The Generation Game by Positively UK

UK 25 Years of Positively UK

The Generation Game

In this issue... 3

the world an HIV diagnosis still means despair, desolation and certain death, and I don’t know about you, but as one of the fortunate ones I still find myself weeping with rage about this.

A Grand Love

4-5 25 Years of Positively UK

6-7 The Interview 8-9

Use it or Loose it: HIV and Ageing

Changing Landscapes

Support Positively UK

12-13 HIV and Prison 14-17 Growing (Old) Pains 18-19 Positively UK at 25 –

’s Guest Editor Letter Maureen

I’m Still Here, Yeah!

Life Expectancy

T he G eneration G ame – 2 5 Y ears o f P ositively U K

timeline

I Count My Blessings

Positively UK Spring 2012

24 -25 Ageing with HIV 26

Life is a List

Virtual Grandparenting

28-29 HIV and Ageing 30

What’s Happening at Positively UK

New Diagnosis as a Grandparent

32-33 Cate: Any Regrets? 34-35 What’s Happening Around the UK?

A warm welcome to our 25th Anniversary issue which is themed around ageing with HIV and the many changes, both in attitude and treatment options, which have taken place during our lifetimes. You will find it packed with uplifting stories of gutsy personal journeys along with some interesting and informative articles. Striking a healthy chord at the start of her article, Dr Waters tells us that ... “thanks to progressive improvements in drug therapy HIV has been transformed from a terminal disease to a chronic long-term condition”. Danny ends his personal story with ‘30 years on and we now have a future’. 30 years! And what a journey we have taken, one that many of us thought we would not live long enough to experience, and so very many who didn’t. A few stories speak of the utter despair and desolation of being given an HIV diagnosis, a stark reminder of a time when there was no medication, and that what lay ahead was certain death. While we have come a long way from that place, we should remember that today, in 2012, for many people around

Among one of the first people to be diagnosed with HIV in the UK, Danny has been at the forefront of campaigning for HIV services, notably London Lighthouse, and he rings a warning bell about impending cuts to services and benefits. Cuts mean changes everywhere in the care system and as pointed out by Dr. Waters, there are plans afoot to move HIV along with other conditions from specialist care to GP/community care. We should all be worried about what these changes and cuts mean for our future health and health care services, I would urge you all to search out local and national campaigning groups where there will be petitions you can sign. Being blessed with longer life we also face the same difficulties that all ageing people experience, but perhaps with additional problems and complications associated with living with HIV. The opinions of professionals differ as to the ways that HIV affects ageing and some of these and other aspects of ageing are considered in articles along with advice on keeping healthy, and contacts where you can find further information. Our ability to have a positive attitude and to laugh at ourselves is also essential to our well-being. This is reflected in several of the stories such as Lesley’s Life is a List, and being an artistic list maker myself, this had me belly laughing. The wonder of technology in bridging the miles and keeping families in touch is conveyed by Memory as she speaks poignantly about her Muzukuru (granddaughter) who reaches across many miles with her voice and image to tell her “Gogo I love you”. Yes, we have indeed come a long way, and may we continue our journeys with the love that we need. Maureen xx

A Grand Love

When I was diagnosed I was told that my odds were good as combination therapy was now available. However, it didn’t take much research to know that there could be many complications, and that nothing was certain. I was 50 years old and had been undiagnosed for ten years and become increasingly ill during that time. At the HIV clinic, two weeks after my diagnosis, I was relieved to see that the waiting room was empty apart from one man. I sat down across from him, smiled and said hello, and as I looked at him I knew that he was dying. He looked at me with huge sad eyes, smiled and said “I’m ready to go now, I have peace in my heart”. Time seemed to stand still. I smiled and said “I’m glad you have peace in your heart”. It was overwhelming, and I don’t remember much of that visit, except my wretched sobbing, and the young man who didn’t survive. During the coming years I would meet more people who didn’t survive, and mercifully, many who have.

All my family struggled to cope with my diagnosis, there were many dark times in the years ahead, but we are good at communicating and supporting each other, and real big on hugging. Without their support I don’t think that I would be here today, and for sure, having Dillan in my life has given me more reason to be here. The sound of his laughter is manna for my soul, it is rich and enchanting, like soaring musical notes, and I can’t help but find myself laughing with him. I have a wee recording machine which I carry around with me, using it to learn choir and singing group songs. Yes, you know what’s coming, I do have a recording of his laughter, and although I may show his photograph to friends and acquaintances I have resisted asking them to listen to his laughter. Perhaps I should! It’s a real tonic. However Grandmothers garden is not always rosy and our family have our share of painful learning and growing into lifes ever changing roles and experiences, such is life.

A friend and I were talking about being Grandparents and laughing at the astuteness of a quote by Christine Hankinson; ‘I can’t decide whether to be a good example or a horrible warning’. Both, we agreed, admitting to the odd mistake or three in our lives, LOL, and not done yet! We are of the mind that young people need Grandparents and Elders around them to be guides and role models. We also know that the young can be role models for their Elders, reminding us of the optimism of youth and inspiring us with the joy and passion that comes with it. I hope that I’m not done for a long time to come, but if my time comes sooner than later, having lived with this virus for 21 years I can’t complain, it’s way more than I expected. So here’s to the next 21, well you never know! Love and Om, Maureen, xx

T he G eneration G ame – 2 5 Y ears o f P ositively U K

When I was diagnosed as HIV+ my greatest fear was for my children: would I see my daughter grow into a young woman? my sons become men? I am so grateful that I have lived to see this and become an Elder and a Grandmother. My Grandson, Dillan was born prematurely at a meager one and a half pounds and was to spend two months fighting for his life in an incubator. Another precious human being had come into my life, and I wondered if either of us would survive. He has recently celebrated his ninth Birthday, his spirit is strong and he has thrived beautifully. I believe one of the most important labors a human being can undertake is the nurturing and raising of our young, and it is such a wonderful gift that I get to be part of this all over again. I have been fortunate to share in the raising of Dillan and this has been so positive for all of the family.

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25 Years of Positively UK

T he G eneration G ame – 2 5 Y ears o f P ositively U K

In 1987 Sheila and Jayne, two HIV positive women, placed small, handwritten ads in clinics reading ‘We are trying to set up a support group for HIV positive women – call this number’. This was the beginning of Positively Women (PW) and over the last quarter of a century we have branched out, expanded, evolved, extended our reach to men and young people and changed our name to Positively UK. Throughout this time we have continually provided peer support as well as opportunities for developing skills and confidence for people living with HIV all across the UK.

25 years ago there was an overbearing need for this kind of support. In the mid 80’s a now infamous government health campaign had used the slogan ‘Don’t Die of Ignorance – There is a deadly disease that is a threat to us all…’ Its language and images capitalised on the fear of HIV and AIDS, adding to the stigma and isolation that HIV positive people experienced. Kate Thomson, the first woman to respond to PW’s ad, was given the impression from her GP that if she needed support she would have to find it herself. But at that time Terrence Higgins Trust, London Lighthouse and Body Positive were tiny organisations in their infancy, and aimed predominantly at men. Kate remembers she couldn’t find anything – ‘I searched high and low for information on HIV and for someone in the same boat to talk to but try as I may (and believe me, did I try!) I was not able to locate one single woman living with HIV.’ When Kate attended the first meeting she expected to find the image of HIV and AIDS that the media portrayed – ‘terribly

ill, emaciated looking individuals who were not long for this world’ – but instead she found Sheila and Jayne, ‘two bubbly blonde women, munching on a bag of pick and mix’. Her first experience of PW was a turning point – ‘that feeling of having someone to talk to, someone who could actually relate to what I was going through. Any positive woman who remembers meeting another for the first time will know what I mean.’ The idea of providing a place where HIV positive people can receive support from their peers, those who can personally relate to their situation, is at the heart of the organisation. Angelina, herself HIV positive and a former project manager at the organisation, explains: ‘Without women like Sheila and Jayne, hundreds of women who have passed through PW’s doors would not have received the much needed support that has enabled them to move on with their lives after their HIV diagnosis.’ From 1989 onwards, the group expanded and became increasingly involved in training and advocacy. As Kate describes, ‘we were asked to do talks for midwifes, nurses, doctors, social workers, local authority workers, or school kids. Most of the people who listened to our presentations would be bowled over because for the first time they would be able to connect AIDS to real people.’

When you see somebody positive getting on with their lives you think: “So can I!” During the 1990’s, before the advent of treatments, Positively Women continued providing a safe space for women to meet. Their support often focused on preparing for the worst eventuality. However, the introduction of AVR’s changed all of this. From 2000, Positively Women took on a new impetus, focusing on treatment management, family life, relationships and employment. In June 2010, just over 20 years after its inception, Positively Women became Positively UK, providing support for both women and men as well as having more specific groups for African women, gay men and straight men. These changes have proved successful, as Frazer, a peer mentor discusses, ‘I was a bit apprehensive at first about going into an organisation that had been run by women for women but the staff and other volunteers have been great in providing support; we have mentor meetings where we talk about what has been happening and we offer advice and suggestions to each other if there is an issue that needs to be addressed. One of my mentees asked me if mentoring made me feel good, and I said yes!’

Positively UK Spring 2012

HIV). These help people become advocates and activists, and participate in influencing the decisions, services and policy that affect people living with HIV. ‘All of this is very important,’ says Silvia, ‘because it helps dispel myths and ignorance around HIV that also fuel stigma. When people living with HIV are visible: stigma will end.’

Silvia Petretti, Community Developments Manager at Positively UK talks about the organisations relevance to HIV today. ‘I think Positively UK keeps being a lifeline for people who live in tremendous isolation because they are still too fearful to disclose their status to anybody. Also, the choices relating to treatment, sex or starting a family, in many ways have become much more complex than they used to be, with many options to choose from. I think peer-support is crucial for people to access information in a form that is easily understood, as well as develop the confidence and self-esteem to make the right choices. When you see somebody positive getting on with their lives you think: “So can I!”’ A lot of the work that Positively UK does today relates to the social stigma and ignorance associated with HIV. This may have improved since the mid-eighties but, as Silvia explains, it still exists: ‘There is a disconnection between the facts – the bio-medical facts around HIV – and the general attitudes. For example, whenever I tell somebody who doesn’t work in HIV that a positive woman can have an HIV negative baby 99% of the time, people are shocked.’ In order to fight against ignorance, prejudice and isolation, Positively UK provides support and encouragement for people who want to talk about their HIV. As Silvia explains, ‘We do a lot of work to support people through disclosure. Stigma grows on silence and secrecy. I always believe that every time somebody positive discloses successfully to somebody else, even if it is a family member, there is a little less stigma in the world.’ Positively UK also works to help people communicate on a wider, more political level, through projects like Taking Part and the PozFem-UK network (a national network of women living with

Twenty-five years after its formation as Positively Women, Positively UK aims to continually recognise what people with HIV need and expand and evolve in accordance with these needs. Our mission is to fight for the recognition and understanding of HIV positive people, advance the rights of people living with HIV and to create an environment that facilitates the greater involvement of people living with HIV in policy and strategy making. Our vision is a society where HIV is free from stigma and discrimination – one day we will achieve it.

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T he G eneration G ame – 2 5 Y ears o f P ositively U K

More recently the organisation also developed services for young people, including a peer support network run by and for young people living with HIV. With the aim of reaching those who are most isolated, and, because many people may find it intimidating to visit an organisation for support, out-reach peer support is available in eight London Hospitals. There is also a continually developing volunteer programme which aims to prepare Positive people to be peer mentors.

