Knowledge is Power

I was started on HIV treatment in 1998, just over a year after my diagnosis. I was still in Italy at the time and finding it extremely hard to come to terms with my diagnosis.

Treatment was pretty new then and in Italy there wasn’t any information available for patients. All I knew about treatment was an article I found in a magazine I was reading in the dentist’s waiting room. The article was an interview with Magic Johnson on a new ‘miracle’ cure for HIV. There was a picture which showed 10 different bottles of drugs. I kept the article folded in a secret drawer and I would take it out from time to time and look  at it with a sense of disbelief. Was it true that HIV could be treated? Would I be given the drugs? The rumors from the hospital corridors were that only ‘deserving’ patients – patients who could be expected to be compliant with this very expensive and complex medical regimen- would have access to it.

My CD4 count was rapidly declining and so the doctor informed me that I had to start treatment as soon as possible.

I wasn’t asked how I felt about it, or given any explanation on what was the aim of treatment, if it would have worked for me and how. I had no knowledge about the virus. I vaguely understood that CD4 were important for the immune system and I had never even heard of Viral Load counts or anything else. Obviously I was very anxious about this mysterious treatment.  When I dared to ask my doctor about possible side effects he shouted at me, annoyed: “Just fucking [sic] take it!”

His tone and attitude were telling me (or at least this was what I heard in my head): “You probably deserve to have this awful illness, you should be grateful we even bother to give you medication. How do you dare ask all those questions?”

I don’t know if it was the nerves, or the appalling communication skills of my doctor, I felt really confused, when I arrived home with all those boxes of pills, which I couldn’t pronounce the names of.  I had to hide the pills in fear somebody from my family would see them.

Anyway, I started taking the medications. It was a lot of pills. When I went to the first check up appointment, after a couple of weeks, I was feeling really awful, nauseous, and tired.

I told the doctor: ” I feel terrible, it is a lot of pills: I take 3 of these 2 of those and then this one on an empty stomach and…”

The doctor looked at me horrified:

“You are doing it ALL wrong! You have mixed the pills up!”

He called other consultants into the room, sent for a nurse…everybody started running around looking really worried and freaked out.  Apparently I had overdosed some medications and not taken enough of another.  It was a surprise to everybody that I didn’t have a really severe reaction.

The doctor start shouting at me ‘What did you do???! This is really dangerous, you know!” He asked a nurse to take my blood in a hurry. I started crying, in fear, terrified. I hadn’t even told anybody about starting treatment. I couldn’t stop the tears flowing. While the nurse was taking the blood she was trying to console me, telling how much she wished they would find a cure. She seemed the only human person there. I couldn’t stop crying. The doctor started telling me: “But, what is the matter with you?! I will make a referral to psychiatric department.” Somehow I managed to tell him through the tears that I didn’t need to go to a psychiatrist:  I was just scared. He decided to stop the treatment for a few weeks, and when I was started again later on they wrote everything down on a piece of paper for me. This time I took them right. It was really hard, 18 pills a day, some with food some without food. I had to wake up in the middle of the night to swallow some of them. Nobody had explained anything about the importance of never missing doses, in order not to develop resistance to the medications. So I just took them when I could remember.Sometimes I would miss two or three doses in a row.

I had minor side effects mainly a tingling feeling in my mouth, always thirsty, my skin was dry and flaky, and my lips chopped, my toe nail started growing inwards.  But I was lucky, those were all minor and they stopped when I changed treatment.  I was just really fortunate that in spite of taking Indinavir and d4t I never had any Lipodystrophy, which would have stayed even whenI switched treatment.

When I moved to London the year after I was told for the first time that I had an undetectable Viral Load and what it meant. It seemed like a dream. I started to understand how treatment worked, reading magazines and booklets I found in hospital. By  going to support groups at Positively Women I learnt from others how to take the pills, little tricks not to forget doses. I also learnt it was my right to discuss my treatment with the doctor and negotiate something that suited my lifestyle better. Thanks to the support of treatment advocates I asked my new doctor to change my treatment. She was initially resistant: her point was my ‘numbers’ were OK. She told me:

“I can not change your treatment because it is working”

“It is working for who? “ I asked.

