Blood:Water has been working in the field of HIV response since we opened our doors in 2004. However, we realize that some of the concepts and terms that are widely used in the field of HIV may not be clearly understood by people who do not work in this field. The terms are sometimes used interchangeably by people in conversation, but many aren’t sure what the difference between HIV and AIDS is, or how to speak about them in a way that brings dignity to the person affected. We hope this blog post will help to educate, simplify and explain language and terms around HIV work, what it really is, and how it develops over time.
WHAT IS HIV?
There has been an incredible amount of medical advancement since 1981 when HIV and AIDS were first officially identified as they spread rapidly throughout the world. For years, a positive HIV test was considered a death sentence. But now we know that with proper care and support, people living with HIV can have the same life expectancy as someone who is HIV negative, living long, healthy, and full lives without ever developing AIDS!
HIV continues to be a serious health issue for communities around the world, with an estimated 37.6 million people living with HIV at the end of 2020. Due to gaps in accessing treatment and prevention services, this same year 690,000 people died from HIV-related causes and 1.5 million were newly infected (WHO).
The human immunodeficiency virus, more popularly known as HIV, “attacks cells that help the body fight infection, making a person more vulnerable to other infections and diseases,” (HIV.gov). When a person is newly infected, they may develop flu-like symptoms as an immediate immune response to the virus. After which, a person will likely be asymptomatic for many years (as little as 2 or as many as 15).
During the time of asymptomatic infection, the virus uses the body’s own immune system to replicate itself. This weakens the immune system over time, preventing it from being able to fight illnesses such as the common cold or tuberculosis (TB). If left untreated, the body can’t fight off other infections. This weakened immune response is what ultimately causes death, via common illnesses associated with advanced HIV infection called opportunistic infections.
You may have heard that HIV is spread through bodily fluids, but the reality is, it is only spread through some of them, specifically blood and secretions from sexual organs, or from mother-to-child during pregnancy, delivery, or breastfeeding. This is why HIV transmission is primarily through sexual contact, but also happens through blood transfusions and the use of unsterilized medical equipment (far more frequent in countries with fewer resources). You CANNOT transmit HIV through saliva, tears, sweat, touching, sharing food, drinks, utensils, hugging, kissing, sharing a bathroom, and so on.
So that’s a brief overview of HIV – now let’s talk about the difference between HIV and AIDS, as they are two separate things.
WHAT IS AIDS?
AIDS (acquired immune deficiency syndrome) occurs at the late stage of HIV infection, when the body’s immune system is badly damaged because of the virus. The word ‘syndrome’ refers to multiple infections at the same time. An HIV infection is classified as AIDS when the immune system is weakened to the point that the person has two or more other illnesses they are fighting. It can take a long time for someone with HIV to develop AIDS, but each person’s situation is unique.
In the U.S. and many other countries with widespread access to treatment, most people who are living with HIV do not develop AIDS. This is due to the fact that they are able to consistently keep their viral loads low through adherence to treatment, which also means that they are no longer able to transmit the virus to others (HIV.gov).
SO WHAT’S THE DIFFERENCE BETWEEN HIV AND AIDS?
The difference between HIV and AIDS is that not everyone with HIV will develop AIDS, but everyone who develops AIDS was initially infected with the HIV virus, and did not receive the treatment needed to manage their condition.
Diagnosis
Testing for HIV is available in two forms. The first and most widely used is the antibody test which detects antibodies produced by the immune system within 28 days of infection. If the antibody test is positive, a health care provider will often follow that with an antigen test for confirmation. An antigen test is testing for the presence of the virus itself. HIV rapid testing is a widely available antibody test that can be done in the privacy of your own home. It is a very helpful alternative for people who can’t access a facility, though it does not provide a definitive diagnosis (WHO). In sub-Saharan Africa, the most common way to find testing is through provider initiation, community-wide efforts, workplace and door-to-door testing, and increasingly useful rapid tests (Avert).
How is HIV Managed?
There is not yet an effective cure for HIV, however antiretroviral therapy (ART) enables people living with HIV to live long, healthy lives! This treatment is typically administered via oral medication, and it works by preventing the virus from replicating in the body. This in turn protects the immune system and prevents the progression of HIV to AIDS. In fact, this treatment is so effective in managing HIV that when people adhere to their ART treatment they can achieve viral suppression. This means that, although the virus is present within the body, it’s not replicating enough to be detected and cannot be transmitted to others. This is why receiving testing and treatment as early as possible and maintaining adherence to treatment makes it possible for us to fight this epidemic. Treatment allows the fullness of life to be returned to the millions of people this virus impacts. Without treatment, people with AIDS typically survive about three years, but even then, ART can still help and save lives (HIV.gov).
