World AIDS Day 2013
The next item of business is a members’ business debate on motion number S4M-08260, in the name of Sarah Boyack, on world AIDS day 2013. The debate will be concluded without any question being put.
Motion debated,
That the Parliament welcomes World AIDS Day on 1 December 2013; considers that this is an opportunity to raise awareness and tackle the stigma associated with HIV/AIDS; understands that, worldwide, an estimated 34 million people are living with HIV; notes that of the estimated 100,000 people in the UK that live with the condition as many as a quarter are unaware of their infection; expresses concern at the outcome of a recent Waverley Care-commissioned YouGov survey of people in Scotland, which suggested that more than half the population is unaware of all of the ways that the virus can be transmitted, with 11% wrongly believing that it can be passed on by kissing; commends the work of the individuals and organisations across the country, such as Waverley Care in Edinburgh, that work to raise awareness of the condition, and supports the efforts across Scotland to mark World AIDS Day in order to help improve understanding about the virus, prevent its transmission, stop prejudice and tackle the global challenge of HIV/AIDS.
12:36
World AIDS day is our chance to celebrate achievements and mourn those who are no longer with us. It is important because it is our opportunity to come together in our different communities to express our solidarity with people who live with HIV and AIDS and their friends and families. It is our chance to raise awareness and to highlight the fact that HIV and AIDS are still with us.
It should concern us all that a recent poll by Waverley Care showed that more than half of the population is unaware of all the ways in which the virus can be transmitted, with 11 per cent wrongly believing that it can be passed on by kissing. We really need to increase our efforts on prevention and make sure that information is presented in a relevant way to a new generation.
We also need to get the message across that effective treatment is available. Alongside that, we need to tackle the root causes of prejudice that prevents people from coming forward and leaves them living in isolation. We therefore need to support the campaign to encourage people to get tested. A quarter of those who are infected in the United Kingdom do not know that they have been infected. That is bad for prevention, and it also means that they are also denied the social and health support that they need.
In particular, today is my chance to thank the staff and volunteers of all the charities that support action on HIV and AIDS. I welcome those who are with us today in the public gallery and those who are watching online.
I thank HIV Scotland for its efforts in promoting accurate information and knowledge about HIV in Scotland. One of its statistics leapt out at me: in Scotland, almost one person is being infected every day, and that is one too many.
Over the years that I have worked with Waverley Care, I have been impressed by the range of services that it has developed, such as buddying, support networks for families, and support for key groups such as gay men and those from the African diaspora. I particularly thank the staff and all the volunteers and supporters who have made that fantastic work possible. Raising funds is a vital part of the work to ensure that those people can continue to support people in our communities.
On Sunday, when I joined Waverley Care’s celebration, I welcomed the fact that Milestone house will reopen in early January. It is testament to effective lobbying by Waverley Care and input from the City of Edinburgh Council and NHS Lothian that that has happened.
During our visit to Malawi earlier this year, Alex Fergusson and I saw very practical projects using theatre and radio to promote the prevention agenda for vulnerable groups. We in Scotland can be proud of that.
The genesis of my motion goes back to the debate that was held after the showing of the film “Fire in the Blood” at the take one action film festival this October in Edinburgh. Take one action asks that, after the festival, filmgoers should do something specific to change the world: just one thing. It is a fantastic model of targeted activism in a world in which it can seem to be really difficult to know where to start. “Fire in the Blood” records the progress that has been made in developing access to affordable HIV treatment for people across the globe.
Last month, at our own cross-party group on international development, the campaigning charity Impact AIDS led our discussion. I particularly want to thank Cathy Crawford, an inspirational campaigner who has done tremendous work to raise awareness on access to affordable treatment.
As Impact AIDS put it, global progress has been both brilliant and terrible. It has been brilliant as a result of global pressure. We in the UK can take some pride in the action that followed on from the Gleneagles summit and our support for action on the millennium development goals. Successful lobbying for access to generic drugs meant that there was a breakthrough when we made the goal of affordable medication costing a dollar a day achievable. Investment in health and education in poorer African countries has also had social and economic benefits, particularly for women, so there has been progress.
