By Annita Matsika in Mbarara
Ed- On 19th August 2022, the Health journalists Network held a media science cafe in Mbarara. Below is a narrative of the report compiled by the Mbarara team led by Annita Matsika.
Naturinda Kedrace working – TASO Mbarara in charge of children welfare.
Looking at what the government can do and also other people like caretakers and guardians can do to make sure these children access services and get better while they live with HIV.
There are two classes of children, in the category of infected and affected ones. The infected ones are those who live with HIV and the affected ones are those children who are born to parents living with HIV or they live with someone who is having HIV in their family and the fact that this caretaker is living with HIV, it affects the children well-being.
When you look at the children living with HIV, according to UNAIDS report 52 % of the children living with HIV are the ones who are accessing HIV related treatment and specifically ARVs globally. In Uganda it is not the case, the percentage stands at 86% above the global one.
For children who are living with HIV, Naturinda says they have challenges handling them especially in the identification of the new HIV positive children, mostly those living with caretakers who are not HIV positive. She says at least if someone is living with HIV, according to sensitizations, this person can be in positive to understand that the children should be tested. But for this person living with a child and he/she is not HIV+, one may not be in position to tell whether the child should be tested or not.
And also, some of the parents and guardians while passing on responsibilities to another caretaker, they don’t reveal the HIV status of the child to the new guardian. Having multiple caretakers is a big challenge because in most cases, these children could have been in better hands and the new care taker may not be aware of what it takes to look after such a child you end up getting children who are not being suppressed. When one has a lot of HIV in the body, he/she is not suppressing.
When a mother or any care taker is not keen with the drugs for this child because the drugs are supposed to be taken timely, the child’s health starts to worsen. The guardians mostly those who are not on ARVs some of them are not so keen in taking good care of the children, others are aged and others illiterate, which brings about poor results in these children who are taking ARVs.
There is also a problem of none disclosure, you find that the child who is taking ARVs is not informed about his or her status. The child is taking drugs but does not know the reason. When the child is not disclosed to, and when they are not feeling any sickness, they tend to refuse these drugs yet if she was told about why she is taking drugs, they can get to take drugs very well but the problem is parents or guardians fear to disclose to these children why they are taking their drugs.
As TASO, they try to build the capacity of these mothers, as caregivers, you don’t have a right to disclose the HIV status to this child. You must build capacity for the caretaker to disclose to this child once the child is twelve years old. The child at that age must know his or her status because beyond that, children start bringing a lot of questions to caretakers. But a caretaker must consider the understanding of these children. If the children are brave enough, they can be disclosed to even before 12 years.
Advice; Encourage your children to spill it to everyone, confidentiality is key. The care takers are also always encouraged to disclose their statuses to these children and should not be a blame game.
There are some children who are HIV negative but you find the children some of them are positive. Not all children who are not sexually act got the virus from their parents. Some got it from other sources like sharing of sharp objects.
2. Stigma, is a disease and so is discrimination amongst adolescents and children even adults in the communities but especially for the case of children. When the community get to know that a certain child is HIV+ they stigmatize them. They look at them as children who are going to be failures or die anytime. In families, they prefer educating and caring for the HIV negative children to the positive one. That element of stigmatizing children is common amongst adolescents. There is more stigmas in school going adolescents especially in boarding schools where learners are not interested in disclosing to school administrators like nurses and matrons in fear that they will rumor around. They encourage parents to get a guardian or a drug companion with young children because their drug adherence depends on the guardian. If the guardian does not support the children to take the drug very well, the child will not take it well. The child might keep the drugs in their suitcase until the term ends. But if the child does not want any of the administrators to know, respect her decision or opinion as a parent.
This is done even in HIV testing, the child has a right not to tell the parents or guardian about the status as long as the child is above 12 years and a service provider is not supposed to force the child to disclose.
There is a challenge on handling adolescents who are trying to establish relationships. Because of stigma related issues, these adolescents especially between the age of 15-24 years, most times when you ask them they will tell you they want a partner who is HIV negative. Few of them say it’s okay to have an HIV+ partners. Those who want an HIV- partner are not ready to disclose in fear of being rejected. At TASO, such adolescents are empowered to reveal their status when the relationship has not gone too far. If you can do it openly, encourage your partners to go for a test with you and in the process, you can be helped to reveal. There is what is called a descendent relationship. There are also provisions of PrEP and PEP treatment and prevention within 72 hours.
