FRIDAY FILE: At a recent international conference in Tunis[1] on Sexual and Reproductive Health in Arab Countries, AWID met Jocelyn DeJong, professor in the Faculty of Health Sciences at American University in Beirut and coordinator of the Reproductive Health Working Group[2], to learn more about their research on the role of associations in fighting HIV stigmatization.
By Mégane Ghorbani
According to UNAIDS estimates, approximately 260,000 people in the Middle East and North Africa (MENA) are infected with HIV[3]. Between 2001 and 2012, the number of new infections increased by 52%, which places the region in first place in terms of the speed of HIV[4] growth.
DeJong’s research focuses on the roles of associations in the fight against the stereotypes on people living with HIV in Sudan and Lebanon[5]. Sudan “at the time was one of the few countries with associations of people living with HIV. Now there are many in Algeria and in Morocco, but in Mashriq[6], it is a relatively new development."
Important to note is that there is a gap between official figures provided by the national ministries and estimates published by international organizations. According to Dejong, the data from the governments “states the number of patients who tested positive, however the data from the World Health Organization (WHO) and UNAIDS, are estimates based on the available data and those figures are much higher”. This highlights the gap between HIV testing and true number of infected people, especially women.
Gaps in Testing Women
In order to provide new research avenues, Dejong highlights the problematic fact, that in the Maghreb/Mashriq region “very little attention is devoted to the vulnerability and specific needs of women (whether married or unmarried) - in regards to HIV, whether it be in setting research agendas or developing health policies/programs”. Until recently, and in contrast to Sub-Saharan Africa where women are disproportionately affected, figures showed that the proportion of HIV-infected women in the region was much lower than for men[7]. “In this region, at the beginning of the epidemic, there was one infected woman for 7-8 men. Today, it's closer to parity as a result of the feminization of the epidemic in Morocco for example.” In Morocco, women now constitute 52.4% of infected patients[8]. In Egypt, however, UNAIDS estimates in 2012 indicated that 1,400 of the 6,300 people over 15 living with HIV are women[9], putting the female infection rate at only 22%. Dejong believes the differences in country figures could be attributed to obstacles in detecting HIV cases among women.
Firstly, there are greater social barriers for women compared to men, preventing access to testing and care. For this reason, HIV-infected women encounter discriminatory attitudes in their entourage, from health care professionals and the wider society. Moreover, “reproductive health services in these countries seldom provide HIV prevention and counselling programmes and prevention of mother-to-child transmission (PMTCT) programmes are still relatively rare”. The risk of HIV transmission from an infected mother to her child is 30%, either during pregnancy, childbirth or breastfeeding[10], however, according to the UNAIDS 2013 World Report, in Saudi Arabia, Bahrain, Egypt, Libya, Somalia and Tunisia, health centres seldom provide PMTCT services, and in Jordan there are none whatsoever. Without administration of antiretroviral treatments to the mother and the child, it’s impossible to reduce the risk.
In addition, while there is mandatory testing in the region for migrants and prisoners, these groups are mainly composed of men[11]. Between 1987 and 2007, these groups constituted 93% of HIV tests, compared to only 1% of tests done for sex workers[12]. As a result, women's participation in Voluntary Counselling and Testing (VCT) is very limited and one study found that only 30% of VCT users in Lebanon are women[13]. According to DeJong, this has led to a “lack of data at the national and regional level on the prevalence of HIV among women. And if women are more stigmatized for using testing services it will be difficult to identify cases of HIV among women”.
Stigmatisation that complicates access to care for HIV-infected women
According to Professor Laith J. Abu-Raddad[14], the most important risk factor contributing to HIV infection among women in the Maghreb/Mashriq region is marriage, because infection is more often detected among married women. This shows that the monitoring system is not effective in detecting the other cases of infections among unmarried women. The taboo fostered by the criminalisation of sex workers in 116 countries/ territories around the world; as well as stigmatisation of sexual intercourse outside marriage, creates barriers for women to access the care they need. As Dejong highlights, “it is the same with youth because if they have sexual intercourse outside of marriage and don't participate in voluntary testing, there may be undetected cases.”
In addition, HIV-positive women confront an additional fear - for their children's health, including HIV transmission to the newborn, which is criminalized in more than 60 countries around the world. Because of certain cultural and religious norms, as well as the prevalence of violence against women in the region, they face additional exclusion, compared to men, in society. “In Jordan, we see women living with HIV who have fertility problems. Doctors then refuse to give them access to fertility services. There are often more general problems of access to gynaecological services for these women.” But, given that HIV weakens the immune system, gynaecological infections are one of the common symptoms for infected women. The taboo against them is at the root of violations of their right to health via access to care. In this respect, the 2012 Oslo Declaration on HIV Criminalisation states “the criminalisation of HIV non-disclosure, potential exposure and non-intentional transmission is doing more harm than good in terms of its impact on public health and human rights”.
