It’s only a week until the general election on Thursday, 7th May. It looks like being the closest election in living memory, meaning the way you vote could be the most important political decision of your life.
With lots of talk about care, health and the NHS, it’s difficult to see where our political parties position themselves in terms of support for people living with HIV. This isn’t surprising as focus tends to be put on financing and restructuring health and social care, rather than on individual health conditions.
Do you know who your voting for yet or are you still not sure? – If you’re not, you are not alone! Polls show that more people than ever before are still trying to decide which of the parties to support.
Part of the problem is information overload. We’re drowning in fact and figures about politics, claims and counter-claims from the politicians and their spin-doctors. How is anyone supposed to cut through it all to the things that really matter to them?
You may be asking, as a HIV positive individual, what party will ensure my care, and what HIV (or anti-HIV) policies can I expect from our government and now is the time to decide if you prefer to vote for the status quo, or vote for change.
A HIV diagnoses is only part of the issue, what to matters is access to GP’s and ensuring our NHS is adequately staffed to support patients in need of medical assistance. While there’s no direct messages from our political leaders about HIV, (other than sensationalised media reports) we can see their pledges for health & social care which directly affects not just people living with HIV, but for many other people who use public services.
The following information is provided to help give clarity across the parties’ pledges. We are obviously not advising you who to vote for but we hope this information is useful if you are yet to make up your mind.
What is the main message?
A strong NHS built on a strong economy, prioritising frontline care
Will rescue the NHS, invest in its future and join up services from
home to hospital
Quality health for all, with a guarantee of equal care for mental health
Fund frontline services and encourage a common-sense approach with less political interference
A publicly funded, publicly provided NHS and an end to the privatisation of services
How much money have they pledged for the NHS?
A minimum real-terms increase of £8 billion a year by 2020
An annual £2.5 billion ‘time to care’ fund, paid for by a mansion tax, a levy on tobacco firms and by tackling tax avoidance
Funding to be £8 billion a year higher by 2020
Increase frontline NHS spending by £3 billion a year by 2020
An immediate increase of £12 billion a year, rising to £20 billion a year by 2020, raising some of the extra revenue from higher taxes on alcohol and tobacco
What about social care?
No commitment to increase social care funding. A guarantee that no one will have to sell their home to fund residential social care.
No commitment to increase social care funding. Year-of-care budgets to incentivise better care at home, an end to 15-minute home care visits and a ban on zero-hours contracts for care workers.
No commitment to increase social care funding. Reduce pressure on hospitals by investing £500 million a year in services close to people’s homes.
Increase social care funding by £1.2 billion a year by 2020
Provide free social care for older people, spending an additional £9 billion a year by 2020
Yes – senior Conservatives have publicly backed it, and their funding commitments are closely tied to it
In principle – Andy Burnham has stated his support but made clear Labour would make ‘fundamental changes’ that would alter the assumptions it is based on.
Yes – senior Liberal Democrats have made their support clear, and they were the first party to commit to the £8 billion funding increase it calls for
No mention of it
No mention of it
What are their plans to access to services?
All patients to have access to GPs and hospital care seven days a week by 2020. Guaranteed same-day appointment with a GP for everyone over 75.
Guaranteed GP appointments within 48 hours, or on the same day for those who need it. A maximum one-week wait for cancer tests and results by 2020
Easier access to GPs, expanding evening and weekend opening, and
encouraging phone and Skype appointments
Initiate a pilot programme to put GPs on duty in A&E departments seven days a week. Fund 8,000 new GP posts, with 1,000 of these designated to work on duty in A&E departments if the pilot programme is successful
Provide local community health centres offering a range of services including out-of-hours care, to sit alongside GP surgeries
Have they committed to more staff?
Yes – 5,000 more GPs to be trained by 2020
Yes – the ‘time to care’ fund would pay for 20,000 nurses, 8,000 GPs, 5,000 care workers and 3,000 midwives
No specific pledge
Yes – an extra 20,000 nurses, 8,000 GPs and 3,000 midwives
Yes – 400,000 jobs to be created across health and social care
What pledges have the made about mental health?