3. Pill burden, the number of tablets the child is taking frustrates the children and they keep wondering for how they will have to take them. They get tired of taking the drugs. But recently, the pills have been reduced for children below 15 years; they take ARVs and septrin to fight against optimistic infections and ARVs to fight the virus. But beyond 15 years the child is strong enough to fight HIV, they only take ARVS. However, there is a challenge of high pill burden especially for people on third line drugs after failing on the first and second line.
Natukunda noted there are a number of children on the 3rd line and which is the last option due bad adherence to drugs. You find a 10 year old and on third line, which has so many pills. It requires one to take four different drugs and like twice a day plus septrin.
The government introduced a program of young people living with HIV supporting fellow young people living with HIV. Such people help the system to be strengthened through testimonial success story sharing. The on ARVs and doing well supports the one who is not doing well and this brings good results. These young people sometime do home refills or at work places.
She also acknowledged poor attitudes by some service providers especially in government facilities which scare away and reduce the uptake of medicine. They are not given conducive environment to access their medication. Some positive living mothers are not given drugs to prevent their kids from being infected right after birth. There are still some children contracting HIV from the mothers.
4. There is also a challenge of poverty amongst caretakers and the adolescents who are child mothers. The poor social economic status of the caretakers can force them to miss Doctors’ appointments and the child misses drugs which result into poor adherence. These young mothers end up failing to take their children to school and engaging in sex work, working in bars to survive. There is a need to provide these girls and boys with sexual reproductive health messages.
At all school levels pre-primary to university there are children who are HIV positive in every class. Mothers should be careful to whom they trust their children with especially the caretakers. You could be having an HIV positive maid sharing sharps objects with your kids but also there are those who do it maliciously they cut themselves and child too just to infect them.
5. Gender power imbalances, in Africa, Uganda in particular, everything is controlled by men. Its unfortunate that some men can stop their women to go for antenatal in fear that they will be tested they end up giving birth from home or traditional birth attendants and end up infecting their child and they are not facilitated to go for their drug refills.
Gaps in policy implementation, some policies are good but the way they implemented is not favorable. If some policies are well implemented like it was with PMTCT, they involve all the local and religious leaders and VHTs in following up mothers who are pregnant and they ensure they attend 8 antenatal visits and must test for HIV; we could reduce on the rate of mother to child transmission.
6. Cultural practices; there are still some families who share razorblades for the children in the family to cut their hair and nails, it’s unfortunate. Some other mothers still believe in false teeth extraction and after breastfeeding their babies put the at risk of contracting HIV, widow inheritances practices, forced early marriages all hinder the efforts to end HIV/AIDS by 2030.
Knowledge gaps amongst health providers, service providers may not know what exactly the adolescents want, it’s very important to involve them in planning for their wellbeing. They are stakeholders in this fight.
7. Limited resources; Government is trying to implement youth friendly service provision and asked facilities to establish youth friendly corners but most of them are not equipped. You find the room is there but what the adolescents require is not there and some service providers are not adolescent friendly.
We should be having youth friendly service providers they are only looked at as superior people.
8. Covid 19 impact, it created a lot of backsliding in service delivery for these young people and the uptake of medicine went down and some youths got mental related issues since they are not well supported
What should be done to make sure these children receive the drugs and we achieve the AIDS free generation by 2030?
– We intensify sensitization both the guardians and the children and the community leaders using media and health messages like it was in the first days of fighting the HIV/AIDS.
– Service providers must also be sensitized to instill a sense of ownership to patients.
– Encourage parents to disclose in time to the children about their statuses.
– Intensify the strategy of testing and treating in 30 days.
– Implementing the idea of index testing, this is the testing of other family members of the person living with HIV
– In case of a mother who is living positively there should be early infant diagnosis. This must be done after producing in the first two months.
– Innovation Should be more innovative to reduce the pill burden. Injectable ARVs should be enrolled or developing one table especially for the 3rd line patients. Number pills to be taken by a child per day are becoming a burden
– Health practitioners must follow guidelines while testing and treating HIV. There should also be a policy in accessing care and resources to attain a certain income level status
9. Addressing sexual reproductive health;
– Children who are sexually active can be given family planning and education on condom use. Parents should not allow their children to get information from the 3rd party, speak to your children do not shy away and leave your roles to teachers.
– Encourage parents to speak to their children about their gender related roles, body changes and sexuality. It is also important for parent’s to know what their kids use their phones for. They are getting information from wrong sources.
– Government should look into skilling of young children so that they can be able to sustain themselves instead of going for any other activity that put their life at risk, monitor what your children is watching on TV.
– Intensifying supervision of health workers especially in government facilities. It is painful to find that in charges of HC2 and HC3 working in a private facility and rare in the government yet he is paid.
