October 2006:

Student Stop AIDS Campaign meeting, hosted by the APPG AIDS in the House of Commons

Speakers:

Rt. Hon Hilary Benn MP, Secretary of State for International Development.

Student Stop AIDS Campaign: Richard Wanzala, Katie Chalcraft, Dingase Mvula, Johhny Guaylupo, Katy Athersuch

Welcomes by Neil Gerrard MP, Chair of the APPG AIDS.

Notes from speech by Rt. Hon. Hilary Benn MP, Secretary of State for International Development

Thanks to the Student Stop AIDS Campaign for all the hard work that you are doing in the fight against HIV/ AIDS and for the pressure that you continue to put on the UK Government.

Health Service and the capacity of the Health Services are challenges that we have to face today. In the most affected countries Parliamentarians, Doctors and Nurses are dying and we need aid money to train staff and volunteers to ensure that the capacity increases. We also need to make sure that staff are paid adequately so that they stay where they are needed.

We also need to make sure that affordable drugs reach the people who need them.

Drug prices have come down and that has made a change but we need to make more progress.

Developing countries demonstrate change, from not having anything there are now people benefiting from drugs. It is progress but it is not enough!

We need to be able to demonstrate that we have achieved the targets that we set up at Gleneagles in 2005, which are ensuring access to drugs.

We hope that the German G8 Presidency next year will further the work towards Universal access by 2010. They have already said that they are putting Africa as an item on their agenda, and this of course means AIDS.

This however needs to be secured and you have to keep lobbying, just like you lobbied us before Gleneagles. The fight is not only about money it is about long term commitment and sustainability.

We need to make sure we do more on education of course. We need to stop people from acquiring this virus, we need to give women power to protect themselves, and it is about telling the truth. People have sex, so we need to talk about sex. And you as Students and campaigners should continue to do this.

Student Stop AIDS Speakers

Richard Wanzala

My names are Richard Wanzala, I am a Ugandan aged 25 and I have been involved in HIV/AIDS activism since my Secondary School years.

My eye opener to the fight against HIV/AIDS came in 1994 when I lost my uncle to an HIV/AIDS related illness. It was the first time I came face to face with the reality that HIV/AIDS is with us and people are dying.

Since then I started involving my self in HIV/AIDS awareness work by establishing the School Health Awareness Club in my Secondary school. While at Makerere University, I joined the Family Planning Association of Uganda as a volunteer on the youth community outreach programme. After my university, I joined Students partnership Worldwide (SPW) as a volunteer on the health education Programme.

I got involved in all these projects because of the realisation that HIV/AIDS was a very big pandemic in Uganda and since most of the infections were among young people aged between 15-25 years, then we as young people who the most affected have the obligation to join the fight against the pandemic.

Uganda is widely hailed as a success story in drastically bringing down the prevalence rate of HIV from over 18% in the early 1990s to around 6% today. However, despite these successes it is estimated that close to 2 million Ugandans are living with HIV/AIDS and about 1 million people have died due to HIV/AIDS in Uganda in the last two decades since the virus was first recognised. Similarly, the HIV/AIDS pandemic has left behind over 1.9 million orphans, most of whom are on the streets.

Today, we are campaigning for universal access for AIDS drugs by 2010 and my message to the policy makers at all levels is that this theme should be taken strongly with all the due respect it requires because if the promise of universal access to AIDS drugs is not made into reality, then we are headed for a situation where the majority of the world population especially in the developing countries face extinction. To put this in another way, today we are campaigning for a situation where, there is a promise of life even after someone is diagnosed with the virus that causes AIDS. By leaving accessibility to ARVs to a ‘whoever can afford’ situation, then we are leaving most poor people in the developing countries to die just because they cannot afford the expensive Anti Retrovirals. When I think of the number of Ugandans who have died due to AIDS related illnesses, I think of how many doctors, teachers, lawyers, scientists, members of parliament and many other professional we have lost due to something we can prevent and know how to treat.

My final message is, HIV/AIDS is a pandemic that got recognised in our generation, therefore it must be stopped in this generation and the power to achieve a world free of HIV/AIDS lies within the unity of the world community in committing ourselves to the fight against the pandemic. It is worthy noting that HIV/AIDS affects every one of us regardless of age, race, religion, social status among others.

