Telling your child you have HIV

Guest blog  by Angelina Namiba

Angelina Namiba,
Posirtively UK project manager ‘From Pregnancy to Baby and Beyond’

Telling someone you have HIV can be hard. Telling someone close to you can be even harder. Telling your child you have HIV can be daunting.

There is no right or wrong way or formula to do it. Each child in each family will be different. Some children are old beyond their years at an age as early as 8 and others at 16 are not mature enough to cope with the news that their parent is living with HIV. Generally though, many children are much more resilient than we give them credit for.

When you do decide to tell your child/ren that you have HIV, there are a number of considerations you need to bear in mind. How are you going to do it, where are you going to tell them, when and at what age and why you are doing it.  It is also really important is to be prepared for whatever reaction you will get. Be it a not so good one, you may get a tearful child or one who refuses to talk  to you for days! However, you are also just as likely to get a very positive reaction, one that we all wish for when we tell understanding and acceptance.

 

 

 

Here I touch on ten top tips for telling your child you have HIV

1. Start preparing them from an early age by giving them information in small chunks. You can start off with simple information about viruses and how the immune system protects us against colds.
2. Choose a time and place that you are comfortable with. 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, how treatment works to keep you well and that with treatment care and good support, you can live for many years.
5. Reassure them that you are well and that you’ll ‘be here still nagging them for many years to come.’ It’s good to tell them when you are well and when they can see that you do everyday things like everybody else.
6. 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 to ask you any questions they may have. Talk about any concerns, uncertainties or clarifications 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. Ask other mothers/friends living with HIV if you can tell your child to talk to them should they have questions. This is important because even though you tell your child about HIV and they accept it, they may have lots of questions or 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 around telling children about HIV. Parents with children who themselves have HIV can also benefit with getting support from a doctor, nurse or psychologist. Your doctor will either support you or refer you on to members of their team who are best placed to support you.

The power of peer support.

Last but by no means least, get peer support. A great way to prepare yourself to tell your child/ren 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 child/ren.

Telling somebody: ‘I have HIV’

Telling somebody ‘I have HIV’ is hard. It becomes a little bit easier with practice and experience. But it never ends to produce a feeling of vulnerability and fear.

Here are my 5 grains of wisdom on talking about HIV:

1)Tell yourself first

This may seem a strange piece of advice. But it is easy to stay in a place of denial and self –rejection after HIV diagnosis. Reaching a place of acceptance and overcoming any feelings of shame we may have connected to our diagnosis, is an important process in being ready to tell others that we live with HIV.

2)Talk to other people living with HIV

Talking to others in a similar situation is important: it helps us clarifying what we are feeling. It offers an opportunity to develop a way of communicating about what we are going through safely. It is crucial to have a support network that can act as a safety net, if we have negative experiences after telling some body. Moreover by talking to others with HIV we can learn from their experiences and strategies of discussing HIV.

3) Know the facts

The more we know about HIV, the less we have to fear. In the process of telling others it is important that we are able to explain basic things about HIV. 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. I always recommend the Ibase website because it is up to date and easy to understand, plus they respond to your questions if you email or call them. It is also useful to find out how much the person we want to tell knows about the subject. Try and throw in casual questions. If they are very naive about the subject it may be useful to prepare more.

4) We are not a threat

Scientific research has shown that HIV transmission doesn’t happen easily. Barrier methods such as condoms and female condoms are extremely effective in preventing HIV transmission. Moreover people on HIV treatment are very unlikely to pass the virus, so much so that the British HIV Association Treatment Guidelines recommends that people who are unable to always use barrier methods and are concerned about transmission can start treatment, to reduce risks of transmitting HIV sexually. I also often explain that women with HIV who have access to good medical treatment and ARVs have 99% chances of having an HIV free baby. This delivers a very clear message of how effective treatment is in preventing HIV transmission. I am still so shocked how few people in the ‘wider world’ do know this. The majority are incredibly surprised when you tell them. Dah!