Ensure that psychological therapists are available in every part of the country. Ensure that women have access to mental health support during and after pregnancy
Increase the proportion of the mental health budget spent on children A new right to psychological therapy in the NHS Constitution
An extra £500 million a year for mental health services to improve access and reduce waiting times A raft of proposals to improve mental health services, in particular for children, pregnant women and new mothers.
Increase mental health funding by £170 million a year
End the postcode lottery for psychiatric liaison services in acute hospitals and A&E departments
Ensure that spending on mental health rises and that everyone who needs a mental health bed can access one in their local NHS, or within a reasonable distance of their home if specialist care is required. Eliminate the use of police cells as ‘places of safety’ for children by 2016, and for adults, other than in exceptional circumstances, by the end of the
What are they saying about public health?
Review how best to support people with conditions such as obesity or drug or alcohol addictions to remain in or return to work
Set maximum limits on levels of fat, salt and sugar in food marketed to children. Set a new national ambition to improve the uptake of physical activity and take targeted action on cheap, high-alcohol drinks.
Restrict the marketing of junk food to children. Introduce a tax levy on tobacco companies to contribute to the costs of smoking cessation services and implement minimum unit pricing for alcohol
Oppose minimum pricing of alcohol and reverse plain packaging legislation for tobacco products.
Introduce a minimum price of 50p per unit for alcoholic drinks
Extend VAT to less healthy foods, including sugar, spending the money raised on subsidising around one-third of the cost of fresh fruit and vegetables.
Would they repeal the Health and Social Care act?
A bill in their first Queen’s Speech to repeal the Act – this would roll back competition, make the NHS the preferred provider of services and restore the Health Secretary’s responsibility to provide a comprehensive health service
No, but committed to repealing any parts of the Act that make NHS services ‘vulnerable to forced privatisation’ and ending the role of the Competition and Markets Authority in health
Yes – repeal the Act by introducing an NHS Reinstatement Bill to abolish competition and the commissioner–provider split and restore the Health Secretary’s responsibility to provide a comprehensive health service.
You can find all the information above and more policies within the party manifesto’s. Click on the icons below to visit the party’s manifesto.
The three main political party leaders in the UK have all praised the HIV prevention drug PrEP.
David Cameron, Nick Clegg and Ed Miliband were all asked about their support for PrEP during a Q&A for GT (Gay Times) Magazine. The drug is taken before sex to reduce the risk of getting HIV.
They were asked: “Do you agree with the National AIDS Trust and other charities that PrEP should be made available on the NHS to gay men who need it as soon as possible?”
Prime Minister David Cameron, despite saying he supported the idea of looking into the drug in principle, said the National Institute for Health and Care Excellence would need to make the decision on whether it should be available on the NHS.
He said: “I think it’s fantastic that over the course of the last 30 years, AIDS has gone from being a very serious and fatal disease to one that can be treated – and is now on the cusp of being one that can be prevented. Too many people have lost loved ones and seen friends and families suffer from AIDS, so it’s right that we look very carefully at PrEP. However decisions on individual drug availability are made by the independent National Institute for Health and Care Excellence (NICE) and not politicians – so it’d be inappropriate of me to prejudge their decision.”
Deputy Prime Minister Nick Clegg, added: “The NHS is looking. We’ve had these studies and tests – like the PROUD Study – which appears to have confirmed the clinical effect of the drug in terms of preventing HIV. But the NHS now, quire rightly, is looking at what this actually means. Would it be clinically prescribed? And to who? And for what periods of time? Is it a one-off prescription or is it an ongoing thing? That’s all being looked into at the moment.
“PrEP sounds like a fantastic medical innovation which can keep people safe from HIV infection, but of course, what we wouldn’t want is for people to take it and risk contracting other illnesses and infection because they practice less protected sex. I don’t think we should, under any circumstances, regard any drug as a sort of wonder drug that suddenly means all risk is removed. But at the end of the day, it’s up to the NHS to look at the studies and work things out as they so publicly need to be worked out.”
And Ed Miliband, the leader of the opposition, also gave his support, saying: “The recent medical evidence that’s come out about PrEP is obviously very positive – it’s a positive step forward. And it could make a real difference. There’s obviously proper clinical processes that we’ve got to go through, with the National Institute for Health and Care Excellence (NICE), to look at this. I’m obviously sympathetic, and the evidence is incredibly encouraging, but this has got to be led medically.”