This year the organisation appointed a new Chief Executive, Allan Anderson, ‘There’s a huge challenge ahead for the voluntary sector. There are cuts in the sector, reduced services, and we’re seeing the numbers accessing services increase. In the last year over 1,400 people accessed Positively UK for some aspect of support, be it information, guidance or groups. We’ve been looking at how we can expand our peer support, such as through teleconferencing and Skype so we can reach people in prison. Our volunteer peer mentoring programme is proving very successful, and we’re expanding this through recruiting more volunteers, providing accredited training, a package of on-going professional development and establishing volunteer led groups. The opportunity to meet and speak to another person living with HIV is still hugely powerful. It is often the first time they’ve spoken to someone about HIV who is not a medical professional, and who understands what it means to be living with the condition. We’ve found that people feel limited in what they can tell family and friends, for fear of burdening them. Meeting in peer support groups allows people a safe space to talk about HIV, learn how others are managing medications, how they’ve approached disclosure, how they’ve dealt with prejudice, and build supportive relationships that will last a lifetime’.

The Interview Maureen – Peer Youth Case Worker at Positively UK

Please Maureen, introduce yourself. My name is Maureen, I am 22 years old and I’ve been HIV positive all my life. I started working at Positively UK 6 months ago. I run the youth project, so I go to different clinics around London and speak to young people living with HIV. I offer them peer support one to one or on the telephone and I am about to start a support group.

T he G eneration G ame – 2 5 Y ears o f P ositively U K

What has inspired you?

As a young person I didn’t want to be around anyone, I didn’t want anyone to know my business and I didn’t realise that there were people out there like myself. But then I joined an organization called CHIVA (Children with HIV Association) and that’s where I met my long term friends. It made me realise that there is a major support network out there. That is what got me involved with Positively UK, I thought to myself: if I have this anxiety, what about other young people out there who only speak to their consultant but not with their friends or families? This made me realise that I can help someone, the same as someone helped me, and that person can go on to help someone else and it is like a domino effect and everybody is helping each other and (laugh) we all live in this fantasy world! What do you consider your greatest achievement? It definitely has to be this. This is my career path. This is something I can see myself doing for a long, long time and making a major impact… This is definitely my greatest achievement. How would you say HIV has affected your life? It has obviously paved the way for my career, it has allowed me to step into

Positively UK Spring 2012

Positively UK and be an advocate for other young people. It has had a lot of downtime in my life as well, like when I have become really angry at the world and myself and thought: ‘Why me?! Why me?!” But at the same time it has allowed me not only to be empathetic with other people living with HIV but people living with other illnesses, it has risen my awareness of safer sex and lots of things that you wouldn’t really realise if you weren’t HIV positive…. It has a lots of plus sides to it… Do you think young people with HIV are more mature? I think they are forced to grow up a little bit faster than their peers because they have the responsibility of taking their treatment at the same time. They can still go to parties and whatever, but they still have to keep to their routine and eat certain things with their medication. But in terms of how positive young people should live their lives, I don’t think there should be any difference. What is it like for a young person to take treatment? At first it can be daunting. When you’re young it’s when you come off the medications that you find out you are HIV positive. You think, ‘I don’t want to take this, I do not want to depend on a pill to keep me going.’ I had a moment like that when I was quite young. I stopped taking medication for a while, but then I realised what CD4 count and Viral Load really do and what medication does. I realised that treatment is there to help me and enable me to do the things that other young people were doing at the time. Does this still happen to young people? Yes, a lot, really a lot.

And how do you support them? It is when they realised what HIV really is and how important it is to keep it stable when they get back on to treatment and appreciate it. I tell them about my own experiences when I was younger. What is your message to other young people living with HIV? What I tell all my young people is: live your life. Because a lot of them have anxieties and fears: How am I going to carry on with my life? How am I going to find a partner? How am I going to college? And I can be an example to them: Look, you can still work and have a relationship and friends and go out and do normal things that young people do. My message to them is just to feel free in their skin and not take on so much of the negative side of HIV. If you could change one thing what would it be? Just the way people see it. The stigma that surrounds it is really sad. It’s really, really sad to see that people still see it as such a dirty and negative thing. Have you ever experienced it personally? I was with a partner and I disclosed my status to him… and he just went off the walls. I decided: wow! This is how people take it! And it was terrible! There were death threats and everything. That kind of made me think: I am not going to tell anyone ever again. But you have to build up that courage, because not everyone is going to be like that. It also toughens your skin because it is not going to be rosy: not everybody is going to accept it, or understand it. But it is down to you to explain it to them and to show them that it is not as bad as they think.

Silvia: I think it is important when you do it, when you disclose, that you are doing it from a position of power. You do it because you are strong and because you know how things are. Their reactions may be based on ignorance but you are being honest, you are being courageous, you are practicing safer sex … you are on the ‘right’ side so there is no reason why you should feel ashamed. I used to feel really bad about disclosure… but now…. Maureen: Now I can shout it from a roof top… I am HIV positive and that’s that. But in the first stages of telling people it is so nerve wracking…. so scary… and to do it you have to be really strong. What do you think would help challenge stigma?

T he G eneration G ame – 2 5 Y ears o f P ositively U K

If it is spoken about more. If HIV is taught in schools, if there were programs on TV, if it’s just out there, if it’s global, if it is not hidden, if it is not a disgusting subject, if people just normalise it as they normalise things like cancer or diabetes. Obviously we have World AIDS Day, but we need to raise more awareness and have an impact on the world. As a young HIV positive person what are your hopes for the future? I just want something to give way and allow HIV people to have a voice and to show them that they are no different from their peers. Just because they have this virus doesn’t mean they have to change their lifestyle or change the friends they hang around with. I just want them to be more comfortable in their skin and understand that this is something that can happen to anyone. And, do you have any plans for the future? For your personal life? Yes, I am due to be married in three years time, depends on him, you know. I definitely want to have some children, quite a lot actually. And I want to carry on with my career.

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Use it or Loose it: HIV and Ageing One of the certainties in life is that time moves in one direction and day-by-day, if we are lucky, we will get older. Around 25% of HIV positive people in the UK are now aged over 45 and 10% are over 55. If you are HIV positive, everyday is an achievement, and as these days turn into years, many of us are seeing life that was difficult to dream of a few years ago. Now, it is possible to make long-term plans – almost as if HIV is not an issue. But this planning needs to include how to look after your long-term health.

T he G eneration G ame – 2 5 Y ears o f P ositively U K

With the wisdom, understanding and experience that should allow us to enjoy every period in our lives, comes additional health worries. Some of these are undoubtedly more complicated because of HIV.

Ageing itself reduces your immune system, but HIV positive people also have higher rates of age-related illnesses including reduced bone density, higher rates of heart, liver or kidney disease and some cancers, and higher rates of dementia and other neurological problems. Some of this will need more careful monitoring and advice to the general population about reducing the risk factors that you can change, becomes even more important if you are HIV positive. These include: * keeping physically active, * eating well, * stopping smoking, * only using alcohol or recreational drugs in moderation, * sleeping well - letting your body rest when it needs to, * developing a good network of supportive friends – and finding time for fun,

Positively UK Spring 2012

etc. – or just being more active generally by walking more and sitting less!

Important monitoring

Walking is one of the best forms of exercise. Mile for mile it burns about the same amount of calories as running. It can calm you down, give you time to think and to enjoy the world around you, as well as keeping you healthy. Walking is a cardiovascular exercise, which means it is good for your heart and blood circulation. Try leaving home or work earlier than you need to and get off the bus or tube a stop earlier and walking the rest of the way. Or if you drive, park a little further away than you need to, and walk the rest of the way.

setting achievable short-term and long-term goals, * managing your treatment. Be good with adherence, keep your routine appointments, change or modify treatment if the side effects are causing problems. Make sure other monitoring is included.

* * * * *

Heart disease (use online Framingham calculators) Lipids and sugars: cholesterol, triglyceride and blood sugar levels Liver and kidney function tests BMI – an indication of whether you are over- or under-weight for your height Bone mineral density – using a DEXA scan – many doctors think this should become a routine test, especially in people with other risks Neurological function – there is currently no agreed consensus on which test will pick up early symptoms of problems relating to brain disease, but this is an area that should change in the near future. Cervical and breast cancer – smear tests and breast scans are important if you are HIV positive – be sure that you access national screening programmes either at your clinic or through your GP.

Exercise ‘Use it or loose it’ certainly applies to fitness. The best way to delay creaky joints and brittle bones is to lead a more active life. The best way to keep your heart strong is to make sure it beats faster every day. This can include obvious types of exercise – fitness classes, swimming, using a gym, and other sports

As well as seeing things that you would otherwise have missed, you can get a sense of achievement from walking longer distances. Walking everyday will work your central muscles and keep your heart beating stronger. Aim to reach 10,000 steps a day (5 kilometres). Even if you build up to this slowly, this is the recommended guide. Or take more active exercise for 30-40 minutes at least three times a week. Weight-bearing exercise will strengthen your bones.

Diet Diet and exercise go together. If you are more active, you will be burning more calories and can eat more if you want to, or use the exercise to loose weight. But focusing on how your body feels after exercise will make you wonder about whether you have a healthy diet. In general, moving to a more healthy diet will help you in the long run. For example: * eat vegetables and fruit every day * eat more fish and/or chicken rather than red meat

* *

limit the amount of solid fats like butter and cheese. Olive oil and vegetable oils are better. cut back on fried food – grill, steam, boil, bake etc - are all better for your heart. foods that are less refined like whole wheat bread, pasta and brown rice are better for you than refined white bread, pasta or rice, because they release energy more slowly, and affect blood sugar levels more gently. high sugar foods, especially refined sugars, increase the risk of insulin resistance and diabetes. aiming for a BMI (Body Mass Index) that is between 18-25 is a good goal.

may mean we are at higher risk, or that they occur at an earlier age. Currently there are lots of questions about how HIV affects the brain and not so many answers – so this is a major research area. Several studies are suggesting that the time spent with a detectable viral load, may impact on long-term health because your immune system is permanently over-active, even at high CD4 counts. Social issues include dealing with prejudice and stigma – whether real, or self-imposed through fear of being open about this aspect of our lives. This can reduce your self-confidence and bring special problems to relationships and social life in general.

Smoking There is no easy way round this. You may not manage to stop smoking this year, or even next year, but cigarettes probably have the biggest impact on your life expectancy and long-term health. And these effects are worse if you are HIV positive. Your risk of lung complications including cancers and cardiovascular problems including heart attack and stroke are much higher if you smoke. They increase with age and increase from being HIV positive. There are numerous ways to stop smoking, and you may need to try several until you find one that works. However, when the time is right for you, doing this with other people in one of the free NHS programmes is a good place to start. After quitting, your body is good at repairing the damage that smoking has caused, and you quickly get the benefits in terms of reduced health risks.

Mental health This is a tough one because it covers all sorts of difficult areas including medical, social and psychological issues, which are all related. Medical issues include potentially higher risk of brain-related illnesses including Alzheimer’s disease and dementia. This

yet you need this interaction to keep in touch with the world. Dealing with HIV can be difficult: dealing with it on your own is usually more so. This is one of the reasons why it is so important to keep the network of support organisations, which can help break this isolation.

HIV treatment and care With everything else going on, it can be easy to forget some of the most important basics for long-term health. HIV drugs can only work if you continue to take them, and continue taking them on time. Adherence is just as important after five or ten years as it is when you first start. This commitment to treatment can be difficult to maintain, especially if you still get side effects. Ask your doctor about alternatives – new HIV drugs are developed each year and the latest ones may be better that the ones you started a few years ago. Make sure you keep your routine blood tests checked and that you get the results promptly.

