NYAA logo screenshotA fairly detailed history of NYAA is given in this section. Whilst we have tried to be as accurate as possible, we recognise that we are relying on people’s memories, and so if there are any errors or omissions, we apologise, and ask that you contact us so that we can correct them!

 

Topics on this page include the following; you can jump to them by clicking on the headings below:


Introduction and Background

This article will briefly try to describe the story of NYAA. However, this story is inevitably intertwined with the overall story of HIV/AIDS in the UK and in the developed world; and just as there have been tremendous changes in this story of HIV/AIDS in the UK, so too have there been changes in what NYAA does. The services provided by NYAA have and always will reflect the needs of the HIV community in North Yorkshire – needs that have changed enormously over the years, as we shall see.

thebandplayedonThere are two excellent books that tell the early story of the HIV/AIDS epidemic in some detail, though both end in the early 90s and so by no means give an up-to-date picture of the situation as it is today . One is “And The Band Played On”, by Randy Shilts, which is a thorough and riveting account of the early days of the AIDS epidemic, focussing on the US.

theendofinnocenceThe second is, in a way, the UK-based equivalent: “The End of Innocence”, by Simon Garfield, who looks at Britain in the time of AIDS. These two books chronicle the devastating story of an illness that claimed many thousands of lives, mostly young men, who died in (initially) mysterious circumstances. The books detail the remarkable scientific detective work that was done to discover the cause of this terrible illness, and then the challenge of trying to find ways to prevent and treat the illness. It is very clear now that the cause of this illness called AIDS is the Human Immunodeficiency Virus – HIV – though it was many years before this was shown to be the case. The books detail the suffering and incredible bravery of the early AIDS victims, and how they tried to advance the treatment of AIDS. The books also describe the impact of AIDS on politicians and the press and the public, showing the fear and dread that was associated in the early days of the epidemic, and highlighting the courage of many who sought to overcome these (mostly unfounded) fears.

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The Early Days

lifemag1980sIn the early 1980s, in California and New York, reports started to appear of a mysterious illness that was afflicting primarily gay men, and then also, injecting drug users (IDUs). Initially, this was referred to as GRID (gay-related immune deficiency), but then reports came in of cases in the heterosexual population, and also in haemophiliacs, and so the term GRID was no longer appropriate. The term AIDS (Acquired Immune Deficiency Syndrome) was suggested in July 1982, and became widely adopted, along with its equivalent in French and Spanish (SIDA). By the end of 1982, it was clear that a wide group of people in the US were affected, and cases were beginning to be reported in Europe as well. Although there was evidence of blood-born transmission (initially in haemophiliacs), it was not clear what other routes of transmission there might be, and so there was a lot of (what we now know to be false) concern about how the disease might be acquired from others, leading to a lot of stigma for AIDS suffers. By the end of 1983, over 3000 AIDS cases had been reported in the US; of these, nearly half had died. The number of cases in Europe was much smaller, but a new group of patients was now being seen – primarily in African patients. This led to doctors and scientists looking for more information about the disease from Africa.

aidsresearch1980protestDuring 1984 and into 1985, there was much scientific discussion about the cause of AIDS, and finally it was conclusively established independently in two laboratories that the cause was a virus named either LAV or HTLV-III (these were two names for the same virus, it turned out). In early 1985, a test for this virus became available. It was also becoming clear that there was a serious problem in Africa in the heterosexual community, with the disease referred to there locally as “slim disease”. By mid 1985, there was a wave of fear and prejudice in the US and Europe, fanned by the press. By the end of 1985, there were over 15,000 AIDS cases in the US, and 275 in the UK.

In 1986, the virus causing AIDS was given a new name – Human Immunodeficiency Virus (HIV). Work was also ongoing with regard to treatment, and a new drug called AZT was being tested. It was also becoming clear that AIDS (though not identified as such at the time) was an increasing problem in Africa, having been around (but unrecognised) since the 1970s, and it was spreading rapidly amongst the heterosexual population with devastating effects.

worldsummit1988In 1988, a World Summit was held in London, which emphasised education, and the need to protect human rights and dignity. The first World AIDS Day was declared on December 1st, 1988. As well as AZT, a new drug, ddI, was introduced. Both drugs were difficult to tolerate, and only prolonged life for a relatively short period before becoming ineffective.

