What Really Matter to People living with HIV? Sexual and Reproductive Health and Rights (Part 2)

What really matters to people living with HIV?

Well, if you ask me, and quite a few positive people I know, having a pleasurable and safe sex life and, for some, starting a family come to the very top. It seems this is an area of our lives where HIV can have a really negative impact, if badly managed.

One of my concerns looking at the draft document circulated for the Standards of Care is that there were not really any indicators for Sexual and Reproductive Health and Rights. The main focus on the paper was on avoiding onward HIV transmission. Obviously everybody agrees with this. Nobody in a sane mind wants to see an increase in transmission of HIV. However, this is a limited approach. We cannot just stress what we want to avoid, I believe we need an affirmation of what we want in its place.

I will never forget when I was newly diagnosed and  I asked my doctor about pregnancy:   she rolled her eyes and everything in her body language expressed disapproval, even if she told me that I could take AZT during pregnancy to avoid transmission. Because of this I totally put pregnancy out of my mind. I think things could have been very different if she had told me in an uncompromising supportive way, looking in to my eyes and with a large smile on her face: ‘Yes you can have children, and it can be totally safe. People living with HIV can conceive without passing HIV to their partners and have healthy babies. Everybody here in the clinic will support you in this process.  We are here for you’.

I know that even today the pregnancy journey can be filled with anxieties for women living with HIV, and this can deeply affect our mental health and consequently the baby’s health. This could be avoided because  we know that peer lead projects, such as Positively UK From Pregnancy to Baby and Beyond – lead by Angelina Namiba- can play an important role in making women living with HIV have a happy pregnancy, just like any other woman. This approach can improve the woman and the baby’s quality of life enormously. However funding for our project is too scarce to keep Angelina working on it. And many women living with HIV still go through extremely stressful times while they try to conceive or are pregnant in the UK. We could easily avoid this!

And it is not just about having a baby it is also about having the sex we want and we enjoy. Most of the time at the clinic at the best they pass you a few condoms, if you are lucky and you  ask you may get a female condom. But nobody really has the time or the skills to talk to you about your sex life. This is obviously much more the terrain of peer support groups. Moreover, nowadays it is not just about using condoms is also about understanding treatment as prevention, Prep, PEP, and the combination of interventions that can contribute to avoid onward transmission. This stuff is complex and difficult to get to grip with.

Because of all of this I believe that upholding our sexual and reproductive health and rights should be an important heading in the standards of care of people living with HIV. Avoiding onward transmission could be one of the indicators. But an important indicator should also be referral and access to specific peer support services which can give complex information in a form that is easily understandable and can address those issue in an empathetic,  structured and effective way.

What do you think? Do you know of other good indicators for sexual and reproductive health, or quality of life?

Standards of Care: What Really Matters to People with HIV? (part 1)

Las week I went to a meetings that really left me thinking.  It was about drafting the BHIVA  ‘Standards  of Care’ guidelines for clinical care of  people with HIV. This is a really important process because it will influence the kind of services and care that will be available for us in a time when resources are scarces and the NHS is being revolutionised.

I was asked to do a presentation on what matters for people living with HIV and I would like to share it with you a point at the time. I would also like to hear from my HIV positive readers what good quality care means to you,  and how can it be measured, so that those who deliver it to us can be held accountable.

My first point was testing.

Expanded testing is a big priority for the NHS:  it is seen as crucial in reducing  people being diagnosed too late, when they are very sick. It also has a place to play in reducing HIV transmission: people are more likely to practice safer sex or being on treatment that reduces infectiousness when they know they are HIV positive. However, in spite of all those good aspects, the idea of blanket testing  sends shivers down my spine. Expanded testing should always mean humane testing. I believe that it needs to be provided by fully trained staff who understand the implications of receiving a positive test and the possible negative consequences: for example for women testing positive and disclosing their status can make them vulnerable to Gender Based Violence. We also need to ensure that people, when testing, do not experience a great trauma that may alienate them from accessing health services. I recently supported somebody who a couple of years ago was tested by the GP and  was told he had AIDS without further explanations. This person fell apart, lost his job,  his home, his partner left him and (not surprisingly) didn’t go back to the doctor for over a year.

I am especially concerned about plans of offering testing in A&E and hospital wards. Yes,  pilot projects have shown this to be acceptable to health staff and patients alike, but this is  probably when the test is negative,  it is a totally different story when it is positive! Also the last generation tests are super-fast and develop just in front of your eyes, in a couple of minutes, almost like a pregnancy test. I am concerned this process may be really stressful and traumatic  for both the health care provider offering the test and the person who receives it.

What are the solutions?

I think we need to keep an eye and have indicators on how long it takes for people to access services after testing, and that they continue going to hospital (especially in the first year) and don’t drop out: this could be a sign of trauma and poor testing.