Psychological issues can be closely related to both. Without a good support network of friends, life can be more difficult. Isolation can also contribute to depression. If you feel unhappy or self-conscious about your body and appearance – perhaps because of changes caused by the meds in terms of fat loss or accumulation, this can limit your social interactions with people. Keeping your brain active is as important as keeping your body active. Find new interests that challenge and excite you. Your mental health is also related to how you feel about yourself and your life, and HIV positive people, for many complicated reasons, have higher rates of depression. As you get older, there is a risk that your social network gets smaller,

Diet and exercise can help with one of the commonest problems related to treatment including increased cholesterol and triglycerides. They can also reduce the risk of diabetes and heart disease. This summary of issues associated with aging is easy to write but may be harder to put in practice. Start with small goals though and you could be surprised at how this can make you feel more in control of you life and that this in itself can help you feel happier. So far we have been lucky to benefit from treatment. As treatment now becomes more refined, we need it to carry us through into old age, and for that we are going to have to play a more active role in our own health. The i-Base website has detailed information on these and other aspects of HIV and treatment. Simon Collins, HIV i-Base www.i-Base.info

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T he G eneration G ame – 2 5 Y ears o f P ositively U K

Changing Landscapes

T he G eneration G ame – 2 5 Y ears o f P ositively U K

In October 1985 at the age of 24 I attended a routine appointment at a leading London hospital sexual health clinic. During my consultation the doctor suggested to my horror that along with the usual blood tests for syphilis and gonorrhoea I should also have as he termed it “the AIDS test” saying that as I was gay I was likely to have the disease. That was to be the extent of my pre-test counselling; I was advised to return in two weeks for the result.

I had only just begun to hear about this new virus and had never considered that I may be at risk let alone that I could have it. I spent the following two weeks in a state of high anxiety. The two weeks passed and I returned to the hospital with a friend to receive my results, my doctor sympathetically informed me that my results were positive and that in the absence of a cure I had 18 months to live. I must have been one of the first people in the UK to be diagnosed. I left the hospital in a state of shock and returned home to an awaiting group of friends who shared my anxiety. I was unable come to terms with it, I was unable to work; I remember feeling completely immobilised, helpless and terrified. A close friend told me she had heard of an organisation called Body Positive and that it was holding a social evening at a gay bar called The Market Tavern in London. I was extremely anxious but found myself in a room filled with other gay men who were also HIV positive, it was a turning point in my life. I met my first partner who was also living with HIV that night; he died of AIDS two years later. In May 1986 I left work on medical grounds. I felt unable to cope with the high stress levels and I wanted to commit my time to supporting and working alongside people living with HIV. In 1986 I met with a small group of gay men convened by a guy called Christopher Spence to explore a vision

Positively UK Spring 2012

of an innovative new centre for people living with HIV in London; the centre was to become the London Lighthouse. When London Lighthouse opened it became the first centre of its kind in the UK. Over the next few years my own health deteriorated, I lost two partners, my two closest friends and a young child. In the gay and lesbian community everyone knew someone who had died or knew someone who was dying, open expressions of grief within the pubs and clubs were commonplace and funerals became a frequent occurrence. At every turn someone was involved with the care of someone with HIV or AIDS and many of us were involved on some level in the empowerment of someone who was dying of AIDS. I have now been on “Highly Active Antiretroviral Therapy” (HAART) for eight years and have found a combination of medication which has few side effects and has boosted my immune system and given me a blood count or (CD4) count of 750, an undetectable viral load and a new lease of life. Combination therapy is a lifeline to people living with HIV; the numbers of people dying from HIV has declined dramatically, many (though not all) people living with HIV are now expected to have an almost normal life expectancy. This raises new challenges; many people like me who are living long term with HIV are confronted with the impact of HIV and the ageing process, as well as the physical, emotional and psychological impact of living with and managing a highly stigmatised complex chronic health condition into the future. There is an increasing group of older people living with HIV who face more uncertainty in the future, many of us have been in long term unemployment, have no financial security, live in isolation, have limited support networks

and face a range of complex health issues as we age with HIV. As we remember 30 years of the AIDS epidemic and the many people who have died we see a move towards marginalising HIV and people living with HIV even though the majority of those infected worldwide are heterosexual, we are also experiencing an increase in negative and damaging stories portraying disabled people as scroungers in the media. Many support organisations are experiencing significant cuts in funding or the complete withdrawal of funding. With radical changes to the state benefits system and changes in the way people living with HIV are supported by the Department of Work and Pensions (DWP) anxiety levels are high and the future uncertain. In August 2011 I celebrated my 50th birthday and in October another anniversary, 26 years of living with HIV. A lot has happened over this time; I have learnt to remember and value many significant dates and the faces of many loved ones who have gone on ahead of me. As my own journey continues I remain determined in my commitment to people living with HIV. I will remain resilient as I continue to confront injustice and discrimination. Thirty years on we now have a future. Danny

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a month provides travel costs allowing someone isolated to access peer support in person a month provides an hour’s creche worker allowing a £10 dependent mother to attend a support group us to a run an hour’s group where people can access £20 allows peer support and meet others living with HIV You can do this at www.positivelyuk/donate Positively UK is a registered charity 1007685 w w w. p o s i t i v e l y u k . o r g

T he G eneration G ame – 2 5 Y ears o f P ositively U K

This year Positively UK supported over 1,400 people living with HIV. Next year, with cuts across the statutory sector, we expect numbers to rise. We make a difference by empowering people to come to terms with their condition, build confidence, and establish long-term friendships and support networks. “I am confident in the support I receive from Positively UK in terms of disclosure to my family, continued peer support and my skills around engaging in service providers have increased immensely.”

HIV and Prison Positively UK has been providing vital peer support in Holloway prison since the early 1990’s. This year, with the support of the Elton John AIDS foundation, we’ll be publishing a review of support for people with HIV in prisons in the UK. Over the coming year we will be printing numerous articles observing the process of how HIV is met and dealt with in UK prisons and how much or how little has changed thirty years on. In the first of four articles, we present the story of one service users’ experience when diagnosed 25 years ago in prison; before peer led support was available. It shows the ignorance, stigma and discrimination she encountered. What follows over the coming months will hopefully give food for thought, look at how attitudes and services have changed, and pose the question, is enough being done to support the health and social needs for people living with HIV in UK prisons?

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Sitting here today – It’s quite hard to cast my mind back 25 years ago, a quarter of a century. The first obvious thing that springs to mind is that day in January 1987 when I was told that I was HIV+ while being detained at ‘Her Majesties Pleasure’ in Holloway Prison for the third time having committed a drug related crime.

Connecting with that day now actually brings a tear to my eye – whilst at the time I shed no tears. My boyfriend had been diagnosed the Christmas of 1986, probably one of the worst Christmases I have ever had. I was a junkie then and whilst I was aware of HIV – you couldn’t really not be when the UK was flooded with TV ads of gravestone’s and statements like HIV=AIDS=DEATH – in my drug addled mind it was only happening to gay men and drug addicts in Scotland!!

Positively UK Spring 2012

I think the worst part of it all back then was the mass hysteria and fear. My family was too afraid to give me my Christmas presents. I went for an HIV test as soon as the festive period was over and in the two week waiting period for my test results I got arrested. I was called into a room in Holloway and was told that my HIV test results had come back positive. My first thought was ‘Oh great, the woman that was telling me would give me a cigarette’ she did, my first question was what about children? Would I be able to have children? I then remember saying, what about my nephew and niece, would I be able to see them? I have absolutely no recollection of what she said but I do remember I got more than 1 fag! Very important whilst doing ‘time’.

From that moment on I was isolated from the whole prison community. I was put in a cell on my own and my food was passed to me through the hatch. I could hear the prison staff talking about the girl with AIDS. I was on remand and when I was due to go to court again I was isolated within a cubicle which was off from the main communal waiting room. All day I could hear the other girls being picked up and packed off into vans to their various court appearances and each time the van staff would be saying that they refused to take me as the van would have to be fumigated. I remember my initial thoughts during my incarceration – I was quite accepting that I was going to die, but I knew for sure three things: that I didn’t want to die a victim, I didn’t want die a prisoner and I didn’t want to die a junkie. It would take a book to tell you about my life since then, from coming out of prison for the last time, facing incredible stigma and prejudice, to rehabilitation for addiction.

I became involved with The International Community of Women Living with HIV/AIDS, travelled to various parts of the globe and met many more inspiring people. I also reconnected with one of my first passions and talents and spent six years gaining a diploma in Creative Arts and Embroidery. But in the last seven years I have experienced two bouts of Grade 3 – very aggressive – breast cancer, kidney failure resulting in the loss of a kidney (Hey perhaps it balanced out the loss of 1 breast), a broken hip due to Osteoporosis, which is highly likely due to long term living/medication of HIV and chemotherapy, and severe depression. OK back this very present moment. What I have learnt (and many times forgotten) over my 25 years of living with HIV is: all we have is this ‘present moment in time’. Respect and honor it. Life is precious and so are we. Leigh Positively UK’s peer support provides a lifeline to those isolated and in prison. Positively UK currently provides peer support for women at HMP Holloway, HMP Bronzefield, HMP Downview, and from May 2012 will be providing peer support for men in HMP Pentonville. For more information contact Sophie on 020 7713 0444, email info@positivelyuk.org

Available at

Submit articles to Positively UK magazine If you are HIV positive and would like to contribute to the magazine you can join our editorial team. For more information about this please visit our website at www.positivelyuk.org or email us at ninas@positivelyuk.org w w w. p o s i t i v e l y u k . o r g

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Having the privilege of being involved with Positively Women in the early 90’s and working alongside the original founder members – Sheila, Jaynie, Caroline and Kate, in the days when we truly needed the whole ethos of peer support that kept some of us alive and helped others to die. Decisions and choices made each and every day only highlighted the fact we might not have much time left on this planet. This changed in the advent of what I call ‘Rocket Super Science’ drugs that enabled those of us in the extremely fortunate position of having the choice to access them to start thinking about a future.

Growing (Old) Pains As people with HIV live longer, they are facing pains old and new. David McLay reports on peripheral neuropathy and arthritis.

that is probably under-recognised in HIV,” says Dr Cox, who treats many of the HIV positive people with PN who seek care at the hospital.

Oh, these pains! Are they HIV or are they age? It can be difficult to know when to mention an ache or a pain because it may be HIV-related, and when to chalk it up to the body’s natural decline. Considerable attention is given to life-threatening conditions such as heart disease and diabetes among people with HIV, now that effective HIV treatments are leading to a longer life with the virus. But less attention is paid to painful conditions, which can sometimes cast a heavy cloud over the seemingly sunny prospect of a longer life.

Across the English Channel in Amsterdam, Dave R would probably agree. HIV positive since 2004, Dave was diagnosed with peripheral neuropathy in 2009, though the 61-year-old recalls feeling early symptoms of the condition three years earlier. “I was feeling as though I was walking on bare bones, with no fat or muscle to cushion the impact. That wasn’t happening all the time but it was the first time I became aware of problems with my feet.”

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Peripheral neuropathy

It can be a struggle to get pain and its underlying cause acknowledged, so it is refreshing when a doctor leads the way. In this case, it’s Dr Sarah Cox, consultant in palliative medicine at London’s Chelsea and Westminster Hospital, and the condition whose treatment she has championed is peripheral neuropathy (PN) - a neurodegenerative condition often associated with changes in sensation in the extremities. “HIV PN is a common problem

A lag between symptoms and diagnosis is not uncommon. Dave feels: “Diagnosis can take forever. There are so many side-effects of HIV medication that can confuse the picture and if you have other problems as well, it’s difficult to pin down what causes what and why, especially in the first stages of neuropathy, which are generally fairly mild.” He continues, “The symptoms trundle along from month to month, sometimes hitting plateaux but gradually getting worse until you need to press your case somewhat harder.” Fortunately for Dave, his doctor and other doctors, including Sarah Cox, are listening.

Increasing incidence PN, officially known as HIV-associated sensory neuropathy, affects sensation in the limbs, generally the feet and much less frequently the hands. There can be a loss of sensation or an overly painful reaction to touch. Severe burning pain or a ‘pins and needles’ feeling is also common. PN can be caused by advancing HIV infection itself or by ant-iretroviral drugs. Not surprisingly, PN is more common in advanced HIV disease. Remarkably, while rates of most HIVassociated neurological conditions

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(conditions related to the nervous system) have decreased since the introduction of effective anti-retroviral therapy, rates of PN have increased, with prevalence estimates ranging from 9 to 60% of HIVpositive people who have access to anti-retroviral therapy. “We had expected to find that HIV PN incidence would fall as HIV treatment is more effective and we use less of the nucleosides implicated,” Dr Cox says. “We are still trying to understand what other factors might be maintaining the prevalence of HIV PN.” HIV-related neuropathy tends to emerge gradually, while anti-retroviral-related neuropathy emerges more rapidly and can usually be stopped from worsening by stopping the drug. Many of the factors normally associated with an increased risk of PN are those that would be expected. Having another condition which can also lead to PN increases the risk. Low CD4 cell counts, lowest-ever (nadir) CD4 cell count and high viral load - all signs of a weakened immune system and advanced disease - also increase the risk. Being older (and being taller) also increases the risk of PN... PN may be another one of those things - along with such issues as the long-term effects of anti-retroviral therapy and what appears to be premature ageing - that more and more people with HIV can expect to face as they live with a chronic infection.

