KAMPALA – HIV-related stigma is among other factors believed to be significant stressors affecting adolescents living with HIV/AIDS in accessing related medical services.
This is worsened by health facilities that set specific dates for people living with HIV/AIDS to collect their medicine which the teenagers feel infringes on their rights to privacy. As a result, a good number of teens default on their appointments because they shy away from being exposed to the public due to stigma-related issues.
Although several studies have elaborated on how HIV-related stigma undermines HIV management, little has been done to bring this to an end, especially in the Ugandan context.
PML Daily’s Nelson Mandela looks at the circumstances under which young people go through and what experts and stakeholders suggest as better options.
18-year-old Mbabazi Fiona, from Namuwongo, Kampala was born with HIV, however, she got to know her status at 10 years of age. At that age she was not much bothered as she did not appreciate the impact of what that meant. “It was until the age of 16, when I got to realise that I will be taking this medicine for life” Today, she gets her drugs from Kiswa Health Center III.
“Thoughts started coming into my mind, why me of all the people, what did I do wrong? I felt like quitting the medicine and at certain times, I refused to take it and my viral load was high because I wasn’t suppressing it because of such thoughts. I started stigmatizing and discriminating myself,” she narrated.
Mbabazi says what worsened her situation was collecting medicine “because I was so shy.” “I could come late to the clinic. They had not got days for youth alone, it was everyone, so I could fear.”
Mbabazi, who is now a peer youth says so many teenagers default their appointments for the same reason.
“I have a friend who doesn’t want to come to the facility. He has a community pharmacy where he picks his drugs because he fears.”
Mbabazi, however, doesn’t think shyness is the only reason hindering the adolescents but also the reaction of some health workers towards them.
“Youth need friendly care otherwise; it will affect them in picking and taking their drugs which will lead to poor adherence.”
“Also I think health facilities should have like only one or two doctors to work on youth since we feel more comfortable that our secrets are not shared with many people,” she said.
Mr. Ronald Eligu – Founder and Managing Director, Touch The Slum, a community-based organisation that works with teenagers from Namuwongo slum says they have on several occasions encountered cases where some teenagers living with HIV do not want their status to be disclosed to the public.
“We have those who are too secretive and they don’t want even their friend or even other health facility staff to know but we get to know from their parents for us to be able to know their health conditions.”
He says that these young people have failed to smoothly access HIV/AIDS services.
“You know at some point they think they are not normal like other people and they think to be normal is to keep their secrets,” he said.
“On collection of the medicine, we have had a challenges where teenagers, if their drugs are done and there is no family member to either go collect it for them or escort them to the facility, they take longer to go and collect it because they fear that people will get to stigmatize them,r thus skipping some days.”
Mr. Eligu thinks the government needs to create smooth ways where these people can get easier access, “maybe the distribution of these drugs could be done through VHTs such that they can get their medicine at their comfort.”
Uganda currently counts approximately 170,000 Youth Living With HIV/AID (YLWHA) and figures are expected to rise as more youth remain highly vulnerable to the infection and as access to Antiretroviral Therapy (ART) increases.
Ms. Bero Phiona 23, Miss Y+ (Young Positives) 2021/22 says her and friends are lucky that their facility, Alive Medical Services has no specific dates. “You are free as a young person to tell the clinician which day is most favorable for you.”
She notes that when someone tests positive especially adolescents, they think they are the only ones going through that. This puts their lives in danger because of not picking medicines on time.
She revealed that at times they even try to deliver the medicines “but still you reach a place of appointment and the person does not appear. This situation is worsened in cases of branded cars. For example, like TASO, they’ll get a car, branded TASO – the AIDS Support Organization, and people will see this car parking near someone’s home.”
Bero challenged the teens living with HIV to love themselves and also to accept themselves the way they are, “otherwise, we shall fail to overcome the challenge that we are facing.”
Ms. Nesira Agnes, a councillor working with TASO Mulago – heading Orphanage and Vulnerable Children – OVC, supporting children between 0-19 years thinks teenagers wouldn’t be defaulting their appointment dates if other factors were constant.
“The challenge of accessing health centers is not just fear but rather cuts across. Some of them are child-headed families, some of them are total orphans but also heading families. They have other children they are looking after. It’s really challenging for such a child to access health facilities for services. There is a challenge of transportation for those who come from poor families,” she said.
However, Dr. Shaban Mugerwa, Senior Medical Officer-Care and Support: STD/ACP at the Ministry of Health notes that in Uganda, the walking distance from one’s home to the nearest health facility is about 7kms, which is almost the recommended one of WHO of less than 5kms.
“It means that there is no need to incur any money on accessing HIV services in Uganda. So, the issue of lack of resources does not arise,” he said.
He says that the people can also make use of implementing partners through extension services using outreach services. “These days, immunization outreaches are integrated, so, we want to ask communities to take advantage of any group of health workers.”