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York AIDS Action (YAA)

AIDS red ribbonIn 1991, the red ribbon was adopted as the symbol of AIDS awareness. Freddie Mercury declared he had AIDS, just a day before his death. Since the start of the epidemic until the end of 1994, just of 10,000 cases of AIDS had been reported, with over 7,000 deaths. By far the largest proportion of these were in the greater London area, primarily in the gay community. In the whole of Yorkshire, for this same period, there were only 250 reported cases, with 185 related deaths.

York (1)With this backdrop, York AIDS Action (as NYAA was initially known), was registered at Companies house in 1993, and with the Charities Commission in 1994. In the early 1990s, there had only been a small number of AIDS cases in North Yorkshire, and these had been handled by Social Services. However, a support group was set up around the early 90s covering Harrogate and York. At some point in 1993, it was decided that this should split, and the separate and distinct YAA was set up.

The driving force in the formation of YAA was, as is usual in the setting up of voluntary organisations and support groups, a small group of people who identified the need for specialist support, and so set about arranging it. The original group included not only people who worked in the health sector, the City of York Council and local government, but also included a number of people who had been recently diagnosed with HIV, but also people who were affected by HIV because someone they were close to or caring for was living with HIV. Together, they brought in support and expertise to set up an organisation, YAA, with a proper constitution and properly run, to provide support for the increasing number of people in the York area now being affected by AIDS. In the climate of the time, young gay men had often left their home in Yorkshire without disclosing their sexuality, to live a more open lifestyle in the big cities – London and Manchester in particular – where attitudes to being gay were more liberal. Sadly, some of them were now coming home, with AIDS, having the daunting task of telling their families not only that they were gay, but also, that they had AIDS, and were likely to be very ill and die soon. The founders of YAA recognised the need for these individuals and their families and friends to get the best information and support that they needed during this difficult time. Regrettably, there was at the time still a lot that was not known about AIDS and HIV, and there was a lot of misinformation and fear in the press, and in the mind of the general public.

In early 1995, volunteers started to join the organisation in some numbers – mostly people wanted to become involved in helping YAA for very personal reasons, having seen family or friends die of AIDS. Some of these founder members are still actively involved today, and NYAA really values their time and appreciates their experience and expertise. One of the main requirements in those days was for accurate information, which was provided by YAA for anyone who needed it or was affected by AIDS. A telephone help-line service for York was also set up (though it could only be manned on a part-time basis). But a lot of practical help and support was also given to those affected by AIDS. At this time, there was no effective treatment for AIDS, so the best that could be done was to provide palliative care and treatment for the many (often unpleasant) opportunistic infections that people with AIDS were subject to. Making people as comfortable as possible was vital and funding was sought to offer complemetary therapies, as was practical support like help with shopping and meals; but also, just having someone ‘be there” – to talk to, to hold a hand, to give a hug – was hugely important, given the fear and discrimination at that time.

Funding was also sought to help provide the rigorous training that volunteers undertook to help support them in their work. One of the key issues at the time was confidentiality. There was such fear about AIDS that often, suffers and their families did not want others to know about their AIDS status. Volunteers went to great lengths to ensure that confidentiality was respected at all times, going to almost extreme lengths. For example, in some cases, meals were being provided for those who were too ill to look after themselves, and volunteers recall being dropped off with their meals a few streets away, or round the corner, rather than right in front of the house, to minimise the risk that neighbours might see unusual activity and become suspicious. Volunteers were also instructed not to recognise or greet service users and their families on the street or in public.

Sadly, in most cases, the service users were only with YAA for a short period, becoming progressively more ill and dying. The so-called “buddying” system of support was a huge help during this period. Bereavement and funeral attendance was a regular occurrence in those days. Even at some of these funerals, there was a wish to void disclosure; the cause of death was often given as pneumonia or something else – anything rather than AIDS. And so the YAA carers, when attending a funeral, had to very discreet – no red ribbons, no mention of who they were. One of the early volunteers described this as being very different from funerals he had attended for friends who died of AIDS in London and Brighton, where they were much more open about things – not so in York, at that time.