However, it is terrible that in other African countries not enough progress is being made—of the 35 million people who are infected with HIV globally, 25 million live in sub-Saharan Africa. It is therefore too early to say that we are at the beginning of the end of HIV, but the fact that that is even being discussed represents the potential that is now possible.
“Fire in the Blood” argues that there is now the threat of new restrictions to cheaper generic drugs through trade regulations, which are being discussed and agreed behind closed doors. We need to demand transparency in those talks so that the affordability of drugs and the needs of those with HIV across the world drive the conclusions of those trade talks.
Our members of the European Parliament need our political support and our UK Government needs to take a stand and push for solidarity and equality of access to HIV drugs. Access to cheaper, generic drugs has saved the lives of millions and, crucially, it has also enabled social and economic progress and investment in health and education facilities in some of the world’s poorest countries. We cannot let the clock be turned back on that progress, so on this year’s world AIDS day we need to redouble our efforts in Scotland and abroad.
There has been dramatic progress and we can celebrate that, but there is a very long way to go. I hope that the debate will give heart to campaigners that their work is visible, that we regard it as politically important and that we acknowledge its impact.
Let us all work together to ensure that we start that discussion on the beginning of the end of AIDS. It is within our grasp but it needs political action, it needs political progress and it needs investment to make it happen.
12:42
The first time that I marked world AIDS day was in 2002 at a student fundraiser in aid of HIV/AIDS charities. Oddly enough I was—believe it or not—one of the DJs for the evening. I remember that the front row was made up of a group of people who were all painted from head to toe in red. It was quite a memorable image because it was an example of joy being used in the face of overwhelming sorrow, like the families of the deceased who insist on people wearing bright clothes.
If there was not perhaps the greatest amount of sombreness at that 2002 event, the next year I visited the United States national AIDS memorial grove, where there was enough seriousness and reflection to go around. San Francisco had been at the heart of what was originally entitled the “gay-related immune deficiency epidemic”. That naming and the developments that happened led to very visible effects on groups of people who had already been marginalised by society. Today, the US still has 1 million diagnosed HIV/AIDS carriers, which is the highest level in the developed world.
I have never known anyone who has been diagnosed that I am aware of. I came in a later generation, when the so-called gay plague had instead become more like the plague, with 60 million people dead or infected from it. That shocking figure is reminiscent of the numbers of people in the middle ages who were infected by the black death.
Sub-Saharan Africa, as we heard, suffered particularly badly, having spent decades improving healthcare systems and bringing the average life expectancy up by a year or so at a time. After 1990, HIV/AIDS meant that that progress went into reverse. Life expectancy across sub-Saharan Africa started to fall again.
The countries that, until that point, had had the best healthcare systems often found that those healthcare systems had only helped to spread the disease. Some countries have rates of prevalence as high as 30 per cent of all adults, and they had to struggle with companies that put patents before people.
In March 2002, the Thai Government took unilateral action to use generics. The price for treating one person for one month fell from $750 to $30. The US Government blacklisted generics and it was only the following year that the World Trade Organization agreed a regime whereby developing countries could use generics.
Work by campaigners and philanthropists has seen tremendous progress around the world. Deaths globally now are down—2.2 million in 2005 and 1.8 million in 2010. However, there are still far, far too many deaths.
Here in Scotland, 5,900 people have been diagnosed with HIV/AIDS, while an estimated 1,400 have HIV/AIDS but are undiagnosed. That is despite the change in average life expectancy among those who have the disease, since it has become a chronic condition rather than a terminal one.
The stigma has always been, and remains, the great barrier. When I was seven, at primary school there was a girl who was bullied. As happens in playgrounds, there was a weapon of choice, which, at the time, was to say that she had AIDS. Other children would not sit in a seat that she had sat in. While the adverts of the time were certainly necessary, that is the effect that they had.