Living with PN Diagnosis of PN is based on symptoms (what people feel and tell their doctors about) and signs (physical indications noticed by a doctor during an exam). Certain neurological tests are carried out in some centres in order to distinguish HIV PN from PN resulting from its many other possible causes including:

* Diabetes or insulin resistance * Heavy alcohol consumption * Thyroid disease

Neuropathy related to HIV or antiretrovirals usually affects both sides of the body symmetrically, whereas other types may not. When investigating pain symptoms, doctors routinely check for these other conditions. If any are diagnosed, they can be treated. “When a diagnosis of HIV PN is made,” Sarah Cox says, “we would start by explaining what HIV PN is, how it may have been caused and what to expect.” Then the first goal is to prevent further damage by identifying any aggravating factors and trying to control or eliminate them. This includes proper management of the HIV infection. Neurotoxic drugs are identified and stopped or replaced with a safer alternative if possible. At present we don’t know how to cure or reverse neuropathy: attempts to develop therapies that promote the regeneration of destroyed nerves have so far failed. Dr Cox says: “We explain that we cannot reverse the condition and that treatments we offer will be to mask the symptoms.” Sarah Cox also advises her patients on how to live with PN day to day. “We point out the particular problems associated with loss of ability to distinguish when something is hot and how it is important to test bath temperature with an elbow rather than feet. We advise individuals inspect the bottom of their feet for damage and be very careful breaking in new shoes. I usually suggest they avoid walking barefoot.” Dave has tried six different drugs alone or in combination, and all have been “unsuccessful in taming the pain”. He is weaning himself off oxycodone, preferring for now to live with the pain: “I try to mentally control the pain and relax as much as possible plus accept that the pain is there and not try to fight it by tensing up or becoming too depressed.” In addition to managing the pain, learning about the condition has also helped Dave. “Very early on, I was more than a little frustrated at the lack of information

available to HIV patients with neuropathy,” he recalls. So he set up a website, originally in Dutch and now also in English, along with a blog to provide information about neuropathy, from which people can make their own decisions and ask their own questions while sharing the experiences of others. The blog is available at www. neuropathyandhiv.blogspot.com.

“There are so many side-effects of HIV medication that can confuse the picture and if you have other problems as well, it’s difficult to pin down what causes what and why.” According to Dave, “The value of doing your own research is that you can walk into a doctor’s appointment strengthened by knowledge and maybe not be so confused when you walk out. Neuropathy is not an easy thing to explain; if you have some idea beforehand it will help enormously.” Finally, Dave points out the importance of a support network. “Having chosen wisely, make friends of your two main healthcare providers: your home doctor [GP] and your HIV specialist. It’s a long journey with neuropathy; you need to have someone on your side who knows what you and they are talking about.” As for family and friends, he adds, “They won’t understand what’s happening to you and possibly after several weeks of moaning, will be distinctly unsympathetic too. If possible, take a family member or a friend with you to a consultation with your doctor. It’s vital that you’re taken seriously because, otherwise, you can feel very lonely while you’re suffering. You’re going to need a listening ear or a shoulder to cry on at some stage in the future.” Sound advice, indeed.

Treatment options for PN Note that many of these have not been proven to be effective in treating HIV PN.

* Anticonvulsants – gabapentin, pregabalin, lamotrigine

* Antidepressants – TCAs (tricyclic

antidepressants) such as amitriptyline and nortriptyline; SNRIs (serotonin-norepinephrine reuptake inhibitors) such as duloxetine and venlafaxine

* Nonspecific analgesics – NSAIDs

(non-steroidal anti-inflammatory drugs) such as ibuprofen, naproxen and paracetamol (acetaminophen); opioid analgesics such as oxycodone, fentanyl and morphine

* Topical treatments – lidocaine and capsaicin

* Complementary therapies – acetyl-

L-carnitine, co-enzyme Q10, cannabis, hypnosis, acupuncture and acupressure

Arthritis and myalgia: joint and muscle pain

Many rheumatic conditions are autoimmune conditions and have long been a part of HIV disease. There are several potential mechanisms to explain how HIV can lead to

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* Syphilis * Kidney disease * Vitamin B12 deficiency * Other infections (shingles, CMV).

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Burning and stinging feet are not the only pain that people with HIV are facing as they look towards a long life with the virus. As Dave R can attest: along with PN, he lives with arthritic back problems, which he suspects are in part due to playing rugby during his school years. While Dave’s arthritic condition preceded HIV infection, many other people with HIV are finding that rheumatic diseases - diseases of the muscles and joints - can be true pains in the proverbial. Rheumatic conditions include a broad spectrum of conditions that affect the joints and musculoskeletal system. Familiar conditions include different forms of arthritis, systemic lupus erythematosus (SLE or lupus), fibromyalgia (muscle pain) and gout. They can be mildly painful at best and debilitating at worst.

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rheumatic disease. Among them is that HIV particles are similar to other antigens in the body. Infection with HIV can cause the body to initiate an autoimmune response that can underlie conditions such as arthritis or lupus. Before the introduction of ART, estimates of the prevalence of rheumatic disease in people with HIV ranged from 11 to 72%, with joint pain affecting 5 to 45% of people. Different forms of arthritis were common, as well as muscle weakening. In the ART era, the prevalence has been reported as approximately 9%. Along with the decrease in prevalence, the types of diseases have also changed. Less common are exotic beasts such as diffuse infiltrative lymphocytosis syndrome (DILS, a painless condition that causes swelling of the salivary and tear glands and often lymph nodes) and spondyloarthritis (inflammation of the

PositivelyUK Spring 2012

joints in the spine), while musculoskeletal problems, such as osteopenia (low bone mineral density), and infections still occur. Starting antiretroviral therapy can cause IRIS (immune reconstitution inflammatory syndrome), which can lead to new cases or reactivation of pre-existing cases of rheumatic conditions such as rheumatoid arthritis or lupus. In untreated HIV infection, rheumatoid arthritis and lupus are dampened because a weakened immune system is not able to produce the cytokines, cellular messaging chemicals like tumour necrosis factor (TNF), that are involved in the ongoing inflammation underlying these diseases. Restoring the immune system reactivates these pathways leading to flare-ups. The symptoms of IRIS usually get better spontaneously, but can be very severe while they are happening.

Gout and its precursor hyperuricaemia (high levels of uric acid in the blood) also have a high prevalence among people with HIV. Hyperuricaemia has been reported in up to 42% of people with HIV, and gout is about tenfold more common than in HIV-negative people. Hyperuricaemia has been linked to certain antiretroviral drugs, specifically ddI and d4T. The mitochondrial toxicity associated with these drugs is thought to cause changes in the bodyâ&#x20AC;&#x2122;s metabolism that lead to increased levels of uric acid in the blood. Finally, fibromyalgia was the second most common rheumatic condition in a crosssectional US study of HIV-positive people taking ART. Seventeen percent of people reported the syndrome, which includes long-term, body-wide pain and tenderness in soft tissues including the joints, muscles and tendons.

Living with arthritis and muscle pain There are no guidelines for the treatment of rheumatic conditions in people with HIV. However, most therapies used in the general population appear safe and effective among people with HIV when used prudently. The UK Royal College of Physicians’ guidelines for the treatment of rheumatoid arthritis recommend a combination of agents: short-term glucocorticoids to reduce inflammation, agents from a class called the DMARDs (disease-modifying anti-rheumatic drugs) and agents called biologics. People also use NSAIDs (see Treatment options for PN) or COX-2 inhibitors (another sort of anti-inflammatory drug) to manage the pain associated with the condition. DMARDs include drugs such as methotrexate, hydroxychloroquine and sulfasalazine. Methotrexate was originally avoided in people with HIV because it suppresses the immune system. However, it is now used with careful monitoring of CD4 count and viral load.

“Make friends of your two main healthcare providers: your home doctor [GP] and your HIV specialist. It’s a long journey with neuropathy; you need to have someone on your side who knows what you and they are talking about.” Biologics are another option for treating certain joint conditions. They are artificially synthesised analogues of naturally occurring proteins that block the action of inflammatory cytokines such as TNF, and include etanercept and the monoclonal antibodies adalimumab and infliximab. Since TNF-alpha enhances HIV replication in test-tube studies, researchers speculate that these TNF-alpha blockers may have antiretroviral activity. Clinical studies of these drugs in HIVpositive people are in their early stages, but look promising. The drugs do not seem to exacerbate HIV disease and appear to be relatively safe if used prudently and with regard for the potential for other infections.

People living with arthritis often try to manage the condition through changes in their diet and supplementation, and many claim some success. Supplements with anecdotally reported success include glucosamine and chondroitin, fish oils or omega-3 fatty acid supplements, gamma-linolenic acid (found in evening primrose, blackcurrant seed or borage seed oils) or other herbal therapies such as feverfew or willow bark extract. Other people adjust their diet, excluding gluten or other common food allergens, or following a vegetarian or Mediterranean diet. Quality placebo-controlled studies report some benefit linked to these dietary changes and supplements: people often feel fewer symptoms and some measures of disease improve. However, there is not one option that is clearly better and so, just as with HIV, people often try different approaches and see what works for them. Remember, it is important to tell your HIV healthcare team about anything you are taking, including supplements and herbal remedies, in case there are interactions with your HIV treatment.

A longer version of this article first appeared in issue 209 of NAM’s HIV Treatment Update, Autumn 2011. For more information on NAM and HTU, or to subscribe to HTU, go to www.aidsmap.com

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Hydroxychloroquine is used to treat both rheumatoid arthritis and lupus, and is used in people with HIV. It has antiretroviral properties: in early studies, high doses of the drug were comparable to AZT (zidovudine, Retrovir) monotherapy in controlling viral replication.

Positively UK at 25 - timeline As we celebrate our 25th anniversary, we remember some important milestones along the way.

1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 Princess Diana opens Positively Women’s premises at Sebastian Street

Wom feature fi girl wo

Positively Women receives funding from the Department of Health to employ the first full time worker

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Positively Women founded by Sheila and Jayne to address the lack of women specific HIV services

Elton John AIDS Foundation established in UK

The Red Ribbon is launched as an international symbol of AIDS awareness The UK government launches a national HIV campaign ‘Don’t Die of Ignorance’

The first World AIDS Day takes place on 1st December

1,170 people diagnosed with AIDS in the UK

Triple drug therapy ‘cocktail’ recommended for HIV

Freddie Mercury dies with AIDS

Conservative health minister Julia Cumberledge blocks £2m Health Education Authority safer sex campaign in the UK

The International Women’s Health coalition (WHC) and Population Council holds a consultation on Microbicides in New York

Elton John AIDS Foundation established in US

30 million people are living with HIV world wide

The viral load test is developed providing information about the risk of disease progression.

natio UK, c Millenni Goals t ot

23 diagnose HI

British HIV Association (BHIVA) founded

UK introduce routine antenata testing

1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 Positively UK Spring 2012

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 Positively Women changes to Positively UK, extending peer support to men and young people

Positively men magazine first magazine cover oman living with HIV

Positively UK starts its first support group for gay men

60,000 people living with HIV in the UK, of whom a third are unaware of their status

Children’s HIV Association (CHIVA) founded as a network for people providing health care for children and young people with HIV

189 ons, including commit to the ium Development to tackle HIV and ther diseases

Over 3,000 people ed and living with IV in the UK

es al HIV

G8 leaders unite to demand the creation of a ‘Global HIV vaccine Enterprise Consortium of government and private sector groups to coordinate efforts to find a vaccine for HIV

For the first time, more people newly diagnosed in the UK are infected with HIV through heterosexual sex than gay sex

Over 30,000 people diagnosed and living with HIV in the UK

Swiss study claims people adhering to ARVs have a “negligibly small” risk of transmitting HIV through unprotected sex

The FDA approves the first singlepill, once-a-day AIDS treatment, thereby allowing patients to manage their disease without a complicated regimen of drugs

PozFem-UK, the national network of women living with HIV, established

THT launch myHIV website

30 years since AIDS was discovered. Nearly 30 drugs available to treat HIV

91,500 people living with HIV in the UK, of whom a quarter are unaware of their status

President Obama removes the 22-year-old travel ban that prevented HIV positive people from entering the United States.