5)Tell from a place of power

One of the difficult things of telling is that it makes us feel very vulnerable. It is easy to feel like you have handed over all the power to make a choice to ‘accept you or not’, to the other person. Telling can become a way of feeling extremely disempowered. But we can reverse this through our awareness. We can liberate ourselves. It is important to make the conscious decision that telling is ‘our choice’. By making this choice we create an opportunity for our personal power to be expressed. When we take the step to talk openly about the difficult topic of being HIV positive ( even to just one person) 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. I always recommend to practice, what we are going to say. But also to practice how we are going to stand. How we are going to be in our body. We need to be sitting or standing well grounded , with our feet hip width apart, solidly on the floor. Keep ourselves relaxed. We have to remember to breathe deeply and slowly, our spine erect. Feel strong, act strong, be strong. I really believe that being mindful about our body will support our feeling of power and our ability to talk about HIV confidently and safely. But this can be different for each and everyone of us. Ask yourself how can I talk about HIV from a place of power?

Rejection

It is impossible to know 100% how a person will react to us. If people react negatively and reject us: we must remember we are not the problem, it is not our fault. Their ignorance, and failure to grasp the facts and the truth about this small virus is the problem: their problem.

Nevertheless, rejection is a very painful experience, raw, and hurtful. For many of us it is not possible to go trough it, especially if we are emotionally or otherwise dependent on the person we would like to tell we have HIV. Having been at the forefront of the battle to recognise the links between Gender Based Violence and HIV, I know that for some of us, revealing our HIV status is just dangerous.

Stigma thrives in silence

The fact that many people are still trapped in silence, makes it even more compelling, for those of us who can, that we have a duty to talk about HIV.

I strongly believe that each and every time we talk openly and safely about living with HIV, event to just one person, there is a little less stigma and prejudice in the world.

Silence is Volence

Receiving an HIV diagnosis is often experienced in terms of violence. Stigma is violence: and it is often the first symptom of HIV, manifesting as shame, guilt and blame. Those feelings are experienced today, here in the UK. Many of the newly diagnosed women I meet tell me: “I would rather have cancer than HIV”. I find it really saddening, especially when HIV treatment is in most cases more successful and easier to take than cancer treatment. And I do really hate making comparison between experiences of illnesses.

For many women, in this country, and around the world, the link between violence and HIV is extremely direct. Women in violent relationships are much more likely to become HIV positive:

1)When a relationship is violent and sex is coerced women cannot negotiate safer sex.

2) Forced sex is more likely to cause tears and injuries to the vagina creating routes for HIV to get
into the body.

3) Men who are violent have often other high risk behaviours: multiple sex partners and drugs and alcohol use.

Inequality is also a form of violence. It is not surprising that out of 4.5 million young people (16 to 24) with HIV 3 millions are young women, mainly concentrated in Subsaharan Africa. The links between poverty, violence against women and girls, and HIV are easily visible.

Violence does not stop when one gets an HIV diagnosis. Revealing we have HIV can start a violent response. Tragically this is especially true for those of us who are diagnosed during pregnancy. An HIV diagnosis can also make violence escalate. As women living with HIV escaping an abusive and violent relationship is very difficult. The fear of our HIV status being made public is paralysing, alongside the fear of not finding another partner who will accept us and love us, as we have HIV. The shame linked to being at the receiving end of violence compounds the shame of having HIV: silencing many of us. We hesitate to go to the police, as many have faced ignorance around those issues in many institutions including prosecution services. The fact that HIV transmission is often criminalised also stops us from accessing support. What if we are accused of giving HIV to our partners? How will we prove our innocence? What will happen to our children if our status will be revealed? Will they be assumed to be HIV positive? Will they be taken away from us? Will they be bullied and shunned at school?

A recent study in an East London hospital revealed that 52% of women with HIV who responded to a questionnaire had experienced Intimate Partner Violence in their lifetime. A participatory study lead by women leaving with HIV in the UK, revealed the extent and the breath of the violence.

Violence is not just at the hands of our partners: institutions are violent. For example, here in the UK, we are sometimes blamed for wanting to be mothers by the healthcare workers who should be there to support us. Young women with HIV are denied contraception, even in the UK. In many
other parts of the world we get sterilised without our consent.

