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Editor’s Letter Changes…. If there’s one word that provokes deeply contradictory reactions within each of us, it’s change. On one level it strikes a fear that we’ll lose something valuable we’ll never get back. On another it heralds excitement and new opportunities. In 1948 the establishment of the NHS marked a great and significant change to healthcare in the UK. And now, in 2013, we’re witnessing the biggest change to the NHS since its foundation. There have been mixed reactions to the reforms. Bringing clinical care close to commissioning is no bad thing, but do we really want so much of it resting with GPs? Will more services delivered by private firms drive up standards or leave some communities without support? What will happen to HIV community services that don’t fit neatly into any commissioning structures – will they simply disappear? This is a changing landscape and it’s more vital than ever that we ensure a patient’s voice is guiding these changes. At Positively UK we’ve seen plenty of changes too. In 2010 we extended our work to include men and young people and, since then, we have developed, amongst other things, our pregnancy work and peer mentoring programme. We’re now looking at how we can increase our support for young women and gay men as well as how we can further tackle gender-based violence. This edition looks at change. Our very own Silvia writes a letter to HIV on the 16th anniversary of her diagnosis, reflecting on the positive and negative changes it has brought to her life. Julie considers gender equality and HIV and what needs to change for there to be equality for all. Also, Dan and Maurice share their experiences of being an HIV activist, reminding us how important involvement is, and what changes we can achieve if we work together. When considering the changes within Positively UK magazine over the years, it is clear that we have achieved so much together. We started in the late 80s as a newsletter, but as HIV services grew, so did we. Over the years, by sharing our personal stories, giving advice and providing updates about the issues that directly affect the HIV community we have provided peer support to women and men across the UK. But we must adapt again. Communication has changed; people are now mostly accessing information via the internet and talking over social networks. This, along with funding constraints, means it’s time for a change. This will be the last magazine in its current format. It’s time to take a short break and consider what we want from now on. Is there a need to continue with a magazine or just be online? How do we reach those who still do not have access to adequate support? Can a PC truly replace talking to a person face to face? These are some of the questions we need to ask ourselves. There’s a questionnaire enclosed in every copy; I hope you will take a few moments to complete and return yours to ensure you are part of the conversation. I would like to take this opportunity to thank everyone who has contributed to the newsletter and magazine over the years. This is the end of an era, and the beginning of new one. Together we can achieve so much. Here’s to the future…. Allan Anderson, Chief Executive, Positively UK
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Editor’s Letter
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In this issue... 3
A Letter to HIV on the 16th Anniversary of my Diagnosis
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Positively UK Summer 2013
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Telling Someone You Have HIV
10-11 Spotlight On... The Pregnancy Project
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Telling Your Child You Have HIV
12-13 Let’s Talk... Ageing
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Gender Matters
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Shafted?!
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Musings of an Ageing Activist
A Letter to HIV on the 16 Anniversary of my Diagnosis th
Silvia Petretti, HIV activist and Deputy CEO of Positively UK, writes a letter to HIV.
Dear HIV, Today it has been 16 years since I first learnt that I would be sharing my life with you. What a shock it was. At the time, it was difficult to imagine I would be alive today. But here we are in 2013 and it looks like we will have many more years together. It is pointless to imagine what my life would have been without you. I will never know.
Dear HIV, on this day I would like to acknowledge the gifts that came along with the misfortune of having you inside me. Confronting judgment and stigma, I had to learn to free myself. Freeing myself was the only way I could help free others, as we are all connected. HIV, you have been a magnifying lens on the important questions about the world we live in. When we think about you we need to think about power. Where there is
abundant, shared power: you reverse. Where there is scarcity of power: you thrive. It is not a surprise that you still thrive today among those who have less power; women and girls, gays, queers, blacks, people who use drugs, people who are incarcerated, transgender people, indigenous people, poor people. The ironic consequence is that, through you, I have seen a dialogue starting among oppressed and marginalised groups and factions, who would have never spoken to each other otherwise. Together we may begin to see that to truly challenge you we need to question and change the current power structures: economic, social and cultural. Dear HIV, today I want to thank you, because you obliged me to find and recognise my personal power. You made me manifest a strength I didn’t know was mine. At first, and for a long time, I felt weighed down by shame, guilt and fear. But I had to rise up to face it. This was only possible through the inspiration and endless support of my newfound HIV family. I am almost sure, without this family I would have lived a much more mediocre and confused life. If I had lived at all. Finally, dear HIV, I can say all these words, because I am still alive. And I am alive because I had the good fortune of being born in a part of the world with free access to medical services, and the medications that keep me alive. Millions of people still don’t. Thousands die: every day, and today. And the pain for the ones we have lost never dies.
