What are the verbalised and non-verbalised concerns of the Person Living With HIV? What are the verbalised and non-verbalised of the provider? This is what this report seeks to bring to light. We hope it will inform your approach to caring for people living with HIV.
While ARVs have shown positive results by suppressing the HIV virus, the toxicity that comes with it is threatening to demotivate patients. This could be one of the causes of non-optimal ARV adherence and viral suppression. Despite of ARVs being around for over 20 years, we still have untreated people living with HIV, we still have people living with HIV who cannot get full ARV doses, we still have people living with HIV with high viral load. We developed this report as an advocacy tool as well. We wanted to share a perspective whose narrative is not mainstream because other issues take up the agenda. Yet, the issues we raised here make up the bulk of work needed to eradicate AIDS in Uganda. This report concludes that there are four factors (subjective motives) which are significant in determining viral suppression:
1. The time one has taken ARVs;
2. Optimal ARV Adherence;
3. Provider subjective motives;
4. Beneficiary subjective motives.
These predict the success or failure of viral suppression.
The Provider subjective motives: Treatment as prevention, management of side effects, follow up of beneficiaries, HIV Testing, ARV Therapy, ARV Adherence and Viral Suppression.
The Beneficiary subjective motives: Identity (sexual/gender, vocational/work, religious/spiritual, political/ethnic values and traditions within a social context), sensibility (sense of worth, esteem, wholeness), mobility (ability to move, associate and relate), intimacy (ability to seek and and be sought after) integrity (ability to maintain or retain bodily function, contribute to community), creativity (ability to innovate, think and execute ideas), connectivity (ability to adopt new habits, initiate and maintain links with people and community) safety and security (awareness that disability is not inability), generativity (ability to mentor and being a role model) and dignity (guaranteed unconditional positive regard) focus of the beneficiaries.
This is where your advocacy work is much needed:
This will increase your advocacy skills. This is what is meant by Strategic HIV/Public Health Planning and Programming.
Join networks which promote social justice, set aside some funds for traveling to attend these meetings.
Create time to engage in advocacy and activities that leverage the quality of HIV Prevention in your catchment area. You can also link up with other organizations involved in HIV Prevention and Care. Do not work in isolation. Also avoid using PEPFAR money to arrange birthday parties, beer parties, workshops in bars and lastly don't use PEPFAR funds to buy private cars, phones and lead luxurious life. You will be prosecuted.
The Advocacy work:
Nutrition, Light Work And Working Out As Treatment (NLWRx):
We have made frequent visits to the clinics, requested laboratory tests and made sure medications were taken as prescribed. But, at household level, there are issues that arise resulting from toxicity of the medications. We tried our best to provide counseling and home made remedies. These were nutrition/food based remedies, light work and joining support groups.
But, let us be honest (cut the BS...as Americans say!) we (kindly) need logistical support from the pharmaceuticals that manufactured these drugs. Come out and help us identify, buy, stock and ship foods with higher anti-oxidants to counter the debilitating effects of the virus and ARVs. Help us promote meaningful participation in quality life for all. We have witnessed uplifting experiences when the right foods were taken by those taking ARVs.
Medication and Side Effects:
The use of multiple drugs that act on different viral targets is known as highly active antiretroviral therapy (HAART). HAART decreases the patient's total burden of HIV, maintains function of the immune system, and prevents opportunistic infections that often lead to death. HAART also prevents the transmission of HIV between serodiscordant same sex and opposite sex partners so long as the HIV-positive partner maintains an undetectable viral load. We take this message seriously. We seek support to enable us promote management of side effects of ARVs among most of our beneficiaries.
Support your clients living with HIV in order for them to attend clinics regularly because as they continue taking ARVs, they need to be checked for side effects.
These are some of most reported side effects: Nausea, tiredness, diarrhoea, skin rash, liver toxicity, yellow eyes, light coloured stool, dark urine, poor appetite, pain around abdomen and lower back (tenderness of liver and kidneys), peripheral neuropathy, lipodystrophy, anxiety, mood changes, strange dreams, anaemia, lactic acidosis.