HIV IN SUB-SAHARAN AFRICA
70% of the world’s poorest communities are in sub-Saharan Africa, and poverty represents a major barrier to health and prevention education, medical care, and support. In 2019, the region had just under half of new HIV infections globally (800,000). Seven countries contributed more than half of these new infections, including three of the four countries Blood:Water currently works in: Uganda, Kenya, and Malawi (Avert).
Approximately 440,000 people died of AIDS-related illnesses in the region in 2019. Tuberculosis (TB) is the most common illness among people living with HIV, making up more than half of all AIDS-related deaths worldwide. ART treatment and linkage of TB and HIV services make a big difference, as does early detection and screening (Avert).
The good news is that since 2000, the investment to tackle AIDS has proved effective with well over two million people receiving AIDS treatment! 65% of people living with HIV in eastern and southern Africa in 2019 achieved viral suppression, and less than two out of ten people living with HIV were unaware of their status (UNAIDS). This means more people are able to “care for their children, return to work and lead meaningful, productive lives… By working to fight diseases like AIDS, tuberculosis, and malaria, we can contribute to fighting poverty, promote social development and increase equity in health care. That is globalization with a human face. That is globalization that will benefit all,” (UN.org).
REALITIES AMONG KEY GROUPS IN SUB-SAHARAN AFRICA
While HIV is largely under control in the US and other developed countries, it is still at epidemic levels in countries around the world. Blood:Water focuses our efforts in sub-Saharan Africa as it bears nearly 70% of the global burden of HIV. (This is why the statistics and information we share is centered around the effects of HIV in this region.) People living with HIV continue to experience stigma around the world, but education, advocacy, and treatment have made great progress in overcoming stigma. People living with HIV can access treatment and support readily and privately, allowing them to continue their lives largely unaffected.
However, stigma continues to be an enormous problem in sub-Saharan Africa. Cultural beliefs and practices along with limited access to information and education combine to create an environment where stigma is one of the greatest barriers to accessing treatment. Many people refuse to be tested fearing that they will lose employment, family, friends, and more should they test positive. And even when they are brave enough to be tested, the necessity of remaining consistent with daily medications can be too much without a strong support system. These issues, along with legal barriers that can prevent them from accessing HIV services, increase their risk and create difficulties in accessing “effective, quality, and affordable HIV prevention, testing, and treatment services,” (WHO).
EXAMPLES OF KEY GROUPS
Young women
In 2018, HIV prevalence among young women 15-24 years old in eastern and southern Africa was more than double that of young men (1.6 million vs 660,000). The reasons behind this are complex. Studies from Zimbabwe and Uganda found that young married women with partners sixteen or more years older had a three times greater risk of HIV infection than their counterparts. A 2014 UNAIDS assessment in the region found they face higher levels of spousal physical or sexual violence than other women, which also heightens HIV risk.
Knowledge among young people about HIV is improving, but it remains low in a number of countries, especially for young women. In Kenya, knowledge of HIV prevention is relatively high for this group, but only 64% of young men have adequate knowledge about the virus, and 57% of young women. In addition, half of the region’s countries impose age restrictions on buying condoms (Avert).
Children
In 2018, 1.1 million children (0-14 years) were living with HIV in the region. The main route for HIV transmission among children is mother-to-child transmission throughout pregnancy, birth, and breastfeeding, but it is also more common where there are high levels of child and forced marriage. In 2017, nine percent of women aged 20-24 had been married or in a union by the age of fifteen, 35% by eighteen. They are rarely able to assert their wishes, and all of these factors increase HIV risk (Avert). Additionally, there is a cultural reality of intergenerational relationships where an older man offers material and emotional support to girls as young as primary school age, in exchange for sex. This does not include marriage, rather, adult men capitalize on young girls who are living in extreme poverty.
HIV PREVENTION
As mentioned earlier, there is still no cure for HIV. However, one of the most important ways to address the HIV epidemic is through prevention which includes educating people about the virus, how it is transmitted, how to prevent transmission, and the difference between HIV and AIDS. Prevention should address primary risk factors, as well as the vital importance of testing and treatment adherence for people living with HIV.
A number of countries in Africa have conducted large-scale prevention programs, and national and regional road maps have been created since 2015 to accelerate combination HIV prevention services at local levels and increase investments. Often, new infections of HIV are prevalent among particular locations and populations, so some countries specify this in their plans. For example, in Kenya, 65% of new HIV infections are in nine of its 47 counties, so they started an HIV prevention roadmap targeting specific geographical areas and populations (Avert).