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I know that, thanks to you, I had to take a very good look at myself, and the world. I had to look straight in the eyes of death and illness. Thanks to you I stopped taking my life for granted. I had to ask myself difficult questions. Recognise my fragilities, and my responsibilities. The most painful: I had to question the possibility of love and intimacy. How difficult closeness becomes, when your body is a potential threat to your loved one. I have experienced fear, rejection and judgment. And I have found limitless compassion and friendship in my new HIV family. Through you I have met people with courage, purpose and humility. I could start a long list here of women and men, gay, straight, young and old, from every continent. You know who you are. Thank you.
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Telling Someone You Have HIV Even though it becomes easier with experience and practice, telling somebody ‘I have HIV’ is hard, and can remain a source of anxiety and fear. Here are five grains of wisdom you may find helpful to prepare yourself to tell someone you have HIV:
1 Tell yourself first This may seem like a strange piece of advice, but it is very easy to be in a place of denial after an HIV diagnosis. Accepting ourselves and overcoming any feelings of shame that we may have connected to our diagnosis is an important part of being ready to tell others that we live with HIV. 2 Talk to other people living with HIV Talking to others who are in a similar situation to us is important. It helps us clarifying what we are feeling and it offers a way to communicate and share safely. 3 Know the facts The more we know about HIV, the less we have to fear. When we tell people, we may have to answer many questions, so it is important to be able to give simple but accurate information. If we cannot remember everything (who can?!) we can also point out resources which are accurate and reliable. The ibase website is up to date and easy to understand, plus they respond to emails and calls. It is also useful to find out how informed the person already is about HIV. Try and throw in casual questions, if they know very little it may be useful to prepare more. 4 We are not a threat Scientific research has shown that HIV transmission does not happen easily. Barrier methods such as condoms are extremely effective and people on HIV treatment are very unlikely to pass on the virus. This has been recognised by the
British HIV Association (BHIVA) Treatment Guidelines, which recommends that people who are unable to use condoms can start treatment to reduce the risk of transmitting HIV sexually. Perhaps explain that women with HIV, who are on treatment and have a C-section, are 99% likely to have an HIV free baby. This delivers a very clear message about how effective treatment is in preventing HIV transmission. It is shocking how few people actually know this, and the majority are incredibly surprised! 5 Tell them from a place of power Telling someone you have HIV can make us feel very vulnerable and disempowered. It is easy to feel like we’ve handed over the choice to accept us (or not) to the other person. But we can liberate ourselves. It is important to make it clear that telling is our choice, and to express it as our personal power. When we talk openly we are manifesting many positive qualities: strength, honesty, courage, caring, understanding of our health, openness towards others etc. We have to focus on the power we have. It is a good idea to practice what you are going to say, but also how you are going to stand, and how you are going to be in your body. Sit or stand with your feet hip width apart, solidly on the floor. Try to be relaxed, breathe deeply, feel strong, act strong, be strong. Being mindful about our bodies will support our feelings of power, but this can be different for each of us. Ask yourself: “how can I talk about HIV from a position of power?”
Rejection It is impossible to know for certain how a person will react. If a person rejects us we must remember that we are not the problem. Their ignorance and failure to grasp the facts about this small virus is the problem: their problem.
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Stigma thrives in silence
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Each and every time we talk openly and safely about living with HIV, even to just one person, there is a little less stigma and prejudice in the world. Unfortunately, many people are still trapped in silence.
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Telling Your Child You Have HIV Telling your child you have HIV can be a daunting prospect, but it’s important to remember that there is no formula to it and no right way to go about it. Each child will be different – some eight year olds will be old beyond their years while other 16 year olds may not be mature enough to cope with the idea. Generally though, children are often far more resilient than we give them credit for. When thinking about telling your child you have HIV there are a number of considerations that you may want to bear in mind: How are you going to go about it? Where and when are you going to tell them? Are you going to wait until they are a certain age? Whatever you decide it is a good idea to prepare yourself for whatever reaction you may get – initially there may be tears or anger, but you are also just as likely to get an understanding and accepting response. Here are ten pointers we hope you will find helpful when telling your child you have HIV:
You can start off with simple facts about viruses and explaining about how the immune system protects us against colds. 2 Choose a time and a place that you are comfortable with and make sure that you will not be rushed or disturbed. Remember, mobile phones can be a real menace! 3 Decide who you want to be around when you tell them 4 Be prepared with information and basic facts about how HIV is transmitted and how treatment works to keep you well. Be sure to tell them that with treatment, care and good support, you can live for many years. 5 Reassure them that you’re okay and you’ll ‘be here, still nagging them, for many years to come.’ It’s good to tell them when you are feeling well so that you can show them that you do everyday things like everybody else.