On the 14th of February the Sophia Forum, with Positively UK“s support, will hold an event at the House of Lords, synchronised with the One Billion Rising mobilisation, to launch the report on a feasibility study on the links between HIV and Gender Based Violence in the UK. It will convene: women living with HIV, policy makers, healthcare professionals and other service providers. We will ask for our realities to be acknowledged and for our basic human rights to be upheld. We are asking for action to end the violence against us.

Please take a minute to think what action you could take. We want to be heard: silence is violence, ignoring us is violence.

To read more about the issues:

Violence Against Women Living with HIV/AIDS: A Background Paper Fiona Hale and Marijo Vazquez

Visibility Voice and Vision a Strategy for Women Living with HIV in the UK

Is somebody taking notice of the links between Gender Based Violence and HIV?

Robbed of choice: forced and coerced sterilisation experiences of women living with HIV in Kenya

A Letter to HIV on the 16th Anniversary of My Diagnosis

Dear HIV,

Today is 16 years I have learnt that I share my life with you. What a shock it was. At the time, it was difficult to imagine I would be alive today. Here we are in 2013 and it looks like we will have many more years together. It is pointless to think what would my life had been without you.I will never know.

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 difficult questions to myself. Recognise my fragilities, and my responsibilities. What was 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.

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. Which is the only way of freeing 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, gay, queer, blacks, people who use drugs, people who are incarcerated, transgender people, indigenous people, poor people. The ironic consequence is that through you, HIV, 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, t oday 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 it was mine. Firstly ,for a long time, I felt weighed down by shame guilt and fear, but had to rise up to it. This was only possible through the inspiration and endless support of my new found 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 those 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.

The pain for the ones we have lost: never dies.

Coming out HIV positive posing for Marc Quinn cast of my body made with wax and HIV medications, 2004

2009 during photo shoot of Putting Patient First Campaign, with Angelina Namiba, part of the HIV family, and amazing activist

Speaking at the Human Human Rights Rally at the International AIDS Conference in Vienna 2010

S

2011 Speaking at United Nation  High Level Meeting on HIV and AIDS,  representing the Global Network of People Living with HIV

 

SHE goes to the European Parliament!

Brrrrrr! Europe is frozen… I saw it with my own eyes this week as I travelled by train to Brussels to participate to a Public Hearing on Sexual & Reproductive Health and Rights (SRHR) organised by FEEM Committee on Women’s Rights and Gender Equality.

The meeting took place at the European Parliament which for a strange reason has an enormous luminescent heart at its entrance.

I went there as part of my involvement with the SHE programme  an Europe wide project – sponsored by the pharmaceutical company BMS -  which aims to improve the quality of life of women living with HIV, through peer-support for HIV positive women and education of Healthcare Practitioners in order to promote better communication around the needs of women living with HIV.

The hearing objectives wereto select important issues, explore current landscape and provide some recommendations for the future report on SRHR under direction on Ms. Edite Estrela, Portuguese politician and Member of the European Parliament for the Socialist Party.

Renowned experts such us: Dr. Gunta Lazdane, Regional Adviser for Reproductive Health and Research in WHO Europe and Johanna Westeson, Regional Director for Europe of the Center for Reproductive presented their views in different discussion panels, such as health literacy and sexual education, public health systems and accessibility in the EU and the role of the EU in promoting these rights globally.

Overall it was really interesting to see how access to some basic services such as contraception and abortion still really differ around Europe with some countries still experiencing real obstacles: for example  in Ireland this year  a woman died because she wasn’t allowed to have an abortion. It was reassuring hearing panellist affirming that SRHR should be promoted as a fundamental Human Right and that this view will inform the report that will be presented to the European Union Parliament.

At the end of the debate there was time for Q&A. So thanks to a bit of a prompting from Joanna from BMS, I gathered courage, put my hand up,  and invited the panel to comment on the obstacles women living with HIV face in Europe when trying to access SRHR.