NYAA quiltAnother important role for YAA was the raising of awareness of AIDS in the general public. One way that this was done was by holding marches and vigils on World AIDS days, and by involving the then local MP, Hugh Bayley. With the number of bereavements increasing, families wanted to do something to remember their loved ones. In San Francisco, where many thousands had already died from AIDS, the AIDS Memorial Quilt project was started in 1987, with a 3×6 foot panel for each victim, made by family and friends, to commemorate the life of their loved one. This had grown by now to a huge quilt of over 3000 panels. Taking inspiration from this, it was felt (after much discussion and soul-searching) that this was not yet quite right for York – it was still too difficult to be so open. So an alternative was found: a large free-standing quilt, with a white Yorkshire Rose for each of those who had died rather than a personalised panel.This was made and displayed in York Minster every World AIDS Day, along with notes of remembrance in the York Minster Book of Remembrance. This practice continues today.

By the mid-90s, over 1 million people worldwide had been estimated to have died from AIDS, with nearly 20 million being infected with HIV globally. More and more was being understood about AIDS and HIV more clearly – sexual transmission as well as blood-born transmission; also the transmission from mother-to-child at birth, and through breast-milk, was now also well-understood. It was clear that HIV was NOT transmitted through any normal social contact. More anti-retroviral drugs were being developed. In 1996, it was shown that the use of multiple anti-retroviral drugs, named combined anti-retroviral therapy (cART), or highly active retroviral therapy (HAART), was much more effective than using just one drug, but there were limitations – the drugs were difficult to take and difficult to tolerate.

This was a watershed moment. Thanks to cART, the number of AIDS deaths in the US and then the UK started to fall dramatically. Work on the development of new drugs with better side-effect profiles was initiated, as it became clear that long-term use of some of the current AIDS drugs gave rise to severe and unpleasant side-effects. In the UK, the number of newly diagnosed HIV infections probably acquired through heterosexual sex was higher than the number probably acquired through sex between men for the first time.

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North Yorkshire AIDS Action (NYAA)

NYAA logo screenshotRemarkably, as the use of cART became widespread in the UK, people with HIV were able to go on to this therapy, and NOT develop AIDS. The number of new cases of HIV continued to increase, but now, thankfully, more and more service users were surviving and living longer – much longer – thanks to cART. The focus of the support given by YAA changed – it was no longer about illness, “buddying”, support, death and bereavement: it was now all about helping people live longer and with more quality of life. Initially, many service users went to London or Edinburgh for medical treatment, but increasingly, local treatment in York became possible, and York is now an exceptionally good centre for HIV treatment and care. As the number of service users grew, their geographic spread out of York was also more apparent, and it was agreed that YAA should become NYAA (North Yorkshire AIDS Action) in 1997, to reflect the wider support being given in the county.

ARV drugsIn the early days of cART, the late 90s, the anti-retroviral drugs being used were still quite difficult. Large numbers of tablets had to be taken, some with food, some without, and at very prescribed times – for example, exactly every 4 or every 6 hours – if the drugs were to be effective. This in itself meant that service users needed some support to get used to these rigorous routines. On top of that, some of the drugs had quite unpleasant and severe side-effects that service users needed help with. Nausea, loss of appetite, flu-like symptoms, diarrhoea – these were common and severe, particularly when treatment was started for the first time (some of these effects got better with time). Advice and support on how to deal with these issues, how to eat to minimise nausea and diarrhoea, help with “chores” and shopping if laid low, were invaluable. Unfortunately, as people survived longer and stayed on these drugs for a long time, some other, long-lasting side-effects were also being seen. Lipodystrophy – changes in body-fat distribution – was a problem with some drugs, causing problems with self-image and confidence. Other drugs gave rise to peripheral neuropathy – pain in the toes and feet, ranging from mildly unpleasant to cripplingly severe – necessitating practical support. Pain relief was often complex and ineffective, making emotional support important, too.