Ms. Agnes also decried that, “Children don’t have even what to eat and you are telling them to find transport and take medication on an empty stomach. Remember, we always advise people living with HIV to eat well but this person completely has nothing to eat. How do you even expect this child to remember their appointment? We have visited them before and some of them eat food from the dustbin.”
On this, Dr. Mugerwa notes that it’s a costly venture to take care of HIV-infected persons in terms of the care that they require.
“We have about 1.4 million Ugandans living with HIV but our HIV services are not only limited to those that are HIV positive but also to negative population. So, the government said let people learn to cost share because the benefits of ART are such that you are going to suppress the virus, regain your energy and be able to perform just like any other person.”
“Uganda, being a resource-limited country, we cannot be able to feed poor orphans living with HIV. When the rains come, let people grow food. Once the government has provided you with the medication that you need, you are a normal person like any other person, so, there is no difference between you and others. We don’t want to start glorifying HIV, that now when you are positive, the government can give you food, beans and cooking oil. We used to give them when we had a lot of money from the American government but we found that that was a non-sustainable venture. If you cannot really look for food to feed yourself when the government has given you free medication, then you are not interested in your life,” he said.
Ms. Agnes noted that these young people have also denied disclosure because at times they have partners (especially those aged 15-24) who they don’t want to know, but also their friends at school and in the communities they live because of the stigma and the discrimination associated with it.
“At times, these people have failed to disclose especially at their workplaces because at times, that alone can lead to the loss of a job. That person ends up missing the appointment.”
On privacy, she revealed that at TASO, they have an adolescent-friendly corner where they give adolescents services comfortably.
“We also have other avenues of giving our services. We can come home but you need to have consented to us that it is okay.”
She says that if the client doesn’t want the delivery team to be noticed, they can leave their branded car somewhere and find means of reaching their home.
“So, we always find ways that fit them other than causing more harm. We also have the strategy of giving them medicine through their communities but still, you will have consented.”
Dr. Ajambo Aidah, HIV Care Focal person at Kawempe National Referral Hospital says that in Uganda, adolescents are one of the groups that have high incidence of HIV, especially among girls as compared to their male counterparts.
She also revealed that adolescents have the poorest viral load suppression which goes hand in hand with survival and reduced mortality of those who are infected.
“So, the adolescents actually have the worst viral loads because of the way they are taking their medication and one of the key issues leading to this is stigma.”
She notes that appointment date keeping is still a challenge and is normally defaulted by adolescents who are in schools because they can’t find authorizations from schools. This is usually because schools are not aware of the HIV status of the student. Because of fear of stigmatisation and discrimination, parents fear revealing to teachers and school nurses the status of their children.
“You find that it’s a little a bit hard for them keep on getting permission from the school to come to the facilities for their Antiretroviral Therapy – ART refills yet at times we are unable to give them a little longer refills due to several reasons and one of them is swallowing their drugs poorly and we need to see them frequently.”
Dr. Ajambo notes that for those in the communities, it depends on how one acquired the disease. She says that those who got it from their parents are normally supported by the parents especially when the father is aware, unlike those who acquired the infection on their own.
“It’s a bit a challenge because of the way the community sees and judges them. The community judges them as people who are promiscuous and are vulnerable because they are poor and can’t go to distant facilities from which they prefer to get medication. So, they may end up defaulting but even getting the permissions because we know that even the few who are married they are maybe the second wives, so there’s dominance and control over them and yet they do not want to disclose.”
However, she says that the majority of them are able to come and pick up their medication refills despite the different challenges
Dr. Ajambo notes that they have differentiated delivery models whereby they can extend the services nearer to the people.
“In this, we have the Community Drug Distribution Points – CDDPs for facilities which are far, clients can be able to pick the medicine may be from a church nearby, school nearby which brings the services close to them.”
Also, another model, Dr. says they have is the longer appointment whereby they give clients (adolescents longer durations.
“This covers those who are in schools in case everything is okay, they swallow their drugs well, not scared if anything that we need to see them frequently.”
She says that they are also able to liaise with the teens so that their parents can pick up the drugs and give them on visitation days.
According to Dr. Ajambo, what is lacking is scaling up the pharmacy model of refills which would improve adolescents’ adherence.
“There are many pharmacies in our communities, so the implementing unit can store their medicines with those people so this person can pass by any time of their convenience and there is nothing identifying that someone is positive. This will scale up the appointment keeping and medication dispensing to these people.”
She also thinks that if the government can come up with several adolescent centers like the Naguru Teenage Center which most adolescents find good and easy for them to access the services, it would scale up the appointment keeping.
“If we get more teenage centers, especially in places which have a higher incidence, it will improve the services for these people. I know most of the facilities have created a small center for these people by scheduling them on particular days and hours but it isn’t as convenient as those which are specifically set up for the teens.”