– Involvement of people with HIV in police making and implementation because the bottom top approach may affect the4 beneficiaries. The referral and linkage approach is very important in addressing issues related to HIV management.
– Sustainable livelihood programming for the care takers so that they raise their income statuses to provide for their children. If they are given opportunity to have skills like tailoring, saloon works among others, the risky behavior can be fought.
– We can use differentiated service delivery model to reach out to these children and their guardians to make sure they maintain good drug adherence and access services with ease and not looking at it as a burden. They need consistence in counseling and continuous psycho social support, this reduces stigma, strengthen the relationship in the family.
In her conclusion, she asked all the stakeholders to join hands to sensitize the masses and the pregnant mother to test and know their statuses. We still have mothers who do not test for HIV during pregnancies. There are 272 children at TASO center who are on HIV treatment and their viral load is at 91%. But when you look at Uganda population based HIV IMPACT ACCESSMENT OF 2020/2021, HIV preference is still high in adolescents and young women at 2.9% compared to boys at 0.8%
‘’We all need to support the young girls and women to fight HIV because when the woman gets HIV, there is likelihood of infecting the child,’’ she concluded.
B. Kasande Juliet- KPL HIV+ from Isingiro district.
Kasande is a 58 years HIV+ widow and mother of 7 Children. she knew about her HIV status in the year 2000. Her late husband was a bank accountant who hides his status from her until on his death bed. They were married since 1988 but the husband never disclosed to her about his status.
Immediately after his master’s degree in 2002, he got too ill and started vomiting blood all of a sudden. By that time, Juliet was breastfeeding a six months child at 3 months pregnant. Her husband died a week later in 2003 after refusing to accept his HIV status and starting on treatment. Dr Bitekyerezo who was treating her husband called her in a private room and confirmed to her that her late husband was HIV positive and that she needed to test and be sure in order to start on treatment in time.
She went to AIDS information center and got tested and indeed she was HIV+ and later started her medication, which she used to buy at 700k each month for a full year. By the time of starting treatment, her CD4 count was at 0.5. She was bed ridden for 8 months and continued breastfeeding the child and gave birth to another.
Fortunately, the child who was breastfeeding did not contract the virus from her but the one she produced later after her husband’s death was born with HIV. Her positive daughter is now 17 years and in senior 4 at Namagunga girls school. From zero to a hero mother, her five children are all graduates the last two are in high school.
According to her, living with HIV is not a death sentence. Positive living people must be supported to live as happy as others. She has been living with HIV/AIDS for 22 years but managed to take her medication and raise her children to be responsible citizens.
The day she buried her husband, everything was taken from her by the man’s family except the six young kids and her pregnancy. She had to rent a small single in a trading center.
The community upon knowing her HIV status, started discriminated her to the extent of the reverend in her church where she was praying from stopping her from taking sacramental that she would infect others in the church. This depressed her for a year until she was forced to disclose to the bishop who intervened.
Rising and HIV positive child is another full time job especially when you are a single widow sick mother. She had to answer a lot of questions from the elder children, family members, community and the child herself. And most cases she had no answers to the questions.
By that time, getting medication for and child was almost an impossible mission and very expensive. Because of discrimination and stigma, she had to change her place of stay so as to do casual work to take care of her homeless 7 children.
It was very hard for her to disclose to her daughter about her status yet she was always asking for the reason why she was swallowing medicine everyday not until she was 14 years together with her counselor managed to disclose to her.
It took the child some time to accept but now she is positively living and supports other people of the same caliber
In 2007, Juliet went to Addis Ababa in Ethiopia in a conference to represent women living with HIV. She admits that she never went to school and that this was by God’s mercy. After that trip, she was awarded with 27 M to facilitate her and the family and this was her turning point.
She now leads a group of 86 positive living people in her village in Isingiro district.
She advises people who are still negative to protect themselves more because managing HIV/AIDS is as simple as it appears and with the virus to take their medicine in time, love themselves and have hope.
C- Fredrick Kamugisha- the senior health educator for Mbarara district
Kamugisha represented the HIV focal person for Mbarara district, the information shared regarding statistics was generated by the responsible person for HIV services in Mbarara district in absolute numbers not percentages (April May and June 2022)
Grateful for the kind of media café on HIV and was happy to be part of discussion because it helps people who are responsible for BCC for the media to communicate to the population through social behavior change communication.
The statistics for pediatric HIV in western region. The western region has Ankole and Kigezi regions. The information is for children below one, five years, below ten years, below 15 years up to below twenty years categorically. This information can give a clear picture of what is happening regarding pediatric HIV.