I explained that taking 18 pills a day was impossible and I kept missing doses. After a lot of insistence from me I was finally moved to Nevirapine and Combivir, 4 pills twice a day. It was an incredible change. At last I was able to go out without massive pill boxes rattling in my bag I stopped worrying about  constantly missing doses and feeling I was my worst enemy, because of my incapacity to take the treatment right. .

I have been on treatment for almost 12 years now, and I have also become a treatment advocate. I try to support other women to learn as much as possible about treatment, so that they can be in control of their health.

The treatment I am taking now is really working for me, it is only once a day, and I have absolutely no side effects. It is almost a miracle and I feel really lucky to have now a doctor who really listens to my concerns and always discuss all aspects of my care with me.

The saying: “Knowledge is power” is particularly appropriate applied to HIV. Learning more about the virus and what I can do to counter act it has really helped me in feeling I have some control over HIV. I know the medical system has not overtaken my body and my life.

Supporting others about gaining more understanding of HIV & ARVs has also helped me increasing my sell-esteem and feeling I am a valuable member of the community of PLHIV.

If you are interested in becoming a treatment advocate or just know more about treatment, go to IBase. They organize great trainings which are all run by people living with HIV who have developed an in-depth knowledge about treatment and also know how to make things easy for those of us who don’t feel too confident about reading medical research.

Even if you don’t want to become a treatment advocate, or you don’t live in the UK,   IBase has a great website were you can ask questions on line and download lots of booklets and resources, completely free for people with HIV.

GPs and Dentists’ attitudes to HIV

 As part of my work at Positively Women this year I have been running some HIV awareness trainings for dentists and GPs in the London Boroughs of Hammersmith and Fulham.

 The trainings had been designed following a small research we did among people living with HIV in those boroughs. We distributed questionnaires, ran focus groups, and the findings were quite shocking

 Even if 96% of people living with HIV are registered with a GP,  60% would not tell their GP of their HIV status, and 33% perceive their HIV status prevents them accessing effective care from a GP.

Looking at PLHIV accessing dental care, the picture is even gloomier. Only 65% of people living with HIV, who participated in our research, are registered with a dentist

Moreover 55% would not tell their dentist about their HIV status.   Overall 53% of our respondent told us that they felt that their HIV status was preventing them accessing dental care.

 The positive people involved in responding to the questionnaire and the focus groups suggested that to improve the situation GPs and Dentists should receive more trainings around HIV and stigma.

 So I designed a module that could be delivered in about an hour which would go through the basics of HIV awareness and address stigma. GPs and Dentists have very busy schedules and I needed to have something that could be delivered during their lunch breaks.

 We offered the free training to most GPs surgeries and Dentists in Hammersmith and Fulham. Only 4 surgeries replied they were interested in attending even if we were offering  it for free and  to be delivered at their premises.

 I went on to deliver those few trainings, and it was one of the most difficult experiences in all those years that I have been an HIV and Sexual Health trainer.  

For the first time I found myself addressing a definitely unsympathetic crowd.   In spite of my quizzes, DVD with people talking about living with HIV, case studies, I constantly had the feeling that they were thinking that I couldn’t possibly know more of them, who were medically trained.

Some dentists felt it was totally justifiable to always book  HIV positive patients last, because a special cleaning was needed, and they also suggested that it would be better to have a ‘special room’ to reserve to treat HIV positive people. They seemed unmoved by my questions: What about the fact that a third of those who live with HIV still haven’ t been tested? What about other blood born viruses such as Hepatitis C which are much more endemic and contagious? Shouldn’t everybody be treated as if they were potentially contagious? What are Universal Precautions recommended by the World Health Organization for?

 Another shock came with a group of GP’s. I had a question in my quiz which asked what the probabilities were for HIV positive women who have access to ARVs and all the interventions to reduce transmission to have a healthy baby. Most of them ticked the box 50%, while it is 99%!

 Afterwards they didn’t even let me play the DVD where people talked about stigma, and when I asked them if they understood the role that stigma played in stopping people accessing health services they corrected me saying: ‘Imagined stigma…’. I felt like shouting: “Well I  have lived with HIV for 13 years and I can be pretty certain that there is nothing imaginary about the stigma and discrimination many of us experience.”