Antiretroviral drugs (ARVs) for prevention
Everyone living with HIV needs access to antiretroviral drugs, both to live and to reduce HIV transmission. Pre-exposure prophylaxis (PrEP) can be taken by an HIV-negative partner orally and daily to prevent acquisition of HIV, mainly for those at a substantial risk of HIV infection as part of a combination of approaches for prevention. South Africa, Kenya, Zimbabwe, Zambia, Uganda, Namibia, Mozambique, Mauritius, Lesotho and Botswana have all begun introducing PrEP, mainly through trials or demonstration projects, and around 84,000 people in the region took it at least once in 2018 (Avert).
The Dapivirine vaginal ring (DVR) offers modest HIV prevention, and has a good safety profile for women as an additional choice, especially those unwilling or unable to take PrEP daily. Post-exposure prophylaxis (PEP) uses ARVs (antiretroviral drugs) within 72 hours of exposure to prevent infection, and is most beneficial when provided alongside support services including counselling, first-aid care, HIV testing, and a 28-day course of ARV drugs with follow-up care (WHO).
Prevention of mother-to-child transmission (PMTCT)
Transmission of HIV from a mother to her child during pregnancy, labor, delivery or breastfeeding is called vertical or mother-to-child transmission (MTCT). Without treatment, rates of transmission can be between 15% and 45%. With treatment, however, the risk is almost eliminated if mother and baby are provided with ARV drugs as early as possible in pregnancy and breastfeeding. In 2019, 85% of the estimated 1.3 million pregnant women living with HIV globally received ARV drugs to prevent transmission to their infant (WHO).
Significant progress has been made in east and southern Africa. From 2010-2018, new HIV infections among children fell from 170,000 to 84,000 due to the rapid increase in PMTCT services. In 2019, 95% of HIV positive pregnant women received ART to protect their health and prevent HIV transmission to their infant, up from 50% in 2010 (UNAIDS). Progress could be further improved with point-of-care HIV testing for infants (early infant diagnosis), though 68.5% of at-risk infants received it in 2019, and this number is continuing to grow (UNAIDS).
Programs for young women and adolescents
In 2013, ministers of health and education committed to programs to address the barriers that prevent girls and young women from accessing services. Focuses include keeping girls in school, comprehensive sexuality education, girl-friendly sexual and reproductive health (SRH) services, eliminating gender-based violence and female genital mutilation, and economic and political empowerment.
The DREAMS program aimed to reduce HIV infections among adolescent girls and young women by 40% in a handful of countries between 2015-2018 by focusing on social isolation, economic disadvantage, discriminatory cultural norms, orphanhood, gender-based violence, and education. Data on its impact suggests communities or districts involved who had the highest HIV burdens when the program began saw new HIV diagnoses decline 25%-40% in 2017.
The UNAIDS and UNICEF’s All In to End Adolescent AIDS (All In) program also works to reduce new HIV infections among young women, motivating governments and partners to accelerate HIV response for adolescents. By 2018, it had resulted in more targeted prevention programming for adolescents, better data, more funding, and creating key roles for adolescents in the HIV response (Avert).
HIV TREATMENT
HIV can be suppressed by treatment regimens with a combination of three or more ARV drugs, despite the differences between HIV and AIDS symptoms. In other words, ART can be effective even in late-stage HIV, where two or more infections are present (AIDS). Current ART (antiretroviral therapy) doesn’t cure HIV but highly suppresses viral replication, which allows the immune system to recover and regain its capacity to fight off infection. Science is moving at a fast pace though, and two people have achieved a ‘functional cure’ through a bone marrow transplant for cancer with re-infusion of new cells that cannot be infected (WHO).
By June 2020, 26 million people living with HIV were accessing ART, steadily increasing as a result of great efforts by national HIV programs, civil society organizations, and international development partners. In 2019, 68% of adults, and 53% of children living with HIV globally received ART resulting in 15.3 million lives saved. 59% achieved suppression of the HIV virus, and between 2000-2019, new HIV infections fell by 39% and HIV-related deaths fell by 51%. Success depends on region, country, and population, as not everyone is able to access testing, treatment, and care (WHO).
Antiretroviral therapy has been scaled-up dramatically in east and southern Africa over the past decade. More women than men are on treatment, and men are less likely to participate in testing for HIV and more likely to interrupt or drop out of treatment. In 2018, 72% of all adult women with HIV were on treatment compared with 59% of men, and although men are less likely to acquire HIV, they are more likely to die of AIDS-related illness. This is partly due to harmful gender norms that prevent men from seeking help, accepting care, or admitting to their HIV status (Avert).
All of the countries in which Blood:Water is working have adopted the 2015 WHO guidelines to immediately offer treatment to all people diagnosed with HIV (Avert). However, the number of new people starting treatment in 2020 was far below the expectation due to the reduction in HIV-testing and treatment initiation and ARV disruptions caused by COVID-19 (WHO).