In western region there is a total number of 10,719 children under care between the age of 0-19 years but there is also unknown number of children who have not yet got access to testing and to know their status so that they are enrolled into care in 18 districts of Western region.
But when you look at the age bundle, the biggest number is between 15-19 years where we have 3,824 children enrolled on care. This is the age category where the adolescents are experiencing many challenges because of growth and development and they need to be given attention regarding sexual reproductive services and many more supportive factors like skilling them and financial empowerment.
There is also another relatively big number of age bundle between 10-14 years, these make a total of 3460 children, this commonly known as a lost generation because the biggest blame is on parents who not give enough care to this age group. They are more concerned to the age bundle of below 5 years.
When you look at age bundle below 1 year the whole region there is only 75 children meaning, something is being done about vertical transmission. The strategies that are being used and adopted by the ministry of health like prevention of mother to child transmission has done a great job. However, we need to know how much is being done to test those who are being born to mothers who are positive and follow up to see whether they cell converted and didn’t get HIV from their mothers. A lot has to be done.
Just like the services given to the children it’s almost the same foe adults. Mbarara is among the high risk districts and ranked number two in the whole country after kalangala district at 18.2% prevalence and Mbarara at 17.8% yet the national preference rate is at 6.2%. This clearly shows that there is a lot of work to doing regard to HIV prevention and treatment.
Some of the strategies being used to contain HIV
Ministry of health has adopted many strategies as a way of increasing access to treatment and support for HIV like the 90-90-90 Strategy which was rolled out in 2016, by 2020; we were supposed to be achieving 90%. People being diagnosed for HIV and those who are found positive be enrolled on care and those on care to suppress and that was achieved and the UNAIDS recommended that now we can go to 95% and almost there meaning a lot being done by health workers and all stakeholders.
We are doing well via testing and enrolling patient on care and even among other strategies, the ministry continues to review the new guidelines for HIV management. The service delivery at all levels is being guided and services are categorized.
The ministry has gone through all health centers to educate the health workers about the new guidelines. The ARVs back in day’s that would give side effects but as the studies continue, new drugs are being brought on board. Now there is a new drug that was enrolled in 2018 (DTG) its only one tablet and it has no side effects like at first. The injectable drug is also under study anytime it will come out and reduce the bill burden.
People used not adhere to treatment because of the pill burden.
Strategies being used by the ministry
In the new guidelines in service delivery, prevention is considered as the most important aspect looking at modifiable factors and non-modifiable trying by all means that these services are being given.
Under care and treatment, many strategies were adopted like differentiated service delivery models at the facility and communities and psychosocial support. The reason why the focus is on alliance is that these services need multsectoial collaboration and that why the media is being engaged as well to disseminate information about HIV
There is a model called ecological, which looks at an individual as a person but also the family, influencers and all corporate institutions including the government. This is the best model because you cannot fight HIV alone without other sectors involved. The ministry may provide the medicine but it cannot be swallowed by its self alone. The patient needs food, if one does not get good food to have enough and required nutrients in your body, you will not be able to adhere to the treatment. All sectors need each other and that is why the ministry of health is coming out with another strategy of family health program. It will enrolled in Mbarara district this month on 22nd focusing on malaria looking at mosquito net usage, Fancida in pregnant mothers because if you are HIV+ and add malaria you may end up developing other complications which may push you into an AIDS state
Family health program is also targeting nutrition and under it, the ministry is interested in under malnutrition. The ministry is also looking at family planning because an HIV+ mother may require a family planning method but does not know where to get it from.
The ministry is looking at maternal health, new born health and child health. The child may not be able to survive malarial pneumonia among other conditions. Though the child is HIV+, the ministry is trying to avoid comorbidities and other diseases because you may not die of HIV but other conditions like TB and that’s why the government came up with new changes that were brought in regarding TB preventive therapy to prevent the child of a mother who is HIV+ from getting TB or if the child is HIV+ all these strategies are put in place to make sure the child adhere to treatment.
The challenges are nutrition especially for children who are in boarding schools with tough policies of same meals and you find the child is not able to access good food
Another challenge is on the child who has been transferred from one care taker to another and that person who has received the child is not yet supported through counseling to be well repaired to handle this child.
Access to medicines at schools. Most parents have problems with disclosing their children statuses to the school heads and caretakers. Parents pack drugs for children and just imagine this kid is swallowing well yet it’s the opposite. This is brought about stigma and discrimination in schools amongst teachers and learners.
There should be a school health program focusing on the teachers to be oriented about the status of these children and how to handle.