Katie Chalcraft

I first became interested in HIV when I was 11 years old. I was at secondary school at the time. This was during the early 90s when there were visible campaigns about HIV in the UK. I had seen something on the TV about HIV and I went to my school and told the teacher that I would like to hold a cake sale to raise money for an HIV and AIDS charity. My teacher refused. I went to the headmistress; she said that she thought it would be inappropriate for our school to raise money for an HIV and AIDS charity. I think this raised a lot of questions for me and has shaped the path that has led me here today.

I think that there is a common misconception in the UK that HIV is not an issue here. That HIV is an African problem, that HIV is a virus that only affects gay people, and that when we stopped seeing red ribbons everywhere HIV had somehow disappeared…but HIV has not disappeared. And HIV is a problem in this country.

Did you know that instead of decreasing, every year the number of people living with HIV in the UK increases, in fact the rate of new diagnoses has doubled between the year 2000 and 2005. It’s not surprising really when you consider that a recent poll by National AIDS Trust last revealed that over 50% of people don’t use a condom the first time they have sex with a new partner. I wonder how many of us use a condom when we have sex?!

The other day at the clinic a 19 year old, white, heterosexual guy walked through my door. I am going to be honest with you I thought that he had got the wrong room. Yes, you could say that’s discriminating, but I had become so familiar with the kinds of people living with HIV that I was genuinely surprised to see this young man walk through my door. But let me tell you this, the dynamic is changing; we are seeing more and more white heterosexuals becoming newly diagnosed with HIV. And why? Because many of them never thought HIV was an issue here, they never thought they could become infected. But if you are having sex without a condom you are putting yourself at risk.

So why am I telling you this? The increases of STIs in young people and the rates of teenage pregnancies all demonstrate that people are complacent about their sexual health.

Where are the government campaigns about HIV in the UK? These campaigns were visible in the 80s and the early 90s – (we may not have agreed with the content of them), however there is no denying that they were successful in raising public awareness about HIV and they meant that there were far lower rates of HIV in the UK during the 80s than our European neighbours.

But where are the campaigns now? Where is the awareness now our rates are doubling? Now HIV is affecting more and more people across the UK.

Our Students STOP AIDS Campaign is focused on “Access to treatment”. What do we mean by this? We are talking about Anti-retroviral drugs (ARVs) – these are drugs which can slow down the replication of the HIV virus in the body, delay the onset of AIDS and basically mean that someone can live a long and healthier life. They can live with HIV like it is a chronic health condition like, for example, diabetes, rather than a death sentence.

At the G8 summit last year our government (alongside the other G8 governments) made a promise of universal access to treatment for all by the year 2010. This effectively means that all people across the world living with HIV would have access to the drugs that could keep them alive.

And yet, what many people don’t know is that here in the UK, here in the city of London, not everyone living with HIV has access to ARV treatment.

What do I mean by this? In April 2004 the NHS introduced new charging regulations, which effectively meant the withdrawal of free HIV treatment from certain groups of people. These groups of people are: undocumented migrants, long stay visitors and anyone refused asylum or leave to remain, but not removed from this country. These people are liable to be charged for any NHS services other than those provided in A and E or those outlined in the 1989 exemptions.

The 1989 exemptions state that:

1. Every serious communicable disease is exempt from charges

2. Every single sexually transmitted infection is exempt from charges

However, HIV is not exempt. And yet HIV is one of the most serious communicable virus’ our world has ever known. It doesn’t make sense…

So why did the NHS introduce these charges? These charges were introduced in response to fears of “treatment tourism”. The right wing media introduced the idea that people would come from all over the world specifically to exploit our healthcare system and to access free ARV treatment. But the key thing is here – that these charges were introduced in response to fear NOT fact. Studies have shown that most migrants are not even aware that they are HIV+ until they have been in the UK for more than nine months. These people often become very ill and present with an illness such as TB only to discover that in fact they also have HIV. This is not the kind of behaviour of someone who comes to the UK specifically to access treatment.

I know of two cases where pregnant women in London hospitals have been refused the ARV treatment necessary to prevent the transmission of HIV to their unborn child because they could not pay for it. Both of these women left the hospital before giving birth and we don’t know the outcome of their situations….

I’d like to take a minute to think about these charging regulations and the kinds of impact they are having on some of the most vulnerable people’s lives right here in the UK, the kind of impact it is having on the wider community and also on our current healthcare system:

Public Health:

- Charging for treatment discourages people from taking an HIV test,

- It removes treatment support around safer sex, and denies people the drugs that substantially reduce their infectiousness.