I introduced myself as a woman with HIV ( this is in my view an important political statement to counteract the invisibility caused by stigma)   and as a member of  SHE, and  spoke of how many of us face huge judgement and ostracism, from the community and even in healthcare, when we want to get pregnant.  Sometimes we are even pushed to have abortions (as reported by the Italian HIV positive leader Rosaria Lardino  here). I told them how even in the UK, just a few weeks ago I heard young HIV positive women reporting being denied contraception (the assumption being that they should only use condoms, despise widespread evidence  that women with HIV should have access to dual protection in contraception ) .

All experts and MEPs expressed their high interest and confirmed the importance of these issues. Here’s some comments:

• “My recommendation will be to promote integration of services dedicated to women”, Thilde Knudsen, Marie Stops International
• “After experience of workshop with Polish women living with HIV, we’ve learnt that the most important is to help them to fight against their fears and show them that they have a right to require a better care and quality of life. Women should be supported and empowered!”, Krystyna Kacpura, ASTRA network.
• “Create the women network is crucial
•   “Number of women with HIV is constantly increasing in Europe. Physicians should be trained on regular basis and women should have an access to the appropriate services and possibility to basically collaborate with their physicians.” Prof Izdebski (Poland).

After the meeting, the political advisor of the GUE party, to which the chair of the FEMM committee belongs, approached me and asked me to provide concrete suggestions for wording to be included in the upcoming report on SRHR.

To conclude I am really grateful that SHE is now implemented in over 14 countries in Europe (even in my homeland Italy!) and that we will be able to promote our Human Rights at European level, and that hopefully this can have an influence in our local countries.
It is a small step but an important one.

 

What does a good health care worker look like for a woman living with HIV?

Today was one of my least favorite days of the year. It was the day I had to have my annual smear test, to check my cervix is healthy and there are no signs of cancer. Women living with HIV have to do this every year in the UK. The GP surgery had called me a few weeks ago to remind me, and also to remind me of my flue jab. As usual I kept procrastinating. But as the cold increased in London I realized it was a good idea to be immunized, and checked ‘down there”.

Probably because I wasn’t exactly looking forward to it I kept pottering around the office and left late. I arrived at the surgery 15 minutes late. The nurse, maybe in an act of revenge, kept me waiting, and when after 10 minutes she let me in the visiting room she scolded me:
‘ I don” t do late”
‘ I am sorry” I said
” First let”s do the flue jab”
Before I could even think about it she had it out of the fridge and she stubbed my arm.
“It”s nothing” she said.
I put on a stoic expression . When I turned around to look at my painful shoulder I noticed she was not wearing gloves.I was stunned.I am used to be treated as a walking health hazard.
” Why are you not wearing gloves?’ I asked her
“Do you say this because of your status? ‘ She replied.
‘ Yes… But no… Well even if I wasn’t…So many people have it and they don”t even know it…’ I was thinking at WHO recommendations about Universal Precautions, but decided not to say anything.
” Oh come on! It”s only a flue jab…. If I was taking your blood I would wear gloves…but I have never had a needle stick injury doing a flue jab!”

Somehow I felt warm inside. I felt grateful to be treated like I wasn’t a dangerous threat. I was a person. When she finished with the jab. She looked at the computer screen and asked me ” Do you need any contraception?” “No thank you I said” and in my head I thought what a nice thing to ask a woman with HIV.

This felt especially good this week. On Tuesday I was at a meeting Positively UK had organized with the Women and Health Equality Consortium (WHEC). The meeting was attended by many other women who work in England supporting women living with HIV. We were looking at what were the needs of positive women today, and how we could have influence within the changed NHS structures .

Many participants reported that they had heard many women living with HIV in England, especially young women, being denied contraception, even when they directly asked for it. Many health workers just assumed that women with HIV must use condoms. However, we can only use condoms with the full support of our partners. And not all men, or women, like using them. Nowadays even the BHIVA treatment guidelines recognize that some people may not want to use condoms but choose to use treatment as prevention. The guidelines recognize that because of scientific evidence that effective treatment and an undetectable viral load can reduce the risk of person with HIV passing the virus to a sexual partner to very low level, comparable to condom use, people are entitled to start treatment to support them not passing HIV to their partner, just for prevention. However, some health care providers in the UK are still denying contraception to women living with HIV. Moreover dual protection has been recommended for HIV positive women for many years, and even acknowledged by UNAIDS. It was really sad to hear that this very bad practice is most diffused towards young women, who often lack the confidence to challenge it. Abusers of power target those who are most vulnerable and most unlikely to challenge them.