The move was welcomed by HIV charity the Terrence Higgins Trust (THT).
Dr Rosemary Gillespie, Chief Executive at THT said: “This cross-party support for PrEP goes to show just how seriously PrEP is being taken as a vital tool in our efforts to reduce HIV transmission in the UK. We need to turn these positive words into action so PrEP can be made available on the NHS for those most at risk as soon as possible.”
NAM is an award-winning, community-based organisation, which works from the UK. They deliver reliable and accurate HIV information across the world to HIV-positive people and to the professionals who treat, support and care for them.
The National AIDS Trust and HIV Scotland have joined together to identify the key priorities for the new Parliament which will reduce HIV transmission and improve the lives of people living with HIV across the UK. They are calling on the next UK Government to commit to the following:
1. Retain the protections set out in the Human Rights Act, which acts as a safeguard to ensure people living with HIV can live a meaningful, safe and fulfilled life.
2. Introduce compulsory Sex and Relationships Education for all schools, which is inclusive of young people of all sexual orientations and gender identities and has appropriate sexual health and HIV content – in the first session of the new Parliament.*
3. Make HIV prevention a national public health priority, with effective funding, more varied testing options and access to the full range of prevention information and choices for all who need them.*
4. End HIV stigma in the NHS and social care through the training of all NHS and care staff.*
5. Ensure that people affected by HIV-related sickness or disability have the support they need by committing to the Disability Benefits Consortium’s Five Things You And Your Party Can Do For Disabled People.
Deborah Gold, chief executive of NAT (National AIDS Trust), said: ”HIV has already been talked about during the general election but now we need to focus on how we can decrease the number of people getting HIV in the UK, how we can reduce the shocking levels of stigma and ignorance around the disease, and how we can ensure people living with HIV are treated with respect and dignity.”
George Valiotis, chief executive of HIV Scotland, said: “The responsibility for many of the decisions that affect HIV are devolved in Scotland – sex and relationships education, HIV prevention and the training of NHS and care staff. Despite this, the new UK Government has a key role to play north of the border. Chiefly retaining a commitment to the Human Rights Act and ensuring dependable, fair access to welfare support for those who need it.”
The charities are asking voters to raise these issues when talking to candidates and to share the five HIV asks. This is part of a cross-sector campaign, with Terrence Higgins Trust joining the call for the new Government to take action on sex and relationships education, HIV prevention for England and a stigma-free NHS.
Primary school-aged children in the UK need more education on how to avoid sexual abuse, says a leading academic.
Children who have been on abuse prevention programmes are more likely to tell an adult if they have been abused, suggests a global study.
The researchers looked at data on some 6,000 children in seven countries.
The data “supports the need to inform and protect children”, said lead author Dr Kerryann Walsh, of Queensland University of Technology.
Dr Walsh was speaking ahead of publication of the review by the global independent research network Cochrane.
It focused on data from 24 trials where a total of 5,802 largely primary school-aged children took part in school-based prevention programmes.
These trials took place in the United States, Canada, China, Germany, Spain, Taiwan and Turkey and were judged to be the most scientifically robust ever conducted in the field.
Some took place recently, though others dated from the 1980s.
The review says that worldwide an estimated one in 10 girls and one in 20 boys experienced some form of sexual abuse in childhood.
Who to tell
The schools focused on consent with education on body ownership and “private parts”, when it is acceptable to touch, what “secrets” are acceptable, as well as how to avoid dangerous situations and who children should tell if they have been abused or are afraid.
They used a variety of methods including films, plays, songs, puppets, books and games.
The data suggests the programmes successfully boosted children’s awareness and knowledge of sexual abuse and they were likely to remember what they were taught six months later.
Children who had taken part were more than three times more likely to disclose sexual abuse than those who had not.
The researchers warn the figures are imprecise, but they suggest some four in 1,000 children who had not taken part were likely to report abuse, rising to some 14 in 1,000 among children who had taken part.
In some of the trials researchers cross-referenced the disclosure figures with police and social service records.