- Thus it could be argued that the Government is failing in itsobligations for the prevention, treatment and control of an epidemic disease. Take, for example, Elias (name changed): He collapsed with a fit and was taken into hospital via A&E. He was subsequently diagnosed with HIV and TB. He was billed for approximately £5,000. He was discharged and vanished without ongoing treatment.

- Many people are co-infected with HIV and TB particularly within the African community. With these regulations, someone can receive their TB treatment for free but they will have to pay for the HIV treatment necessary for the TB treatment to work. If people like Elias just disappear from hospitals there is a high risk that they will develop multi-drug resistant TB and return to the community highly contagious.

Cost:

- A large part of the government’s decision to implement this bill relates to reducing costs, as this was a concern that NHS services would be swamped with treatment tourists accessing free drugs.

- But what we find is that these regulations do not make people “return home”

- What these regulations actually mean is that by denying people life-saving treatment the NHS could end up paying out more in supporting their frequent trips to emergency care to deal with their opportunistic infections. 1 week in intensive care can cost up to £10,000. the same price as one year’s worth of ARVs for one person. Without these drugs someone may make up to 3 or 4 trips in one year to emergency services.

Human rights:

- It could be argued that current denial of life-saving medication for people living with HIV amounts to inhuman and degrading treatment under the ECHR.

So, just to recap, on the one hand, our government has made a promise of universal access to treatment for all people by the year 2010, and, on the other hand, in this country we don’t even have national access to treatment. There appears to be some kind of inconsistency here.

So what we need to campaign for is that our government turns these promises into reality both in this country and internationally ensuring that people living with HIV have the right to life. We need to raise public awareness of HIV as an issue here in the UK, to make sure that people here know the risks, that people here know how to protect themselves and where to seek support if they are positive. And by doing this, by personalising HIV as an issue in our communities, by talking to our friends, families, and children about HIV we can help to normalise it, we can help to reduce the stigma attached to it. And finally, by campaigning for universal access to treatment, we can make sure that if someone is diagnosed with HIV in this country or any other country across the globe that they have access to drugs that can save their lives. By campaigning for universal access to treatment, whether you die young or live long will no longer depend on where you live, whether or not you are wealthy, whether or not you are a failed asylum seeker, instead everyone living with HIV regardless of colour, class, age and nationality would have the right to live with HIV as a manageable health condition, not a death sentence, thus enabling them to work, look after their families and live longer healthier lives.

Dingase Mvula

My name’s Dingase Mvula, I’m 21 years old, from Zambia. My background in the fight against AIDS dates back to the time I was in high school. I joined the anti-AIDS club, and it was there that I got to learn about HIV; how it was transmitted, what the symptoms were and the impact it was having on my country. I realised than that a close cousin of mine who had died a year before had actually died of AIDS, because I got to relate all that I was learning in school and I knew then that she had been HIV positive. This made it personal for me and inspired me to go on and continue in the fight.

After high school I joined Students Partnership Worldwide and I worked with an English girl in a rural part of Zambia, teaching in the school about HIV and AIDS. It was at this school that I met a 14 year old girl who was HIV positive. She had been raped by her uncle who was HIV positive, and now she too was also positive. Her uncle had believed that by sleeping with a virgin then he could be cured of HIV. It made me realise how bad things are in the rural areas of Zambia. There is so little information. People do not have access to newspapers or televisions and they do not have access to health services.

It seems to me, that the right to life, in my country, depends on whether you are rich, or whether you are poor. Or whether you are coming from a rural area or from an urban area. If you are rich and happen to be HIV positive then you are okay, because you can easily get access to treatment from a private clinic. But if you are poor, or come from a rural area, then HIV is like a death sentence to you, because you know you will not be able to get treatment and you will just wait to die.

In Zambia we have a prevalence rate of around 16%. And we have around 700,000 orphans due to AIDS. In my family alone we have 17 orphans as I have lost so many aunts and uncles. But it’s not just my family, in my community there are so many orphans, and in the country as a whole. There is no one to take care of these children because their parents have died of an AIDS related illness, so they just go into the streets and make money however they can. Many are joining gangs and so many young girls are prostituting themselves as they have no other way to take care of themselves and their brothers and sisters. But this didn’t need to happen. Had their parents had access to antiretroviral treatment they would be alive today and they would be able to take care of their children. We are creating such a big problem for ourselves by denying these people life saving treatment.

We are campaigning for universal access to treatment because the right to life should be a right for everyone. It should not be a matter of being rich or being poor, everyone who is HIV positive should have the right to access care and treatment. Join us in the fight and lets make this promise a reality!