I wish every woman living with HIV coming out of a GP surgery could feel how I felt today when I walked out of my GP surgery. Head high, smiling. A woman that doesn’t” cause fear. A woman with the same desires, rights and access to choices as any other.

Did You Know What Women Living with HIV Want?

Here is a short video made by women living with HIV to support UNAIDS aim that no child may be born with HIV. As women living with HIV this is  of the utmost importance to us, however we also know very well  that this is only possible when our rights are upheld and advanced.

I am really honoured that I have collaborated with all those women living with HIV from every part of the world in promoting our rights and protecting our children.

Another fantastic initiative by UNAIDS is the campaign by young women who were born with HIV here is their vision: The hopes and dreams of young women growing up with HIV. Some of the young women who produced the statement have been  through Positively UK’s peer mentoring programme and have worked with us as youth peer mentors. Once again a clear proof of what can be achieved through our structured peer support model.

 

Angelina Namiba’s Guest Blog from Kenya: HIV Services Integration for Impact

I recently attended a conference in Kenya. The conference was held in the Capital City Nairobi, and was titled: Integration for impact. Reproductive health and HIV services in Sub-Saharan Africa. Bridging the gap: Delivering the promise – meeting reproductive health and HIV needs.

Day 1 and 2 were divided into parallel sessions with oral poster presentations on either models of HIV integration or policy and organisational change. The focus was on how to better target key populations, increase utilisation of services and better assess integration. I attended the sessions on models of integration. Day 3 was a focus on advancing programming in reproductive health and HIV integration.

There were numerous oral presentations covering research done into assessing the need for integrating family planning and HIV services; integration of other services such as cervical cancer screening; antenatal; safer conception and counselling and reproductive health into HIV services; provision of and increasing access to integrated sexual health services for key populations such as male and MSM/MSW; and delivering integrated SRH services to people living with HIV, to name but a few.

A short video ‘In one place’ – shown at the closing ceremony – featured the case study of a woman in rural Zambia who explained her journey to access ARVs and family planning.

“I leave home at 600am and arrive at the clinic at 11.00am. Usually there is a long queue and I don’t get seen until around 2.00pm. I then start to make the journey home and sometimes I don’t get home till 9.00 or 10.00pm! ARVs are provided at a different clinic and on a different day from where and when I can access Family Planning. Therefore, I have to make a similar journey, on another day of the week – to access family planning”.

In just a few sentences, she clearly summarised the 3 days discussion around why it is important to integrate SRH/HIV particularly for women living with HIV. Why it is so important to bridge the gap between services, and how integration can impact on the both the lives of women living with HIV, and the communities they live in.

Highlights for me included, the fact that I felt very lucky to have the opportunity to  hear about what is being done on the ground in terms of integrating services; to learn from programmes in Sub Saharan Africa and to meet with researchers who are at  the forefront of advancing this key area of the response to HIV. Other highlights included the fact that I hadn’t been home in nearly a decade – prior to this trip. So it was quite nostalgic but wonderful too to be back home and to see all the mind opening progress that has been made whilst I have been away. I got a chance too to indulge in some wonderful ‘nyama choma’ roast meat – a speciality of Kenya. The weather, the food, the flora and fauna! I could go on……

Finally, one of my other highlights was having an HIV test! Yes, I had an HIV test done by the Liverpool VCT Programme who had a booth at the conference. I wanted to experience the journey that people go through at a VCT session. What information they receive and generally how the process works. The session was conducted in a very professional manner; the worker was friendly and answered all my questions. Another reason I wanted to do the test was perhaps at the back of my mind there was a tiny hope that the test might be negative! Unfortunately, it wasn’t to be. And both the initial and confirmatory test both came back positive. Oh well, one can but hope eh? All in all, it was a very interesting experience.

I would like to thank GNP+ for supporting me to attend this conference.