Health Protection Agency estimated that there will be over 100,000 people living with HIV in the UK

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 w w w. p o s i t i v e l y u k . o r g

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The UK Government launches the first national strategy for sexual health and HIV

Positively UK organises national conference of people living with HIV ‘No Decision About Me Without Me’, attended by over 100 delegates

I’m Still Here, Yeah! How it feels for me to be HIV positive since 1992.

back then ignorance among medical staff, though not in the clinics, was common. I was told I had five years to live and, luckily for me, I just put one foot in front of the other, and carried on as normal. Now we are told we’ll live to a ripe old age and that it’s okay to have natural births and get a job without declaring your HIV status on you application form (not that I ever did). Thank God for the support of Positively Women (now Positively UK) as well as Lighthouse and PPC. They really did keep me sane.

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Ageing; everyone wants to stay young, but actually, I think it’s cool. I should be able to deal with the challenges of HIV, while looking after my grandson and trying to cram in as much as possible (oh really?). I feel lucky I don’t have to go to bed wondering if I will still be alive for my children the next morning, the next week or the next year. Although I do go to bed wondering if there will be any support left with all the cuts – not just with the drop-in centres but also the NHS. Saying that, we are survivors and, like in the early days, we won’t go down easily...

Tiredness; is it from HIV? Taking care of my grandson while my daughter finishes her degree? My age? The menopause? Is it physical or is it just my state of mind? Mentally I’m ecstatic, I’m alive! Who’d have thought back in ‘92 that I’d end up surviving HIV and Hep C, plus other complications. Now my kids are all grown up. We have an inner beauty, us older ones, we really do have to let our lights shine! The way I see it, I’m here for a reason, because my nine lives surely must have run out by now. Us oldies in the West are seen as little old women or men who are not to be taken seriously! I say it is better to be in control and accountable for our own choices with treatment etc, after all, we are the experts now, the educators. Mentally I am still part of the culture of the 70’s – the culture of hippies, Hare Khrishnas and Jesus. I still have the aim of self development, but not the drugs anymore. It’s strange to think that in the early days of HIV there was only AZT and, a while after, DDT. Things are good now, and hey, I got to see my kids grow up after all and to see their children! Like so many others I am a long term survivor of HIV, Hep C, child abuse and domestic

PositivelyUK Spring 2012

My biggest regret as a teenager is being in self-destruct mode with LSD, dope, barbs and heroin. I didn’t know who I was then because I could fit into all categories; drug user, smoker, nonsmoker, lesbian, bi, straight (not really), married, single mother, widowed, HIV positive, blah blah blah. Now, take all that away and I’m still me. violence. But now, most importantly, I am a grandmother, which I never thought I’d be around to be. I saw the start of the Human Rights protests in the 60’s and 70’s, through the 80’s and 90’s and swings and roundabouts in terms of racism and sexism. Nowadays I still think that if HIV only targeted important governmental persons and then spread to the general public, funding wouldn’t be a problem. And there is still mass inequality – around only 12% of heads of government are women, even though we are 52% of the World’s population. The question I’m asking is: have we progressed from the 60’s and 70’s? Being diagnosed in the early 1990’s when no treatment was available really felt as though it was a death sentence. Way

Because it felt like a death sentence when I was first diagnosed, I never imagined myself being able to grow old. Wow, that’s another stigma and more discrimination if I allow it. After all, as a teenager and even in my 30’s I had hang ups about my then youthful body, whilst also not appreciating my health at the time. Here in the West we have to forgive ourselves for not being perfect. We’re taught that the only way to be happy is to have that perfect body. I am HIV positive and I am getting old – Yes! I’m still alive! And when I am really elderly I hope I remember to keep moving one foot in front of the other to stay fit. And also to exercise that frame of mind, and to appreciate the present, my present, and a huge gift of life all wrapped up with love from my children and grandchildren.

Life Expectancy

Thirteen years ago when I was first diagnosed with HIV I didn’t think I would face problems related to ageing. I thought I would be dead. When a doctor tells you a diagnosis that you probably only have another ten years to live, it sort of puts a damper on the appeal of taking out a pension policy. Of course I know now that he was a complete bloody idiot and that I can expect a “near normal life expectancy”, but how near to normal should I hope for? Does it mean in reality that I’m probably already more than half way through?

I have heard that HIV can speed up the ageing process, or at least cause my immune system to age faster. Last time I checked Clinique hasn’t come up with a miracle cream to slow down the signs of an ageing immune system, disappointing I know. But hang on; no one can actually see that my immune system has aged faster than it should. So my heart may be slightly dodgier than it should be and my bones slightly more brittle, but my skin still looks great and being someone of extraordinary shallowness, you can imagine what I would prefer. I still delight in probably looking younger than I actually am, so the possibility of actually looking older fills me with an unspeakable dread. But so far I seemed to have dodged that bullet. Perhaps I’m sadly delusional, but when I look in the mirror someone still pretty hot looks back at me. Ageing and middle aged-ness isn’t simply to me about how I might look, but also about how I’m living my life. Do I feel like I’m slowing down and changing my interests? Well actually probably not. I may now be one of those women who squint at menus in restaurants because they refuse to recognise the need for middle aged person’s reading glasses, but I’m still going out. I would not rather stay at home with a hot cup of cocoa and listen to the Archers. It may take me longer to recover from a killer hang over, but that hasn’t stopped me from partying. I don’t feel any different; I’m still the same person I was twenty years ago, albeit with droopier breasts and fading eyesight.

Thirteen years ago when I was first diagnosed with HIV I didn’t think I would face problems related to ageing. I thought I would be dead.

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I’ve always asserted that HIV has not prevented me from living my life as I choose and so far that’s never changed. I plan to follow that mantra as long as I possibly can for ageing as well. So am I likely to be the grotesque old woman in a nightclub? Probably. You might feel sorry for her, but she always seems to be having a fabulous time. Let’s drink to ageing disgracefully. Susan

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Middle aged. I remember thinking the term referred to ladies who avidly read the Daily Mail, bake scones for church fairs and have sex once a year with their balding philandering husbands. Yet somehow middle age has crept upon me. The challenge is, do I go gracefully and gently into the dark night of ageing or rage against it and risk becoming one of those grotesques, trussed up women in revealing inappropriate dress trying to get off with twenty year olds in discos? And where does HIV fit into this chilling inevitable one-way journey?

I Count My Blessings I’ve done pretty well for 25 years; I’m 70 now and I was 45 when I was diagnosed. I had a partner who started to show signs of being unwell in 1986. Where I now live in Woodbridge was our weekend home, we’d come up here for Christmas. He went downhill rapidly – losing weight and all sorts. After Christmas we had to rush him back to London and got him into the Middlesex Hospital and he had Kaposi’s sarcoma, Pneumocystis Pneumonia – the lot. They treated him, they put him on antibiotics, but he never really recovered. We took him home but we were back after a few weeks for a blood transfusion because he was anaemic and they re-admitted him. The Middlesex was, I think, the first specialist HIV ward in the country and it was inaugurated by the Princess of Wales while we were there. She was marvellous, she sat on his bed and it was in all the papers. He didn’t last very much longer, he ended up getting CMV and he died in the May.

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I was tested and found out that I had contracted HIV as well. They didn’t put me on any medication – they didn’t think it was necessary as my blood counts were fairly good. It wasn’t until two or three years later they said we think you ought to go onto some – I can’t even remember what the darned medication was in those days! They said I didn’t have to make my mind up immediately, there was a lot to read; they gave me all this information that was so contradictory and conflicting. I went off to America for a holiday and stayed with a friend of mine in California who was an urologist, he had AIDS, he’d had to give up practicing and was surviving on medication. I drove from Southern California to North West America to Washington state where because I had thrush I went to see a doctor in a little clinic in a place called Port Townsend. I told him my history, I had to be honest, and he said asked what have I decided about taking medication. He said, you’re lucky, you get it all for nothing. He said, take my word for it, and go for it. His wife had a blood transfusion and has contracted AIDS, she was lying in a hospital bed dying. That convinced me. I came home and was put onto medication which I stayed on for several years.

Positively UK Spring 2012

In ’89 I was made redundant and decided to get out of the ratrace and moved up to Woodbridge permanently. My GP here told me there was a new person at the sexual health clinic at Ipswich Hospital. I had avoided it like the plague, I thought they don’t know much about HIV up here. Anyway, I went to see the chap and he was marvellous; he was working with clinics in London. He reduced the amount of medication I was on, said it was far too much. That carried on for a while when eventually he said we ought to start trying some of the new therapies and I started on combinations some of which gave me reactions – diarrhoea and stomach pains – but eventually we hit the right one. I was taking something like six pills a day, certain pills at

certain times of the day – of course now that’s all become old hat. Three pills a day two on the morning and one in the evening and all my blood counts are fine! I’m an advocate for spreading the word, I don’t have any problem letting people know that I’m HIV positive. Over the years, I’ve learnt how to cope with it and how to break the news to people so that it doesn’t shock them too much. Most people are amazed, firstly they say I don’t look as though I am 70 – more like 55 and that I must be doing something right and of course I tell them it costs me a fortune in face cream! I don’t think I have experienced any discrimination over the years. I did a little bit of part time work, for catering companies, I even worked at the deli counter in my local supermarket. I didn’t tell people immediately, some customers you get to know them, you get chummy with people. Having been a sales manager I know how to deal with people and when you get into conversation and people say, oh you’re good I say yeah I am not bad for an old man whose been living with HIV for 25 years! They are astounded and I take that as a huge compliment. I think it’s good for people to know that it’s not a death penalty. My attitude is “mind over matter”, when my partner was ill and I saw the way he deteriorated… After he died I said to myself I am not going to go like that. I’ve tried to maintain that attitude throughout and I’ve tried to do the things that I would normally do, within reason. Right back in the beginning I thought; God does this mean I am not going to live for very long? But I didn’t think about it too deeply and I got on with my life and had a good time. I spent all my money not knowing that I would be living for so long! I’ve had a damn good life and I can say to people if I drop dead now, I have no complaints, I wouldn’t change anything. I’m now living on the breadline on a state pension with a couple of tiny little pensions from previous jobs that I’ve done and an annuity

I took out privately. My consultant several years ago said I think you ought to start applying for some of the health benefits that you should be entitled to and I started getting disability living allowance and mobility allowance. I opted to go for the Motability scheme rather than have the cash which means I get a new car every three years and I don’t have the expense of tax and servicing and that sort of thing. So I’m able to travel – I get down to see my sister in Chelmsford if I want to; I don’t get too far these days anyway!

