BHIVA HIV Treatment Guidelines

It is the last few days of consultation on the new BHIVA guidelines for treatment of people living with HIV.

I am really pleased to say that there  has been extensive consultation with the community of people with HIV.  BHIVA had  a community representative on the writing committee and also held two large consultative meetings with the community: one before Christmas and one last Tuesday. On Tuesday the room at Friend’s House in Euston was filled to the brim with a good diversity of people.

There are two extremely  innovative sections in the guidelines: one dedicated  to Patient Involvement in Decision Making and one on Treatment as Prevention. The latter is especially ground-braking because it acknowledges in practice the prevention revolution brought about by the HTN052 study. This was a research  among couples where one partner was positive and one was negative, who were not always using condoms, which proved scientifically that people on HIV medications are 96% less likely to transmit HIV.

It’s a fact: there are HIV  positive people who are not able to use condoms, maybe because they want to conceive, or because they feel it interferes too much  with the pleasure and spontaneity of sex, or maybe because, as a consequence of power dynamics, it can be difficult for women or young people to always negotiate condoms. Starting treatment in order to avoid passing HIV to a negative partner is acknowledged as an ethical option by the guidelines. Obviously the guidelines also include a lot about in-depth discussion with the doctor of all the ‘caveat’ and especially  the crucial importance of stressing the use of condoms ( and  I suggest to include female condoms! )  to further reduce the very low risk.

I feel it this is  an amazing acknowledgement of the sexual and reproductive rights of people with HIV, as well as that  it could contribute to reduce stigma,  and finally  that it  also provides a strong argument to make treatment available  to all.

It is not surprising and maybe not a coincidence, that this week there has also been a change in the UK policy that prevented foreigners, such as failed asylum seekers and people on a student VISA, to access HIV medication  (an issue on which we had been campaigning since 2004). The rationale beyond this change was not just that it was absurd and incoherent that ‘ foreigners’ could access treatment for all infectious diseases apart from HIV ( the evil disease that needs to be singled out!). The argument for providing treatment to everybody on UK territory was very much made on the notion that this is important for public health and prevention, because people on treatment are so much more less likely to transmit HIV.

I really hope that what is happening in the UK will have even further ramification in promoting Universal Access to treatment to the millions of people who still need it, especially in the current climate of uncertainity created by the the Global Fund Crisis.

Good coverage on the change in policy on access of HIV treatment was on the Telegraph.

If you  are interested in commenting on the BHIVA treatment guidelines (and can digest the 111 pages written in medical jargon….gulp!)  the consultation is open until Monday 5^th March.

Test and Treat

Test and Treat was one of the few sessions I was ‘kind of able’ to follow at the latest British HIV Association (BHIVA) conference in London at the beginning of the month. In spite of all my ‘activism’ when I listen to very scientific presentations my brain switches off and most of the information passes over my head.

Anyway here is a very simplified version.

In the past few years it has become clear that an undetectable viral load does reduce infectiousness immensely. This is why, for example, preventing mother to child transmission is so successful once women have an undetectable viral load.  And this is also why the Swiss Doctors released the controversial ‘Swiss Statement’ giving the green light to unprotected sex to monogamous, heterosexual, sero-discordant couples on effective treatment.

This topic is crucial to the world of public health not because the grey suits really want us who live with HIV to have guiltless and condomless sex, or ‘Nyama Kwa Nyama’,   doing it flesh to flesh,  as my Swahili speaking friends say with starry eyes.  What really matters to policy makers is finding a shortcut to prevention. World Health Organisation (WHO) believes that if with undetectable viral load you can stop sexual transmission of HIV we can treat our way out of the epidemic. All it is needed is: testing everybody on the planet every year (!) and putting them on ARVs straight away, regardless of CD4 count, for the rest of their life.

Professor Myron Cohen, from the University of North Carolina, who opened the session, highlighted three major concerns clouding the picture:

• Transmission of resistant viral strains

• The contribution of patients with acute and early HIV (subjects who are not likely to be detected routinely but contribute substantially to the spread of HIV)

• The practicality of the idea.

Prof Myron also gave us the example of a recent study in China among 1927 sero-discordant couples on treatment. This study reported around 4% transmission among couples where the HIV positive partner was on ARVs. This study was not considered conclusive because they didn’t use viral load monitoring.  However it provides a real life example of some of the problems of ‘Test and Treat’.

The second presentation of the session, by  Dr Steve Taylor from University of Birmingham,  looked more in-depth to the scientific side of preventing HIV transmission. In order to reduce sexual HIV transmission it is crucial to understand better how HIV works once it is inside the body. Some drugs can  penetrate the genital tract  and stay there at a good level,  thus protecting us from passing the virus.  But not all the drugs work the same way and the collection of samples of genital fluids for research has its challenges!

What I find really exciting is that the criteria of reducing sexual infectiousness will be paramount in developing new drugs and  better combining the drugs we already have.  Personally I was really relieved and felt immediately less infectious just  by knowing that the drugs I am using score really well in the genital tract!

A poster presentation by Dr Taylor and the team he works with, including more information on how different drugs penetrate the genital tract is available here.

As a person with HIV I am definitely very excited at the idea that one day I may  not be considered a viral threat to the world. I think that if sexual infectiousness could really be eradicated this would play an important role in decreasing stigma.

However, I think there are several problems with the ‘Test and Treat’ approach. Firstly an ethical one: is it right to give  somebody potentially toxic treatment in the name of prevention? And could this lead to human right abuses in which vulnerable and stigmatized populations, such as sex workers and drug users are forced to be tested by the police?

Secondly an economic and political one:  in a time in which we can not even test and offer treatment to millions of people who are dying of AIDS around the world, because of lack of money and political will, discussing the ‘Test and Treat’ model seems a  purely academic exercise.

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.

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.