Women and HIV
Meaningful engagement of women with HIV or affected by HIV in Europe
The empowerment of women living with or affected by HIV in Europe
According to statistics, more than 50% of PLHIV around the world are women. Official data on EU level show that women represent up to one third of new diagnoses of HIV in Europe, which differs by region but in East Europe HIV remains complex, imposing unique challenges for women living with or exposed to the virus.
Although small, the continued numbers of cases infected through mother-to-child transmission indicate that greater efforts are needed to address these entirely preventable cases still occurring in some EU/EEA countries. Still in Europe, especially, in EEA region women are one of the most vulnerable groups to HIV; 62% of women in Kyrgyzstan and 84% of women in Azerbaijan who inject drugs, also engage in sex work. They often experience gender based violence, particularly from the police. 
In Central Asia, HIV prevalence is estimated to be 20 times higher among female sex workers (FSWs) who also inject drugs.
Despite biological differences between women and men, there are few specific data to guide the care and treatment of women with HIV, largely because women have been historically under-represented in clinical trials. Consequently, many treatment guidelines contain minimal advice on their care:
- only 19% of women take part in clinical studies of antiretroviral medicines
- only 38% of those involved in vaccine trials
- only 11% of those involved in cure studies
Evidence suggests certain key issues women living with HIV are facing in Europe:
- Lack of gender specific data, low enrolling and underrepresentation of women in clinical trials and lack of involvement in decision making;
- Lack in treatment literacy and research advocacy skills;
- Lack of understanding of research and the benefits of involvement and support regarding involvement;
- Lack of PMTCT programs, access to services (gynecologist, child delivery), support groups (women only spaces);
- Late HIV diagnosis in women;
- Stigma, discrimination and fear of disclosure;
- Lack of access to health education with a fear of disclosure leading to stigma and discrimination;
- Number of other aspects that play an important role in health such as ageing, gender based violence and austerity measures;
- Gender differences in treatment adherence;
- Side effects such as as high level of toxicities: rashes, lactic acidosis, pancreatitis and fat accumulation;
- Link to body weight, liver function, drug metabolism, absorption and clearance, which can result in different treatment responses within pharmacokinetics and pharmacodynamics.
Another important reason why women need more focused research is because women are biologically, and socially, very different from men. Female bodies and roles change dramatically throughout the lifespan from onset of puberty, through the reproductive years, to the menopause. Focus on women and hormonal changes should include transwomen who also have to use hormones during transition.
Overall aim: to achieve better representation of specific women’s needs within social and clinical science through increased awareness, identified advocacy needs and policy recommendations
- To identify and raise awareness regarding clinical and psychosocial unmet needs of women living with HIV throughout life cycle (body and social function change);
- To increase positive women’s treatment literacy and empower to work collaboratively with researchers in designing, implementing and evaluating research;
- To provide networking opportunities with other European organisations for establishing collaborative efforts to advocate for representation and priorities of positive women;
- To establish a database of positive action by women within their communities which can be built upon through positive advocates.
- Mapping gaps, unmet needs, best practises and possible solutions: Producing resource repository providing the latest research on medical and psychosocial aspects of HIV among women living with HIV, guidelines, recommendations, and main initiatives taking place in this domain across EU (to be used for development of advocacy activities).
- Webinars: Developing distance –learning tools for advocates on treatment literacy and research advocacy skills concerning the unmet specific women’s needs
- European workshop with focus on women with HIV or affected by HIV: a multi-country workshop would be organised to discuss the results of mapping, challenges and policy advocacy options to overcome them.
- Project sharing: EATG will share project images, messages, experience widely among its members and partners through its website, newsletters, social media and the above mentioned representations and events. EATG will track activities across the participating countries and share good practices.
- Project dissemination: EATG will use its representations in various decision making bodies and at various meetings (meetings, conferences, representations etc.) to disseminate key project messages and good practices.
By the end of the project positive women advocates:
- Will develop activities and take action for better representation of women’s specific issues related to HIV within social and clinical science.
- Will identify needs and next steps for community advocacy related to HIV and women across Europe.
- Will be able to articulate clear demands to relevant stakeholders at national and international levels.
- Will have written policy recommendation addressing need for women’ representation in clinical trials and decision making bodies as well as the medical, psychological and social needs specific for women living with HIV
- Will build positive women support network across Europe for self-empowerment
- Will provide platform to building partnerships and collaboration across Europe (workshop)
- Will initiate joint position statement to influence policies in EU to keep women on the HIV agenda in different aspects of HIV –prevention, aging, research, access to services, education, stigma
Contact person : Aisuluu Bolotbaeva (EATG membership) (firstname.lastname@example.org)
 Ref: European Centre for Disease Prevention and Control. Annual Epidemiological Report 2014.
 A systematic review of the inclusion (exculsion) of women in HIV Research from clinical studies of antiretrovirals to cure strategies. JAIDS, Journal of Acquired Immune Deficiency Syndrome.
For further information please contact Projects Officer Mariana Vicente