A question arises when we are at the heart of the lived conditions of the HIV file in Egypt, whether we are service recipients, providers, both, or activists in the medical or human rights fields. Amidst the efforts made and resources pumped, the truth of matters can be lost: Where are the challenges concentrated? Are the gaps related to resources and operational capacities, or does the structure and general vision for dealing with the virus face deeper challenges, connected to prejudice and social and institutional phobia?

In this article, I seek to re-read the scene to understand the relationship between law, policies, stigma, and the experience of medical service, focusing on the voices of people living with HIV (PLHIV), to see the gap between the numerical progress in indicators and their lived experience.

Methodology

This article is based on a descriptive, critical, and intersectional analysis founded on:

• Literature Review: UN reports, academic studies, civil society papers, and published documentation.
• Critical Analysis of Experience: Understanding the experience from its owners without inference or projection, to avoid fallacies, and to emphasize that each person’s testimony is respected and believed.
• Intersectional Analysis: Looking at the multiple dimensions of individuals (class, skin color, nationality, gender expression, race, educational level, psychological and health status, sexual orientation, etc.) to avoid stereotyping and enrich a holistic view.
• Analytical Objectivity: The analysis was built with ethical and cognitive sensitivity, adhering to analytical neutrality and avoiding bias.

A Glimpse into the Historical Context of HIV

Egypt began officially recording the first known HIV cases in 1986, prompting the establishment of the “National AIDS Program” in the same year for surveillance and service provision. However, studies show that most countries in the region, including Egypt, relied on “passive surveillance systems,” i.e., collecting data through voluntary reports from health facilities.[1]

This approach assumes the service achieves its goals merely by conducting the test, neglecting how the service is delivered and the recipient’s experience. This could impede data accuracy, as beneficiaries may feel threatened to share their opinions about the service, if given the chance. [2]

In the early 1990s, specifically in 1993, a limited outbreak was recorded in some kidney dialysis centers due to shared injection practices and inadequate sterilization procedures.[3] These incidents were a clear indication of infection risks within health institutions, highlighting the need for strict infection control protocols and the limited capacity of the health system for surveillance.

The official response gradually evolved, from mere case registration to adopting voluntary counseling and testing (VCT), then to providing antiretroviral therapy (ART). By 2008, the Ministry of Health (according to WHO reports) had registered about 2,393 cases since 1986 (including 859 AIDS cases) and 1,059 deaths.[4] These numbers are dangerous, because AIDS is an advanced stage resulting from not receiving treatment, whereas a person living with HIV (PLHIV) who receives regular treatment can live a healthy life. The high number of AIDS cases is an indicator of failure in accessing treatment.

Nevertheless, the warning remained that official figures might not reflect reality, due to weak surveillance systems and social stigma. A study published in PMC indicated that “the number of reported cases represents about half of the estimated cases” in Egypt.[5] By the second decade of the millennium, Egypt adopted new national strategies (like the 2021-2025 plan) with an international commitment to reach the (95-95-95) goals.[6]

However, Egypt’s official classification among “low-prevalence” countries—because the HIV prevalence rate is low, less than 0.1% (according to UNAIDS and Ministry of Health reports) [7]

—weakens the political will to adopt effective policies to confront the virus and is used as a basis for health policies that limit the scale of attention and support directed towards developing prevention and treatment services.

The Current Situation of HIV Services

The reality of the numbers shows a large discrepancy. While UNAIDS estimates the number of PLHIV in Egypt at about 56,000 (with a wide estimated range of 41,000 to 77,000) for 2025,[8] another study (Trends of HIV indicators) indicated the expected number by 2024 is about 39,325 (with a narrower range).[8]

This discrepancy reveals the impact of surveillance methodologies and estimation models. UNAIDS models are epidemiological estimates that gather and analyze available data, attaching a wide “uncertainty range,” [9]

which is an admission that the number is not precise at the individual level, but is the best possible estimate. But relying on these numbers alone hides the real gaps in access to services and the actual experience of PLHIV.

