As the HIV-world gathers in Kuala Lumpur, Malaysia, for the international AIDS conference I’m not thinking of advances in vaccine development or promising new antiretrovirals such as the integrase inhibitors, or about new approaches to HIV cure. I’m not even thinking of treatment as prevention. Somehow, I keep thinking of transgender people. Why? Simply because findings from a systematic review and meta-analysis of HIV burden in transgenders is what struck me most in what I’ve been reading about HIV and AIDS so far this year. Although I am sort of aware of the obstacles that transgenders face in accessing health care services, it is still shocking to read that 19% of transgenders worldwide is living with HIV, as Stef Baral and colleagues report. The odds of living with HIV compared with all adults of reproductive age across the 15 countries studied were almost 50. And it doesn’t matter, apparently, whether you live in a rich country or not. Baral reviewed studies from USA, six Asia-Pacific countries, five in Latin America and three in Europe and found “remarkable consistency and severity of the HIV disease burden among transgender women”.  

Clearly, as public health professionals we don’t have transgender people on our radar screen at the expense of their health. Perhaps it is because public health professionals think that transgender is a rare phenomenon, and therefore problems of this group have no public health impact. When I studied medicine I did my internships in general practice in the inner city of Amsterdam. On the very first day three consultations were transgender related. In my circle of friends and acquaintances, I know of at least one person wanting to transition to the other sex. Now, I could still think this is because I am living in a tolerant city, moving around in not-so-average circles. But this notion left me entirely on the day when I worked in the remote desert town of Nukus, Uzbekistan, where I entered a bar and was greeted by a voluptuous transgender.  Still thinking this might be an exception in this predominantly muslim country, I was travelling through another remote Uzbek village where the leader of the local circus appeared to be transgender. Meanwhile I had learnt that both India and muslim Pakistan have substantial communities of hijra, transgender people that have the status of a sort of third sex in their societies. Hijra in India alone are estimated to be over one million. A study from the United States suggests that the estimated number of transgender people in that country is close to 700 000 or 0.3% of the adult population.

Transgender people face risks. Not only are they more vulnerable to HIV, they also face violence, rampant discrimination and exclusion, not to speak of the stress and difficulties that come with the sex reassignment process. Yet as public health professionals we pay far more attention to, say, the health risks and injuries of workers in the mining industry. But, to stick with stats for the US, transgender people outnumber  workers in the mining industry by almost three times.

So how is the international AIDS Conference doing, I wondered, in terms attention for the issues of transgender people given the smashing results of Baral’s systematic review? To this end I started to search the conference programme. I found out that 3 out of the 88 sessions addressed transgenders with at least one presentation focusing on transgender issues. Browsing the abstracts, transgender popped up in 11 out of 873 abstracts, but in fact only 3 out of these 11 really focused on transgender health or rights issues. Three abstracts out 873, or 0.3%! This is exactly proportionate to transgender prevalence in the United States, but disproportionately low compared to the HIV risks faced by transgender people. Unfortunately, the conference organisers share the same blind spot with society as a whole that considers transgender people and their problems to be, well, not sexy.

Rosling is a medical doctor, epidemiologist, world-famous TED talker and founder of GAPminder, an internet-based tool to interactively visualise large chunks of epidemiological data; Time Magazine has rated him among the 100 most influential people in the world, and I would certainly rate him among the 10 funniest and engaging speakers I have ever heard. Rosling was working in Mocambique as a district doctor just after he graduated. One day, an elderly woman came to the hospital with a complicated fracture of the lower leg. Rosling went on to reposition the fracture, and put a cast on. He also prescribed antibiotics and bedrest. A couple of days later, the woman was already standing beside her bed, telling Rosling how good she felt and showed her leg.  The young doctor watched in dismay. Not because the patient got out of bed prematurely. Watching the woman walk, he saw he had repositioned her foot in a transversal position… Slightly panicking, he told the woman he had to reposition her foot, again. She flatly refused. “No doctor, that painful thing you did yesterday? Never again! I am so happy with what you did. You see, I knew when the bone is sticking out of the skin you normally die. Thanks to you I feel well. I can go home to look after my grandchildren, and rear my chickens. This is good enough for me.”

Rosling’s message to the audience: If, as a humanitarian response, you do something perfectly, you have taken a resource away from somewhere else where it could have been used. Listen to the people who are affected and give them what they need, rather than aiming to be the “perfect” humanitarian aid worker. You don’t want to leave a place in a situation where your intervention is not sustainable. Don’t burden underfunded health systems with white elephants.

Even if the example itself is literally a limping one (by any standard, a foot should point forward rather than sideways), Rosling’s position is highly debatable. MSF creates “islands of excellence in seas of under provision”, and gets criticized for that, not only by Rosling. The “islands of excellence” criticism originates from the debate about HIV programmes. Critics argue that these vertical, disease-oriented programmes do not contribute to developing the health care system in (African) countries.

Much has already been said about HIV in this context and I won’t go into that now. But what does Rosling’s position mean for humanitarian medical aid in general? MSF is a medical humanitarian organisation, driven by medical ethics. MSF strives to provide the best health care possible for populations in need, whatever the context. And I agree. As a doctor, I have difficulties to treat my patients by standards that are far below of what I have learned to be good medical practice. Good medical practice also means: respect the patient and respect the culture you’re working in. Cut ’n paste health care creates white elephants. But there is a difference between smart adaptation of good medical practice and accepting mediocre health care. No population and no individual should be exposed to the latter.

Rosling’s message worries me. Putting sustainability first stifles innovation. A lowered standard of HIV care in resource- and/or security constrained settings would never have lead to the scale-up and access to antiretroviral medicines in resource-constrained settings that we witness today. Accepting that ARV’s are far too complicated for Africa, that malaria should be treated without a diagnostic test, that diagnosis and treatment of multidrug-resistant tuberculosis is technologically too burdensome for countries like Uzbekistan or Myanmar, that monitoring hepatitis C treatment for side-effects is not possible for patients in India or Ukraine, will get us nowhere and leave patients empty handed. The gap between medical needs and access to good health care in the world has proven to be too sustainable to worry about sustainability.