We must tackle the basis of that stigma, which is the ignorance at the heart of the issue. I welcome the Waverley Care report. I asked the First Minister and I was grateful that he reiterated the Scottish Government’s support. I welcome the Government’s action plan and the cross-party resolve that I think the debate will show.
World AIDS day is a chance to remember the dead, to acknowledge those who continue to live with HIV/AIDS and to work together across all our boundaries to end the scourge once and for all.
12:46
Being just a little bit older than Marco Biagi, I am part of a generation that remembers very much when AIDS became an illness that affected a great many people. At the time, I was a young man just out of my teens. The attitude among the much older generation was so corrosive that it fundamentally altered the approach to issues such as sexual equality among my generation and the generations that came after.
I had a personal experience, albeit at one stage removed. It relates to someone who had been at school with me but was not one of my closer friends. He was someone I got together with in the morning to discuss the previous evening’s episode of “Monty Python’s Flying Circus” and to relive every one of the sketches. I had no idea of what his sexuality was. When he left school, it turned out that he was homosexual. He was not someone who was open about that. He eventually had sex and, on the one occasion that he did, he caught AIDS, which he then died from. He died from it in misery because his family were ashamed of him and more or less kept him isolated from the wider family, the community and his friends.
Such experiences, which were not unique, fundamentally changed the attitude of the generation that subsequently emerged. It made us realise that this was an illness that had to be faced and, like all other illnesses that have affected populations, it has to have every resource and effort put into defeating it.
I do not wish to distinguish HIV and AIDS from all sorts of other sexual diseases. We have appalling rates of chlamydia in society. At a school that I was speaking at last week, it was clear that many young people do not know that the Government has a first-class website that is designed to educate young people, in terms that they can best understand, about sexual health and all the protections and so on of which they need to be aware. That is true whether young people are gay or straight, which is another big issue that everybody is now perfectly open to discussing.
More must be done. As each new generation of children comes through school, we tend to forget that we launched something to people who have now left school, are off to university and have gone beyond. We need to ensure that the next emerging generation knows that the information is there and that we constantly update it and make it relevant.
I commend President Obama for his support of the work that President Bush did in relation to the international aspect of tackling AIDS. Both President Obama and former President Bush were in Tanzania earlier this year, and President Obama again commended President Bush’s president’s emergency plan for AIDS relief, as part of which the biggest single donation by any state in history to tackle a disease was committed by President Bush. The donation was $15 billion in 2003 to 2008 to prevent 7 million infections across Africa—Sarah Boyack talked about that—and it has prevented some 1.1 million deaths.
Much more needs to be done, including from what some people would, I suppose, regard as an unlikely source. That commitment was from President Bush, and I noticed a comment from a leading businessman in Dar es Salaam said:
“We love Obama because his father was an African, he is the first African American in the White House, and that has inspired us ... But the fact is that so far he has not done as much to help Africans as President Bush did. We understand he has problems at home, but truly we are still hoping that he will help us more before he retires.”
The United States is the international leader in all of this, although we play our part as a community and as a country here. I hope that the message from this debate is not only about the education and support and everything that we do—I endorse everything that Sarah Boyack said; I hope that it sends a message to the United States to underline, underpin and further resource the programme that is doing so much on the continent of Africa.
12:51
I congratulate Sarah Boyack on securing this debate and recognise her long-standing passion for the issue, the work that she has done with Waverley Care, and the work that she is doing overseas.
I draw members’ attention to my register of interests. I am a member of the Terence Higgins Trust, and I have been a member of it for a long time. That is in part due to when I came of age. I grew up in the 1980s and 1990s, when Mark Fowler was diagnosed as being HIV positive on “EastEnders”. That led to a national debate about what that meant. Freddie Mercury died when I was obsessed with Queen and all the rock music that was around. My childhood was framed around Band Aid. I watched AIDS ravage Africa, as it still does in many ways. That heightened my political interest in the HIV/AIDS debate, which is why I joined THT.