Comprehensive HIV prevention package including Circumcision:
WHO/UNAIDS recommendations emphasize that male circumcision should be considered an efficacious intervention for HIV prevention in countries and regions with heterosexual epidemics, high HIV and low male circumcision prevalence. When we go out to the communities for our Health Education/outreach services, we talk about comprehensive HIV prevention package which includes: the provision of HIV testing and counseling services; treatment for sexually transmitted infections; the promotion of safer sex practices; the provision of male and female condoms and promotion of their correct and consistent use. Our task of mobilizing for voluntary medical male circumcision (VMMC) for HIV prevention is informed by two objectives. The first is to engage communities in embracing HIV Prevention activities. The second is to cascade activities in UNAIDS 95:95:95. For references please read Male circumcision for HIV prevention (WHO)
Reducing number of sexual partners:
The more sexual partners you have in your lifetime, the more likely you are to have a sex partner who has HIV and whose viral load isn't suppressed or who has another sexually transmitted disease (STD). People who drink and/or use drugs may be more likely to take risks, such as not using protection during sexual activity, when they are drunk or high. This can increase their risk of getting HIV or other STIs.
Hepatitis C:
We take to the communities the Hepatitis C message. Hepatitis C, is a liver disease caused by the hepatitis C virus (HCV): the virus can cause both acute and chronic hepatitis, ranging in severity from a mild illness lasting a few weeks to a serious, lifelong illness. Hepatitis C is a major cause of liver cancer. The hepatitis C virus is a blood-borne virus: the most common modes of infection are through exposure to small quantities of blood. This may happen through injection drug use, unsafe injection practices, unsafe health care, transfusion of unscreened blood and blood products, and sexual practices that lead to exposure to blood.
Adolescent pregnancy:
Approximately 16 million girls aged 15 to 19 years and 2.5 million girls under 16 years give birth each year in developing regions. Complications during pregnancy and childbirth are the leading cause of death for 15 to 19 year-old girls globally. Every year, some 3.9 million girls aged 15 to 19 years undergo unsafe abortions. Adolescent mothers (ages 10 to 19 years) face higher risks of fistula, eclampsia, puerperal endometritis, and systemic infections than women aged 20 to 24 years.
Mental health of older adults:
Globally, the population is aging rapidly. Between 2015 and 2050, the proportion of the world’s population over 60 years will nearly double, from 12% to 22%. Mental health and well-being are as important in older age as at any other time of life. Mental and neurological disorders among older adults account for 6.6% of the total disability (DALYs) for this age group. Approximately 15% of adults aged 60 and over suffer from a mental disorder.
Housing:
Housing provides opportunities for wellbeing, safety from adverse weather and security of belonging. Housing and the built environment have a profound impact on human health. The housing sector (commercial and residential) is responsible for approximately 19% of global greenhouse gas emissions and approximately one-third of black carbon emissions - a major component of particulate air pollution. Housing conditions also affect health with respect to building siting and land use, choices of construction materials, design features, and ventilation and energy.
Livelihood:
This is a very important issue we look into and encourage conversations around. A livelihood is a means of making a living. It encompasses people’s capabilities, assets, income and activities required to secure the necessities of life. A livelihood is sustainable when it enables people to cope with and recover from shocks and stresses (such as natural disasters and economic or social upheavals) and enhance their well-being and that of future generations without undermining the natural environment or resource base. Agriculture in Uganda has a wide impact on people’s livelihoods because it is a source of income, it can positively impact the economy and it serves as a source of food. Given its potential, the nation’s government, non-profit organizations and courageous individuals are seeing the value in further investing in agriculture.
Recreation:
We encourage beneficiaries to find time to recreate. The act of making something for the second time, or refreshment of the mind, body or spirit through play and relaxation is important and shows how motivated one is.
Criminalization Apparatus of Poverty, Sexuality, Gender and HIV:
Criminalization has hidden fees and burdens to it. We have come to realise that there are undisclosed burdens/expenses that come with living with HIV, poverty and being of a certain gender. Definitely, sexuality is not far away. One infraction carries the risk of escalating fees, burdens and break in HIV treatment. Criminalization leads to disparities, stigma and discrimination. There are barriers stopping many from knowing their HIV status. Criminalization, might be risky in a country where many HIV-positive people are believed to be unaware of their status. Take the message to all and sundry.
Conclusion:
Taking ARVs, has its complications but the benefits may outweigh them. The longer one has taken ARVs, the more the needs one has to address. Training providers in cultural sensitivity toward understanding the ramifications of HIV Prevention and care, in turn creates a context of readiness, facilitation and compassionate ethos. ARVs have prolonged life however, an appeal goes to the pharmaceutical manufacturers and governments to go a step further and provide contexts for decriminalizing HIV and support for managing ARV side effects.
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