Despite the huge improvement in treatment, many people were still very ill when coming to NYAA for the first time. In many cases, people were diagnosed “late” with HIV – that is, their HIV was undiagnosed until their immune system had been extremely weakened and they had become seriously ill with opportunistic infections – often with pneumocystis pneumonia (PCP). This is a major cause of illness and death among immuno-compromised people, and remains a leading AIDS-defining opportunistic infection in HIV-infected individuals. Links between the medical team at the hospitals in North Yorkshire and NYAA quickly developed, and in many cases, newly-diagnosed patients with HIV were often visited in hospital by NYAA. Helping people through this initial illness and getting them back to strength, usually resulting in a good recovery, became an increase part of NYAA’s support work. Key to this was helping service users to really understand the illness and its treatment, so that they were fully informed and able to make the best possible treatment choices with their clinical team.

Increasingly, the role of the NYAA volunteer was changing – from “buddying” and practical support to dealing with more technical issues about the illness and its treatment, and how then best to re-integrate into work. The focus on dealing with bereavement also changed, since now fewer and fewer peole with HIV were developing AIDS. Nonetheless dealing with complex social and emotional issues remains a central part of NYAA’s role. Although things have improved since the early days of the epidemic, there is still a lot of misinformation, ignorance, fear and stigma associated with HIV, and so issues about disclosure – who to tell, and when – are still troublesome for some people.

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NYAA Today – and Tomorrow

GEDC0551 (2)In the past decade, many new anti-retroviral drugs have been developed, with much better side-effect profiles. HIV testing is also more easily accessible. In the UK, the treatment of HIV is now so good that HIV is seen as a long-term, treatable chronic condition. Although there is still no cure, people with HIV who are diagnosed early, and who take the appropriate medication regularly, can expect to live full lives with good quality of life, and with near-normal life expectancy – a huge turnaround from the early days of the epidemic when an HIV diagnosis was indeed a virtual “death sentence”. In the UK, mother-to-child transmission is extremely low; infections in drug users remains low thanks to needle-exchange programmes; and the number of AIDS-related deaths is now extremely low.

Today, the issues facing NYAA are changing again. Over the past decade, there have been more cases of HIV in the heterosexual population, so the emphasis has had to change from one that was initially centred mainly on gay men. Increasing numbers of immigrants are also being seen now, with complex issues around culture, immigration status and housing. As treatment has improved, so fewer and fewer people with HIV are eligible for benefits. Also, long-term survivors who for many years have been living on benefits are finding that they are being reclassified as fit for work. The process of returning to work may be daunting and complex, and may requiring complex informed support. As a result, NYAA now rarely uses volunteers; the issues to be dealt with tend to be complex, and service users no longer require the “hands on” support given in the early years.Instead, these complex socio-economic issues are dealt with a professional team who have personal or professional experience of HIV, supported by social work students on placement from York University.

gallTechnology has also improved in the area of HIV testing. In the past, the HIV test involved waiting many days – up to a week – for a result; now, a rapid test involving just a pinprick on your finger can give a result in 15 minutes, reducing the stress of an agonisingly long wait. These rapid tests are offered at NYAA.

The story of HIV and AIDS in the UK has been remarkable. A “mystery illness” in the early 80s that was almost always fatal, killing mostly young men in the prime of their life, has been studied, its cause identified, and successful testing methods and therapy have been developed and rolled out, in a time-scale that for medicine and science is breathtakingly quick. At each stage of this journey, NYAA has been there to support the people of North Yorkshire in the most appropriate way. Initially, and heartbreakingly, this was more about palliative care and bereavement support, until the breakthrough in 1996 of cART. This completely changed the face of HIV in the UK. No longer is a diagnosis of HIV one to be dreaded: although not great news, since there is still no cure, the condition today can be very successfully managed with drugs that are easy to take and well-tolerated, giving people with HIV full and long lives. Despite this wonderful medical breakthrough, though, there are still complex social and emotional issues to deal with, with now different and complex groups of service users with different needs, from gay men still fearful of isolation and stigma, to families with children, to immigrants with complex cultural and immigration status and housing issues, to people returning to work after a long period of absence, and more.

It is hard to predict the future – what is sure, though, is that as the HIV landscape changes, and the needs of people living with HIV change, so too the response from NYAA will change to ever reflect those changing needs.

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