 I left the GP training fuming. I kept thinking, if these are the attitudes of well educated health professionals, how much worst can it be among the general population? How much more do we need to speak up, be visible and educate our communities for ignorance and prejudice to be over come?

HIV in Sicily Part III

My third story from Sicily has come to me through the world of blogging. It is the story of Niccky. In spite  a traumatic diagnosis and experiences of discrimination and mistreatment by  the Italian health system Niccky , through meeting other positive people on line finds a successful way of living with this illness.

 Niccky has a blog in Italian that has become a focal point of information and support for people living with HIV in my country and up to today has received more then 32,500: hits: http://sieropositiva.splinder.com/

 Here is Niccky’s inspiring story:

 “A young woman, on her 37th birthday receives the news: HIV POSITIVE.

 I go to A&E with a severely sore throat and high fever. They observe me, they ask me to sign a consent form for confidentiality, the papers to take an HIV test. I thought it was just a standard procedure…never would I have imagined that there were reasons for the diagnosis…

 They give me an anonymous room, with three beds. I take the central one. There is a private bathroom. It is the last room at the end of a long corridor. Once in a while someone enters to give me antibiotics, take blood, set up the drip with pain killers.  After two days I start to be able to drink half a glass of water, which was impossible a week ago. Only a few drops of water would burn my throat with a tearing pain. I couldn’t swallow food. But after two days even the light soup made with vegetable stock and small pasta seems one of the best gourmet dishes I have ever had.

 I kindly ask if anybody could tell me the reason for this horrible bout of flue. A kind nurse, the son of my parents’ neighbours, tells me to wait. They will give me the results of the HIV test at night.  With disbelief I start to understand that that’s the key: the HIV test. I had heard about AIDS in the ‘80s with the ads: “If you know it you avoid it”. But did I know it? No! So how could it choose me, this virus?

 To stop my thoughts going round my head like a crazy merry-go-round I start phoning around. A girlfriend reassures me that as usual in Sicily they get things wrong. I call my partner and I give him this input to terminate our relationship which  had been dragging for months like a weight. And I am left alone with my thoughts in that squalid room, until somebody calls me.

 A small woman in a white gown:

 “ Ms Niccky they are waiting for you at the ward…”

 “OK I am coming, straight away…here I am”

 Here we are, the damned results. Here is the news that can put my life, everything I have done, my studies, upside down. I ask the woman to help me because I have to drag the drip and was still feeling really weak…I couldn’t make it by myself. But she refuses “I am sorry Niccky, but how do I know you don’t have AIDS?”

 Bloody witch, she leaves me by myself. I struggle to get up and to drag the pole with the drip hanging. I am propelled by the anger and I walk through that corridor that seems endless.

 I knock at the door. He was there, waiting for me. I sit, looking for a comfortable position for the pole with the drip on my left arm. I look at him, he looks at me. We look at each other without speaking.

 The results.

 The doctor looks at me and scans inside my being. We stay looking at each other for a few minutes.

 “Excuse me…so?”

 “So what?”

 “The test… The results”

 “What did you think? That HIV would spare you?”

 HIV-spare, spare-HIV, HIV-AIDS, Nooooo! I can not believe it, this happened to me.

 “May I ask what kind of life do you lead?”

 Fucking bastard, I am a student and I work to support my studies. I work 10 hours a day in a pub. I take the bloody pole where the drip hangs and I get up, while my legs are shaking. My thoughts are fixed on one word. When? The doctor tells me I will be immediately discharged. There is nothing that can be done in the hospital. I will continue my cure at home. I should look for a consultant specialized in infective diseases.

 I walk back through the corridor, enter the room, pick up my things and go home. I find my family waiting, they are also waiting for the results, like when I used come back from University exams with a first, and we would celebrate. But this time there is nothing to celebrate. So?

 I am HIV positive! But you have to promise you will not cry. They can not keep their promise: a waling choir, holding back the sighs, the tears. Looking at them I promise myself I would never cry, or give up in front of my family. I am strong and I will win this battle that life has reserved for me.

