Transgender services and clinics: interviews at AIDS 2014 with JoAnne Keatley and Beatriz Grinsztejn
Simon Collins, HIV i-Base
The following two short interviews are included to complement the review article on transgender issues at the AIDS 2014 conference. JoAnne Keatley is a leading transgender activist and Dr Beatriz Grinsztejn developed the first transgender HIV clinic in Rio de Janiero.
The first interview is with JoAnne Keatley, director of the Centre of Excellence for Transgender Health at University of California, San Francisco; and co-chair of the International Reference Group on Transgender People and HIV (IRGT).
Q: Hi JoAnne, we are at AIDS 2014 and one of the slides used in many of the transgender sessions shows global rates of HIV in transgender people and also highlights the lack of data from many countries. I wondered whether you could talk about how you captured data in California and why this is important.
A: It is essential to get a better idea of how many of us exist and then also look at the health issues that are impacting our communities. As trans people, if we are not counted we just don’t count.
So as an advocacy point we came up with a standardised way to capture gender variance and trans identities universally across governments and through organisation such as WHO. We are often collapsed with other groups, and we sometimes overlap with other communities, but we have our own specific issues.
HIV impacts transgender communities differently due to the social determinants of health. The stigma and discrimination that trans people are exposed to on a daily basis are the main drivers of the HIV epidemic among trans people.
Q – It sounds tough. You describe life as being vulnerable.
A – It is very tough, especially when your very existence is criminalised. In many countries, a trans person can be arrested or be a victim of violence, just because of who they are. Many in the trans community are victims of violence from the authorities and from the police. The people who are charged with protecting civil society from harm are often perpetuating the violence against us. We have a lot of work to do.
Q – My impression from AIDS 2014 is that there is more transgender awareness in the programme than at previous meetings.
A – I agree there are lots of sessions with papers that include references to trans people. The reason for increased participation is because there has been a lot of advocacy from the trans community, to assure we were adequately, or at least better represented, than for example, in Washington DC when there were zero sessions that were specific to trans populations in terms of scientific papers being presented.
Although the International Reference Group for Transgender People organised the trans networking zone in the Global Village – where we have had many activities – we have not been as prevalent or as visible in the decision making and policy work that happens inside the scientific sessions.
Sometimes you see sessions about “MSM and transgender people” or “key populations” and they break down the key populations. But although the research may have had some trans involvement, this is not always the case. It is one thing to say a study or trial or even a service programme is inclusive of trans people, but I always want to see the numbers and the level of involvement. I want to know whether transgender issues are just an afterthought, and if so, this is not good enough.
Q – So it sounds like a good goal for future meetings is for transgender issues to be included in more of the scientific and policy sessions?
A – Yes, and it is time that we consider a trans plenary that has trans people on the panels. It seems crazy that it is not already here after more than thirty years of the epidemic.
Q – What has been your highlight from this meeting?
A – As always, it has been networking with my own community and being able to move policy makers so we can continue to strive for change. The highlight is always engagement with my and other communities that share in the struggle and supporting each other works, even when these are sometimes baby steps.
Q – Could you talk a little about the service you set up in California. Is it an HIV-specific clinic, or is sexual health and well being?
A – The Centre of Excellence for Transgender Health is a capacity building assistance and technical assistance provider in the US and beyond. It develops treatment advocacy and educational materials for transgender populations (http://www.transhealth.ucsf.edu). We document and disseminate best practices for linking and providing services to transgender communities.
We have a clinic and a medical doctor is part of our team, providing primary care services, but her practice is not specific to HIV.
The Centre is also a collaborative effort between the Centre for AIDS Prevention Studies at UCSF and the Pacific AIDS Education and Training Centre. We put together training materials and educate health providers about services for trans people. We also run one of the largest domestic funded programmes from the US government focused on trans populations, called the Trans Women of Colour Initiative for which we are the evaluation and technical assistance centre.
There are nine sites around the US that are delivering care for HIV positive transgender women, including cross sex hormone therapy, as part of the treatment model and ARVs. There are two clinics in each of NYC, Chicago and Los Angeles and three in the Bay Area, San Francisco.