As a more specific example, a study published in April 2025 (from Assiut University Hospital) analyzed new cases between 2019 and 2023. 355 new cases were diagnosed, with an escalating annual increase (reaching 60.5% between 2022 and 2023). Most cases (79%) were aged 20-39, and 95.7% were male.

More seriously, the study showed follow-up challenges: only 6% returned for a second review, and only 48.9% of the local population started treatment. It was noted that social stigma and fear of disclosure contributed to loss to follow-up. Also, 62.2% of the wives of married males were not tested.[10]

This study, the first of its kind in a university hospital, poses a fundamental question: Do these numbers reflect a real increase, or just an improvement in a specific center’s detection capacity? In either case, it highlights the need to integrate lived experience to assess service efficiency.

And Where Are the Services Located?

Free testing and treatment services are available at government counseling centers (hotlines 08007008000 or 33152801 can be contacted).[11] But actual access remains limited for key populations due to social and economic barriers and transportation costs.

The Ministry of Health also provides free treatment to refugees and asylum seekers,[12] and has been implementing the “Test and Treat” strategy with local funding since 2017.[13] Despite the importance of local funding, challenges remain in infrastructure, lack of trained staff, and patient follow-up.

Here, the role of civil society organizations (CSOs) emerges. They have been working since the early 2000s with support from the Global Fund and UNAIDS, focusing on key populations (men who have sex with men, people who inject drugs, and sex workers) in major governorates.[14] Although these organizations reached over 20,000 people in 2023 (in collaboration with 11 local CSOs),[15] this impact remains limited compared to the actual need.

These CSOs face enormous challenges, most notably the restrictions imposed by the NGO Law (No. 149 of 2019). Although the law aims to organize the work, it is fraught with strict security and oversight controls: [16]

• Restrictions on political participation and community engagement.
• Broad powers for the Ministry of Social Solidarity in administrative and financial oversight, which can extend to dissolving the association.
• Near-impossible bureaucratic procedures for foreign funding, which cripple small CSOs and complicate the work of large ones.
• Oversight from CAPMAS (Central Agency for Public Mobilization and Statistics) on studies and research, restricting freedom of research.

These restrictions, along with reliance on external funding, threaten the sustainability of programs and create fragility in the community response. Poor coordination between the Ministry of Health and civil society also leads to loss of regular patient follow-up, exacerbating inequality in access to care.

Let’s Read from Below: The Experience from the Perspective of Those Living It

Qualitative literature indicates that accessing HIV services is not just a matter of infrastructure, but a product of a social, legal, and economic structure that produces clear differences in accessibility and quality of care.

Structural Stigma in Health Institutions: A study (Elsharkawy et al.) based on interviews with PLHIV in Cairo and Alexandria found that the majority expressed dissatisfaction: long waits, poor counseling, lack of information, and insensitive treatment. One participant said: “The doctor doesn’t look at me; he talks to the nurse about me as if I’m not there.” Another described the treatment as “cold” and “inhumane.” The study concluded that structural stigma leads to delays in seeking treatment and low adherence.[17]

Intersection of Stigma and Gender: Eight years earlier, research by the Population Council (2014) showed that women living with HIV faced rejection, negative treatment, and a significant lack of information about safe pregnancy and childbirth. One participant said: “I feel the doctor doesn’t see me as a human being, but as a source of infection.” Fear of stigma led them to hide their status and postpone treatment follow-up.[18]

Double Discrimination (Refugees and PLHIV): Another study (2010) on refugees (from Sudan, South Sudan, Ethiopia) showed they suffer from double discrimination: being refugees and infected. This exposes them to exclusion from government services and reliance on under-resourced international organizations. A refugee woman said: “Sometimes I go to the hospital and they tell me to go back to the Commission; we don’t treat foreigners here.”[19] This misinformation and withholding of information is a practice outside professional ethics and a violation of the law.

Behavior-Based Stigma (Key Populations): Reports indicate that key populations face compounded challenges. A 2023 study showed that 35% of healthcare providers prefer not to provide services to people who inject drugs, 48% to MSM, and 43% to sex workers suspected of being infected.[20] This produces a health service “conditional” on approval of the patient’s behavior.

