I have 12 blogs for the record.

    Ciao Bella! ( :

  6. So sorry you have gone through this . I was not well over Christmas, flu and norovirus and only just back up to speed and while I am on different HIV medication my hospital to save money also posts my medications to me without my having to go to a consultation.

    I have since the first been worried about the wizeness of this as things could move on with me or the drug and I may not know .
    But I am so glad you are feeling better now

    Love Veritee

  7. Me too!

    To quote the Who ‘I hope I die before I get old ‘

    but I am now 57

    And hope to live for a few years yet – as I hope so very much for you Silvia.

    But I always envisaged a lot of things if I did make it past youth , but what I never thought my life would include when ‘older’ was HIV!

    But as I was not diagnosed until 55 it does and that just goes to prove to me that anyone can get HIV.

    I – arrogantly perhaps – thought I knew everything there was to make sure that………….HIV never happened to me – how wrong can you be? Pride comes before a fall my mum used to say – and she was just so right !

    Age nor anything else is any protection if you do not protect yourself, every single day and with every single sexual partner even one of over 20 years in my case .

    So wish I had known that !!

    But I will live until old age and so will you S, I am certain.
    And if we don’t – well we will have made our mark,, if not a huge mark more than many and our lives will not have been for nothing or gone un-noted

    Love to Sv and all

  8. I am still in denial about old age, no matter what! Which means I don’t buy anti wrinkle creams and save money I can spend in good food and good wine 😉 Anyway thank you for your good wishes Veritee, and for your contributions. The truth is we are all going to die weather we have HIV or not, and none of us knows when that day will be. All we can do is attempt to live meaningful lives.

  9. Yes I totally agree – I am so in denial of old age too. No anti wrinkle creams for me either and a lot of wine!

    I am pretty surprised about what good shape I am for my age considering the way I have lived, plus now HIV – but believe me I have lived.
    Live well and how you wish to is what I aim to do.

    Yes and intend to live a very meaningful life

    Off to do a talk on HIV & support tonight – Easter Sunday? what dedication is that??
    Here : http://www.facebook.com/veritee?v=feed&story_fbid=108492562515782#!/event.php?eid=108596685825024&ref=mf

    Wish me luck?

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