6 Try not to make it a big deal. You can say something along the lines of ‘I have HIV, it’s a virus that makes my immune system weak so it is harder for me to fight off infections easily like other people. So I take medication, which makes my immune system strong. HIV doesn’t stop me from doing everyday stuff, we can do lots of things together, go to the park, swim, dance, ride our bicycles...’ 7 Explain to them why it is important not to tell other people about it. Why it is not secret, just sensitive information that is best kept within the family, as some people out there may not understand. 8 Ask them if they have any questions and try to address any concerns and uncertainties they may have. It is extremely important to be armed with basic facts about HIV! Check in with them from time to time and be prepared to be asked questions out of the blue! 9 Tell them about other people in the family who know about it and encourage them to talk about it with them if they wish. Ask other mothers/friends living with HIV if you can tell your child to talk to
them if they want to. This is important because they may have things they don’t feel comfortable discussing with you. 10 Link them in with support. Organisations such as Positively UK http://www.positivelyuk. org/index.php, Body and Soul http:// bodyandsoulcharity.org/ and CHIVA http://www.chiva.org.uk/ parents/index.html can provide you with one-to-one group support and resources that will help. Parents with children who have HIV themselves can benefit from getting support from a doctor, nurse or psychologist. Your doctor will refer you and your child to the people who can support you both best.
The power of peer support Last, but by no means least, get peer support. A great way to prepare yourself to tell your children about your HIV is to talk to other parents who have told their children. They will share with you their own personal experiences of how they did it, what reactions they got, how they coped and what support they found most useful. You can then make an informed decision about how and when to tell your children.
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1 Start preparing them from an early age by giving them information in small chunks.
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Gender Matters Women’s rights have come a long way in the last 100 years, but not far enough. Julie Reynolds, who has worked within the HIV sector for over ten years, discusses how gender inequality exacerbates HIV and what needs to be done to combat this. HIV is more than a medical issue. It is a social, political and economic issue, one that highlights the fundamental problem of gender inequality around the world today. Gender divisions are ingrained within most societies. All health, social, political and economic policies, however neutral they may appear, are based on a system of gender bias and preestablished assumptions about the roles of men and women in society. In every case, the social meaning of being male or female will be the result of the history of that society, influenced by the nature of religious beliefs, political systems and social and economic status. Even if these assumptions are unacknowledged or unspoken, this is the unavoidable backdrop from which national policies are formulated. The HIV/AIDS epidemic has had a unique impact on women. HIV is more of a threat to women due to the role they hold in society, as well as their biological vulnerability to HIV infection. Generally, across the world, women have a lower political and economic status than men
The sexualisation of girls at younger ages and the ‘normalisation’ of the sex and porn industries have made it increasingly acceptable and even ‘fun’ for men to view women as objects and sexual commodities. We are constantly bombarded with unrealistic, unfavourable and unacceptable images of what it is to be a woman. This damages both genders: women can easily undervalue themselves, while men are under pressure to act out a ‘type’ of masculinity in which power and control over women is normal. This prevents
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within their community and households. In some cases, a woman’s status is so low that she is forced or encouraged into sex in return for money, gifts or status. In conjunction with this, women are more likely to become infected with HIV through unprotected intercourse than men. This is made worse by the fact that, in many countries, women are unable to negotiate condom use, either because they don’t have the support, the equipment or the power to do so.
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men and women from forming healthy, equal relationships with one another. It is no wonder then that women are more sexually vulnerable and more likely to be subjected to rape. What is more, if a woman living with HIV is raped she may fear that reporting will force disclosure, and that, as a result, sympathies and support may be given to the perpetrator. On top of this, when HIV is diagnosed in pregnancy, the woman is more likely to be blamed, even if the partner may have been the source of infection. It is well documented that pregnancy can be the trigger for domestic violence and, in families where it already exists, there can be an escalation. Domestic violence reaches across all socioeconomic backgrounds: rich, poor, rural and urban. Women may be stuck because they are vulnerable, as they do not have the finances or the support to leave. For women living with HIV this may be compounded by the fear of discrimination, disclosure or even criminalisation.