Provider’s Perspective: In an attempt to understand the service provider’s viewpoint, a 2015 study found that 40% of them hold negative attitudes towards infected individuals, and that fear of infection is the primary driver of stigma, followed by poor training and lack of knowledge. The study confirmed that stigma extends to the family and workplace. One participant said: “People think you did something wrong to get infected, even if you were just a blood donor.”[21]

Practical Recommendations for the Current Gaps

Addressing the current gaps requires multi-level interventions (political, institutional, and operational) and the integration of PLHIV voices in policy formulation to ensure it aligns with lived reality.

For the Egyptian Government:

• Ensure complete confidentiality for all services and protect PLHIV data.
• Expand health infrastructure to all governorates, with mobile teams for remote areas.
• Train medical and social staff on safe and non-judgmental interaction, considering intersectional dimensions (gender, race, economic status).
• Implement clear accountability mechanisms for violations (discrimination, stigma, verbal abuse) and open channels for complaints.
• Amend legal regulations (Law 149) that limit the work of CSOs to enhance partnership.
• Provide counseling and psychological support according to WHO standards.
• Ensure refugees are fully aware of available services and facilitate their access.

For International Donors:

• Fund qualitative research covering all groups (women, youth, LGBTQ+, refugees) to understand real needs.
• Use research findings to pressure relevant authorities to fix gaps.
• Pump direct funding to expand access for key populations in all governorates.
• Support comprehensive prevention and health education programs (awareness, referral, prevention tools).
• Support counseling and psychosocial support programs to ensure treatment adherence.
• Integrate education on intersectionality and human rights into medical staff training.

For International NGOs (INGOs):

• Provide technical and financial support to local organizations to increase their capacity for socially and gender-sensitive services.
• Integrate community awareness activities with service programs for sustainable impact.
• Involve local communities and PLHIV in program design and implementation.
• Facilitate access to testing and treatment for marginalized groups (LGBTQ+, refugees) while protecting their privacy.
• Enhance community awareness with materials that respect the educational, cultural, and linguistic levels of different groups.

For Global Bodies (UN, WHO, UNAIDS):

• Provide recommendations to official institutions to amend laws that restrict civil society’s work.
• Provide international guidelines and standards to combat stigma and discrimination and ensure local compliance.
• Support the development of comprehensive national surveillance programs based on accurate and intersectional data.

[1] Sherine Shawky, Cherif Soliman, Kassem M. Kassak, Doaa Oraby, Danielle El-Khoury, and Inoussa Kabore, “HIV Surveillance and Epidemic Profile in the Middle East and North Africa,” Journal of Acquired Immune Deficiency Syndromes 51, Suppl 3 (2009): S83–S95, https://doi.org/10.1097/QAI.0b013e3181aafd3f

[2] N. T. Constantine, M. F. Sheba, D. M. Watts, Z. Farid, and M. Kamal, “HIV infection in Egypt: a two and a half year surveillance,” Journal of Tropical Medicine and Hygiene 93, no. 2 (1990 Apr): 146-150, https://pubmed.ncbi.nlm.nih.gov/2325196

[3] El Sayed, N. M., P. J. Gomatos, C. M. Beck-Sagué, U. Dietrich, H. von Briesen, S. Osmanov, J. Esparza, R. R. Arthur, M. H. Wahdan, and W. R. Jarvis. “Epidemic Transmission of Human Immunodeficiency Virus in Renal Dialysis Centers in Egypt.” The Journal of Infectious Diseases 181, no. 1 (January 2000): 91–97. https://doi.org/10.1086/315167

[4] World Health Organization Regional Office for the Eastern Mediterranean. “HIV/AIDS.” World Health Organization Regional Office for the Eastern Mediterranean. Accessed October 19, 2025. https://www.emro.who.int/egy/programmes/hiv-aids.html

[5] Shawky et al., “HIV Surveillance and Epidemic Profile in the Middle East and North Africa.”