I was taking something like six pills a day, certain pills at certain times of the day of course now that’s all become old hat. I have two nieces through my sister and two nephews through my brother. The eldest niece has little boys an 11 year old and a six or seven year old who are great fun. They all treat me like a mate. My youngest niece, who’s in her 30s, has a little

boy who was born in October, a Libran like me so I don’t know what he’s going to be like – probably a show off like me! And my eldest nephew he’s got two little girls who are lovely, very intelligent, musical and artistic. And the other younger one, he’s got a little one who must be about four… That’s six great nephews and nieces! Quite recently I have been giving some thought as to what happens in five years’ time. The ageing process is a funny old thing. Yes I do get aches and pains and yes I am a little bit slower and I do have problems with the nerve endings in my right hand so I have difficulty to opening cans and doing buttons up. But I look after myself as best I can by eating properly. I know I don’t think I keep my house as clean as it used to be, it used to be spotless, but now I think what the hell? I’m a little bit like Quentin Crisp he said you don’t notice another layer of dust after five years! It occurred to me should I put myself down for the local alms houses and I got in touch with them and they said there isn’t a waiting list you let us know when you think you are ready to come in. So it’s not going to be for a while, they don’t take pets and my dog’s only nine years old. If she lasts another six or eight years and I’ll be nearly 80 by then and I suspect by that time I shall be getting a bit doddery!

Michael and

T he G eneration G ame – 2 5 Y ears o f P ositively U K

Michael

his great neph

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Ageing With HIV There are currently over 14,000 people aged 50 and over diagnosed with HIV and in care in the UK, which is about one in five of all people diagnosed. Including those undiagnosed, there could be as many as 18,700 people in this older age category living with HIV in the UK. In areas where people may relocate and retire to, like the South West and South East coast England and Wales, this figure can rise to one in four and higher.

and increased incidence of HIV in the 50 plus group leading to an overall increased prevalence in older people. Getting an HIV diagnosis in older age and the fact that those infected at a younger age are living longer can mean coping with a range of additional problems and difficulties, from poorer physical or emotional health, through to social isolation and the financial issues that affect those unable to work or in retirement. Older people are more likely to be diagnosed later than younger people most probably because they are thought to be less at risk than other age groups both by themselves and by health services. Therefore older people, especially in high risk groups, need to be considered in terms of targeting prevention work and testing and not just in terms of treatment and care.

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Around half of these people will have been living with HIV for more than a decade, benefitting from the effective treatments that became available in the mid 90s, but by 2010 around 13% of those newly diagnosed were 50 or older, nearly three times the figure a decade before. This suggests that people over 50 are more sexually active now than in previous decades and are taking more risks. So there is both an ageing cohort

There is some evidence from research showing that people with HIV have more conditions associated with ageing at an earlier age than the general population. There is evidence that this is caused by both how HIV affects the immune system and how HIV medication affects the body. Conditions often associated with ageing seen more commonly and earlier with HIV include:

* low bone mineral density * cancer * cardiovascular disease * diabetes * early menopause. * kidney function problems * neurological and brain function problems

Positively UK Spring 2012

However the latest research from Denmark in 2011 shows that when comorbidities, co-infections and life-style factors are adjusted people with HIV had similar life-expectancies compared to others. So there is hope that health improvement measures can even out some of these health disparities. In 2010 THT published ground breaking research into what older people with HIV across the UK think and want. This research, funded by the Joseph Rowntree Trust and done in conjunction with Age UK, is called 50 Plus and the full report is available (http://www.tht.org.uk/binarylibrary/ peoplesexperienceofhiv/50-plus-finalreport.pdf).

A briefer Executive Summary covering the main points is available (http:// www.tht.org.uk/binarylibrary/ peoplesexperienceofhiv/50-plussummary-report.pdf). 50 Plus found that people with HIV aged 50 and over in the UK

* have twice as many other long term conditions as their peers, on top of their HIV

* are poorer, less economically active and less likely to have savings for old age

* are as likely to experience age

discrimination as HIV discrimination

THT is working to help older people with HIV and to ensure that this picture is different for future generations of people with HIV. A leaflet is available explaining what someone over 50 with HIV can do about the most common problems reported, written by people over 50 with HIV who were involved in the research: (http://www.tht.org.uk/ informationresources/publications/livi ngwithhivgeneral/50plusandhivpositive. pdf).

* are less likely to be homeowners * are worried for the future about

social care, health care and financial safety

Led by Dr. Dana Rosenfeld (Keele University), the multimethod interdisciplinary project, entitled HIV and Later Life (HALL), will examine these older people’s life histories; mental health, social support and quality of life; and experience and management of HIV. The team is particularly interested in the social support, mental health, and quality of life of older people with HIV, with the long-term goal of developing interventions to improve these aspects of their lives. Largely due to effective medications, half of those living with HIV in the West will be aged over 50 by the year 2015. This older community is much more diverse than was the population of earlier years, with an increasingly high proportion of Black African and heterosexual people. This community is further divided into those who have lived with HIV for many years and those who were infected and/ or diagnosed in later life. Research has shown that older people living with HIV generally experience higher rates of mortality, illness and depression and that, unlike the uninfected, their depression rates do not decrease with age. This is probably due to their smaller and more fragile social support networks. But despite growing awareness of this ageing and increasingly diverse HIV community, little is known about its members’ quality of life, mental health and social support needs, and about how their different histories and circumstances shape how they experience and manage HIV in later life.

To gain knowledge about these important issues, the team will interview 10-15 stakeholders (including clinicians, policy makers and HIV activists), then interview 90 people living with HIV aged over 50 and gather mental health survey data from a further 140. The sample will include men who have sex with men, and Black and White heterosexual men and women. These will be recruited through HIV clinics in Chelsea and Westminster Hospital and Homerton University Hospital, and through community organisations in the London area. In addition to Dr. Rosenfeld, the team includes Professor Jane Anderson, Homerton University Hospital; Professor Damien Ridge, Westminster University; Dr. Jose Catalan and Dr. David Asboe, Chelsea and Westminster Hospital; Dr. Valerie Delpech, Health Protection Agency; Dr. Genevieve Von Lob, Keele University; and Ms. Kelly Prince (Keele University). The team is being guided by a diverse advisory board led by Simon Collins of iBase, an HIV-treatment activist organisation, and will share its findings with the academic, clinical, and HIV communities. This will include an end-of-project conference in London in July 2013, targeted at the HIV community, and a project website.The project has been funded over two years by the Lifelong Health and Wellbeing Cross-Council Phase 3 Pilot Studies Programme which is funded by the five UK research councils in partnership with the UK health departments.

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A New Study is Exploring the Lives of Older People Living With HIV in the UK.

Life is a List they do cause significant memory blanks… See above.)

problem? So I have to try to remember to add everything to my “To do” lists.

1. Wind clock 2. Wash and dress (check for clean clothes set left on stool in bedroom) 3. Let dogs out 4. Feed dogs 3 biscuits each 5. Make bed 6. Check washing machine for wet washing to dry 7. Breath 8. Put down left foot 9. Lift right foot 10. This is a joke right?

My neighbours were very understanding – thought it was very funny actually – but their youngest boy now refers to me as “the drunk lady”… I just hope the stories are travelling too far around the village!

I’m informed that I have requested “squirrel hair brushes” be bought back from holidays – not that I know what they are…?

T he G eneration G ame – 2 5 Y ears o f P ositively U K

I get up in the morning and then I look at my list and I:

Sorry – no. This is how I live my life these days. It isn’t very hard – in the sense that it’s easy to follow the list. (Well… sometimes it’s not that easy to remember to look at the list…)

Positively UK Spring 2012

My life became a catalogue of hilarity and catastrophe closely following on each other’s heels. Take yesterday – I’m told that I arrive at my (very nice, very cute) neighbour’s back door just as their parents were arriving for a family dinner… Nothing wrong yet? I then proceeded to sing about dandelions (yes sing, la la la etc. – the dandelions I can’t explain… ?!*@) and expend a great deal of energy in trying to persuade everyone to come and pick the dandelions with me…. I have absolutely no memory of, or explanation for, the events I’ve listed. I have excuses – well reasons – they are called medication and dementia. (I’m on a lot of pain medication and muscle relaxants as well as HAART and while I can’t blame them completely,

I regularly forget to pay local bills (newspapers, milk, bread shop) and am rescued by my partner, so hopefully my credit rating is still okay and my purse benefits.

My “To do” lists are veritable works of art. They can extend to several pages and each has it’s own system of “tick” boxes. Tick box 1 if done, box 2 if not done and Box 3 if something else came up as a result. (This needs checking on the next day’s list!)

It’s common for kids to turn up on the doorstep to claim their “sponsorship” money (which I, of course, duly coughup for fear of looking either mean or stupid.) It’s possible of course, that the kids have discovered a source of ready cash and are tapping me regularly… I have to take the chance and pay up… Trust their honesty. This is a tiny village after all… Banjos at dawn and all that!

But if the lists are a work of art – and let’s compare them to a comparatively normal artist like Constable – my diary is the work of Dali! It is a nightmare, a page at a time of confusion and freely flowing thoughts combined with artistic miniatures – otherwise know at doodles. Of course my diary let me know who I saw, what I did, where I went etc. IF I can re-interpret it later.

I’m on a lot of pain medication and muscle relaxants as well as HAART and while I can’t blame them completely, they do cause significant memory blanks. I forget appointments so regularly that people now ring me the day before to remind me… That’s okay except that I’m “phone phobic” and try to avoid answering it where possible… See my

Can you tell me what “BGT. X MSS. @ S33” means? No? Neither can I, but it’s in my diary and I added it to my lists and now I have to tick box 3 every day and carry it forward until I work out if it’s something important that I really need to do… Life is very simple when I stick to the lists.

1. Lift right foot 2. Place right foot on floor 3. Lift left foot 4. BGT. X MSS. @S33 Until I reach number 4… Unless someone has some sponsorship money I need to pay? Lesley

Virtual Grandparenting Becoming a grandparent is one of the most exciting and treasured times in a person’s life. From grandchildren’s birthday parties, babysitting and offering advice it means that you are about to take on a whole new set of responsibilities, for the best possible reasons.

Finding Out I always used to say to my son over the phone, “Don’t make me a gogo (grandmother in Xhosa) till I am 50!” He would just laugh it off. I came to the UK in 2001 and my son was 15 then. After a difficult time getting my leave to remain resolved I couldn’t visit my country or bring my son over here to see me. I remember the day in August 2009 when my sister told me that I was a grandmother to a baby girl born on the 28th of July 2009. A moment of initial shock was immediately followed by joy. I called my son to find out how he was feeling. He sounded happy and my sister, of course, filled me in on the gory details of how “it” happened. It took me a few days to actually believe my son was a father and I was a gogo. In my culture, you are either called by your first child’s name or your grandchild’s first name – so here I am now called gogo vaHelen!

Wish list... So, back to the beginning. I may not see my muzukuru till she is about 5 or 6 years old, but I will do everything in my power to make sure she knows who I am. I will obviously miss out on some of those precious moments, but I really do have very little choice in this case. She is a bubbly, sweet girl who has now started nursery. I look forward to the day we will be meet, when she can tell me all about her day and give me a real cuddle. So, here I am, a whole gogo. I never thought I would live to claim the coveted title a lot of friends my age never got to have because of HIV. HIV doesn’t even play a part in my gogo-land! I am like any other gogo – loving and caring for my muzukuru, only thousands of miles away. I am alive and well and one day I will get to be a hands-on gogo. Mem

T he G eneration G ame – 2 5 Y ears o f P ositively U K

I immediately demanded pictures of my muzukuru (grandchild in Shona)! I got loads from the three weeks since she had been born. Amazingly she looked EXACTLY like my son, the resemblance was amazing. I cannot travel to my home Zimbabwe till around 2014/15 as I am here as a refugee. Keeping everyone in the loop can be a challenge. So I have some survival tips for staying in touch with my muzukuru…

Bridging the Miles With Technology Computers have advanced so rapidly over recent years and with this awesome technology distant family and friends can get updates almost immediately. Setting up specific times for video chats is a wonderful way for grandparents and grandchildren to talk to each other and see each other at the same time. The idea of remote grandparent can be pretty abstract for younger kids, and having a conversation face to face helps cement a distant family member in their reality. While nothing replaces a grandparent’s hug, seeing each other and talking to each other in real time is pretty awesome. Social networking allows sharing of photos and pictures; I have an album dedicated to my muzukuru’s progress on Facebook!