The clinics are tasked with finding new cases of HIV in the trans community, testing and engaging with these women, linking them to care and supporting them to stay in care, and then tracking the outcomes over time. We are 18 months into a five-year project designed to find the best practice. It is very exciting.
Q – Roughly how many people are involved?
A – We currently have about 180 women enrolled into care but we only started enrolment seven months ago. I always feel very fortunate to have the opportunity to do this work and to give back to my community.
Q – Thank you, you are doing fantastic work.
The second interview was with Dr Beatriz Grinsztejn, the director of the STD/AIDS Clinical Research Laboratory at the Clinical Research Institute Evandro Chagas (IPEC/FIOCRUZ), Brazil.
Q – Hi Beatriz, I was impressed that your presentation at AIDS 2014 included transgender services and I remember you were just setting up a trans clinic for HIV positive people in 2005.
A – Yes, one of difficult things we had to deal with was stigma. When setting up the clinic we knew we needed to train staff so that clients would feel welcomed and would want to come. Our HIV clinic is based in a large hospital and is on the main campus of a large research foundation.
Now, as we are getting more trans people coming we put together a training curriculum to make sure everyone in the hospital is trained. This includes administrators and porters, so they know how to provide services that are inclusive. The clients are coming to get services and if they feel stigmatised they won’t come.
Q – Can you talk about who uses the services, how they know about the clinic and the main issues you face?
A – The main clinic sees 3,300 HIV positive people, about 45% of whom are MSM. The transgender clinic now includes about 120-150 people, mainly trans women. It took a time to build this up with people coming because they heard about us from friends and peers. It is a strong community with a lot of connections. One of the main problems is late diagnosis.
Sometimes people are very sick and have very low CD4 counts – they only come because their peers bring them. I might get a call asking: “Can bring a friend who is not doing well”. These cases will nearly always be HIV-related.
In Brazil, across all groups, about 30% of people have a CD4 count that is already below 200 when they are diagnosed, even though ARVs are free. This is probably even lower for the transgender clinic. Unfortunately, whatever the guidelines say about starting treatment, a lot of people still don’t get tested. It is slowly getting better because testing is being expanded to community organisations and we hope this will help things improve.
Q – Did the transgender clinic integrate easily in the general HIV services or was this run at different times?
A – No, definitely not, we did not want the services to be separated – if you separate people within the clinic you create ghettos. Some people took a while to get used to the bathrooms as we made sure that these were not gender specific. We took down the signs for men and women and this has worked better for everyone.
Q – Can you say something about services for trans women? Is transition surgery available at the same clinic?
A – Our team includes an endocrinologist to provide support about drug interactions with hormones and ARVs. It is very important to have someone who knows about this. We also have a trans peer support group. Transition surgery is now available as part of public health system but it takes a lot of steps. This takes place at a different hospital and although our clinics do not formally connect, we know the referral services. HIV testing is part of pre-surgery evaluation and HIV positive people are still able to have surgery.
Q – In London we have been asked about people who are using hormones from the Internet, especially if they are not registered with a clinic or if their residency status was difficult. Does this happen with your clients too?
A – You definitely need a doctor to do this prescription, especially if you are on ARVs. Drug interactions are serious and can affect your HIV treatment. Another issue we have comes from complications of self-injecting fillers. Many of our clients are poor and deep tissue infections and abscesses can be a common complication if they have injected bad quality silicon.
Q – Are you involved in sexual health service for HIV negative trans women?
A – Yes, we offer HIV prevention services. We are currently enroling in a locally sponsored PrEP demonstration study for high risk MSM and trans women. We are educating the community on PrEP but but not actively recruiting – this is not a clinical trial. I love the chance that we may be able to offering PrEP from the government decision. Results from our demonstration project will provide information to help with this decision making.
Q – Finally, we are at AIDS 2014 and lots of activists are hoping for transgender issues to be included in the main conference programme for the next meeting. Do you have any influence in the IAS to help to include transgender people on the panels?
A – Yes, I am co-chairing Track C, so I will do it!
- Grinsztejn B. Stepping up the pace for men who have sex with men (MSM) and transgender: understanding the science.