HIV Transmission: No “Good AIDS/Bad AIDS”, just people

As a newly appointed HIV psychologist, I’ve been taking some time to better inform myself. I’ve been reading NAM’s Living with HIV and this in itself has provided an opportunity to examine societal (and my own) prejudices. I notice my own resistance to reading the book on the bus. Will people assume I have HIV? Will they assume I’m promiscuous or a drug-user? As a young white woman, perhaps I’ll engender pity, probably the victim of an assault or an infected blood transfusion? Why does it matter to me if people make these assumptions?

As we come to the end of HIV testing week and prepare for World AIDS Day (1st December) HIV is very much in the media. An article interviewing Silvia Petretti of Positively UK really stood out to me

“How did you catch HIV?

I find this question very judgmental. Whether I say that I got HIV by selling sex, injecting drugs, from my husband or my mother in the womb, this puts me in a category.  Either I’m an innocent victim or somebody reckless, who got what they deserved – as the coverage around Charlie Sheen seemed to suggest. It’s the reason so many women living with HIV shy away from the media. It doesn’t matter how I got HIV. It matters how I live with it.”

To me, this quote gets to the heart of our attitudes towards HIV. When we find out someone has HIV we want to know WHY. We associate HIV with sex and sex always gets our attention. Perhaps this curiosity is born out a society that devours salacious celebrity gossip and online rumours, but often there seems to be a darker side to it. Underlying the question is a sense of placing blame. Who is at fault? How did they allow themselves to be infected?

But do we really have a right to know someone’s transmission story?

Although certain groups are at greater risk of HIV, sometimes people just get it and it’s hard to pin it down to something they did or didn’t do. Many people have the virus and don’t know their status and with a late diagnosis it becomes increasing difficult to establish how it was transmitted. Many people living with HIV don’t know how they contracted it, and have to live with this uncertainty.

If a gay man contracts HIV is it easier for us to condemn his sexuality and “irresponsibility” rather than try to understand and relate to his experiences? Perhaps it is easier for us to cope with the possibility that any one of us could catch HIV, by thinking that it only happens to “bad” people.

Petretti mentions the media coverage of Charlie Sheen’s disclosure of his HIV status, which falls a bit too close to the BrassEye’s satirical sketch on “Good Aids/Bad Aids”. In the mock-documentary Chris Morris admonishes a gay man for having “bad AIDS”, the kind that’s your fault for getting.

NB – This is a very dark comedy and could potentially be offensive or triggering. 

 

Sheen’s disclosure could be a turning point in attitudes towards HIV – an image of a public figure living well with the virus. For many their image of someone with HIV was born out of 80s campaigns and they view HIV very much as a death-sentence. Many people don’t know that with good treatment adherence, viral load can be undetectable (meaning that you can’t pass the virus on, even if you have unprotected sex) and life expectancy is only a little less than that of the general population. Media has instead focused on his lifestyle, making assumptions about how he contracted the disease. With good treatment, many people’s immune system is supported so they don’t go to develop the infections associated with AIDS. In many ways, people can live ordinary lives, aside from regular medication and review appointments.

Charlie Sheen, the most recent celebrity to speak openly about his HIV positive status

This early newsreel from 1982 is particularly moving, released before HIV was really known about. It describes a form of “cancer” that seems to be affecting gay men. This is before HIV-stigma set in and it was seen as an illness rather than a judgement on someone’s life choices.  As our understanding of the virus has increased, so too have stigmatising attitudes that criticise and exclude.

We have no right to know how people contract HIV, that is their own story to share as they see fit. Condemnation and pity are both unhelpful responses. Attitudes towards HIV limit people from getting tested and disclosing their status, which increases the risk of transmission. Although HIV is often transmitted through sexual contact, in many ways it is comparable to other infectious diseases. It’s a long-term condition and if treated appropriately, it should enable the person to live a “normal” life and not endanger any other person. There is no “good” or “bad” AIDS, no more or less deserving. When we can detach ourselves from our seedy fascination with knowing the hows and the whys, we can allow ourselves to take a step back from our ingrained prejudices. Then we can really see the person.

Working 9-5: if only! Towards 24/7 healthcare

 http://youtu.be/UbxUSsFXYo4

If you work in healthcare you can’t have missed the recent outrage around government intentions to move the NHS to a ‘7 day service’. Thousands of people have signed a petition calling for a vote of no confidence in health secretary Jeremy Hunt. Mr Hunt hasn’t endeared himself to me, moly sorting from the point where he tried to shut Lewisham Hospital, a recently renovated site that serves a huge population of South Londoners and was noticeably not failing. Following public outrage and months of protest around the legality (not to mention ethics of making hundreds of sick people travel an hour to another busy A&E department when there’s a decent one nearby), the plans were reversed and Lewisham H still stands.