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HIV and Ageing

T he G eneration G ame – 2 5 Y ears o f P ositively U K

Over the last two decades, thanks to progressive improvements in drug therapy and care, HIV has been transformed from a terminal disease to a chronic long-term condition. A recent UK study shows that someone with HIV who starts treatment with a reasonable CD4 (200-350) will live almost as long as someone without HIV. A French study showed that once the CD4 count is more than 500 for more than five years the risk of dying is the same as for HIV negative people. In addition we know that new infections continue to occur in all age groups. In 2010 there were more than 6,500 new cases of HIV diagnosed and more than one in five people living with HIV in the UK are aged 50 or over. Better life expectancy and new infections in older age groups mean that UK HIV population is ageing.

So what does this mean? Firstly, if you have HIV, you should plan for a normal life expectancy. Secondly, HIV clinics are dealing less and less with problems traditionally associated with HIV (HIV and AIDS related conditions) and more with agerelated diseases such as heart and kidney disease. Finally with more people needing care, HIV services need to adapt and plan for the future.

PositivelyUK Spring 2012

Whether HIV itself speeds up ageing is unclear, but HIV and normal ageing do have similar effects on the immune system. People with HIV may develop conditions like heart disease earlier than the general population but the problem with studying other diseases in individuals with HIV is that other factors, rather than HIV itself, could explain why that condition is more common. For example, people with HIV are more likely to have bone thinning (osteopenia and osteoporosis), and more likely to suffer bone fractures BUT having a low body mass index (essentially being underweight) is also associated with bone thinning; one study showed this explained most of the bone thinning in HIV. If we then add in side effects of HIV drugs (which include bone thinning…) it can get very difficult to work out what is causing what – in most cases it will be a combination of factors. Another condition more common in HIV is neurocognitive impairment (NCI), which includes a range of conditions from minor, unnoticeable memory problems (common) through to dementia (uncommon). The problem here

Dr Laura Wa

ters

is lots of things can cause NCI: alcohol, depression, hepatitis C, drug use (prescribed and recreational)… and all of these are more common in people with HIV than those without. So would earlier treatment of HIV help? Having ever had a very low CD4 count is a strong risk factor for some conditions, such as NCI and kidney disease. Starting HIV treatment earlier might be beneficial but must be balanced by drug side effects; many studies have shown that particular drugs (eg tenofovir and some protease inhibitors) may increase the risk of kidney problems. Whether HIV treatment is good or bad for heart disease risk is uncertain. The 2008 British HIV Association (BHIVA) guidelines recommended starting HIV treatment if patients at high risk of heart disease but the new draft guidelines do not (due to lack of evidence). Also there is still debate about how much increased heart disease seen in HIV is due to HIV drugs (Abacavir, Lopinavir/Ritonavir and Fosamprenavir/Ritonavir have all been associated with a higher risk in some studies but not others). Regardless, stopping smoking, controlling high blood pressure and treating high cholesterol (maybe earlier that in people without HIV) are more important than which HIV drugs to start and when. So, with so called ‘non-HIV’ related conditions forming an increasing part of HIV care there are some key issues facing HIV services:

Should we be screening for these conditions? Who should be looking after these conditions?

Screening for conditions such as bone disease has been addressed by the recently published BHIVA monitoring guidelines which recommend scans to look for bone thinning in all patients over 50 with a higher risk of bone disease and men and women aged over 70 and 65, respectively. There has been a LOT of research looking at various diseases and new ways of measuring them in people with HIV and guidelines will invariably change as new evidence emerges. Some areas of screening are controversial, for example screening people for early signs of dementia when there are few treatments available – here careful research design and consultation with patients is very important. What is crucial is to ensure HIV positive people access the general NHS screening services such as bowel cancer screening (currently every two years 60-69 year olds) and breast cancer screening (every three years for women aged 50 and over). There is a lot of discussion about how best to provide general HIV care and who should do it. Traditionally HIV care has been provided by HIV specialists with relatively little GP involvement compared to other chronic diseases. The outcome of planned NHS reforms remains uncertain but there is pressure on all specialist services, including HIV, to move towards more community/GP-based care. The HIV service in Brighton has been particularly successful in promoting “locally enhanced services” where interested GPs get additional funding to provide extra monitoring of patients with HIV; in return those GPs attend regular education and training to keep up to date. There are similar services across the UK and most clinics now have targets for GP communication. Many aspects of health (such as high blood pressure) are best managed by GPs; this is why clinics encourage HIV positive patients to tell their GP about their diagnosis. Positively UK wrote a detailed report on GPs and HIV highlighting that many patients still have concerns about confidentiality and lack of confidence in their GPs. This is where stronger links with General Practice can help; suggestions include annual visits to the HIV clinic with other visits and tests being done by GPs. However, HIV remains a specialist condition; new side effects continue to emerge and there is a risk of resistance to drugs if treatment is not carefully monitored. Interactions between HIV drugs and other medications are very important and can result in side effects or reductions in HIV drug effectiveness. There are many, many potential interactions including cholesterollowering drugs, indigestion treatments and steroid inhalers – two way communication between HIV clinics and other services as well as patient education are essential to minimise these risks. Ultimately there is a real lack of evidence to guide us at the moment and studies to investigate the best models of HIV care are planned. All long-term conditions are different and a model of care that is ideal for diabetes, for example, may not work so well for others. Any changes to the way care

is provided must not impair the quality or safety of services, must at least maintain (or improve) patient satisfaction and should be as cost-effective as possible – any savings made by improving efficiency could be used to other parts of HIV services. Another aspect is the involvement of other specialists. Increasingly HIV doctors are developing their own specialist interests and, conversely, specialists in other areas may have a particular interest in HIV. Several HIV clinics across the UK run ‘combined clinics’ where specialists in HIV and another disease area work together; examples include kidney, liver and chest clinics. There is variation across the UK for many reasons including the number of HIV infected patients accessing the service, the specific interests of individual doctors and nurses and whether or not there is funding available. Ideally these types of clinic need to show that they result in measureable improvements in health to be warranted – it may be hard to argue that patients need to be seen in “expensive” specialist clinics if GPs can offer the same. There is definitely more focus on general medical problems and their interaction with HIV at conferences and education events for HIV doctors, nurses and pharmacists.

Firstly, if you have HIV, you should plan for a normal life expectancy. Secondly, HIV clinics are dealing less and less with problems traditionally associated with HIV (HIV and AIDS related conditions) and more with age-related diseases such as heart and kidney disease. In summary, HIV positive people are getting older and getting the same diseases associated with age as those without HIV. Many age-related diseases are related to “lifestyle factors” so stopping smoking, regular exercise, healthy diet and sensible alcohol consumption are all important. Ideally GPs should be informed if their patients have HIV so they can provide the correct advice and treatment and work with the HIV clinics to make sure patients get the best monitoring and care. Services are likely to change but by working closely with HIV specialists, other specialists, General Practice staff and, of course, patients we can ensure these changes are good ones. Dr Laura Waters

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What’s Happening at Positively UK ZStar Our women’s support group had a special guest with our new ambassador Zstar. The evening was led by Zee, running a very well received bead workshop, and singing an acoustic set loved by all the women. By popular demand Zee will be returning to facilitate another bead shop and engage with service users once more. A firm believer in human rights, equality and selfexpression Zee is committed our aim of providing peer led support to everyone living with HIV. Zee will be the leading artist in a fundraising event taking place later this year to mark Positively UK’s 25th anniversary. Watch this space!

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Gay Men’s Support Group

In February this year we started Gay Talk to offer support to the increasing number of gay male clients accessing our services. The group is facilitated by two peer mentors, Tomasz and Fraser. The group meets monthly on Saturdays; the idea behind the group is to provide a space where gay men living with HIV can be open about their status. Gay Talk is talking about HIV in a gay way, by positive gay men with positive gay men. Meetings are semi-structured and participants socialise, support and learn from each other. For more info contact: gaytalk@positivelyuk.org

Outreach to Prison We are completing talks with Pentonville Prison, and aim to start providing peer support within the prison shortly. We are already providing support to women in Holloway, Downview and Bronzefield Prisons. Pentonville will be the first male prison we will provide support in.

BHIVA Guidelines The British HIV Association recently consulted on the new Guidelines for Treatments of Adults with HIV. Positively UK submitted a response with our partners in the Counterpoint Policy Alliance, Positive East and the NAZ Project. We focused on specific areas of treatment as prevention, patient involvement, the contradiction between the prescription guidelines published by Specialist Commissioning and BHIVA, and issue of GPs around drug interaction. You can view the response on our website www.positivelyuk.org/consultation_responses.php

New Chief Executive Allan Anderson has been appointed Chief Executive of Positively UK. Allan joined the organisation in 2003 to develop work with the European Social Fund and lead on fundraising. ‘Positively UK is a great organisation, with hugely committed staff and volunteers. These are challenging times ahead but I’m looking forward to developing our work, retaining our peer ethos, and ensuring we provide the services that people with HIV need.’

PositivelyUK Spring 2012

New Diagnosis as a Grandparent

At the hospital an HIV advisor greeted me and explained the test. I had blood taken and was told to expect a phone call with my results by 6pm that day. I returned to my daughter’s where we sat watching the clock. At 5.30pm the phone rang and I was told I had contracted HIV. I felt like my whole world was falling apart. At the time all I knew about HIV was that it was incurable. My daughter took it badly. The things she said to me broke my heart, but I know it was because she was hurting too. I left to go home; I couldn’t take any more comments. I sat alone in my flat sobbing and nauseous. My partner called to ask about my results but I couldn’t face speaking to him. It felt like the man I loved had ruined my life. But I had to talk to someone so I called my sister. She didn’t know what to say; who would? She called my other sister who came over and I stayed with her so I wouldn’t be

alone. The following day we returned to the clinic to get my full results, my CD4 count and viral load. It was like listening to another language. I was told that when my CD4 count dropped to 350 or below I would be on medication for the rest of my life. I couldn’t believe it; I kept thinking - ‘I’m a 53 year old woman, this doesn’t happen to people my age’. The first few months living with HIV were bad. I couldn’t sleep, had no appetite and sank into depression. I kept checking the mirror to see if I looked different. It sounds stupid now, but I felt like I had the illness tattooed on my forehead.

The kindness and support I have received has helped me to want to live. I’m coming to terms with being HIV positive because of Positively UK’s help and understanding. Now I faced the decision of who else to tell. Already feeling different, I didn’t want to be treated differently too – I’d heard of the stigma around HIV. I was torn over telling my mum: at 76, how could I expect her to understand this disease? My sisters and I decided that it was best she didn’t find out. But when I visited my father’s grave I saw my mother there. Suddenly I realised that she would love and support me unconditionally no matter what. As I approached her I burst into tears, telling her there was

something she had to know. She looked at me and said, “You have HIV, don’t you?” before bursting into tears herself. I still to this day do not know how she knew. Mother’s intuition, perhaps. My Grandson’s christening arrived shortly after my diagnosis. I was torn, wanting to see this special day but afraid to face all those people. My daughter persuaded me to go to the service but I couldn’t face the party afterwards. I fell further into depression, seriously contemplating suicide. Although my family supported me they could never fully understand; only someone with HIV could know what I was going through. My sister called Positively UK and encouraged me to talk to someone who truly understood. The kindness and support I have received has helped me to want to live. I’m coming to terms with being HIV positive because of Positively UK’s help and understanding. I still have many bad days, but now there are good days too. Now I understand that this is the next chapter of my life. I am just a person living with HIV; I am not the first, and won’t be the last. But I hope that one day a cure will be found; perhaps not in my lifetime, but for the next generation. I’m lucky that my family supports me, but having HIV teaches who your real friends are. There are “friends” I haven’t heard from since I told them. You must be selective with who you confide in but real friends will support you no matter what. Do I regret telling them? No, because now I’m surrounded by people who really love and care for me, through bad times and good. I have a long way to go, but I know that there is a light at the end of the tunnel. For now, that’s enough.

