Anna Mia Ekström wants justice

Text Cecilia Odlind, first published in Swedish in the magazine Medicinsk Vetenskap no 1/2016.

AT A CAMP FOR YOUNG people with HIV, Anna Mia Ekström met a woman from a small town in Sweden. She had not told either her family or her friends about the infection. Instead, she thought about moving away.

“Constantly having to wonder whether your boyfriend or family would still be on your side if they knew is a heavy burden for a teenager. You end up in a very disadvantageous position,” says Anna Mia Ekström.

The fact is, about one in five people with HIV in Sweden have not told anyone else that they are infected. This was one of the conclusions of a study conducted last year on behalf of the Public Health Agency of Sweden that was led by Anna Mia Ekström's research group. This was the first time the quality of life of people living with HIV in Sweden had been investigated. The results also indicated that one in four stopped having sex entirely following the HIV diagnosis, most of whom received 10–20 years ago, and that the same number felt that the infection had a detrimental impact on their chances of enjoying sex.

“These are depressing figures and demonstrate that there is still a significant lack of knowledge about HIV that, in turn, has a detrimental impact on many people,” says Anna Mia Ekström.

At the same time, those participating in the study estimated their quality of life as generally good.

“It is not that long since HIV infection was equated with a painful and premature death. With this in mind, many current patients are really happy that they live in Sweden and are healthy thanks to one or two pills a day,” says Anna Mia Ekström.

More people than ever, about 7 000, in Sweden live with HIV. Research shows that the antiretroviral drugs that started to appear as early as the 1990s are now so effective that the risk of transmission is very low (called treatment as prevention). In 2013, the Public Health Agency of Sweden reported that the risk of being infected with HIV during vaginal and anal intercourse with a person who is well-treated is minimal, but condom is still recommended.

“We now know that people can live with non-infectious HIV. But this has not been sufficiently demonstrated or known for that long, which is why many people, including many of those who have HIV, are still under the impression that a person with HIV is a risk to others. Other people's views of them and their own self-image naturally have a detrimental impact on them, not least in conjunction with new sexual relationships. That is why it is extremely important to put this knowledge out there,” says Anna Mia Ekström.

AMONG THOSE WITH known HIV infection in Sweden, about 95 per cent are being treated and undergo regular check-ups to carefully monitor the effects of the medication by checking that the virus level in the body is kept down to unmeasurable levels. But this is a somewhat unique situation globally. Anna Mia Ekström recently travelled to Rakai in Uganda, where she visited a home for children who have lost their parents to HIV and who often have the disease themselves. It was home to 250 children who are looked after by one single teacher without any resources. The children's home is only an hour's drive from one of the world's most modern HIV research sites.

“There is extremely effective HIV medication just a few miles away, but it doesn't get there. Injustices like this make me very angry; this is not how the world should be in 2016. It is so obvious that more is needed than just good medication,” she says.

Hope for the future, for example.

“Unfortunately, these children have, quite naturally, very low expectations about their lives,” she says.

Anna Mia Ekström thinks that trips to Africa make it easier to understand the complexity of the situation.

“It can be difficult for us in Sweden to understand that the disease spreads so easily and why people do not protect themselves better against such a serious illness. But if people think they will be dying soon anyway, it does not really make a big difference”.

A SIMILAR EXPLANATION may be the reason why pregnant women with HIV in many African countries are not able to protect their unborn children from the infection. This is in spite of the fact that, with simple means such as drug treatment during pregnancy and breast-feeding, this is entirely possible. In her research, Anna Mia Ekström has highlighted the factors that are required if prevention is to actually work in practice.

“Aside from the fact that the healthcare system has to function, everything from drug distribution being in place and relevant decision makers being informed, there also has to be an understanding of the women's social environment, for example their opportunity to make decisions about their own lives, inform their partner and basic factors such as having money for food and somewhere to keep their medication in secret,” she says.

“This type of understanding is important if you want to work to stop the spread of HIV, with is still progressing at a high rate in many countries and increasing in some,” contends Anna Mia Ekström.

ANOTHER EXAMPLE comes from the research group's work in a slum area in Nairobi, where many people are living with HIV. Despite the fact that aid organisations on site were offering free HIV drugs via a clinic within walking distance, it was difficult to reach out with medication.

“What we in the research community call 'real life effectiveness', that is to say the measure's effectiveness in practice, was therefore very low. We wanted to find out why,” she says.

They were able to reveal a range of causes: For example, written information worked badly in one area where there are few people who can read advanced text. The advice to take the medication in conjunction with meals also had the wrong effect as many of these people barely had food for the day and then did not take the medicine. The social stigma also had a major impact, many avoided coming to the clinic as they wanted to keep their illness private as they otherwise risked becoming outcasts. Consequently, the requirement for someone who is to begin receiving medication to list a close relative, which was introduced in order to ensure the patient has the support of those around them, had the opposite effect.

“By identifying and listing the tangible causes, we were able to suggest effective remedies. Minor changes that could make a big difference. This is also what is so great about being a researcher. By finding things out, it is actually possible to drive through changes that have a real impact,” she says.

So Anna Mia Ekström's motto is “Just do it”. And according to the UNAIDS, it is possible to eradicate HIV within 30–40 years. In order to achieve this, the targets by 2020 have been set for 90 per cent being aware they are infected, 90 per cent of those who are aware they are infected should receive treatment and, finally, that this treatment is managed so well that 90 per cent of those who are treated have undetectable virus levels.

“This is how good the situation is in Sweden already, so we are demonstrating that it is possible,” says Anna Mia Ekström.

THAT SHE INSTINCTIVELY watches out for those who are weak, marginalised and vulnerable was surely one of the reasons why Anna Mia Ekström ended up researching global health and HIV, a field in which she has been working since the beginning of the 2000s. That she is also focused on results can certainly be of assistance when she comes up against apparently hopeless situations, like at the children's home in Rakai. But there was also hope there, believes Anna Mia Ekström.

“I saw the significance of an enthusiastic driving force. The manager, Ida, acts as both the children's teacher and their mother. She really does mean everything to these children, who would otherwise be completely alone. If she wasn't doing it – who would? I think about research in kind of the same way – if we were not identifying problems and finding solutions – who would then do it?”

No, exactly. Just do it.