Challenges for associations of people living with HIV
Little data exists on female engagement within associations of people living with HIV. “We need research on the status of HIV-positive women in this region similar to what was carried out in Thailand and South East Asia,” explained DeJong. Through her studies in Sudan the researcher notes, that in spite of a female presence, “the majority of people active in associations were men.” MENA-Rosa is the first regional network, founded in 2010, that focuses on HIV-infected women in the Maghreb[15]-Mashriq region. As MENA-Rosa member, an Algerian woman living with HIV expresses: “I hope that in the future people will be more open and that people living with HIV will not be put in margins of society. We did not seek to catch this disease, we did not choose to have it.”
Associations of people living with HIV are confronting multiple challenges. The first, according to DeJong, is related to the difficulty for their members speaking out in public and the fear of being recognized by social peers, because of the stigmatisation mentioned previously. “In Lebanon, people did not dare present themselves in public, while in Sudan people living with HIV dared to speak publicly with others. Lebanon has a much smaller population where everyone knows each other and thus people fear being recognized.”
Another difficulty for these associations relates to their members' poverty levels. “The question of unemployment is very important. Many employers require mandatory testing and if employers are prejudiced against people with HIV, people can either be refused jobs or lose them. They face economic challenges which influence access to care. Even if treatment is free, we must take into account the cost of transportation and the additional cost of proper nutrition and diet, which is not supported. All of this contributes to economic problems. Without funds to find employment or supplementary incomes, the result in Jordan, is that people cannot contribute to association activities. Associations are then rather weak as members lack time and money to contribute and even finding means of transportation to meeting places becomes a hurdle.”
Lastly, funding is a challenge because most of it goes to accessing treatment, with institutional funding for the work lacking, resulting in the unsustainability of associations. On funding more generally, a recent report HIV and AIDS in the Middle East and North Africa reveals, that despite wealth disparities between the various countries of the region, a common problems is lack of investment in HIV and AIDS issues.
In spite of these challenges, these associations have a major role to play because, as Dejong concludes, “there will be no change in the conversation on HIV if there are not associative movements representing people who live with HIV”. In addition to having a significant leadership role in increasing public knowledge about HIV, and in denouncing the economic and social marginalization of HIV-infected persons, associations can facilitate the identification of new HIV cases and help those infected access care and treatment. Overcoming the multiple stigmatizations experienced relies on building community and solidarity amongst those concerned and gathering wider support, which will make concrete the universal right to health.
[1] From 23-24 May, 2014, organized by the Institut de Recherches sur le Maghreb Contemporain (Contemporary Maghreb Research Institute) and the Tawhida Ben Sheik Group
[2] Includes researchers from Mashriq and Turkey
[3] Report on the Global AIDS Epidemic, UNAIDS, 2013.
[4] HIV and AIDS in the Middle East and North Africa, Population Reference Office, 2014. According to DeJong, the speed of growth is faster than Sub-Saharian Africa only because the starting level is low (less than 1%).
[5] DeJong, J., Mortagy, I.,& Ibrahim, R.H.(2013).The challenges of forming associations of people living with HIV in low prevalence and high stigma contexts: the case of Sudan and Lebanon. In Smith, R. A. (Ed.). (2013), Global HIV/AIDS politics, policy, and activism: Persistent challenges and emerging issues: Vol. 3. Activism and community mobilization. Santa Barbara, CA: Praeger.
[6] Mashriq is taken here in its widest definition, referring to all Arab countries located between Maghreb and Iran (Sudan, Egypt, Lebanon, Palestine, Jordan, Syria, Arab peninsula and Iraq).
[7] Abu-Raddad L., Akala F. A., Semini I., Riedner, G., Wilson, D., & Tawil, O. (2010) Characterizing the HIV/AIDS epidemic in the Middle EaSt and North Africa: Evidence on levels, distribution and trends. Time for strategic action. Middle East and North Africa HIV/AIDS epidemiology synthesis project. Washington, DC: The World Bank.
[8]Mumtaz, G. et al. (2013) The Distribution of new HIV infections by mode of exposure in Morocco. Sexually Transmitted Infections, February.
[9] Report on the Global AIDS Epidemic, UNAIDS, 2013
[10] Politique générale : Criminalisation de la transmission du VIH, ONUSIDA, 2008.
[11] Hermez, J., Petrak, J., Riedner, G and Karkouri, M. (2010) A review of HIV testing and counseling policies in the Eastern Mediterranean Region. In AIDS, special supplement on the Middle East and North Africa.
[12] Middle East and North Africa Regional Report on AIDS, UNAIDS, 2011.
[13] Awad, Amr. (2009) Can Data Collected by AIDS Voluntary Counseling and Testing Centers in Lebanon be used for Program Planning and Evaluation Purposes? MS Population Health Thesis, Faculty of Health Sciences, American University of Beirut.
[14] Abu-Raddad L., Akala F. A., Semini I., Riedner, G., Wilson, D., & Tawil, O., Ibid.
[15] North West Africa, west of Egypt, composed of Mauritania, Morocco, Tunisia, Algeria, and Libya. Maghreb Union was established in 1989 to promote cooperation and economic integration in a common market.