When there are scarce recourses it is often women who must take on the burden of care for the sick and the poor. Parental illness or lack of family funds will also typically impact more on the education of girls than boys. HIV casts a spotlight on the weakness in health and education services. Such deficiencies may affect women disproportionately due to literacy levels and so, yet again, women and girls remain more vulnerable as they miss out on information. While this inequality exists effective HIV intervention programmes will struggle to succeed. It is imperative to ensure access to women-specific, culturally sensitive information and groups tailored to female needs, so that women and girls can more easily participate in decision making about their own lives. This can only be done in an atmosphere of safety, respect and acceptance, where peers can communicate and develop confidence,
ideas and ultimately a stronger voice. In order for real change to be successful and sustained the inclusion of women at all levels in society, as well as in the planning, delivery and evaluation of services, must be secured. Otherwise any change will be short-lived. HIV forces us to look at the social, political and economic inequalities that exist between men and women. In order to improve women’s chances of protecting themselves from HIV infection and cope with the consequence of HIV, fundamental power relationships must be challenged. A critical component of changing these structural inequalities requires a broad policy based shift of government organisations. Whilst many organisations have taken on the language of mainstreaming gender issues, the lack of training and support, poor supervision of the implementation and a general lack political or organisational willingness to implement seem to be lacking. The toll that the power imbalance between the sexes takes must be debated more openly and widely. We still live in a world where one in three women will experience violence at some point in their lives. Women hold only 19% of the world’s parliamentary seats and only about 24% of the people in mainstream broadcast and print news are female. Even now, in 2013, women perform 66% of the world’s work, produce 50% of the world’s food,
earn 10% of world’s income and own 1% of the world’s property. Globally, HIV/AIDS is the leading cause of death among women of reproductive age. The perpetuation of institutionalised gender inequality will continue if this is the skeleton on which we hang the flesh. Major reconstruction is needed. Gender stereotyping, gender typecasting and systematic gender bias has to stop. Women have internalised a whole history of inequality and this has led them to believe that it is their own competence that is in question rather than the system. Implicit biases cannot be overcome until they are realised, understood and challenged. The first step is awareness, but there is a long way to go after that. The truth is, bringing about reform and change to such embedded, systematic and structural inequalities will require decades of struggle and perseverance. Over the centuries, ordinary women have fought to participate equally with men in society. We have been the bearers of social change and the makers of history, demanding the right to vote, to hold public office, to health and social care, to equal pay, to equal say and to the control over our own sexual and reproductive rights. We need to continue to stand together in solidarity, with a purpose and energy that will shake the world into a new consciousness: that of equality of rights for all.
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In society, women are particularly affected by the cultural constraints on decision-making. In many places in the world, access to information about contraceptives and reproductive choices, such as treatments for pregnant women living with HIV, are in the hands of men. This is also a problem with HIV treatments, which often aim to prevent vertical transmission, rather than find the best treatment for the woman and the best way to protect the woman from developing resistance to HIV drugs.
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Shafted?! Dan Glass is an HIV activist and performance artist. His group Shafted?! have created a performance which sets out to explode stigma, shatter isolation and demand social change – and have a great time doing it. He talks to Nina Scott about HIV activism and the ethos behind Shafted?! Now, more than ever, we need HIV activism. The main reason why Shafted?! has come about is because of the massive cuts to HIV services: 20% in London, even though the number of Londoners who have contracted HIV has more than doubled since 2001. The compounding effects of the cuts and the higher rates of transmission have caused people to call this time “The Second Silence” (the first silence being the 80s). HIV is still an epidemic and we need immediate action because politicians are just not responding fast enough.
Shafted?! is deeply inspired by AIDS coalition to unleash power (ACT UP). ACT UP have just celebrated their 25th Anniversary and Shafted?!
aims to stand on the shoulders of our activist ancestors. As seen in the recent documentaries How to Survive a Plague and We Were Here, we can learn so much from ACT UP and their strategy for activism. They had people on the inside (researchers, scientists and people in drug companies) as well as people on the outside (on the streets, organising actions and occupations). The critical thing was that they were in dialogue, and this reciprocal understanding meant that the protests were in line with the policies.
I have recently been to South Africa on a training programme with HIV activists and educators. I was inspired by the thinking behind the Black Consciousness Movement (BCM) and found it particularly relevant to HIV activism. Before we can expect to receive physical liberation from others, we have to have psychological liberation. Others may want you to dehumanise yourself and think of yourself as inferior (that’s what colonialism and white supremacy was based on: dehumanising whole sections of society). But we are only victims if we choose to be. If we accept, embrace and believe in ourselves, others will follow.
Shafted?! is participatory, celebratory and very raucous. The powers that be want us to be depressed, but we’re not going to let them do that! So it’s a very fun show, we have silly props, including a giant penis (currently in my mate’s garage; his mum’s like, “when are you going to get rid of that, son?”). We’ve just got a van to take it on tour (as we feel it would be impractical to put it on the train...). In the show the giant penis is called “The HIV ‘victim’ Cannonball” and I catapult out of it in a cloud of glitter. The idea is that, through silliness, fun
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Dan Glass
PositivelyUK Summer 2013
and open discussion about HIV, we are not perpetuating a victim mentality – because we are not victims. This sums up our celebratory stance and the idea that you can choose to internalise prejudice and stigma, or you can confront it and accept that it is society’s problem, not yours. It’s being outspoken and saying: “It’s your fear, not mine, let’s talk about it”.