A few trials included “simulated abuse scenarios” where children were asked to leave the school with someone they did not know.
These found children who had participated in anti-abuse programmes were less likely to agree.
The researchers warned this may not be replicated in real life.
“Tests cannot mimic real abuse situations very well,” said Dr Walsh.
However, Cochrane’s editor-in-chief, Dr David Tovey, said the data showed the programmes were effective overall.
“If we were talking about a drug and had odds ratios of this level it would be considered a very substantial effect.”
No UK trials were included as none met the stringent criteria required in terms of methodology and data.
However, the researchers said there was no reason to believe UK children would be “terribly different from those in the studies”.
Dr Walsh said similar programmes already exist “in patches in the UK”, but the lack of an audit meant they did not know “what is being offered out there”.
She said any new programmes should be robustly evaluated and focused on seven to 12-year-olds, the age group most vulnerable to abuse.
“If you are going to do it – you should begin in these risk years.”
Last month England’s education secretary, Nicky Morgan, announced that all children from the age of 11 would be taught about sexual consent.
The NSPCC has called for the next government to make sex and relationship education a statutory right for every child and young person.
A new type of HIV treatment involving the transfusion of a synthetic antibody designed to prevent the virus from attacking human cells has shown startling trial results.
Patients injected with the antibody saw a 300-fold reduction in their viral “load” – the amount of HIV circulating in their blood. The antibody has been specifically designed to block the key viral protein receptor needed to infect human blood cells.
Previous tests on HIV antibodies had produced disappointing results. But the latest clinical trial resulted in a dramatic lowering of the virus, which was maintained for several weeks after the initial injection for some patients.
The researchers believe that using synthetic antibodies designed to become attached to the surface proteins on the outer membrane of HIV could provide an alternative form of treatment to anti-retroviral drugs, and may also help to design therapeutic vaccines.
It is the first time that a new generation of HIV antibodies has been tested in phase 1 clinical trials. Further trials could eventually lead to them being used in combination with existing anti-retroviral drugs to maintain better control over the infection to prevent the onset of Aids, the scientists said.
“One antibody alone, like one drug alone, will not be sufficient to suppress viral load for a long time because resistance will arise,” said Marina Caskey of the Rockefeller University in New York, the lead author of the study published in the journal Nature.
“What’s special about these antibodies is that they have activity against over 80 per cent of HIV strains and they are extremely potent,” Dr Caskey said.
HIV-infected patients in the trial received different doses of the antibody. The eight patients who received the highest dose showed up to 300-fold decreases in the amount of circulating HIV in their blood, and in half of them the viral load remained below starting levels at the end of the eight-week study.
“This exciting novel study shows for the first time that antibodies may have a place in the line of therapies directed against HIV,” said Professor Vincent Piguet, director of the institute of infection and immunity at Cardiff University, who was not involved in the study.
“This is good news for the fight against HIV, but a fully developed antibody to treat HIV-1 might still take a few years to develop,” he added.
The antibody is known as 3BNC117 and was originally isolated in the same laboratory where the latest work was carried out.
The antibody is a protein that attaches to the key receptor on the outer protein coat of the HIV virus which binds to the membrane of the human T-cells it infects.
Tests have shown that 3BNC117 is effective at controlling 195 of the 237 strains of HIV – making it a “broadly neutralising” antibody that could be used in many HIV patients, the scientists said.
These broadly neutralising antibodies are naturally produced in about 10 or 30 per cent of people with HIV, but only after several years of infection when the virus has typically evolved to “escape” from these powerful antibodies.
By making synthetic copies of the antibody and infusing large enough amounts of them at an earlier stage in a patient’s infection, the researchers hope to suppress the infection and make it easier to control with the help of other treatments such as anti-retroviral drugs.
“In contrast to conventional anti-retroviral therapy, antibody-mediated therapy can also engage the patient’s immune cells, which can help to better neutralise the virus,” said Dr Florian Klein of Rockefeller University and a co-author of the study.
Dr Andrew Freedman of Cardiff University, said: “Although such antibody treatment would not be sufficient on its own, it might prove useful in combination with drug therapy, as a means of achieving better long-term control or even cure of HIV infection. It may also be effective as a way of preventing HIV infection, in the absence of a vaccine.”