My membership of THT took a different personal meaning when a good friend of mine was diagnosed with HIV two years ago. That was a bit of a shock. He sat down and told me, and we talked through all the consequences that it would have for his life, job and relationship. We then had a drink, and it was all good and fine. I then got up, went home and cried all night because I knew that my friend was going to die. I knew that that would not necessarily happen tomorrow or in a few weeks’ time, but that it would happen and was likely to happen before I died. I found that really hard to deal with.
A few months later, that friend was walking to meet me—we were going for a coffee. He was on his mobile phone, accidentally walked into a lamp post and bashed his nose, which started to bleed. When he arrived and met me, he was in covered in blood. That was a despairing moment for him—not for me—because he was so conscious that he was covered in a thing that was everything that symbolised his illness. He felt a great sense that his body was a danger to me at that moment. I could see his despair and fear for our friendship, about how I might cope with the fact that he was bleeding, and about what to do about that.
I share those personal stories because each says something significant about the challenge that we still face around HIV/AIDS. Part of that is the stigma. All members who have spoken are right to have pointed to the great deal of ignorance that still surrounds HIV/AIDS. I was ignorant, too. My friend does not have to die. The Terence Higgins Trust report that looks at the greying element of the HIV/AIDS epidemic shows that people can live very well for a very long time with it. I was ignorant on that issue, even though I was very engaged in the debate.
Crucially—Sarah Boyack made this point—we must consider the support services that exist. I will forever be grateful to Waverley Care and the Terence Higgins Trust for the breadth and variety of the services that they run and operate, which have helped my friend. It is not only about his mental health; it is about the impact on his work, and how he can continue to go about his way of life and live his life to the full.
In conclusion, I once again thank Sarah Boyack for bringing the debate to the chamber, and I thank members for letting me share my very personal experiences.
12:54
I, too, congratulate Sarah Boyack on bringing this important debate to the chamber. I am pleased to have the opportunity to contribute and to highlight the work of the recently established HIV human rights and development network, which I am privileged to co-convene with my friend and colleague Kezia Dugdale.
The network’s aim is to run seminars, co-hosted by the University of Edinburgh, based on cutting-edge research and good practice examples, which it is hoped will raise awareness and influence policy outcomes that relate to HIV, human rights and development. It acts as a platform for the exchange of knowledge across different fields, from practitioners and policy makers to interested parties and activists. The network has the support of a range of partners, which are Scotland’s foremost HIV charities: Waverley Care, HIV Scotland and the Terrence Higgins Trust. In addition, it has the support of the Church of Scotland HIV programme and Queen Margaret University.
I pay tribute to my constituents Dr George Palattiyil and Dr Dina Sidhva, whose research and commitment to highlighting these important issues has been instrumental in establishing the network. Their report, “They Call Me ‘You Are AIDS’” gives us a chilling insight into the lives of many HIV-positive asylum seekers in the United Kingdom who
“left behind persecution, violence, gang rape and discrimination as they fled their country, seeking to find a place of safety.”
Unfortunately, many of those vulnerable women and men are met with stigma, financial difficulties and discrimination when they arrive in the UK, which makes it difficult for them to find a safe place to live. Then there are challenges around access to health treatment, which leaves them susceptible to further vulnerabilities. At the seminar that the network held in the Parliament last week, it was highlighted that someone classified by the Home Office as a person of no status has no address and therefore cannot register with a general practitioner and cannot access health treatment.
That is why as well as marking world AIDS day, the theme of which is striving towards an AIDS-free generation, I also highlight human rights day on 10 December and international migrants day on 18 December, which recognises the rights of migrants throughout the world.