Our slogan is “building the HIV army”. Initially I was like, “Who are you trying to fool, Dan? This ‘army’ is just you and a few of your friends!” But now it is really beautiful to see what is happening. Over the next year we have shows, actions, trainings and even a dance troupe. There has been a great response, all in the name of outspoken grassroots confrontation.
The name Shafted?! aims to ask the question: “Are you shafted?!” We’re shafted, but only if we don’t fight back! The euphemism also highlights our want to subvert the HIV stereotype of ill, pasty-faced people who are made to feel desexualised.
Lots of people want to get involved in Shafted?! I’ve got emails from young people, grannies, people who are gay, straight, black, white, who want to tell their stories and discuss the reality of HIV in 2013. It’s brilliant and shows that HIV can and does affect everyone.
Originally the show was just me telling my story, but that wasn’t representative enough. Now, each show is tailored around different people’s stories, so it becomes a cathartic and beautiful way to celebrate sharing, uniqueness and diversity. It also aims to acknowledge the people who have taken part in each individual’s journey. For me, living with HIV is totally interdependent on my support system, so it is an appreciation of that.
Now all of my mates and family are so informed, and HIV activists in their own right. They have become inspired and empowered by me talking about it so openly. It is now a collaborative journey that we are going through together
The show is spilt into 5 chapters with a performance between each chapter. It deals with issues of diagnosis, disclosing, health, intimacy, sexual relationships and sexuality. One chapter is a cheesy 70s HIV quiz show, where smiling, sequined game show hosts ask the audience questions about HIV. This puts to bed any false, negative presumptions they may have.
We can take a lot from HIV activism in the 80s. They didn’t take things lying down. Every day there was demonstrations and occupations and there was an overriding spirit of resistance and hope. The nurses in my clinic in Glasgow have told me stories about the upmost prejudice and stigma from those times... it was tough, but people just fought and fought, and that makes me have faith in humanity. When
everybody is giving up on you, you’re not going to give up yourself. When power is failing you, you won’t fail yourself. History proves that protest works. Where would we be without the civil rights movement or the suffragettes? These people separated morality from the law and humanised themselves. If we really want an HIV and AIDS free world, we’re going to have to take the necessary action. We need to define success, not by how many petitions are being signed but by whether the right services are being provided and people not dying. We need to be talking about this on every street corner. We need to be building spaces for dialogue, thinking and support. Get involved in Shafted!? – we need people with spaces to put on the show in their own communities, we need those with experience in protest, performance, writing, journalism; and donations are always welcome! Look at our website at www.theglasishalffull.co.uk or email me at shafted@theglassishalffull.com for more information of tour dates and how to be a part of the HIV Army.
Shafted!? is a celebration of life. It is a celebration of where we’ve got to because of people fighting till the bitter end, patting ourselves on the back and then saying: “right, we still have more to do!” Nina Scott
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Part of the Shafted?! mentality is thinking: “what are the positives of being HIV positive?” For example, you may become closer to your friends and family and you may gain a deeper perspective on life and death. Importantly, once you are marginalised in society, you are able to gain a more critical understanding of the system, of power. The show celebrates appreciating life and creating change – whether it be through music, dance or cycling backwards!
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Spotlight On... The Pregnancy Project Angelina Namiba, Project Manager for Positively UK, talks about our Pregnancy Project and how it benefits both mentors and mentees. From Pregnancy to Baby and Beyond is a peer support project for women and men living with HIV. We provide information, education and emotional and practical support throughout pre-conception planning, antenatal care and post-natal care.
The Pregnancy project provides one to one support sessions, as well as a series of national pregnancy journey workshops covering all aspects of preconception, pregnancy, delivery, and aftercare.
The original one year pilot project, funded by MAC AIDS FUND (http://www.macaidsfund.org/), aimed to meet the needs of three specific groups:
This aims to enable women and men to deal with issues such as:
* women diagnosed with HIV during antenatal care *
pregnant women who have already been diagnosed with HIV
* women living with HIV who are considering pregnancy. Following the success of the pilot, the project has now received further funding from the Big Lottery Fund and Rayne Foundation. Through this we have been able to widen our remit to include the support of:
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men living with HIV who are planning to start families sero-different partners of people living with HIV who are planning to start families
In line with Positively UK’s ethos of peer support, the project is unique in that it continues to be designed, developed and delivered by women living with HIV. Also on our team is an advisory group of healthcare professionals from across many of London’s centres of excellence. Services are provided by myself and Mentor Mothers, women living with HIV who were either diagnosed antenatally or who have had children after a diagnosis. These women volunteer their time to support others and receive six days of extensive training in order to prepare them for their role.