HIV treatments: Breakthroughs and false dawns
A trial earlier this year involving 12 NHS trusts across England found that gay men who took a daily pill containing a cocktail of two anti-retroviral drugs significantly reduced their risk of contracting HIV by an unprecedented 86 per cent. The Proud study found that pre-exposure prophylaxis (PrEP) could be a “game changer” in reducing new infections and may be cost effective in terms of reducing the rise of HIV disease.
Two other patients with HIV who had been thought to be cured following treatment for blood cancer suffered a viral “rebound” in 2013. Researchers in Boston said they had been unable to detect any signs of HIV in either patient following their treatment – a bone-marrow transplant for lymphoma cancer. However, both patients have since returned to taking anti-retroviral drugs after HIV reappeared in their bloodstream.
Timothy Brown, the “Berlin patient”, remains the only person with HIV to be “functionally cured”. Mr Brown, who now lives in San Francisco, received a bone-marrow transplant in 2007 to treat leukaemia. The donor was carrying a specific mutation that prevents HIV from attacking white blood cells. However, such transplants are risky, expensive and not suitable for widespread treatment.
Posted onMarch 24, 2015byTom|Comments Off on Today is World Tuberculosis Day. What could this mean for you?
World Tuberculosis Day is marked every year on 24 March, highlighting one of the world’s top health challenges. With nine million new cases and 1.5 million deaths each year, tuberculosis is an ongoing epidemic.
For World TB Day 2015, the United Nations, the Stop TB Partnership and the World Health Organization are calling on all governments and health organisations to mobilise political and social commitment for further progress towards eliminating the disease as a public health burden. The theme this year is “Reach the 3 Million: Reach, Treat, Cure Everyone” – aimed at securing care for the three million who fail to be treated every year.
The date commemorates the day in 1882 when Dr Robert Koch, the German physician and pioneering microbiologist, announced to the University of Berlin’s Institute of Hygiene that he had discovered the cause of tuberculosis. His discovery marked a turning point in the story of the virulent human infectious disease.
Yet over a century on, the disease continues to be a public health problem, with the highest rates in Sub-Saharan Africa. A report by the European Centre for Disease Prevention and Control and WHO found that 1,000 people a day throughout Europe develop the disease and although the continent has experienced an annual 6% decline, Europe will not be TB-free until the next century.
There has been a sustained decline in cases over the last decade but rates of multi-drug resistant tuberculosis, MDR-TB, remain at very high levels.
WHO regional director for Europe, Zsuzsanna Jakab, said only 50% of an estimated 75,000 multi-drug resistant TB patients were found in 2013 and just half were successfully cured.
“Multi-drug resistant TB is still ravaging the European region, making it the most affected area of the entire world,” he said.
TB & HIV Co-infection
When people have a damaged immune system, such as people with HIV who are not receiving antiretroviral treatment, the natural history of TB is altered. Instead of there being a long latency phase between infection and development of disease, people with HIV can become ill with active TB disease within weeks to months, rather than the normal years to decades.
Many people living with HIV are now taking antiretroviral treatment for their HIV infection. This helps their immune system, but the risk of developing active TB is still higher than in people without HIV infection. Also, there are reports from some African countries that people are starting to become infected with drug resistant HIV. This makes it much more difficult to provide them with effective antiretroviral therapy, and this in turn could result in millions more, of the estimated 40 million people thought to be living with HIV worldwide, developing active TB in the next few years.
Posted onMarch 23, 2015byTom|Comments Off on Living with HIV: six very different stories
‘I don’t know how I survived’: Jonathan Blake at home in London. Photograph: Antonio Olmos for the Observer
Since HIV was first diagnosed in Britain 30 years ago, the reality of having the virus has changed dramatically. From a survivor of the 1980s epidemic to a recently diagnosed mother in her 60s, Eleanor Tucker hears six life-affirming stories
Lives in London with his partner. He was one of the first people to be diagnosed with HIV in this country
The only thing that stopped me committing suicide was that I couldn’t bear the thought of someone clearing up my mess. It was 1982, and I’d been to my GP with the kind of swollen glands that hurt when you shook hands with someone. Tests showed I had HTLV3, the original name for HIV. At the time there was all this news filtering in from the US about a mystery illness – that it was terrifying, and terminal. If I can’t kill myself, I thought, I’d better just get on with it.
