Tag Archives: Tom Hanks

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

‘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

Story via The Observer (@obsmagazine)
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Jonathan Blake, 65

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

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‘My only reference point was Mark Fowler in EastEnders’: Lizzie Jordan. Photograph: Antonio Olmos for the Observer

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.

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‘I’ve done a lot of grieving’: Steve Craftman. Photograph: Antonio Olmos for the Observer

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

0942344e-8d7e-47eb-a218-b9a4c2ff1daa-620x516‘If I can’t be upfront about it, who can?’: Matthew Hodson. Photograph: Antonio Olmos for the Observer

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

fb5c366f-73a0-4e1e-9dc2-091bbe486cb5-620x426‘I’ve become a kind of pin-up for ageing with HIV’: Jo Josh. Photograph: Antonio Olmos for the Observer

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.

60a69668-6fc0-469f-8d31-6df53cf50caf-400x600‘There’s no shame. I just crossed paths with someone selfish’: Becky Mitchell. Photograph: Antonio Olmos for the Observer

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.

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A History of HIV & AIDS – 1994

As we prepare to enter our 25th year, we are reflecting on the global HIV events from the last three decades.  HIV has swept across the globe touching communities on every continent.  Here’s an introduction to some of the key moments in the early global history of HIV.  Catch up on the story using the ‘Recent Posts’ link to the right.

We focus on 1994 today, when The Centre for Disease Control (CDC) released 13 hard hitting AIDS advertisements which was a significant move from their more subdue approach. The prevention method was the use of condoms, which were rarely seen or even mentioned on television.

“One of the television ads, entitled Automatic, features a condom making its way from the top drawer of a dresser across the room and into bed with a couple about to make love. The voice-over says, ‘it would be nice if latex condoms were automatics. But since they’re not – using them should be. Simply because a latex condom, used consistently and correctly, will prevent the spread of HIV.’ (Library Reference)

In February, Secretary Shalala announced the eighteen members of the National Task Force on AIDS Drug Development, which includes experts in AIDS drug development issues from academia, industry, medicine, the HIV/AIDS-affected communities, and Government.  The Chairman of the Task Force is the Assistant Secretary for Health. The FDA (Food & Drug Administration in America) provides administrative and managerial support for the Task Force.

In March, the actor Tom Hanks won an Oscar for playing a gay man with AIDS in the film Philadelphia.

Philadelphia was was the first big-budget Hollywood film to tackle the medical, political, and social issues of AIDS.  Tom Hanks plays Andrew Beckett, a talented lawyer at a stodgy Philadelphia law firm. Andrew had contracted AIDS but fears informing his firm.  The firm’s senior partner, Charles Wheeler (Jason Robards), assigns Andrew a case involving their most important client. Andrew begins diligently working on the case, but soon the lesions associated with AIDS are visible on his face.

I won’t tell you more in case you’ve not seen it yet, (spoilers are never nice)! Suffice to say it’s all about prejudice and discrimination in legal setting in the early 90’s.  It’s nice to see that laws have since changed but today, 18 years on we still have a long, long way to go in order to stop the ignorance and stigma left behind!

On March 29, The FDA asked condom manufacturers to begin using the air-burst test on all brands of latex condoms. This new test measures a condom’s strength, and may be an indirect indicator of its resistance to breakage during use.

By July 1994 the number of AIDS cases reported to the WHO was 985,119. The WHO estimated that the total number of AIDS cases globally had risen by 60% in the past year from an estimated 2.5 million in July 1993 to 4 million in July 1994.

It was estimated that worldwide there were three men infected for every two women, and that by the year 2000 the number of new infections among women would be equal to that among men.

At the end of July, it was announced that the WHO’s Global programme on AIDS would be replaced. The UN Economic and Social Council approved the establishment of a new “joint and cosponsored UN programme on HIV/AIDS”.  The separate AIDS programmes of the UNDP, World Bank, UN Population Fund, UNICEF and UNESCO would have headquarters with the WHO in Geneva.  Later in the year it was announced that Dr. Peter Piot, the head of the research and intervention programme within the Global Programme on AIDS, would be the head of the new UN program.

Official statistics for Brazil, with a population of about 154 million, indicated that some 46,000 cases of AIDS had been recorded, but estimates put the actual number at anywhere between 450,000 and 3 million cases. Two thirds of the known cases were in Sao Paulo state where AIDS was the leading cause of death of women aged 20-35.

In early August 1994, the Tenth International Conference on AIDS was held in Yokohama, Japan. It was the first of the International Conferences to be held in Asia.  No major breakthroughs emerged, and it was announced that in future the international conference would be held every two years.

An exciting study, ACTG 076, showed that AZT reduced by two thirds the risk of HIV transmission from infected mothers to their babies.  It was the most stunning and important result in clinical acquired immunodeficiency syndrome research to date because it was the first indication that mother-to-child transmission of HIV can be at least decreased, if not prevented. And it will provide a real impetus for identifying more HIV-infected women during pregnancies so that they could consider the benefit of AZT treatment for themselves and their children.”

Meanwhile in the Russian Federation, deputies in the Russian Parliament, the Duma, voted at the end of October to adopt a law making HIV tests compulsory for all foreign residents, tourists, businessmen and even members of official delegations.

India by this time had around 1.6 million people living with HIV, up by 60% since 1993 (identical to the global figure). Local and state governments were accused of underusing and misusing HIV prevention funds.

In December, President Clinton asked Joycelyn Elders to resign from the post of US Surgeon General, following a remark during a World AIDS Day conference that children could be taught about masturbation.  She was asked whether it would be appropriate to promote masturbation as a means of preventing young people from engaging in riskier forms of sexual activity, and she replied, “I think that it is part of human sexuality, and perhaps it should be taught.”

This remark caused great controversy and resulted in Elders losing the support of the White House. White House chief of staff Leon Panetta remarked, “There have been too many areas where the President does not agree with her views. This is just one too many.”

Elders was fired by President Clinton as a result of the controversy in December 1994.

Perhaps this unfolds unhappy memories if you experienced this discrimination first hand but to our younger audience who may not have lived during these times, it’s important to understand that prejudice, stigma and discrimination remained significant obstacles for sex education, HIV prevention and AIDS awareness throughout the 1990s and into the new millennium.

In closing today, someone recently told me that Tim Radford (A freelance Journalist) wrote a special report “the progress being made in the fight against the cleverest and most malevolent virus scientists have ever seen”.  The report also examines issues of stigma, discrimination, and the effect HIV/AIDS has on families. – I’m afraid I can’t link to it, but if anyone has a copy, please get in touch!

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