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The Mentor Mothers training covers:
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* * * * * *
discussing and understanding their role as a peer mentor working within the policies of Positively UK HIV awareness and treatment setting SMART goals administration and management of one to one sessions two days training dedicated to HIV and pregnancy.
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coping with diagnosis during pregnancy
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safer conception, especially between sero-different couples
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strategies to prevent vertical and onward transmission to partners
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starting treatment
of what happened before, I am now very anxious about what choices I have regarding the delivery. I would very much like to have a Caesarean section just so I know I have done everything possible to prevent anything from going wrong. Another issue is the fact that I have been advised not to breastfeed this baby. Since I breastfed my two older children this is new to me and I am worried my baby will be okay with formula feed. Also, I am no longer with the child’s father and I’m not working at the moment, so financially things are very difficult. I don’t even know how I am going to buy all the things the baby needs! A: Has the Pregnancy Project benefitted you at all? S: The project has been beneficial to my in three ways: the information, guidance and practical support it has given me. I have appreciated these things so much. A: Can you please elaborate a bit further?
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disclosure understanding the importance of adherence and engaging with healthcare even after delivery
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the importance of testing the baby and other siblings where relevant
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strategies to manage queries around not breastfeeding etc
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where possible, the project also provides practical support in terms of good quality second hand baby items as and when they are kindly donated.
generally improving access and experience of health services
Sarah, who is due in June, was referred to The Pregnancy Project when she was 25 weeks pregnant. She has two older children but sadly her third child passed away 12 hours after he was delivered. Sarah is, therefore, understandably very anxious about her current pregnancy. Angelina: When were you diagnosed? Sarah: I was diagnosed in 2002. By then, I had already had two children both of whom I breastfed. A: When you found out you were pregnant with this baby what was in your mind? S: Many things went through my mind, but the main worry for me was whether my baby was going to be infected. I also worried about my own health during the pregnancy. Because
S: Well, I have been given valuable information about the progress that has been achieved in terms of preventing transmission to babies here in the UK. I now know that, if I am taking my medication and I have an undetectable viral load by the time I deliver, I can have a vaginal delivery. It has also been helpful for me to know that, even though this is the case, if I am still uncomfortable about advice I am being offered, I should communicate with my doctor. Although I feel strongly about having a C-section, I haven’t said this to my doctor yet, but I now feel confident enough to go and discuss my wishes with my doctor and midwife. Going through a birth plan with you was very helpful too. It helped me to understand what my midwife was talking about and enabled me to prepare questions in advance of my appointment. Having all this information was very reassuring. I also really appreciate the baby items you have given me such as a buggy, a car seat and baby clothes. I would have struggled to buy these and I am so grateful to the people who have donated these things to me. Finally, I am really looking forward to having a Mentor Mother as, at the moment, I am very isolated. I haven’t told many people about my HIV status and it will be good to be able to talk to another mother who has been through the same process as I have. It will be great to have someone I can share what I am going through, and who will support me throughout my pregnancy and after the baby is born. For more information contact: Angelina Namiba on 020 7713 0444 email anamiba@positivelyuk or visit www.positivelyuk.org/ pregnancy_and_beyond.php
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babies e h t f o e n nd o Angelina a cessed c a o h w r e oth born to a m ject. o r p t o l i p the
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Let’s Talk … Ageing Someone once said “Old age isn’t so bad when you consider the alternative”, and recent research from the University of Warwick has found that we actually feel more satisfied the older we get. Nevertheless, it’s no secret that getting older has its challenges! Betty Davis couldn’t have put it better when she said “Old age is no place for sissies”. Everyone experiences an increase in health problems as they get older, these can be with your kidneys (renal), mobility and mental health. It has been shown that people living with HIV can experience these problems up to 10 years earlier than the general population. So, with this in mind, we’ve picked a few areas and a few changes you can take to manage your health.
HIV First and foremost it is vital that you manage your HIV. As you age, your immune system becomes less effective at protecting your body from infection and disease. This can affect many long-term conditions, but particularly HIV, as the HIV virus directly attacks the immune system. A weak immune system means you are more likely to suffer from infections and illness; this is one of the reasons why the NHS gives free flu vaccines to people with long-term conditions and anyone over 65. The first line of defence for ageing is your HIV treatments. Good adherence to your medications, and regular check-ups with your doctor, will make sure your immune system is working well, fighting off germs and keeping you healthy. It’s important to have regular discussions with your clinical support tream regarding ageing, changing situations and the potential side effects of your medication
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Heart disease is one of the most common health conditions, with 2.7 million people in the UK living with it in some form. Anyone over 50 is at a greater risk and factors such as family history, high cholesterol, high blood pressure and diabetes can make you more susceptible. HIV is also a risk factor. No one is quite sure whether this is due to long-term exposure to the virus, exposure to medications or a combination of these and the risk factors listed above. While you can’t control things such as your age and family history, there are things you can control. These include: not smoking, weight loss, getting more exercise and improving your diet. Symptoms of heart disease can be:
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chest pain, particularly when working your heart such as running for a bus or climbing stairs
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pain in your back, shoulders, arms, throat or jaw
Positively UK Summer 2013
If you’re concerned that you have any of these symptoms talk to your GP or someone at your HIV clinic.