They wanted to put me on AZT, later revealed to be a failed chemotherapy drug. I refused – I didn’t trust the drug companies; still don’t. But saying no might have saved me. I saw so many people die – of the virus, but also from the drugs. In the back of my mind was always: “It doesn’t matter, I’m going to die soon anyway.” So I got out there and lived my life.
Not long after my diagnosis I met my partner, Nigel, then got involved with LGSM: Lesbians and Gays Support the Miners. I thought we’d take the story of what we did, raising money for the mining families of a town in Wales, to the grave. But a film about it, Pride, came out last year. I like the way my character [played by Dominic West] is portrayed: he’s neither a victim or tragic – HIV is just part of who he is.
I managed with no medication until 1996 and then tried different combinations until I found the one I’m on now. My health is not perfect, but I’m here 30 years later. I don’t know how I survived. The funny thing is, this life I’ve had with HIV, I wouldn’t have missed it for the world. It’s taken me on some amazing adventures.
Lizzie Jordan, 33
Was diagnosed in 2006. She lives with her 10-year-old daughter
I had been with my partner Benji for four years and our daughter Jaye was just 13 months old. One day Benji came home feeling unwell. We thought it was just a sinus infection, but within four days he was dead.
Postmortem examinations showed that he had something compromising his immune system. That something was HIV. I was tested soon afterwards – as was Jaye, who I was still breastfeeding. Her result was negative. Mine was positive. At that point I was in shock. My only reference point was Mark Fowler in EastEnders. But I’m a mother and I had Jaye to think of, so I just had to keep going.
Although my first thought was to keep my diagnosis a secret, I realised there were women Benji had slept with before me who needed to know. So I decided to be as open as I could. It was hard, though, and his family refused to believe that he’d had Aids. Some of them even blamed me.
That was eight years ago. Today I am happy, healthy and symptomless. I started taking medication last year, and it’s just one pill a day.
Jaye is 10 now and I have told her age-appropriate things. To start with, it was as simple as “Mummy has bugs in her blood.” Now she understands a lot more.
I have never come up against negativity, which I think is partly because I’m open about my situation. I’ve dated other HIV-positive people, but recently I met someone on Twitter who isn’t. It says on my profile that I write for beyondpositivemagazine, but I had to check he knew what that meant. He did. It’s a relief when it doesn’t matter to people, but there’s still a lot of work to be done.
Steve Craftman, 58
Lives in Dyfed, Wales. He was diagnosed in 1987
There are three epidemics, in my view: the newly diagnosed, who are going to lead pretty normal lives; those who recovered from the early days – the 80s and 90s; and then there are the people like me, who survived but with a lot of health problems.
Back then they gave us five years at the most. I made it through, but I’ve got many health problems, mainly due to the medication I took. I have osteopenia [the stage before osteoporosis] in my ankles and hips, which means I feel unsafe riding a motorbike now. The damage to my body is nobody’s fault – the doctors didn’t know what they were dealing with, and the drugs were so strong. You could say I fell out of the side-effect tree and hit every branch on the way down.
I’ve done a lot of grieving, lost a lot of friends and lovers. It’s not easy and it’s often lonely. In America they’ve come up with a name for it: Aids survivor syndrome – a bit like PTSD. I’m still here, though, nearly 30 years on. Am I tough? Not really. I think I’ve just been lucky.
I’ve had my fair share of prejudice over the years. I was living in Bristol 10 years ago with my partner, John. We had abuse and threats shouted at us, and our car was vandalised. The police advised us not to pursue it – they said we’d be better off moving on. We set up home in a tiny village in Wales, where we were more accepted than in the city. John died there, from Aids, in 2007.
I’m open about my situation. At a hospital appointment recently, the doctor asked if I was “out” about the fact that I have Aids. I turned round and showed her the “biohazard” symbol I had tattooed on the back of my neck last year. “I’m guessing that’s a ‘yes’ then,” she said.
