Inspiring

Last week at the  Treatment Advocacy training organized by Ibase that I am attending we had a very special speaker: Vuyiseka Dubula, a South African woman who is now the General Secretary of TAC (Treatment Action Campaign).

Vuyiseka spoke of her journey from being diagnosed really young in Khayelitsha, a very poor area of Cape Town, and how joining TAC and becoming a treatment activist changed her life. She has had a baby in 2006 who is HIV negative and she is now part of the leadership of TAC, having started as a volunteer and a receptionist. You can learn more about her and other HIV positive heroes here.

Three key points from her long speech were:

1) To develop support and recognition as and advocacy group it is essential to have a campaign with clear objectives

2) A successful campaigning organization needs to have a strong grassroots foundation. It needs to provide, education, skills and support in the community. Even if the organization disappears or is exiled, the work at the grassroots level will stay and grow. This was something TAC learned from ANC (African National Congress), during the struggle against apartheid.

3) Ultimately our goal is to have en equitable health system. We want justice. We are starting by fighting for HIV medication, but it is a much larger struggle. The competition between AIDS services and primary health services is not a real issue. We are developing a better and more just health system by advocating for HIV treatment. It is all part of a larger struggle for justice and affordable and accessible health for all.

Vuyiseka will be talking on ‘Debunking Denialism an the Fight for Treatment’ at Amnesty International in London on the 11th of November at 7 pm. For more information check Amnesty International.

Zackie Achmat on Activism

On Wednesday 14th I went to listen to a lecture by the legendary  South African HIV+ activist Zackie Achmat organized by the Monument Trust at the National Gallery, London.

Zackie was a founder of Treatment Action Campaign the South African activist group that took drug companies to court and made them either reduce the price of HIV medications or allow South African governament to overcome patent rights and buy cheaper generic drugs.

During this battle Zackie, who could have afforded to buy treatment, refused to take it, and nearly died. He was saying: ‘Until everybody will have access to treatment in South Africa, I will not take it’.  It is very rare nowadays to find this level of commitment in action.

TAC  continues being at the chore of the SA response to HIV. Supporting the community in developing treatment literacy and campaigning and negotiating with the Big Pharma for more options and better drug quality. TAC has more then 20.000 volunteers and 60% of them are black women from some of the poorest sections of society in South Africa.

Zackie lecture centered on the state of education in South Africa. Its focus wasn’t HIV, even if HIV was mentioned several times.

During the Q & A at the end of the lectures, one of my colleagues asked Zackie to speak about the process of becoming an activist. What are the important elements?  He pointed out three things (what follow is a summary in my own words):

1) Principle. As an activist you have to have a strong commitment to your values.

2) Taking risks. You need to take risks. Know when and how to do it in order to be most effective.

3) Self education. You need to educate yourself. Read. Keep informed.

Vienna October 2009

I have just terminated attending the second Leadership and Accountability Programme Committee (LAPC) meeting to prepare  for the next International Aids Conference. It has been 2 days of hard work. Yesterday from 9 until 7 pm and today from 8,30 until 4. But I am amazed about how much work we have  done. It is very inspiring to be locked up in a room with such a bunch of committed people.

Our job was distributed between planning plenary sessions (the massive sessions at the beginning of the day where everybody participates), working on 10 sessions which are called ‘Non Abstract Driven Sessions’, and 10 Skills Building Sessions.

The final word on the plenary sessions is given by the Conference Coordinating Committee, and the basic outline of 9 sessions were already given. However we were able to recommend speakers and also to signpost  the topic of 3 plenary sessions. I also really pushed for the recommendation that each plenary should have a positive speaker. I am very happy about this. I have also made a recommendation for a speaker for a plenary session. She is an amazing activist…I will say no more and keep my fingers crossed.  But I have let other positive women from other committees know about her so that they can also support her.

The ‘Non Abstract Driven Sessions’ we planned are also really interesting and include an Open Call for an elected leader to come out about their HIV status. This would have an incredible impact on stigma in countries with high prevalence,  especially Africa. We also have sessions about developing leadership in ‘Key’ population( I have learn that ‘key population’ is a better word for ‘marginalized’).  Other very exciting ideas are:  a session were the youth will hold leaders accountable and another one about De(criminalization), which will include drug use, sexual transmission, sex work,  and really explore the relationship between criminal law and public health.