HIV has been a feature of the developing world for many years, as colleagues have said. In countries such as Botswana and Lesotho, nearly a quarter of people aged between 15 and 49 have been diagnosed with the disease. I will put that into perspective. There are 200,000 orphans living in Lesotho, of which 140,000 have been orphaned because of AIDS, according to UNICEF. The reason for that tragic figure is that only 50 per cent of diagnosed people in the world are able to access antiretroviral therapy, due to a variety of factors that include fear of stigma, the lack of a fully developed and accessible health care system and poor rural infrastructure.
I agree with the observations made by Professor Lesley Doyle of the University of Bristol’s centre for health and social care. She said that from the perspective of rich countries it is easy to think that the HIV and AIDS pandemic is a thing of the past, but that is not the case, as countries in the developing world continue to face a series of epidemics.
In the current climate of austerity, funding gaps between the needs of people in the developing world and the resources available are becoming wider, which is hitting the poorest countries hardest. Although the uptake of antiretroviral therapy has improved dramatically in the past decade, significant challenges remain. The medicine has to be taken for the rest of the individual’s life, so more funding will be required to sustain and increase the uptake of medication and care for the ill in their later years.
We must strive to educate people in Scotland and the developing world to dispel the myths of HIV and AIDS. We need to build on the success of recent decades to ensure that all people in the developed and developing world who are infected with HIV and AIDS are able to access appropriate and lifelong treatment and care and to live longer and healthier lives, and that their human rights are upheld.
12:59
I, too, thank Sarah Boyack very much for securing this important debate. She asked whether we can even begin to talk about the end of AIDS. For a very long time, it has been clear that this virus would not give way to a single magic bullet, some quick technofix or solution that would work overnight and consign the epidemic to history and that, instead, we would have a thousand defeats and a thousand victories along the way. There have been more victories than defeats as humanity continues to battle this epidemic, but both are still with us.
As a youth worker for an HIV agency in what is long enough ago to feel almost like a past life, I saw those victories and defeats on a small scale. It felt fantastic to see a young person who just a few months previously had been nervous, unsure of themselves and without the knowledge and skills to begin to think about how HIV would affect their lives progress to becoming a young, confident person finding their own voice and the opportunity to challenge ignorance and prejudice and to empower others to take the same attitude to HIV. On the other hand, when we hear a 17-year-old quietly and privately confiding that he has just had an HIV diagnosis, it is hard not to feel it as a bitter defeat; to be honest, it is hard not to beat ourselves up and feel responsible for it. Such victories and defeats are continuing around the world as well as in Scotland.
Although HIV is in many ways changing, although the science is continuing to develop and although the life chances of the people who live with the virus continue to change, some things stay the same. Sarah Boyack and others have talked about the continuing misconceptions and ignorance in our society and people who are HIV-positive would say the same. The Terrence Higgins Trust recently published the results of its survey of HIV-positive people, who talked about the misconceptions, the myths and the ignorance that they encounter every day. The most common was that HIV and AIDS are the same thing; that an HIV diagnosis is a death sentence; that someone with HIV cannot access financial products such as mortgages or life insurance; or that they cannot or should not have a relationship with someone who is not HIV-positive.
There is also the increasing myth that there is a cure or vaccine for HIV. As our victories continue to mount up globally and as we get closer to universal access to antiretroviral therapy around the world, preventing the idea that HIV has been solved from lodging in the minds of each new generation in particular will be an increasing challenge. If access to antiretroviral therapy becomes universal—which is, I am sure, something on which all of us want progress to be made as quickly as possible—we must avoid the danger of creating a perception among young people that HIV is not a problem any more. If we want to provide that access to antiretroviral therapy, we need to redouble our efforts with regard to prevention.
I look forward to the minister’s comments about what we can do domestically in Scotland and the contribution that we can make around the world to tackling these on-going challenges.