Matthew Hodson, 47
Lives in London with his husband. He was diagnosed in 1998
I was tested in 1998 after they announced at the International Aids Conference in Vancouver that combination therapy was effective. I suppose I needed to know that there was some treatment that would work first before I wanted to know. Back then, you were told that HIV might take five or 10 years off your life. Now, your life expectancy is the same: they call it “life altering”, not “life limiting”.
I didn’t take it very well and for a while I stopped having sex and felt dirty, diseased. But people go in different directions, and after I’d thought all the worst-case scenario stuff, about not making it to 50, I took control.
Starting new relationships was hard. There are more interesting things about me than the presence of a virus, but I can see that someone would want to know. Thankfully I’m married now, so I don’t need to worry about disclosure. If I wasn’t, I think I’d tell people straightaway. I have a job, I’m secure and I’m comfortably off – if I can’t be upfront about it, who can? In a way, it’s my responsibility.
As part of my job with I’m chief executive of the gay men’s health charity GMFA, so I often speak to recently diagnosed young men. They picture themselves wasting away like Tom Hanks in Philadelphia. We need to remember these images are part of history now – but there’s still a lot of bad information around. It’s because HIV is largely sexually transmitted and it’s often gay men who have it. There are still the remnants of deeply homophobic attitudes in this country. They’re not the prevailing voices any more, but it’s hard to drown them out completely.
It’s frightening to look back. If you were a young gay man in the mid-80s, you would have experienced a loss comparable to someone who survived the First World War. I knew 30 people who died during that period, but many men knew many more.
Jo Josh, 66
Lives in Reigate. Diagnosed in 2008. She has a 25-year-old daughter
HIV infection conjures up an image in people’s minds. Most infection is via unprotected sex and for a lot of people that means there’s something nasty about it. I hate the word “disclosure”. I don’t feel I have to “disclose” if I don’t want to. I didn’t tell my daughter until I’d come to terms with it myself. She was 18 at the time, and I was in shock. It takes a couple of years. To start with you don’t know much about HIV, how much better the medication is these days. Then you start to realise it’s going to be OK.
I “came out” by going on BBC News for Body & Soul, an HIV charity I’m involved with. Afterwards the phone wouldn’t stop ringing. My friends were supportive, but very emotional. A lot of them used the “death voice”, telling me how brave I was. “No, really, I’m fine,” I’d say. There were a few silences though.
I’m just wrong for HIV: female, 60s, middle class. Some people can’t deal with it. I don’t yet need any medication and I feel like a fraud sometimes. I’ve become a kind of pin-up for ageing with HIV. I don’t talk about how I was infected, though. It starts to become a bit of a soap opera, and I’m more interested in being open about life with HIV than how I got it. That’s the only way we’re going to change perceptions.
Becky Mitchell, 40
Diagnosed in 2012. She lives in Bristol
I can’t say I was delighted when I was diagnosed, but I wasn’t totally freaked out. As part of my job with the Environment Agency I saw a lot of our former chairman, Lord Chris Smith, a high-profile HIV-positive man. He always seemed so active. I thought: maybe it’s not so bad these days.
I’d had a test when I found out my partner was HIV positive. He’d chosen not to tell me, so that was the end of our relationship. I wasn’t showing any symptoms, and I’d actually only been infected about two or three months before. With my CD4 count [the white blood cells that fight infection] still at a safe level, I wouldn’t normally take medication at this stage, but I volunteered for a clinical trial where they wanted people with good counts and low levels of the virus. So I’m taking one pill a day.
Because of the medication, and the fact that I look after myself, my health is really good. I’m more careful, too: I used to push myself too hard when I was exercising – now I allow myself recovery time. Being open about my HIV is really important to me. There’s no shame. I’m a normal woman – I didn’t do anything risky; I just crossed paths with someone selfish. That could happen to anyone, and I want people to realise that. The only stigma I’ve ever come up against was actually within the NHS. I’d had a cycling accident and a young doctor asked me, in front of my mother, if I was an intravenous drug user. I was stunned, but it’s just ignorance, a lack of education.
I don’t feel any different physically, but HIV has been a wake-up call. I feel a sense of urgency: life is for living and I don’t want to waste time sweating the small stuff.