I think that healthcare providers should be trained  around the links between HIV and vulnerability  to Gender Based Violence so that they can become able to spot signs of the risks and ways of supporting women.

Also we could ask newly diagnosed people about their experience of being tested and accessing treatment care and support.

Any other ideas on how to ensure high quality testing?

8well: food on the table for International Women’s Day

Happy International Women’s Day everybody!

What a better way of celebrating that with some food for thought. Here are some snippets of the video project 8well, lead by Robert Fieldhouse and David Rowlands of Baseline magazine.. The films bring together people living with HIV and food experts to celebrate and support the positive impact healthy eating can have on our lives.

Here is the section Come (HIV) Dine WIth Me starring myself, my colleague friend and mentor the fabulous Angelina Namiba, and last but not least Mr Robert Fieldhouse  himself!

 

What Gives Me Inner-Strenght

Today I took part to an event organized for International Women’s Day by Maureen Bailey from the Inner-Strength Network.

The event was entitled Women Against All Odds and it included  Doreen Lawrence, who spoke of her 18 years struggle for justice and truth following the racist murder of her son Stephen.

I was asked to speak about my personal experience of living with HIV and where I found my inner strength to overcome hardship. No matter how many times I have told my story in public it is always nerve wracking and it makes me feel quite vulnerable and fragile again, which is quite ironic, when I should be be there as this example of ‘strength’!.

I was also asked to give a quote about where I find my inner strength, which was displayed in the hall with those  of famous women. I was quite chuffed that  my picture was next to Michelle Obama’s!

Here is my quote:

“The sense of interconnectedness with other beings and nature gives me inner strength. I feel that my being and my actions are interwoven in the lives of others and of our planet. When I feel I cannot do something I always think I am not doing this by myself or for my self. I continue in the actions of those who before me tried to contribute a positive change, and I think of those who after me will continue to strife for a better and just world for all. I am a small part of something much bigger. I take a deep breath,  feel the ground under my feet, I look at a garden, play with my cat… and keep going.”

The room had lots of picture of ‘Inspirational Women and their quotes. One of my favourites was Maya Angelou:

“If I am not good to myself, how can I expect anyone to be good to me?” and  “Be a rainbow in someone else’s cloud.”

International Women Day is officially on the 8th of March.

BHIVA HIV Treatment Guidelines

It is the last few days of consultation on the new BHIVA guidelines for treatment of people living with HIV.

I am really pleased to say that there  has been extensive consultation with the community of people with HIV.  BHIVA had  a community representative on the writing committee and also held two large consultative meetings with the community: one before Christmas and one last Tuesday. On Tuesday the room at Friend’s House in Euston was filled to the brim with a good diversity of people.

There are two extremely  innovative sections in the guidelines: one dedicated  to Patient Involvement in Decision Making and one on Treatment as Prevention. The latter is especially ground-braking because it acknowledges in practice the prevention revolution brought about by the HTN052 study. This was a research  among couples where one partner was positive and one was negative, who were not always using condoms, which proved scientifically that people on HIV medications are 96% less likely to transmit HIV.

It’s a fact: there are HIV  positive people who are not able to use condoms, maybe because they want to conceive, or because they feel it interferes too much  with the pleasure and spontaneity of sex, or maybe because, as a consequence of power dynamics, it can be difficult for women or young people to always negotiate condoms. Starting treatment in order to avoid passing HIV to a negative partner is acknowledged as an ethical option by the guidelines. Obviously the guidelines also include a lot about in-depth discussion with the doctor of all the ‘caveat’ and especially  the crucial importance of stressing the use of condoms ( and  I suggest to include female condoms! )  to further reduce the very low risk.

I feel it this is  an amazing acknowledgement of the sexual and reproductive rights of people with HIV, as well as that  it could contribute to reduce stigma,  and finally  that it  also provides a strong argument to make treatment available  to all.

It is not surprising and maybe not a coincidence, that this week there has also been a change in the UK policy that prevented foreigners, such as failed asylum seekers and people on a student VISA, to access HIV medication  (an issue on which we had been campaigning since 2004). The rationale beyond this change was not just that it was absurd and incoherent that ‘ foreigners’ could access treatment for all infectious diseases apart from HIV ( the evil disease that needs to be singled out!). The argument for providing treatment to everybody on UK territory was very much made on the notion that this is important for public health and prevention, because people on treatment are so much more less likely to transmit HIV.

I really hope that what is happening in the UK will have even further ramification in promoting Universal Access to treatment to the millions of people who still need it, especially in the current climate of uncertainity created by the the Global Fund Crisis.

Good coverage on the change in policy on access of HIV treatment was on the Telegraph.

If you  are interested in commenting on the BHIVA treatment guidelines (and can digest the 111 pages written in medical jargon….gulp!)  the consultation is open until Monday 5^th March.