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I’ll never forget the day my partner telephoned with the news. He’d just been told he was HIV positive: now I would need to be tested. I was with my daughter and six month old grandson and I burst into tears in shock. I tried to hide the tears from my daughter, not wanting her to know, but she asked why I was crying and I told her. She was hysterical. I went outside for some air and when I returned she had already made me an appointment at my local hospital. Her emotions went from shock to anger, telling me that if the test came back positive I could no longer see my grandson as she was afraid he might contract HIV. One comment she made will always stay with me: “It should be me telling you I have an STD, not the other way around…”

Cate: Any Regrets? For many years I have been part of the speakers team at my local HIV agency. I always think it is a unique learning opportunity both for those who come to listen and also for me, as the questions I am asked at the end of a talk can often reveal hidden truths and consolidate my feelings or thoughts on an aspect of, what is after all, my life! I am not often asked a question that stumps me, but here’s the one that did: “If you could change one thing, from either before or after your diagnosis, what would it be?” I was completely floored by it. It was a one wish, magic wand kind of moment. After a few moments of pin dropping silence I said something about wishing I had built a career and invested in a pension plan – neither of which I have!

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I was dissatisfied with my answer, although it was true and aspects of my life and my children’s lives may have been economically easier, the reality for me is that I suffered for many years with chronic fatigue and probably wouldn’t have had the energy for a full time career and juggling family needs as a single parent.

Perhaps, with hindsight and my one wish option, I’d have started treatments earlier - maybe that would have changed things all round for the better - but then I probably wouldn’t have journeyed as far into the world of alternative treatment and medicines, that have not only helped me to manage my condition but have also been influential in my spiritual journey and personal growth.

Positively UK Spring 2012

As I walked home after the session I tussled with all the possibilities of what I would’ve changed and wondered what the questioner was really asking – at any point in my life, if I changed just one thing, everything else would have been different. I would have a completely different history and quite possibly wouldn’t have been sitting at the front of the room with HIV being asked that question! So really what the question seemed to be asking was; Is there anything in your life that you regret? There was a flaring moment of anger when I considered this in relation to my HIV status and thought YES I regret ever having used non oxyinol 9 pessaries – as they likely predisposed me to catching HIV in the first place – but actually so much of who I am and how life has shaped me, has been as a direct influence of being HIV positive, that it’s a bit like asking me if I want to change who I am! Do I wish I’d been born somebody else! And the answer to that is, no thanks. My life has been what it is. What is more important to me is how I live it. How I learn from my experiences good and bad. Regret is futile – we make choices and choices have consequences that we and others have to live with. Hindsight is a wonderful thing and no doubt we’d all do things differently if we could see into the future.

However the uncomfortable truth is that there are things I regret: I regret being cruel to Mary Grieg when I was a child of 10; I regret not having the courage to stand up to the bully that led me to that act of meanness. I regret sleeping with Andrew Peacock and in doing so I knowingly hurt him. I regret a lie I once told Martin.

So, given that just one thing changes all others, if I could change one thing, from either before or after my diagnosis, what would it be? I would never have been cruel to Mary Grieg. Who knows how different life would be… for her and for me…

These are my regrets. The things that even years after having committed them, still cause me shame. If I could go back and change them, I would in heart beat. They were deliberate acts that caused pain to others. There is something about their intentional nature that disturbs me.

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And regret is futile because there is nothing I can do about them. Martin is dead and I have no idea where Mary and Andrew are in the world or even if they are alive. Oh to be able to say I’m sorry – not that I want forgiveness to make me feel better, rather that they should know that I didn’t forget what I did.

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What’s Happening Around the UK? BIRMINGHAM Universal Women’s Group and is on the last Friday of every month. Contact Alex on 0121 622 6471 or email alexbergman@abplus. org.uk Terrence Higgins Trust Birmingham provides support or advocacy services for women living with HIV. Contact Michaela on 0121 694 6440

Bournemouth Body Positive Dorset Women’s support group on the first Tuesday of the month. Contact 01202 297386

BRIGHTON The Sussex Beacon run a Women’s Group and provide oneto-one support in Brighton. The group is run once a month from 10:30am-3:30pm.

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Contact Paula Evenden on 01273 645698 or e-mail paula.evenden@sussexbeacon. org.uk

BRISTOL Terrence Higgins Trust multicultural women’s group. Monthly on Saturdays. Contact Bonnie on 0117 955 1000 Saturdays 11.30am-4pm

CARDIFF Terrence Higgins Trust. African women last Thursday of every month 1-4pm, women and carers group – 2nd Monday 11am-1pm, parents group. Contact on 02920 666 465

CORNWALL

I Positive run support services for all women living with HIV in Derbyshire and their families. Contact Michaela on 01246 559 431 or email micaela.swallow@ nhs.net

EAST ANGLIA PLP – Support group for HIV positive women. Contact 01502 537 985 or email info@plpea.org.uk Women Living Positively runs a monthly support group for infected and affected women. Contact Joe on 01473 692 616 for more details

East Sussex ‘Positively Social’ a group for both men and women, meets monthly; in Hastings on the first Monday and Eastbourne on the third Thursday of month.

Waverley Care – Offers a number of services providing practical and emotional support to people living with HIV in Scotland and to their partners and families. Contact 0131 661 0982 or visit www.waverleycare.org Positive Help – Practical support for people affected by HIV and AIDS.

Contact on 01872 262221

THT Scotland runs a African women’s group every Thursday 6-8pm.

Contact 01332 204 020

Hertfordshire

Blue Sky Trust runs a group every Tuesday 11am-2pm.

Herts Aid holds a HIV positive women’s support lunch monthly – the 3rd Tuesday of each month from 1pm-3pm. Contact 01920 484784 The Crescent run two support groups for specifically for women: a ladies lunch which takes place every other month and a mother’s support group known as the Fountain Group in Watford, which takes place every month. Contact 01727 842 532 www.thecrescent.org.uk

Sahir House hold a monthly mentor-led women’s peer support group.

Contact Maro on 0131 558 1425 or email fphealth@waverley care.org

GLASGOW

Contact them on 0141 332 3838 Body Positive Strathclyde women’s support group. Weekly, Friday 5-8pm. Contact 0141 332 5010

PositivelyUK Spring 2012

Contact 0261 882 2200

Newcastle

EDINBURGH ISIS – a group for women living with or affected by HIV – continues to meet every Tuesday from 1.00-3.30pm at Waverley Care, 1-3 Mansfield Place, Edinburgh EH3 6NB

Body Positive North West runs an African Women’s group on Thursday mornings.

Contact 01252 345 019 or email info@positiveaction.org.uk

LIVERPOOL

Contact on 0131 558 1122

Derbyshire Positive Support runs a women’s group on the first Wednesday of the month.

Monthly Support group for women infected or affected by HIV/AIDS

Contact 01323 649 927

Kernow Positive Support (KPS) runs a monthly women’s support group, dates and times now vary.

DerbySHIRE

HAMPSHIRE

Contact Serena on 0151 237 3989 or email info@sahir.uk.com

LUTON/ BEDFORDSHIRE Bbpositive HIV positive women’s support group. Wednesdays 4-6pm. Food and refreshments available. Visit www.bbpositive.com Psychological Support now available at CAFPH. For people living with HIV Contact CAFPH on 01582 726 063 or email: info@cafph.org

MANCHESTER George House Trust HIV positive women’s support group and African Service. Alternate Tuesdays. Contact Lynda on 0161 274 4499 Body Positive North West women’s support group. Weekly, Friday mornings. Contact 0161 8820 2202

Contact 0191 281 5200

Sheffield SHIELD run a evening session on Thursdays 12-3pm except last of month. Contact 0114 278 7916

SOUTHAMPTON Positive Action run a monthly support group for women affected by HIV. Contact 0238 022 5511 or email info@positiveaction.org.uk

STOKE ON TRENT Esprit runs a women›s group every two months. Contact Rosie 01782 201 251

SURREY Monthly Support group for women infected or affected by HIV/AIDS Contact 01252 345019 or email info@positiveaction.org.uk

SWANSEA AIDS Trust Cymru runs a women’s support group on the last Wednesday of month. Contact 01792 461 848.

west SUSSEX HIV Peer and Advocacy Service (SHIVPASS) offers: A confidential monthly support group for Women Living with HIV. One to one support for families affected with HIV. Contact: BME Community Services, Worthing, West Sussex on 01903 211033 or confidential helpline 074234 32924 or email info@bme-cs.org.uk or visit www.bme-cs.org.uk

What’s Happening Around the UK? WOLVERHAMPTON

Woking

Terrence Higgins Trust – Support for African women who’ve been diagnosed HIV positive, monthly on Thursday afternoon.

THT South runs a Women of Courage group, once a month on the last Saturday of the month from 12.30.

Contact Jane on 01902 711 818

Contact 01483 263 163

man@positivelyuk.org 020 7713 0444 or email los ll Ca . ed lud inc be can t e tha know of a group or servic Please get in touch if you

London - Positively UK’s Services Cara – Ladbroke Grove

Monthly support groups:

Weekly groups for HIV positive women. Every Thursday 11am-3pm

Call 020 7243 6147 for details

Positively UK – Islington

HIV positive women’s group every first Wednesday of the month, 4-8pm GayTalk, group for gay men, last Saturday of every month 12 – 3 pm

* African Group every third Saturday of the month 12-3pm (men welcome)

Str8 Talk – Heterosexual group for HIV positive people. Every third Wednesday, 6-9pm

Call 020 7713 0444 for details or créche booking.

The copy deadline for the next issue is 14 May 2012 Managing Editors Lucy Osman and Nina Soctt Design Intertype.co.uk Layout Lucy Osman and Gail Tandy Print Stephens & George Proof Readers Allan Anderson, Maureen Matthews, Silvia Petretti, Ben Osborn

Lighthouse – Ladbroke Grove Str8 Talk – Heterosexual group for HIV positive people. Every first Wednesday, 6-9pm

One-to-one sessions: At Positively UK, Islington and Monks Park, Brent * General support

* *

Homerton call 020 8510 7996

Newly diagnosed support

Royal Free Hospital call 020 7794 0500

Evening and daytime sessions

St Mary’s call 020 7713 0444

Pos UK – call 020 7713 0444 Monday to Friday 10am to 4pm, Thursday 10am to 8pm

Ealing Hospital – call 020 8967 5554

Call 020 7713 0444 for details

Royal London call 020 7713 0444

Monks Park – Brent

Northwick Park call 020 7713 0444

Mixed peer group for HIV positive people. Every last Thursday of the month 11am-3.30pm Call 020 7713 0444 for details

Front cover photography Photography Lucy Osman and Positively UK Archives Editorial Team Alexandra, Angelina Namiba, Bex, Cate Jacobs, Janine, Julie, Maggie, Mariella, Maureen Matthews, Mem, Mona, Silvia Petretti, Sophie Strachan, Stella, Tina. Subscriptions info@positivelyuk.org

Outreach one-to-one sessions:

Send letters to the editor and unsolicited manuscripts to Positively UK Freepost RLYJ-ULRT-CEEC 345 City Road London EC1V 1LR Or email losman@positivelyuk.org Please submit articles of no longer than 1,200 words, indicate what name you would like to use and supply photos (which can be returned to you). While we respect the individual’s point of view, we will not print anything we deem to be discriminatory.

The Positively UK magazine is a public document. We cannot guarantee confidentiality for the stories on these pages or for any assumptions that may be made. Please be aware of this when considering making a contribution. No material in this publication may be used without permission from Positively UK. Views expressed by individual contributors are not necessarily those of the editor or Positively UK. Positively UK is published by Positively UK, registered charity number 1007685.

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Support Groups:

Can’t let

my meds mess up my night. they Can

T he G eneration G ame – 2 5 Y ears o f P ositively U K

wait…

If you don’t take it, talk about it. Hot date or not, side effects shouldn’t come between you and your anti-HIV medication. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at www.yourstoryyourscript.co.uk

PositivelyUK Spring 2012

August 2009, HIV/0509/2906