Osteoporosis Your bones are living and growing. The strength, or density, of your bones is determined by the amount of calcium and other minerals they contain. Over time, the cells that build new bone cannot work as quickly as the cells that break down old bone. This can lead to osteoporosis and an increased risk of broken bones. Women have about a third less bone mass than men, so are more at risk of osteoporosis, particularly following the menopause. Your bones are at their strongest in your mid-20s but they will begin to get weaker by your mid-30s. We should all be thinking about maintaining and improving our bone health from an early age. Don’t think ageing only starts at 50! When you have HIV your risk of some bone disorders increases and research suggests that up to one-third of people with HIV may have early-stage bone loss. As with heart disease, it’s unclear why people living with HIV are more at risk. Some of the reasons could be the impact of HIV or treatments, an inability to absorb enough calcium, lifestyle factors, and a combination of all of these. Unfortunately osteoporosis has no symptoms and usually goes undetected until a relatively minor incident causes a broken bone in your wrist or hip. However, you can have a bone density scan, called a DEXA (Dual-energy Xray) scan, if you are concerned. Your doctor can help assess your risk.
Depression Depression is common in people with HIV. Living with HIV can take a toll on your mental health and sense of well-being due to feelings of social isolation, stigma, health concerns and financial difficulties. Depression is not just feeling low; feelings can include poor concentration, low motivation, inability to sleep, loss of energy, feelings of low self-worth and suicidal thoughts. People find different ways of coping, depending on the severity of symptoms. For some, the periods are short; while for others counselling or medical support will be helpful. If you feel depressed talk to your doctor or support worker.
Steps to manage your health Stop smoking: It’s not easy, but there is plenty of help out there. You can join a support group and there are nicotine patches available on prescription. You can also join an online community (http://smokefree.nhs.uk/ ) which can be a source of information and motivation.
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Exercise regularly: This can be anything from swimming, running, riding your back or even just walking. Half an hour of exercise a day will give you a stronger heart, but can also help manage cholesterol levels and lower blood pressure. Weight bearing exercise, such as lifting heavy objects, can also help strengthen bones. Eat a healthier diet: You should aim to eat between 5-7 portions of fruit and veg per day. Starchy foods such as bread and potatoes are good too as they are low in sugar, salt and fat, particularly saturated fat. Eating food that is high in protein and calcium such as nuts, milk, and eggs is also vital. Visit http:// www.foodchain.org.uk/ for more advice. Lose some weight: There are lots of diets out there. However the only way to lose weight is to burn more calories than you consume. So put down those crisps, reach for a banana instead and do some exercise! Cut down on alcohol: No more binge drinking. Stick to the recommended intake, which is around 3 units per day. That’s the equivalent of a pint or two of lager, a couple of small glasses of wine (or one large one!) or a few single gin and tonics. Just because we’re getting older doesn’t mean we shouldn’t enjoy ourselves it’s just important to drink sensibly.
Meet up with friends: Making friends can become harder the older we get, but studies suggest that the most important ways to support well-being is by talking with others, learning and giving something back. So why not join a group near you, whether it be an HIV support group or a group that sparks a particular interest. Spend some time with your friends and family, enjoy their company and remember the words of the writer George Bernard Shaw wrote: “You don’t stop laughing when you grow old, you grow old when you stop laughing.” If you would like to talk more about any of these topics talk to:
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Your GP, who can assess your risk for conditions such as heart disease and osteoporosis and support you in managing depression
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A peer support worker or mentor at Positively UK on 020 7713 0444
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A local HIV support agency near you to talk to someone on a one-to-one basis, find out about counselling and local support groups http://www.aidsmap.com/e-atlas/uk/
Article funded by AbbVie with no editorial control or input
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Musings of an Ageing Activist Maurice Greenham talks about his experience as an HIV activist and encourages others to get involved.