Barriers to HIV response in East and Southern Africa
1. Stigma and discrimination
As mentioned earlier, stigma and discrimination may cause a person living with HIV to hide their medication from family and friends resulting in missed doses. This leads to the possibility of developing drug-resistance and eliminating opportunity for suppression of the virus in their body. Many people fear loss of employment, family, friends, standing in the community, and much more should they receive a positive diagnosis, which keeps them from accessing testing, clinical services, and treatment maintenance. The virus can then spread prolifically among people whose fear keeps them silent rather than motivating them to pursue necessary care and support.
Cultural beliefs about HIV and AIDS have a huge impact on discrimination. Studies show that HIV-related stigma remains an issue in healthcare. 35% of countries with available data reported over half of respondents having discriminatory attitudes towards people living with HIV. In fifty countries, one in eight people living with HIV is denied health services because of stigma and discrimination.
2. The status of women
Women and girls face discrimination in access to education, employment, and healthcare. Men often dominate relationships, and gender-based violence is common in eastern and southern Africa, especially for young women. Approximately 30% of women in Uganda, 25% in Kenya, and 20% in Ethiopia and Malawi have experienced physical or sexual violence by an intimate partner in the past twelve months (Avert).
3. Legal barriers
An overly broad criminalization of HIV exposure, non-disclosure, and transmission continues to stigmatize, undermining public health initiatives and ultimately damaging HIV prevention (Avert).
4. Structural and resource barriers
Many lack access to medication or health care facilities for check-ups and case management. This is the case for a number of areas with high HIV prevalence, particularly rural areas, that lack necessary healthcare workers to address the issue (Avert).
Poverty is also a driving factor when it comes to barriers to HIV response. Families are unable to prioritize accessing health services, or even having money to cover transportation costs to a health facility, when they are unable to meet the basic needs of adequate food, water, housing, etc.
5. Data issues
Despite a variety of key populations comprising a disproportionate number of HIV cases, data on the span of some of these groups is inadequate. Interventions must address their needs to chart success of programs and improve consistency of care. Many countries don’t have the technical capacity, human resource availability, and coordination to track everyone across prevention and treatment services accurately. Data between 2000-2017 revealed widespread differences between the prevalence of HIV and AIDS across countries, highlighting the fact that important local differences are masked when examining at the country level (Avert).
BLOOD:WATER’S (OUR) APPROACH
There are a variety of ways to participate in the global response to HIV – providing medicines, increasing access to medical care, awareness and prevention education, and more. Blood:Water supports efforts that encompass community care and support: a broad categorization of HIV and AIDS services that comprehensively and holistically support people living with HIV, at both the household and community levels.
Psychological, social, cultural, material, and legal vulnerabilities may occur in the daily life of a person living with HIV. Care centered around the person and their family optimizes quality of life for them and their communities, and directly impacts the success of clinical care and adherence to treatment beyond the medical management of HIV.
Clinical support services are the home-based alleviation of HIV/AIDS-related symptoms and pain, nutritional assessment, routine and ongoing case management at the household level, ART adherence, and entry and retention in clinical programs. These include the full range of biomedical HIV/AIDS services. For example, without proper nutrition, ARV drugs alone can’t succeed in ensuring someone will be truly healthy. So our partners may provide food or nutrition education for a family to support their clinical treatment so that they will be more likely to succeed in their treatment.
Some partners also screen and refer for STIs, TB, and other common co-infections, providing education on positive prevention measures. Core-to-community clinical support provides services that directly mitigate barriers and support ongoing access to ART programs, addressing differences between HIV and AIDS where necessary.
Psychological care services are interventions that address non-physical suffering of individuals living with HIV and their family members. These include a variety of services like mental health counseling, support groups, support for disclosure of HIV status, and bereavement care. Community leaders including clergy or other spiritual leaders may provide spiritual care to remain sensitive to the culture and rituals of the individual and community. Other services might be life review and assessment, counseling, or other holistic support to empower individuals to prioritize health and maintain treatment.
Social services focus on people living with HIV and their families, providing access to community-based support groups and mobilizing participation in the fight against the epidemic. Our partners develop the leadership of people living with HIV while working to reduce stigma, provide transportation support, and connect families with legal services to assist with succession planning, inheritance rights, and legal documentation like living wills or powers of attorney. They help secure government grants, housing, and health care; link families to food support and income-generating programs; and increase community awareness of HIV care, treatment, and prevention services.
This is all done to strengthen affected households and communities, to reduce stigma surrounding HIV/AIDS, to offer hope to those living with or affected by HIV/AIDS, and to help people see that they can continue to live – positively! Advances have been miraculous, but we need to continue to fight this battle and to raise awareness for the people, their families, and communities, who are suffering needlessly, particularly in sub-Saharan Africa.