The 10 skills building sessions were divided into two groups: 5 focusing on accountability skills  and 5 on leadership. I am really happy because we were able to push on the agenda a  ‘Leadership Skills for Women” session, and we hope to have it facilitated by a network of positive African women. Another skill building session we have put on the agenda which is very close to my heart  is leadership skills for drug users, which we hope we can also  offer in Russian.

Those are the highlights of the work we have done, but I tell you, we have been discussing for something close to 18 hours (and probably more since the discussions carried on during dinner lunch and breakfast). My head is still buzzing.

After the meeting I decided to find out the route to  Pure Yoga, the Ashtanga Yoga Studio of Vienna. I studied the map, took the underground, walked around a bit, and now I know the way. Tomorrow, before getting on the plane, I will treat my self to some Austrian Yoga. So I know that when I will get back here for my next meetings, and  maybe even during the conference, I can squeeze a good yoga practice in. That’s all I need to be happy…

Not All Is Well On The Western Front

Wow what a week…It felt like I never stopped. I have just arrived in Vienna for my second meeting for the Leadership and Accountability Programme for the next International Aids Conference.

On Thursday I attended the BHIVA conference, and Gus – who is holding the position at the moment- announced me  as the new Community Representative. The reality hit me that it is going to be hard work, and I will need a lot of support from the ‘community’ I need to represent. I hope that my election will bring about some fresh air. To begin with, it is the first time that a woman, and somebody who wasn’t born in the UK is elected.

I thought that a first step to start to get a feeling  of what the “community’ of people living with HIV believe is important,  was to ask them what I should highlight during this meeting in Vienna, and what they thought could be good topics for plenary sessions. So I posted my question on the UKCAB web  forum.

The response I had is that it is vital to highlight that even in the so called ‘High Income Countries’, there is large potential  for improvement. A lot has been achieved, but there are still huge problems for certain sections of the population to access treatment and testing (migrants in particular), and that travel restrictions an widespread stigma and discrimination still hugely impact on the quality of life of people living with HIV. Since the conference is set in Europe, it should focus also on the realities of those of us who live in Western Europe. Not all is well.

On a similar note, something that really shocked me at the BHIVA conference was what was said during the presentation on the guidelines for treatment of co-infection with hepatitis C.  Somebody asked  how many people are accessing  treatment with pegylated interferon and ribavirin. The answer was shocking: only 50% of those with co-infection are accessing treatment. And who are the excluded? Injecting drug users, who are deemed incapable of sustaining such a difficult treatment. But have they thought about how to support drug users through treatment? Have they looked at solutions? I don’t think so. I don’t think a lot of medical professionals really believe that those are patients who deserve treatment like all the others. It is clear that even in the UK if you are, or have been an IDU, you can be denied your  right to health.

Executive Community Representative

I am proud to announce that I have been elected Community Representative for BHIVA – British HIV Association.
BHIVA is a body manly constituted by HIV consultants and is responsible of all the important decisions regarding the medical care of people living with HIV in the UK
For example BHIVA writes every year updated treatment guidelines. Recently they published a booklet in collaboration with the National Aids Trust on guidelines for the detention and deportation of HIV positive migrants. Those guidelines state that nobody should be taken into detention without their medication and if deported they should be given 6 months of medications and contact information about treatment centers in their country.
BHIVA is a very influential body and I am really grateful to all the members of the Community Advisory Board who showed their trust by voting for me. I will work very hard to represent the views of us who live with HIV, to do this I will need your support and input.

Returned to Risk

Last week I went to the launch of ‘Returned to Risk’ a report by the Human Rights Watch on the deportation of HIV-Positive migrants. It was held by the All Party Parliamentary Group on HIV and AIDS at the House of Common. The report highlighted the unfair treatment of HIV positive migrants, not only in the UK but all over the world.

In Saudi Arabia, for example,  all migrants are compulsory tested for HIV. If they are positive they are imprisoned and then deported without provision of care. This is done not only with HIV-positive people, but also with those infected with Hepatitis C, B or TB.

South Africa has also a really poor record of treating immigrants. Often migrant mine workers are deported without treatment if found HIV – positive or with TB. They are viewed as a disposable asset. Even if it is  against the young South African constitution. At the moment there is an estimated 3.000.000 Zimbabwean refugees in South Africa. 17.000 get deported back to Zimbabwe every month. One wonders how many of those forcefully sent back are positive, how many of those will die because of lack of access to medication?