 I am HIV+! I look back through the years and the only person I can think of is that vermin! That despicable man who made me fall in love and then locked me up in the house, because he was excessively jealous. That time in my life that I wanted to forget at any cost, and now comes back to me. It is like a pot of boiling water, I try to put a lid on it but it still overflows. Oh my God! Now I understand his words, what he was referring to…those enigmas, those excesses, there was always a hidden double meaning…But never had I understood the truth. Carefree times. Delirious times. Elusive moments. Bodies entangled under the sheets.

 I can not believe it! But yes, it is written on this piece of paper. HIV POSITIVE.

I don’t know what it means to be HIV positive. I think life will end after this damned written word: POSITIVE. But I can not afford to think why…I can not afford to go back to the past. Fortunately that relationship ended 10 years ago, and the HIV has only appeared now!

 Google.

 I look up those three shaky letters: H  I  V .

 Human Immunodeficiency Virus, from the English language. It is the virus that causes the Acquired Immunodeficiency Syndrome.  It is subdivided in two branches HIV-1 and HIV-2. The firs one is found mainly in Europe, America, and central Africa. HIV-2 is instead found in Africa. But who cares? How long will I live? Will I suffer? Will I make it? So how long have I got to live?

 I had 4 Elisa tests: one in hospital, 2 in private clinics, the last one in the hospital of another city. All with the same result. On one hand I could understand that there was the possibility that I really was HIV positive , on the other hand I only wanted to wake up from a bad dream, I wanted to believe it wasn’t true. At the fourth one I said: that’s it. I am HIV+ and I have to get out of this anguish.

 First stop: information on HIV, second stop to talk and to confront myself with other people living with HIV.

 Internet was like a father I looked for anything in it. I spent my first New Year Eve on line, between truth and misinformation that internet offers.

 Second stop I meet a fantastic person, a woman who had been HIV positive for 20 years. Manuela is 47, her face is emaciated, but she talks to me calmly. She listens to me. She talks freely about HIV. She encourages me and gives me practical suggestions on how to deal with things like Lipodystrophy , which can be brought up by the therapy, which I am already on. She tells me about the Metabolic clinic in Modena, and to deal with the long waiting list, she helps me making a booking immediately. I feel full of information on how to deal with the virus that is inside me.

 29^th January

 The therapy is given to me accompanied by the sound of the consultant’s fists on the desk. He is telling me with a firm tone that I should wait. According to the guidelines my CD4 should be around 200 to start therapy and I still am at 250. I don’t give  a shit about the numbers. I want to stop this virus that is replicating inside me. Nothing is better then to start the therapy. The therapy is not a big obstacle. Sure I am a little scared of the side effects, but the will to feel better straight away is stronger. The consultant scribbles on a series of documents, including an exemption of charges. In Italy your Antiretrovirals are free. You go to hospital and they give them to you.

 On a piece of paper is written: Combivir twice a day, Susitiva once a day. It is only 3 pills. Nothing compared to the 14/17 tablets people took in the ‘90s, a huge step forward.

 The drugs spend one week on the bedside table. They look at me, I look at them, I scan them. I read the paper with the  instructions and possible side effects several times.

 I start on them the 29^th of January. One month after discovering I was HIV positive. The 29^th of January is the day my brother was born and died, a way to put myself in the hands of a loved one.

 After taking the first morning pill I wait full of anguish for the side effects, but nothing happens. The evening pill, Sustiva, throws me off centre completely and screws up my routine. I am really irritated. I need to go to bed really early to counteract the daze the pill puts me in.

 After 7 months

 I am an endless mine of information on HIV. Thanks to the therapy I feel great, even after the first month. I feel a new person.

 Life knows how to wait for the best moment to screw you up, but the mess life offered me is a gift that allows me to say yes to change.  Objectively nothing has changed about my physical person, but this experience has thought me how to grow, how to accept everything that I used to undervalue, to take for granted.

 While I was outside of Sicily I manage to see a doctor who changes the Sustiva to something that doesn’t give me side effects. Sometimes I have bouts of Herpes, it comes and goes. But apart from this everything goes well. So I start my blog… “