Johnny Guylupo

I was raised in the South Bronx in NYC by my grandmother. I was a Catholic altar boy and went to Mass every Sunday and did well in school. My dad wasn’t there so I looked up to my HIV-positive uncle, Michael Rivera.

Sexuality was never discussed in my family. The only thing I knew about my uncle was that he contracted HIV because he was an IV drug user. My uncle was the only male figure I had in my young life and he died of AIDS at age 40. I cried, watching my depressed grandmother. All I could do was pray because that was what I was taught: the rosary, praying and faith.

I entered an all-boys private Catholic school at age 14. I was taught about abstinence and not to have sex until married. But that was where the confusion began. I wasn’t straight, so how could I get married. I was a young gay boy in the wrong place. My sophomore year I met a friend in school who showed me around gay life in NYC. I needed attention, love, and gay friends. I met a 35-yearold man who seemed to be the best person I had ever met. He introduced me to condoms, but a few months later the condoms were no longer on. I was in love and not educated about HIV/AIDS so I wasn’t concerned. My school didn’t have real sex-ed. I didn’t know what I was getting my self into. All I knew was that I loved this man and wanted to be with him forever.

My grandmother noticed that I was going to school with a classmate that she knew was gay. She told me I was wrong and she didn’t want me to end up like my uncle. Two years later I was still in school and sexually active with the same guy, but one morning I woke up with some terrible stomach aches and it lasted all day. My mom wasn’t around because she was on the street, using drugs. When I got to the hospital I signed all the papers and went through a few tests. A few days later I was told that I had HIV.

I didn’t know what to do. How could I be 17 and HIV-positive? I was too ashamed to tell my grandmother, who had been waiting in the emergency room. I needed some help so I went to my counsellor in school and told him that I was gay and he told me that I was too young to think about sex and I wasn’t brought up to be gay. I told him I was HIV positive. He didn’t have any answers.

At that time, my mom was trying to get herself together and going to treatment. I stayed with her for a year and in that year I was thrown out 3 times. Shortly after she found out I was HIV positive I woke up and found her crying in my room. She said, “I know, Johnny,” and I hugged her and told her not to cry. I became depressed, attempted suicide, and was hospitalized. I was confused and still figuring out how to tell my partner until I received a call at the hospital; it was the older guy that I was dating, calling to admit that he was positive. I started hanging out with my friends - partying, drugs, sex and fashion were my life. But at 19 I still wasn’t happy. I started treatment but had a bad reaction to viramune, Steven Johnson Syndrome. I was in the hospital for a month and half, mentally destroyed. I would go to my doctor visits but it was hard to take meds: I could barely swallow, even one pill at the time. At that time I was in college, trying to get an education, but sex, money, and drugs distracted me. I left school after two years, started using more drugs and was re-hospitalized for depression. I was feeling weak and had night sweats. My CD4 count was down to 120 and my viral load was above 900,000.

It was clear I needed to educate myself, and ultimately help others. I decided to become a peer educator, to learn and teach about this virus that I carry so that others won’t go through what I went through and am still going through.

At the same time, I could not disclose my status to anyone and I was worried I didn’t have anyone like myself to offer support and confidence. When I joined the Campaign to End AIDS, I met a family that I never thought I would ever meet. I felt confident. I was trained in science, politics and history. I heard many stories about the fights that went on in the 80’s for people living with AIDS and I knew this was what I wanted to get into. I wanted to fight for my rights and for the rights of people like myself everywhere.

I learned what the government is doing to young people like me and why the rates of HIV are rising when it comes to the youth. I am the face of HIV: I am a 24-year-old gay, Hispanic HIV-positive man, and I don’t feel that the government is doing what they should do to control and stop this spread. I came out about my status to put a face to HIV and to put a voice to HIV.

Right now I’m fortunate to be back on treatment. I’ve been on treatment for the past 4 years and my CD4 count is 709 and my viral load undetectable. I’m living proof that treatment works. I’ve got a healthy immune system and I live a normal life just like any other young person. It’s not right though, that just because I live in New York City I’m able to access good care and services, but other HIV positive people are dying because of lack of access. We need universal access to treatment, prevention and healthcare workers for all, not just the privileged few!

Katy Athersuch

It was at university that I really became engaged with the global issue of HIV. I’d heard the statistics and they were overwhelming; 25 million dead, 42 million infected and 15 million orphaned. Such figures make the situation seem impossible, a tragedy. But whilst studying at university I realised that it’s not a tragedy we are dealing with here, it’s an injustice.