Dr. Ajambo also called for the training of school nurses on HIV and combating stigma so that they can see these children as normal children and also maintain the confidentiality of those who are infected.
“If these nurses know and are able to run these services, it’s easy for the clinicians to coordinate with them and also have them receive medication for the children who are infected and then advance adherence in schools.”
Ms. Immaculate Owomugisha, the Head of Advocacy and Strategic Litigation at Social Uganda Network On Law, Ethics and HIV/AIDS – UGANET notes that the data in the country today shows that there is a very big number of adolescents and young people living with HIV.
According to the UNAIDS 2022 report, HIV prevalence is higher among adolescents and young people.
Ms. Owomugisha attributes this to stigma which is still persistent in many ways. She notes that the community has failed to understand, appreciate and embrace people living with HIV.
“People will say we don’t discriminate but the day you disclose that look, I am HIV positive is the day you start hearing people talking behind your back, and that brings fear to the young people.”
“They wonder that if I go to this facility, whom will I meet there, how I will be treated, what safe spaces has the facility put in place,” she says.
She also blames the laws which continue to bring stigma amongst people living with HIV.
“We still have HIV-specific laws and these laws kind of hinder people living with HIV from being what they want to be. If I know that if I disclose my HIV status at one point, it will be used against me, I’ll start hiding, I’ll start sending my sister to go and pick for me my medicine and if she’s not there, then I’ll go without treatment and these are struggles that young people are going through.”
Ms. Owomugisha also says some health facilities in the country still lack youth-friendly corners which also bars young people from freely engaging with their peers.
“We know it is recognized in Ministry of Health policies on HIV prevention, care and treatment that there will be youth-friendly services at all levels but that’s not the case in some facilities and sometimes you still have to go through a line with very many adults, and then go through another corner which maybe has pregnant mothers before you reach youth-friendly corners. All these lead to high HIV prevalence in young people and adolescents.”
Dr. Mugerwa notes that the government has integrated HIV services into the general maternal newborn child healthcare services because they don’t want to run standalone services.
“When a woman conceives in Uganda, it is mandatory to test for HIV status and this happens in antenatal. In order to reduce the stigma, we created separate clinics for adolescents where they’ll be very comfortable.”
He says that they have also trained healthcare providers to give adolescent-friendly services.
“At Uganda AIDS Commission, we are now advocating for equity in service delivery and we are using the intergraded approach. We want a mother who has come for HIV services to receive family planning services, TB services and also be screened for malaria. Our services are now a one-stop shop.”
What the law says
HIV and AIDS Act
The HIV and AIDS Prevention and Control Act, 2014 (“HIV and AIDS Act”) mandates the confidentiality of HIV test results and HIV status and penalizes breaches of “medical confidentiality” and the unlawful disclosure of a person’s HIV status. This confidentiality protections apply to any “person in possession of information relating to the HIV status of any person.” Notably, the HIV and AIDS Act permits disclosure of medical information: (1) to a guardian if the person is a minor, legally incompetent, or has given consent; (2) to medical staff directly involved in treatment, to those authorized by the Act, the court, or other laws; (3) to any person exposed to the body fluid of a person tested; and (4) to people that a person living with HIV is in close contact with. In the event that a medical practitioner discloses HIV test information under one of the above exceptions, that medical practitioner must “inform the person tested of the disclosure” by providing “the nature and purpose of disclosure,” the date of disclosure, and the recipient of the information.
ALB: Health Information Privacy & HIV/AIDS in Uganda
The HIV and AIDS Act creates an offense for “breaching medical confidentiality” or “unlawfully disclos[ing] information regarding the HIV status of any person.” A health practitioner who violates the confidentiality provisions of the HIV and AIDS Act is subject to a fine, imprisonment or both. The HIV and AIDS Act also requires mandatory HIV testing for: (1) the victim of a sexual offence; (2) a pregnant woman; (3) a partner of a pregnant woman; (4) anyone under a court order; (5) a child born of a mother who is HIV positive; and (6) anyone “apprehended for a sexual offence.”
UNAIDS recommends a clear legal framework for the collection, storage, disclosure, and use of health information. UNAIDS’ example privacy act includes a number of confidentiality, security and enforcement elements that could comprise a comprehensive privacy framework. Some of the elements of the UNAIDS example privacy act are addressed by Uganda’s HIV and AIDS Act and Patients’ Charter. However, a number of the elements from the UNAIDS sample privacy act are not addressed in Uganda’s existing legal framework. The Background Paper referenced in the box to the right provides a more thorough comparison of the UNAIDS elements to Uganda’s existing legal framework. To strengthen its health privacy framework, Uganda could consider adopting further legal provisions that address each of the elements of the UNAIDS’ example privacy act.