A 7 day health service is a good idea. People don’t just get sick on working hours and we need to accommodate them, not the other way around. But it’s also not a revolutionary idea. I don’t know if you’ve been to a hospital on a weekend. I have and I can assure you it’s still open. Doctors and nurses work long hospital shifts around the clock every day of the year. It is a fallacy to suggest that they don’t or won’t work weekends – they rarely have a choice. Walk in centres are open weekends, and many GPSs offer a Saturday clinic. Mental health crisis teams cover weekends, keeping people in great distress safe and out of hospital. But Friday night is still not a great time to get ill. Whilst NHS staff do work weekends, it’s usually not the full working force that you’d get on a weekday. Additionally, doctors don’t work in isolation. There work depends on other staff, many of whom do not work weekends. Discharges may face a length delay whilst waiting for assessment from a social worker, occupational therapist or physiotherapist. Scans and tests need to be carried out an analysed. If transferring to another team then liaison is needed, and administrative staff for all the records and associated paperwork. A 7 day service is needed from all staff to keep the operation working.

On politics: idealism and inaction

A little prose and musings…will probably add to this in time

As a child I was very idealistic. It sound pretentious but I generally had a sense of a “calling”. I imagine myself holding hands with activists in the desert (where wars happen, obviously) to stand in the way of battling troops, or feeding water to a poor malnourished child in the slums. Princess Diana was my role model and I felt sure I was going to go out and do Good Things. Growing up Jewish I think you assimilate your own sense of atrocity. We were taught stories of slavery and learnt the turbulent history of the state of Israel. Everyone knew someone who had been in the death camps.  We learnt and practiced “Tzedakah” (charity) and were taught that the greatest thing we could do for another was to help them to reach independence and self-sufficiency.

Intention achieved: frightening children

My first awareness of current politics as a child in the 90s. I remember the anticipation and excitement around “New Labour”. There was a feeling of change. My mother told me that the Tories supported people who had money, and this was a party who represented people like us.  I remember seeing the crowds on the news cheering after the 1997 Labour victory.

But it wasn’t entirely the promise we’d hoped for. I remember watching the news show the troops going into Afghanistan in 2001 and I actually cried. I thought this was the stuff of history books, not something that actually involved my modern country. An idealistic child grew into an idealistic teenager. My simplistic views were left-leaning: everyone should get along and be treated equally, war is bad and we should look after the planet. I felt strongly about the environment and became a vegetarian (I missed chicken burgers, but felt it was the Right Thing). At school I joined Amnesty and spent lunch breaks hearing stories of torture that left me feeling awful inside. I became drawn to mental health and set my sights on becoming a psychologist, and became involved in politics through the school.

Vince Cable, effective politician, once came round and had a chat with my mum, general all-round nice guy

Our local MP was the Liberal Democrat Vince Cable and remember him as a very visible member of the community. He visited my school and came round door-knocking and chatted with my mother. He was very well loved locally and gave off a sense of really caring about the local people.  The issues I felt strongly about (increasing access and reducing stigma in mental health, supporting the NHS, sex and relationships education, reducing involvement in foreign conflict, LGBT rights and gender equality, and evidence-based drugs policy) felt more closely aligned with Lib Dem politics than any other party. At university I became a party member and I was later involved in some local campaigning.

Then came the 2010 election. The party I voted for went into power! I was thrilled, my vote was actually represented. Then things began to sour. Prior to the election I hadn’t been aware of how unrealistic the Lib Dem tuition fee promise had been, and the backlash from the people was immense. People protested and were largely ignored. When it came to the Alternative Vote referendum the public seemed to vote to punish, destroying our highly anticipated opportunity to have a fairer voting system. Then the cuts began. At this point I had begun working in the NHS. I had no experience of working in healthcare pre-austerity, but older staff had plenty of stories of how it used to be. Over 6 years of work in mental and physical health, across the NHS and charity sector I never worked in a team that wasn’t being “restructured”. We were fined for not reaching unrealistic targets that did not represent the work we did (as though with less money we would be more productive). Our criteria for accepting referrals grew increasingly stringent, as we turned away people whose suffering  didn’t quite meet threshold. I let my Lib Dem membership lapse and kept my head down when people discussed Nick Clegg and his treacherous party.