Life prolonging treatment for HIV exists. It’s not a cure, but antiretroviral drugs can enable people like Johnny to live longer, healthier lives; to go back to work and to continue living. And yet, despite the existence of these drugs, access to them is not universal. It depends on where you are born, and how much money you have. Like Dingase, I was shocked and appalled that the right to life seemed so contingent.

At this point, when I started to study and understand the global politics of health, I really became fired up and passionate about AIDS Campaigning. Along with likeminded students at Sussex University, and with the help of SPW, who provided us with training days, the speaker tour and other resources, we established Sussex University Student Stop AIDS Society. We held stalls regularly on campus, encouraging other students to join the campaign, write to their MPs and really engage with the issues.

In the lead up to the G8 Summit in Gleneagles, 2005 we got together nationally with the other Stop AIDS Societies and other members of the Stop AIDS Campaign around the UK. Together we planned demonstrations, publicity stunts and created a lot of noise around the issue of treatment access.

As students we feel such a sense of ownership over the Universal Access Commitment. Together with the members of the Stop AIDS Campaign we put universal access to treatment on the world’s agenda, and it’s critically important to us that this doesn’t just become another broken promise.

Since graduating from Sussex I’m now the national coordinator of the Student Stop AIDS Societies, and I’ve had the privilege of touring round the country for the past two weeks, visiting 2 universities a day and speaking to hundreds of students. It seems to me that there is a lot of talk about engaging young people in the political process. We’re often seen as the apathetic generation, but from speaking to so many students I can tell you that this just isn’t true. Students are often critical of the political system and sceptical about their capacity to influence or bring about change through it, but they are not apathetic. They really care about justice, and they are willing to engage politically if they can see that it makes a difference.

There are thousands of students throughout the UK who are actively campaigning for universal access to treatment by 2010. If we fail to reach this target, because of political inaction, then we not only let down the thousands of HIV positive people throughout the world, but we have caused a passionate and committed generation to lose faith in the political system.

As the Stop AIDS Campaign we have become specific in our asks this year. In order to achieve as close as possible to universal access to treatment by 2010, then we believe that the issue of drug pricing must be addressed. As it stands the exorbitant cost of many critically needed brand-named ARVs are literally pricing people out of life. We therefore ask the UK government to ensure that new and affordable generic versions of all essential medicines become rapidly and widely available. In particular we are asking them to take on the challenge of ensuring generic versions of heatstable Kaletra and Viread are available by the 2007 G8, and that they use the summit to tackle barriers to access. Finally, and importantly, we ask that they work with other G8 countries to ensure that the global effort is fully financed, including investment to strengthen health systems.

Question and Answer Session

Q: Martin Flynn, Positive Nation: With regards to prevention policies, what do you think does and does not work?

A: Katy Atersuch: Peer education is the most effective tool that we have. I do also believe that dance and drama is more effective than plain sex-education.

Q: Jude Haigh: What about the price of Condoms? Is that something that the Student Stop AIDS Campaign should include in its campaign?

A: Richard Wanzala: In Uganda the majority of treatment programs are donor funded. When the money comes from America we need to be careful about what we say about condoms. When Condoms weren’t a political issue in Uganda, the price was not an issue. As a student I was given a big box of them – more than I could use!

A: Dingase Mvula: In many places in Zambia people cannot afford both condoms and food, so the choice is not hard to make. They need to be made available and they need to be made an every day commodity. People should not feel embarrassed buying them.

Q: James Lloyd – the Futures Group: How do we build better international partnerships on campaigning for these issues? Do we need more tools for this and further support from DFID?

A: Neil Gerrard MP: The question is how do we build links that last? Just keeping in touch can be difficult and constantly needs working on. The Global Fund is an institution that is helping to build network within Civil Society, and we should learn from them. The International Parliamentary Union has established a small advisory committee involving Parliamentarians from all over the world we hope that this will provide us with a good opportunity to build lasting contacts and links.

Q: Jonas Bunter: Cuba has been successful in reducing its infection rates by introducing compulsory testing and quarantines. This contradicts the western understanding of human rights but still presents us with a paradox? Do you think we can learn from this system?

A: Johnny Guaylupo: I don’t think this will work. PLWHA want to be just like everyone else and not only be defined by their HIV status. Testing is linked to education, not force.

A: Katy Chalcraft: In Cuba the stigma is very high, so you can’t say that the Country is dealing well with the epidemic. Talking about the problem will lower the prevalence rate.