At the meeting there was also a courageous  Malawian woman, Ivy,  currently living in the UK and expecting to be deported soon. Ivy is on third line HIV drugs, which are impossible to find in any developing country. She voiced her fear and anger at the prospect of being returned to a place where she will not find the medication she is on and will probably face illness and death. Ivu has been volunteering for a number of organizations and charities in the North West of England contributing to our communities for the past 6 years. The home office told her “Go and continue your good work in your country”.

The Human Right watch states in this report: ‘ The principle of non-refoulement, articulated in refugee and human rights law, establishes an absolute prohibition on the forced departure of a person to another state where there are substantial grounds for believing that the person would be in danger of being subject to torture or other cruel, inhuman or degrading treatment or punishment’

However the UK government is obviously not listening, because while it preaches its commitment to the Millenium Development Goal of Universal Access to HIV Treatment, it still doesn’t guarantee HIV treatment to failed asylum seekers in the UK, and deports people with HIV to countries where they will most certainly die because of the lack of appropriate medical care.

The African HIV Policy Network is running a campaign to stop the deportation of HIV positive migrants: Destination Unknown. You can sign the petition here.

It was great to see that discussion on this crucial issue for people living with HIV was brought up, especially in a site as the House of Common. However I was quite disappointed by the fact that those who attended the meeting were the usual people from the HIV sector. Once again we were preaching to the converted. If we want to move forward in securing access to HIV treatment for all in the UK we must work harder to reach those who are not already on our side. How can we do this?

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… “

HIV in Sicily Part II

Walking in the narrow streets of the centre of Palermo, looking for some shadow and solace from the scorching heat of the end of July, I couldn’t stop thinking about D. The last time I saw her was in Palermo, on my way back to London from Alicudi.

I met D the first time when she came to register at PW. She didn’t speak any English and I translated for her. She was only 20 years old and she just found out that she had HIV while she was pregnant. Her baby was only a few weeks old.

 During the next couple of years I spent a lot of time supporting D. It took her a long time to tell her partner that she was HIV positive, even if she believed he had infected her. Once she came to PW with a black eye, and bruises on her arms. She had told him, he had beaten her up. They kept being together even if he refused to go for testing. D didn’t think it would have been possible for her to get another boyfriend now that she was positive.

 Sometimes I would go with D to hospital to help her not only with the translation, but explaining the medical stuff. When she got pregnant again,  I went with her for an ultrasound. It was snowing heavily, it was a January evening,  and they kept us waiting until late. We had to wait for a doctor to explain the results of the tests. The doctor told us that next to her baby, in the womb, they had found a big lump. More tests were needed.

 In spite of her health problems and before having any more exams D went to Palermo to see her mother and her 4 years old daughter she had left there. Her mum still knew nothing about her diagnosis. While in Palermo she had a miscarriage and had to go into hospital. In the hospital she was put in a ‘isolation room’ and all doctors and nurses who came in were wearing masks and gloves, as if she was an highly infectious threat. I really don’t know how she explained that to her family. She was discharged after a few days, in spite of still bleeding heavily, with remarks on not really wanting to treat people like her.

 When D came back to London she was diagnosed with late stage cervical cancer. She was given only a few months to live. She decided to go back to Palermo and I encouraged her to tell her mum about her HIV. D called me a few days later to tell me her mum had thrown her out of their home, calling her a whore. She was staying with another relative.

 Somehow D patched things up with her family and the last time I saw her it was in a hospital in Palermo. Even if I was ‘on holiday’ I felt I had to say goodbye to D. The taxi driver took me to the hospital on my way to the airport. Her mum and daughter and other brothers and sisters were there.   D had lost a lot of weight but there still was a glow on her face. She was upset I didn’t warn her I was coming. She wanted to give me a present, some Sicilian delicacy. She always gave me, and other people who came to PW little  presents,  that’s how she was.

 D died a few days later. Her daughter keeps living with her mum in Sicily and the boy is somewhere  in London with his dad, if he is still alive….Even when D was really sick, he still refused going for the test.  Both children are HIV negative

 When I walked the streets of Palermo a few weeks ago I couldn’t help thinking about D. Her short life could have been so much better. Nobody can deny that dying  at such a young age is a tragedy beyond words. However would have she suffered so much if she had just died of cervical cancer instead of AIDS?