Some years ago HIV was considered as the 21st century plague. Now the situation is different. HIV, as experts say, is a chronic well-controlled infection. In other words, good quality of life and a sense of well-being with HIV is the new standard.

The experts, who have been working on improvements of HIV treatment, can provide an expressive example from the medical practice: people who have been diagnosed with HIV at 20 and started to take antiretroviral therapy live approximately 50 years. According to some research findings, people with HIV can live longer than people who don’t have HIV. The reason is that doctors are constantly monitoring infected patients, and this can influence the quality of life and lifespan.

To that end, you should follow several rules: take treatment and be under control. In other words, you should constantly receive medical services. The scientists from SPbU and their colleagues from the USA have started to develop a project “Social programme of engagement of HIV-communities into healthcare system” (a competition of the joint initiatives of the Russia-American research projects of the Russian Foundation for Basic Research, Russia, and National Institutes of Health, USA).

Statistics

Approximately 60 % HIV-positive people are aware that they are infected, 50% go to hospitals for treatment or check up, and only 20% are on stable effective treatment. The statistics was obtained by the RAS academician Vadim Pokrovskii. The data were received during the study on the medical care to HIV-infected people in Russia.

“The statistics are very low, — said SPbU Associate Professor, deputy head doctor of the S.P. Botkin Clinical Infectious Diseases Hospital Vladimir Musatov. — The drugs used in HIV treatment are great advances, but they cannot bring any positive effect unless administered by professionals to the patients who need treatment”. The experts say that they are facing several problems in relation to the HIV treatment now. “We have drugs, we have specialists who know how to administer them, we have people who need these drugs. The problem is that they do not meet or do not come to the common ground”, — said Vladimir Musatov. This current situation is interdisciplinary approached by doctors, nurses, psychologists, and sociologists.

 International collaboration

“This research is not the first one of its kind, rather it is another step in the big project that was initiated by SPbU and Medical College of Wisconsin (MCW) in 2001. For more than 20 years, it has had the Center for AIDS Intervention Research (CAIR), — said Iurii Amirkhanian, sociologist, CIAR Professor, representative of the MCW. — For all these years, we have been actively collaborating and came to a conclusion that HIV-positive people need special attention in our country”. The project on engagement of HIV-positive people into the medical care system will be implemented up to 2019.

How to find participants?

The experts involved in the project recruit people in communities, groups of people united by social links. The project needs about 20 groups of five people, which makes 100 in total. “In order to get a whole social community, we recruit so-called “indexes”, people who open doors to the communities. We recruit indexes in the Internet: through forums, support and self-aid groups, dating sites for HIV-positive people and others. We organize campaigns, so anyone who is interested in treatment can call us to get further information and selection criteria” — said Iurii Amirkhanian. These criteria are age (under 18); immunological status; virus aggression and other medical factors. To participate in the project you should take all necessary tests at the lab.

What is the focus of the project?

Once all the social communities have been identified, we are in for the main stage of the project. A half of the patients will make a control group, or a comparison group. At the initial stage they will have to answer questions and then receive counseling and support.  The other half will go through a number of training sessions where they will be told about the clinical course of the disease and its treatment, and will be informed how to adopt attitudes, develop behavioural intentions, and get to know the social norms. In other words, they will receive everything from treatment to psychological support. The main concern of the project is to change the attitude of the infected people to the treatment and overcome misunderstanding of the importance of the therapy.

“We identify the most active and authoritative members of the communities and invite them to our training session “Champion of equal support”. The training primarily focuses on how to teach a leader to help himself/herself and the member of his/her community to reach what they want”, — said Iurii Amirkhanaian. Social communities, as the evidence-based science says, are an excellent tool to influence an official or unofficial leader, says the expert. Let us take an example: if a leader has given up smoking, a member of his/her group might as well follow him. This fact has been proved by numerous research studies. So, by developing a positive attitude to the treatment in the leader, we can make a whole community adopt this attitude. At the end of the project, the two groups will be monitored against the effectiveness of the training sessions and collaboration in the group.

Why is it important?

The scientists are convinced that this project is at the forefront of research and medical practice, as more and more people are diagnosed with HIV at the late stage, when they have AIDS and the treatment is not effective as immune system is completely destroyed.

Any infection is a social disease, experts agree. If a person is not aware that he/she is infected and ignores treatment, he/she can pose a threat to society. This is a reason why doctors have hot debates about compliance regarded as part of the patient’s life. The term was defined by Nikolai Nedzelskii, an activist of the HIV-positive community, who has already died. Compliance, as he saw it, is a conscious, active, and neat participation of a HIV-positive person in the treatment, which calls for deep understanding, informed consent, and collaboration with a doctor. In this respect, social networks, knowledge, experience, and support make the treatment a little bit more positively oriented. For people who are aware that they are diagnosed with HIV and have to live with the diagnose, this “a little bit more” means a lot, experts agree.