People with HIV have their own voice

Mara Ruiz
Mara Ruiz

When a health problem has such large dimensions, as is the case of HIV, one could forget that its impact is more than numbers, and that it affects people from all over the world in different ways.

For this reason, from the beginning of the response to HIV, undertaken 40 years ago by civil organizations rather than by the health authorities, emphasis was placed on the need to attend to the affected groups paying attention to their characteristics, their vulnerabilities and their needs.

Relevant issues

Few extensive international studies have undertaken the task of asking the opinions of people living with HIV. This was the objective of a recent investigation carried out by ViiV Healthcare, a pharmaceutical alliance between Pfizer and MSD, dedicated to the development of drugs against HIV.

The Positive Perspective survey (called in Spanish Perspectivas positivas) was carried out in two stages that consulted a total of 3,500 people with HIV from more than 20 countries, including four Latin American countries (Argentina, Brazil, China and Mexico).

The document, say the authors, reveals the experiences of those living with HIV and reflects the changes that have arisen in care for the infection, in addition to providing data on different aspects of quality of life that must be taken into account within medical care.

Simultaneous treatments and health care

The survey inquired about polypharmacy, which is defined as the situation in which a person takes treatment for five or more diseases or health conditions. It was revealed that 42% of those surveyed are in this situation. In addition, 82% stated that they take at least one non-HIV medication daily.

Thanks to the effectiveness of antiretroviral treatments, more and more people with HIV reach old age without problems, which entails the presence of other health conditions related to aging, such as heart or metabolic diseases. On this topic, 57% of the participants said they were concerned about having to take more and more medications as they get older.

Considering that, to date, antiretroviral treatment must be taken throughout life, 73% of those surveyed would like to have a treatment option with fewer drugs. The study also found that polypharmacy is a factor that negatively affects the quality of life reported by people with HIV.

The importance of dialogue

Regarding the capacity for dialogue between doctors and users, the survey found that those people with HIV who were more involved in their care had better health outcomes. In the same vein, 65% of the participants said they would like to be more involved in decisions about their treatment.

However, an obstacle to getting involved is the poor communication they have with health personnel, since 77% indicated that they do not feel comfortable discussing important issues related to their infection with health professionals.

These important issues are: concerns about the side effects of antiretroviral treatment and the impact that these drugs could have in the long term. Unfortunately, a third of the participants reported feeling uncomfortable talking to their medical team about both topics.

In addition, the lack of communication was reflected in the fact that 34% of the surveyed population said that their doctors did not inform them that maintaining an undetectable viral load (a quantity of virus less than 200 copies/ml of blood) prevents the transmission of the virus to sexual partners. Within this group, heterosexual men received this information the least during their care.

Community support

To address communication problems, the survey suggests that people with HIV approach mutual support groups or civil society organizations that help them build their confidence to speak more openly with health professionals, in order to handle treatments better.

So now you know, it’s time to start changing that hierarchical relationship that usually exists between medical staff and service users. Seek to open the dialogue with your medical team; asking your questions and expressing your opinions does not have to be considered something “reckless” or “daring”. After all, it is about your health.

And remember that starting antiretroviral treatment as soon as possible and maintaining it is the key to living well with HIV. If you haven’t started it yet or if you suspended it and want to resume it, at AHF Latin America and the Caribbean we can help you. Locate our offices in your country or write us by Whatsapp and learn about all our services.