[6] UNAIDS. “Egypt HIV National Strategic Plan 2021–2025.” UNAIDS, 2021. https://hivpreventioncoalition.unaids.org/sites/default/files/attachments/egypt_hiv_nsp_2021-2025_final.pdf

[7] Joint United Nations Programme on HIV/AIDS (UNAIDS). Country Progress Report – Egypt 2020. Geneva: UNAIDS, 2020. https://www.unaids.org/sites/default/files/country/documents/EGY_2020_countryreport.pdf

[8] Joint United Nations Programme on HIV/AIDS (UNAIDS). AIDS, Crisis and the Power to Transform: UNAIDS Global AIDS Update 2025. Geneva: UNAIDS, 2025. https://www.unaids.org/sites/default/files/2025-07/2025-global-aids-update-JC3153_en.pdf

[9] Joint United Nations Programme on HIV/AIDS (UNAIDS). “Annex 2: Methods for Deriving UNAIDS HIV Estimates.” The Path That Ends AIDS: UNAIDS Global AIDS Update 2023. Geneva: UNAIDS, 2023. https://www.unaids.org/sites/default/files/media/documents/2023-unaids-global-aids-update_annex2_en.pdf

[10] El-Gibaly, Omaima, Doneez Amir Eskander, and Mariam Taher Amin. “Trends in Newly Diagnosed HIV Cases at Assiut University Hospital, Egypt.” Discover Public Health 22 (2025): 133. https://doi.org/10.1186/s12982-025-00525-6

[11] UNICEF. 2025. “Testing and Treatment.” UNICEF Egypt. https://www.unicef.org/egypt/testing-and-treatment

[12] UNHCR. 2025. “Health Services.” UNHCR Egypt. https://help.unhcr.org/egypt/en/health-services/health-2/

[13] UNAIDS. ” Country Progress Report 2020.” Global AIDS Monitoring 2020. Geneva: UNAIDS, 2020. https://www.unaids.org/sites/default/files/country/documents/EGY_2020_countryreport.pdf

[14] UNAIDS, “Egypt – Country Profile,” UNAIDS, https://www.unaids.org/en/regionscountries/countries/egypt

[15] Joint United Nations Programme on HIV/AIDS (UNAIDS). “Global AIDS Monitoring.” https://www.unaids.org/en/global-aids-monitoring

[16] UNAIDS. Egypt HIV National Strategic Plan 2021-2025. Geneva: UNAIDS, 2021. https://hivpreventioncoalition.unaids.org/sites/default/files/attachments/egypt_hiv_nsp_2021-2025_final.pdf

[17] Elsharkawy, A., M. R. Salem, N. Asem, et al. “Perceived Stigma and Healthcare Services in Healthcare Settings Among People Living with HIV in Egypt: A Qualitative Study.” Trans. R. Soc. Trop. Med. Hyg. 116, no. 9 (2022): 868–873. https://doi.org/10.1093/trstmh/trac028

[18] Oraby, Doaa, and Nahla G. Abdel-Tawab. Sexual and Reproductive Health of Women Living with HIV in Egypt: Unmet Needs and Unfulfilled Dreams. Cairo: Population Council, 2014. https://knowledgecommons.popcouncil.org/departments_sbsr-rh/961/?utm_source=chatgpt.com

[19] Hussain, Reham. HIV Services for Refugees in Egypt: An Evaluative Study. Master’s thesis, American University in Cairo, 2010. https://fount.aucegypt.edu/etds/1376/

[20] Aziz, Mirette M., Shaimaa S. Abdelrheem, and Heba M. Mohammed. “Stigma and Discrimination Against People Living with HIV by Health Care Providers in Egypt.” BMC Health Services Research 23 (2023): 663. https://doi.org/10.1186/s12913-023-09676-1

[21] Lohiniva, Ali, et al. “HIV Stigma Toward People Living With HIV and Health Care Providers in Egypt.” Journal of the International Association of Providers of AIDS Care 14, no. 6 (2015): 537–541. https://doi.org/10.1177/2325957414564906