Women living with HIV and drug use

When we talk about women who use drugs it is important to realise how gender power dynamics are at play. Women who use drugs are disproportionately more likely to be HIV positive, compared to men who use drugs because our vulnerability is compounded by gender and other structural imbalances such as poverty or belonging to ethnic minorities.

Some of us, women who use/ have used drugs,  may have also been involved in sex work, and some of us may have had transactional sex just to get the drugs. Even if one doesn’t directly exchange sex for drugs or money, negotiating sex on our own term can be difficult when under the effects of drugs and alcohol. Many of us who use/have used drugs may suffer from mental health problems such as depression and low self-esteem often born of traumatic experiences in our childhood. Experiences of child abuse and neglect are very common among people who use drugs. Because of this fragile emotional context some of us may use sex to feel wanted, to cope with  loneliness, or just to have warmth and intimacy: enforcing condoms may make us look as ‘fun-spoilers’ or may just bring rejection. All of this enhances our  risk of acquiring HIV and other STI.  The ‘ritual’ of injecting is often lead by men and women are often last in the line, either being injected by their partner or ‘senior’ drug users. Because women have more fat often it is more difficult to get a vein to inject and it may take several tries before successfully injecting, thus increasing the risk of acquiring HIV and other blood borne viruses. Harm reduction services should be sensitive to all those issues and not only provide clean needles, but also teach women how to inject safely, without having to depend on somebody else. It would be also good if harm reduction services also included sexual health services where women could get support and a safe space to discuss their sexual health needs. Simply handing out condoms is not enough!

Those of us who are HIV positive face a lot of stigma both  within HIV services and drug services . Society doesn’t envisage a person who uses drugs as a ‘mother’. Often even within HIV support organizations a woman expecting a baby who is a drug user will be treated in a very negative way, as if she cannot possibly be a good mother. But women who use drugs are women like others, with the same desires and rights as all other women, it is important that we can choose to be mothers and be supported. There is a lot to deal with for us during pregnancy because many of us may live not only with HIV but also with Hepatitis B and C. Living with so many viruses makes our decisions around treatment and pregnancy very complex. It is essential that services for women living with HIV who use drugs are not judgemental and support us understanding complex medical information around HIV, HCV and HBV and also offer us access to Sexual Health and Reproductive Services: this include contraception, abortion services, post abortion support and also support to have babies and be a parent. Those services need to be integrated with HIV services, provision of ARVs, clean syringes, opioid substitution etc. The Ukrainian network of people living with HIV has produced some excellent documentation on how positive women on opioid substitution can go on being good mothers and living satisfying lives.   Integrated services should be provided in ‘one-stop’ shop, or very closely located, because one cannot spend a lot of time going from one place to another, especially if she is a mother and a drug user, there is not much free time.

The fact that we use/have used drugs doesn’t mean we are useless, or powerless. Some of us use drugs, often to numb feelings that are too painful, but also because drugs are fun and enjoyable. With the right structure, acceptance, recognition and support drug users can achieve great things. For example Positively Women was founded by two women who acquired HIV through injecting drugs. It was 1987 in London and services available at the time were all structured around the needs of gay men. Those two women, Jaynie and Sheila started a support group in their front room. At the beginning the clinics didn’t even want to publicize their materials because they thought that two ‘junkies’ couldn’t possibly do something useful. They persevered and slowly women started to turn up. Within a few years they were doing educational sessions in schools, outreach in prisons and supporting hundreds of women. The charity still exists and is now called Positively UK: it supports also men but it  has maintained an ethos of peer-support and all the services are offered by people living with HIV, including people who use drugs, and with a strong focus in addressing gender issues working with both men and women. If it wasn’t for the group started by Jaynie and Sheila, two women who used drugs, our organization wouldn’t exist.

Our Option: Connect with the Real Lives of Women Living with HIV

 

It is just over a month since my return from the International AIDS Conference in Washington DC and I have spent the past week reorganizing my notes. Watching sessions I missed and trying to distil the ‘juice’ of the conference to offer to my peers that didn’t have the privilege to attend.

Disconnection is one of the first words that come to my mind: disconnection between the world of policy makers and wielders of power and the lived experiences of women living with HIV.