13:03
Like others, I congratulate Sarah Boyack on securing time for this debate, which raises the profile of the 25th world AIDS day last Sunday. As several members have pointed out, this is a topic of global importance and it is worth bearing in mind that, worldwide, the tide is starting to turn, with the lowest number of new infections recorded since the late 1990s and a 40-fold increase in access to treatment over the past 10 years.
However, despite that progress, the stark reality is that there are still more than 35 million people living with HIV and that there were 1.6 million deaths from AIDS last year. In Scotland, more than 4,500 people have been diagnosed and are living with HIV, and the vast majority of them are receiving specialist care. Very high numbers are on treatment and many will have undetectable viral loads. However, in Scotland, there is still nearly one new HIV diagnosis every day. It is worth keeping in mind the fact that an estimated 22 per cent of our HIV positive population remain undiagnosed.
It is for those reasons that HIV continues to be a public health priority in Scotland. Our policy in this area is articulated through the sexual health and blood-borne viruses framework, which is supported by almost £30 million every year. The emphasis is on the importance of prevention, testing and diagnosis and on the provision of treatment and care to those who are infected. The national advisory committee on sexual health and blood-borne viruses is responsible for taking the framework forward. I chair the group, and it includes a range of stakeholders from across the sector who support us in this policy area.
Members will recognise that significant progress has been made over the past 25 years. Thanks to needle exchange programmes, HIV transmission through injecting drug use is now rare—there are fewer than 20 cases a year on average. Pregnant women are now routinely offered antenatal screening for HIV and, with the right care, the risk of mother-to-child transmission is less than 1 per cent. Due to treatment advances, many people with HIV are now living into old age, with 31 per cent of those who are HIV positive in Scotland now aged over 50.
However, still too many people are being infected and prevention is a priority. That is why, over the past two years, we have invested almost £200,000 in research by NHS Lothian and NHS Greater Glasgow and Clyde to examine the risk behaviours among men who have sex with men. The results of that work, which will emerge over the coming months, will inform service development and policy in the coming years in Scotland and will also add to the international evidence base for measures that can be implemented globally.
Of course, the other area in which we still need to do more is that of stigma and discrimination. In that regard, it was great to see the efforts that were made across Scotland to recognise world AIDS day on Sunday. We should congratulate HIV Scotland for its light up Scotland campaign, which saw more than 50 buildings across Scotland being lit up red to mark the day. I was pleased to arrange for St Andrew’s House and Victoria Quay to participate in the event. I am aware that a range of community events also took place, involving health boards and other sectors and recognising local activity around world AIDS day.
Reducing stigma is one of the five high-level outcomes that are set out in the framework. That is why, over the past year, we have conducted research into the most effective way in which to take forward a national campaign on the issue. Interestingly, the research found that a campaign by the Government was more likely to increase fear and stigma and that a campaign that was run by the voluntary sector was seen as more acceptable by the public. That is why we have decided to fund Waverley Care with more than £270,000 to deliver the always hear campaign. Campaign resources have already been distributed and are being used widely across Scotland. By any measure, the campaign has been a success and has helped to give a voice to people living with the disease. I look forward to continuing to work with Waverley Care to develop and expand the always hear campaign over the next 12 months.
In looking to the future, we continue to hope that there will be a cure or a vaccine, but those remain some way off. However, members will be aware that changes in the law mean that, from next year, for the first time, it will be possible to buy HIV home testing kits in Scotland. That development should help to remove barriers to testing and diagnosis for those who may fear stigma, as, in the future, people will be able to conduct tests themselves in the privacy of their own homes. We are working with our partners in NHS Scotland to ensure that NHS Scotland is able to deal with any issues that arise from self-testing, and HIV Scotland held a seminar for health boards on that topic last week.
I hope that I have emphasised to members that HIV remains a priority for the Government. Our efforts to test, diagnose and treat those who are affected will continue. We will continue to invest in prevention and we will do all that we can to ensure that people who are living with HIV are able to live longer, healthier lives free from stigma and discrimination.
13:11
Meeting suspended.
14:15
On resuming—