Although HIV has been known for years, there is still a lot of misinformation or lack of information about the disease and how it affects women. The disease goes unnoticed in this group, especially in older women, despite the fact that 16% of HIV cases in Spain are among women. Not only are women disregarded in preventive actions, their low tolerance to treatments and their effects, both on their health and their quality of life, are not taken into account. All of this leads to a late diagnosis, lower adherence to treatment and, therefore, a worse progression of the disease.
Dr. Berta Torres: “We have to ensure that the medication is well tolerated by everyone living with HIV, regardless of their sex”
Women living with HIV are diagnosed late and they are far less tolerant to treatment than men. The lack of individualization in the management of the disease, from prevention to treatment, means that the prognosis for women is worse.
She did her PhD on HIV and currently forms part of the HIV-AIDS Unit, which treats over 6,000 people living with HIV, over 800 of whom are women.
First of all, when we talk about HIV in general it is very important to contextualize the geographical area. When we talk about a woman or a man, or a heterosexual man or a man who has sex with other men, it is very important to know whether we are talking about Europe, Africa or Latin America, etc., because the casuistry is different in each place. So, if we are talking about women, this must be taken into account too.
For many aspects: the means of transmission are different, the effect both in terms of figures and stigma on population group is different, the type of monitoring that is carried out in each region, etc. All this means that the differences are important and, therefore, studies at all levels are important.
"The differences in HIV in women are due to biological sex and gender."
The differences in women are determined by biological sex and gender. When we talk about biological sex, we are referring to the sex we are assigned at birth. Depending on the sex, there are biological differences, especially at a hormonal and genetic level, which means we have different responses to different biological agents of aggression.
Anatomically, we are different. For example, in vaginal penetration the risk of transmission is greater in women than in men. There are also unique characteristics of the female genital tract that make us more vulnerable to infection. For example, according to some studies, if we have an impaired microbiota, undiagnosed sexually transmitted infections or are taking hormonal treatment, we have a higher risk of acquiring HIV.
No, it behaves differently in women. We know that the immune response in women is much stronger and it is capable of controlling the virus better than in men. However, this very immune system is also responsible for the fact that, if we don't treat it early, the disease evolves more quickly.
Yes, here we are talking about the female gender, including both trans and cis women, and we are talking about social and cultural attitudes that make us act in one way or another when faced with the same situation.
Here, the context in which we find ourselves is important too. However, in general, the female gender is related to less empowerment and to a more frequent role of a carer. Therefore, we also have a different view of illness, where we do not want to tell people we are ill in order to preserve our privacy, to avoid worrying those we care for and, in short, to continue caring. This means that we have a different approach to illness and that it is harder for us to go to the doctor and tell them what is wrong with us.
There are many studies that discuss stigma in HIV, since it is a disease that is highly stigmatized, depending in particular on who you are and where you are. In the case of women, being a sexually active person is considered a criminal offence. Even women themselves think that they will be viewed as “dirty” or labelled as at-risk groups. In addition to the external stigma, there is internalized stigma. The feeling of guilt, that “I deserve it” - and this stigma has been seen to be much stronger in this group.
If we are talking about Western Europe, where the group that is most affected is men who have sex with other men, groups such as women or men in heterosexual relationships are not well represented. This means that they are left out of campaigns and preventive actions and, therefore, that it is not known that this disease can affect everyone and all age groups.
Nevertheless, there are non-governmental organizations and other associations that focus specifically on people living with HIV, and on women in particular. They carry out very valuable work and provide a great deal of support for women, as in the case of Creación Positiva in Barcelona, which I think deserves a mention because they have been working for many years now and do a fantastic job.
"Late diagnosis affects women more, especially older women, and also men in heterosexual relationships."
It is essential for HIV to be diagnosed early for two reasons. Firstly, because if we diagnose HIV early it preserves the immune system and prevents clinical deterioration. Secondly, for the public health benefit to third parties. When a person is undergoing treatment, and the viral load is not detected in the blood, the HIV is not transmitted. So, when a person does not know they have the virus, they can transmit it. Moreover, late diagnosis has very significant consequences on mortality and morbidity in patients. It has been shown that the one-year mortality among people diagnosed late is three times higher. In addition to the poorer prognosis, they have a higher proportion of HIV-related illnesses.
So, once again, depending on where we are, late diagnosis affects some groups more than others. For example, in our environment, it is women, older women and heterosexual men.
I think that the stigma is also due to a lack of information People need to be empowered to destigmatize HIV. All the information we have on the disease must be shared. In other words, it is not possible that today people have the same perception of HIV as they did in the 1980s. And that they don't know that a woman with HIV can get pregnant without any danger to her baby, or can have unprotected sex – as long as the disease is controlled and monitored by a professional.
In order to improve early diagnosis, it is also important not to just run campaigns linked to specific groups on specific days, such as Pride Day, but rather for them to be seen constantly in the environment and aimed at everyone regardless of sex, age, profession, etc.
Yes, in fact there is a study that shows that, in primary care above all, simply because they are women, there is less demand for HIV testing, even if there are indications that a person may be at risk. It doesn’t cross the doctor’s mind to ask for the test. This is particularly apparent in women of a certain age. They are not thought to have an active sex life, and situations are not taken into account such as whether they have been widowed, are separated, have open relationships, etc. and they are totally left out of the screening process. I also believe that this is changing, but I think it is something that happened in the last decade.
We must also continue to stratify the data by gender in all studies, in order to highlight the differences between sexes and populations. Also, now that we have more and more information about these differences, it’s time to take action.
In the studies carried out at the unit, we have detected a progressive increase in the number of people of Latin American origin living with HIV. Women of Latin American origin in our area are diagnosed on average 7 years earlier than women born here. Moreover, women in general are diagnosed at a more advanced stage than men, which leads to a poorer prognosis. This could provide us with information on possible prevention strategies in this group, for example.
Moreover, there is also the Hospital Clínic Gender and Health Working Group, which looks at how sex and gender affect different diseases and acts accordingly.
There are many studies that describe how women have more adverse affects to antiretroviral treatment, with more anxiety, depression, memory and concentration problems, and headaches. They also have more gastric intolerance, more diarrhoea, nausea and joint pain. All this has made women more likely stop the treatment. It is true that the latest drugs seem to have similar tolerance in men and women, but there are some aspects that have not improved.
Moreover, you have to add to this what we said about gender. In general, we women look after our children, our parents, go to work, etc. And we don’t prioritize going to the doctor. All this affects adherence.
But apart from all that, what we have done is to investigate what we can do. Do we have to create different regimens with lower doses, do we have to give different medicines?... In other words, what we have to do is to ensure that the medication is equally or well tolerated by everyone living with HIV, regardless of his or her sex. And these studies are not there. There are lots of studies that describe the different types of tolerance, but there are few that have looked at what we need to do. What we have to take into account now is how we have to deal with the adverse effects in the woman’s life: her maternity, how she will manage to attend medical appointments, etc.
"What people should know is that everyone is at risk."
If we just focus on efficacy and not on the adverse effects, the treatment is equally effective in women and men. Now, the prognosis does vary if we include the adverse effects and their impact on adherence.
What people should know is that everyone is at risk. So, what we have to do is to get tested as frequently as we think fit depending on the relationships we have over the course of our life. And to get tests you can go to your primary care doctor, a sexual health clinic, an NGO, and some pharmacies.