The moment when this disconnection became more acutely visible for me was at the plenary session ‘Turning the Tide on Transmission’, when on the same plenary we had Linda Scruggs, an openly HIV positive Afro-American woman making a call for our direct involvement in the choices and decisions that affect us and UNICEF senior pediatrician Chewe Luo promoting Option B+ the new bio-medical quick fix to reduce vertical transmission of HIV.

In a nutshell Option B+  aims  to test all pregnant women (with no mention of voluntary testing and counselling) and then put all those who are living with HIV on ARVs for the rest of their lives, regardless of their own health needs, regardless of the fact that research still hasn’t identified any further benefits for starting treatment before  CD4 count is below 350. This ‘Option B+’ has only been carried out  as an implementation intervention in the small country of Malawi, for just over one year.  In Malawi it was shown that it worked: it prevented babies from acquiring HIV, mothers were in good health, and it was also emphasized that it had the added benefit of preventing transmission to negative male partners.  Dr Luo summarized: it is simple, it is effective, and it is easy implementable.

I would like to stress that I am all in favour of taking treatment to improve our health, and staying alive, I have been on ARV treatment myself for over 14 years, and I would probably be dead otherwise. However, together with many other people with HIV from all over the world I believe that treatment should be initiated and continued primarily for personal health benefits. In the UK and all European countries  pregnant women who are still in good health, with an high CD4 count, only take treatment during pregnancy and a few weeks afterwards, in order to prevent transmission to the baby, this is clearly explained in the BHIVA guidelines. Afterwards women can stop, and wait, sometimes for many years, until their immune system is weaken and treatment is needed. It has been questioned if this is feasible in low income countries. The cost of monitoring tests has often been seen as a big obstacle. But is it really true that we can test and treat all pregnant women, but we  do not have the resources to monitor CD4 in Africa? Thanks to a very low tech test developed by the Imperial College it is possible to offer a CD4 test for less than $10. I am not an economist, but I am sure that from the money saved from putting on treatment people who do not need it for their own health it would be possible to fund a couple of CD4 count a year for all, and especially pregnant women who receive a positive HIV test.

When I came back to my office to share this bit of news with my team of peer case workers they were all horrified. My team mates were all asking: what has happened to choice? Do they know about side effects? Do they know how daunting it is to take treatment for the rest of our lives, especially if you have been newly diagnosed? How do you take treatment if you have not disclosed to your partner or other family members?  What about women who are in violent relationships and live in fear? What do you do when you have not enough food to eat with your medications? What happens if you develop resistance? Is there going to be second and third line treatment? What  about interactions with other medications?  Would they ever do this in London? Within the team we  have decades of experience supporting women being  on treatment, many of us are African,  and we know that high levels of peer support are needed to stay on treatment and manage many of the psycho-social issues that come with an HIV diagnosis. I can assure you that there is a lot that goes into swallowing a handful of pill for the rest of our lives.

I believe there is no reason why we cannot aspire as HIV positive women from all over the world to put our own health and the health of our babies first, according to our choices.  So dear heads of UNICEF, WHO and UNAIDS,  I know that the model implemented in Malawi has an elegant simplicity, but it is so far removed from our lived realities of taking treatment every day.

I doubt you would ever come to my North London  Hospital, the Royal Free, and enforce something like this on us, because there would probably be an uprising. But it is easy to do this in countries where most positive women are in incredible poverty, live in fear of discrimination from health care providers, where our networks of positive women are for ever underfunded.   It is very nice that you come and share the big stages of those International AIDS Conferences with us,  but what we are demanding is  that you really connect with us and our lives. We want you to listen to what we have been saying for years, as Anna Sango,  a 24 years old Zimbabwean woman living with HIV,  said in the opening ceremony.

How many times do we have to say: meaningfully involve us at all stages of programming. We cannot be just an afterthought at implementation level for your short sighted top down plans. We have a wealth of knowledge and experience that will truly fertilize the planning programmes, their successful delivery and their monitoring. For our health and the health of our communities there is another option: connect with our lives.

If you want to know more about those issues please read Dr Alice Welbourn article:  An HIV-free generation:human science versus plumbing