In 1984 I was diagnosed as being HIV positive. Like many people I experienced a mixed bag of intense emotions including anxiety, fear and anger. However, it wasn’t until I developed AIDS in 1994 and was told I had six months to live that I became politically engaged. Until that point, you might say I was more of an interested observer, keeping abreast of treatment developments and social issues by reading Body Positive and other HIV publications, but hardly an HIV activist. I really wanted to raise HIV awareness in the local community and generate funds for HIV charities so I co-founded MUSICAID with a small group of dedicated friends. With the backing of a local choir we staged concerts for World AIDS Day from 1995 to 1999. I will never forget the look on the parish priest’s face when I announced one of these concerts to the congregation of the church where I was organist. This was the first time I had openly revealed my status. Father Brian later informed me that he thought he was going to have a heart-attack, knowing just how homophobic and HIV prejudiced some of his flock were. But luckily my announcement had the opposite effect! The people of Holy Trinity Burslem became and continue to be a great source of empowerment and support.
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Since then I have also been an active part of the National AIDS Trust (NAT) activist initiatives, and enjoyed being a member of their Press Gang. I also contributed to the NAT Activist group, which offers assistance with suggestions and templates that make the job of writing to Ministers, MPs and local Counsellors less stressful.
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Perhaps the most memorable event was in September 2009 when I took on the Daily Mail over its appalling coverage about a baby who may have been HIV positive being placed with foster parents without its status being revealed to them. The piece was riddled with inaccurate information about HIV and hysterical statements that harked back to the early 80s with its scary stories about a mysterious deadly disease called AIDS. My letter to the Press Complaints Commission resulted in a response from the Editor of the Mail that I found unacceptable. The subsequent campaign backed by the NAT and the Children’s HIV Association resulted in an apology in a printed edition of the Mail… but more significantly it appeared on their website directly beneath the article in question. Furthermore, the Editor promised to delete the out of date files about HIV and AIDS on the Mail’s Database to avoid future repetitions of inaccurate reporting. It just goes to show that activism can make a difference!
PositivelyUK Summer 2013
Maurice
As my confidence as an HIV activist grew I began speaking at conferences on HIV and aging and I write for a number of publications including Positive Lives, Baseline and the website Positive Pulse. Last year I took part in a Photographic Exhibition ‘Stand Tall Get Snapped: 30 People Living with HIV’ … a project aimed at challenging HIV stigma and discrimination. The photos where then published in Positively UK Magazine’s “The Political Issue”. The popularity of the project sparked a press release for World AIDS Day that also resulted in requests for live and recorded interviews with local radio stations and an amazing amount of positive feedback. Once I began I realised that the more people I could reach the better! I haven’t achieved television coverage – yet! Nonetheless now I’m in my 70s and I feel fortunate and privileged to be able to speak out comfortably to the masses as an openly gay man living with HIV. Through publicly telling my story and engaging in HIV activism I feel I have helped make a difference and found truly inspiring encouragement and support.
Positively UK’s Services Support Groups:
Cara – Ladbroke Grove
Monthly support groups:
Weekly groups for HIV positive women. Every Thursday 11am-3pm
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Call 020 7243 6147 for details
Positively UK – Islington
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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)
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Str8 Talk – Heterosexual group for HIV positive people. Every third Wednesday, 6-9pm
Call 020 7713 0444 for details for créche booking.
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
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Outreach one-to-one sessions: 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
Call 020 7713 0444
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
Thank you
azine possible over the ag m e th e ad m s ha ho w thank everyone ver Positively UK would like to om and knowledge, our co isd w , es nc rie pe ex r ei th g r s for sharin r their leadership and ou fo f years, all our contributor af st d an rs ee nt lu vo l HIV, our editoria models for giving a face to possible. sponsors for making it all
Design Intertype.co.uk Layout Gail Tandy
Front Cover and Photography Graeme Carlow Additional Images Greta Hughson, Jesse Jameson, Steve Shapiro, HOPE not Hate, Edo Zollo, Phil and Pam’s Photostream
Positively UK Freepost RLYJ-ULRT-CEEC 345 City Road London EC1V 1LR www.positivelyuk.org info@ positivelyuk.org Reg Charity No: 1007685
Proof Readers Allan Anderson, Silvia Petretti, Ben Osborn
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Managing Editor Nina Scott
Editorial Team Positively UK magazine would like to thank. Allan Anderson, Robert Hayes, Silvia Petretti, Julie Reynolds, Dan Glass, Angelina Namiba and Maurice Greenham
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I WISH I’D
TOLD HIM
THE WHOLE STORY...
Have you discussed everything that you wanted to? If something is bothering you about your anti-HIV medication, your doctor or nurse can help you deal with it. Find out more at www.yourstoryyourscript.co.uk
Don’t leave today with a weight on your mind YOUR YOUR STORY, STORY,YOUR YOUR SCRIPT SCRIPT April 2012, VIUK12NP067