GBV affects the child’s adherence. Most cases when the mother is chased away from the family, this child is likely not be taken good care of because mothers have good health seeking behaviors than men. Most men do not know anything to do with the child health especially when this child has HIV. The child can spent even more than a month without taking the drugs because the mother is a way
DR ROSE AYEBAZIBWE-The medical services technical lead at TASO
How the interventions of children came about in Uganda in September 2013 that’s when option B+ was introduced. And when option B+ came which is PMTCT , it meant that the mothers had to be on ART and when looking at pediatric and adolescents or children, the baseline of the pediatric is to hit 95 95 95 among children and adolescents begins with the mother and the father because PMTCT does not start with the child, it begins with the one carrying the child. This means that if 95 95 95 % is achieved among adults it will help to achieve 95 95 95 among the adolescents because when you look at children, if they cannot take their drugs, it means the mother or the care taker is the one helping the child to achieve the third 90 in viral suppression that why the ministry begins with adults yet also the adult’s targets is not yet achieved.
In 2013, mothers started to receive ART regardless of the stage or CD4 count, so if one is HIV+ pregnant or breastfeeding, the mother would be given full ART and when the child is born, they were given Nevirapine syrup at the start and then septrin as the child grows but the guidelines kept changing and now Nevirapine syrup is now for 12 weeks not six weeks depending on the status of the mother.
Meaning that if the mother did not suppress, the risk of this child getting HIV is high than the mother who was suppressed, so when you are giving nevolphin it is according to the status of the mother. It all begins with the mother and then the caretaker. PMTCT basically looks at the primary prevention of HIV among women of reproductive age because that’s where it’s all begins and prevention of unplanned pregnancies because if you become pregnant unexpectedly, you are not sure of the status or hiding statuses. Some young girls get pregnant and don’t go to health facilities
There was a target of prevention of HIV transmission during pregnancy and breastfeeding, treatment care and support for HIV+ mothers both pregnant and breastfeeding.
When ministry of health revised the guidelines, they realized that it should be a must for every pregnant woman to test for HIV, which is good but not the problem that ministry of health faces in Uganda is because the health centers rarely get couples who are seeking antenatal together meaning , someone can stay negative in the first trimester, the second trimester and the third they are positive because the husband is not being tested or because they do not come together to be taught on the prevention methods . There are usually only women in the antenatal clinics, its rare to find a woman with her husband meaning it is only the woman getting the information the man is not getting the information or you will find the woman knows her status but does not know the status of the husband. All those things combined together resulted to the ministry to start to encourage couples to come together for antenatal yet it has not taken off because around 95% in the antenatal don’t come with partners meaning the one who know their statuses are the women and the 95 95 95 targets that 95% of the population should know their status then 95% of those who have known their status and they are positive should be started on ART. Then the 95% of those who are started on ART should suppress so that there is a free HIV generation.
But there are still a lot of hiccups because when we look at our children already on care or are tested but that number has reduced for maybe one reason because of PMTCT services. When the program had just started in 2013, the numbers were very high.
Now the main focus is on those who are on care and HIV +. When you look at the treatment options and how all this process began with AZT3T Nevirapine which is the first line treatment and then they later realized that Nevirapine was not the option because they were receiving it at birth and there were already resistance and moved to another drug which is Ropinna valtonava and later realized because the tablets were many and the children were not taking the tablets well, they ended up with DTG which is now on board and taken once a day.
And when you look at the way the drugs are designed, they are favorable to the children with some of the drugs smell like fruits. The child takes it because of the scent and it is small in size and all that goes back to the caretaker of the child.
When you look at the reason why the viral loads suppression are not being achieved which is around 65%, this one depends on the facility but when you combine all the facilities, they are not achieving the 95%. It all depends on the care givers, because at the facility, you are given the right drugs but when caregivers take them home, they are not given to the children properly
And also looking at how our children are born of KPS, so after giving birth to a child and realize that the child is positive, they take them to the village with their mothers or grandparents meaning that we are dealing with caretakers around 75% are illiterate and by the time a health worker explains and they understand, it is not easy for them. All this is affecting the adherence of the children.
The social economic status of the caregivers must be uplifted because some of them do not even have transport to go to facilities to get the drugs for the children and others do not even have food. Because for them they know before the child takes the drug, they must eat and if at all there is no food they don’t give drugs and the child misses.
The ministry of health is facing a huge budget o treatment failure among adolescents and children. usually there is first line second line and third line treatment stages and now the challenge is that many of the children are now going for the third line which is the last treatment option and it is expensive and they go back to too many drugs which brings about pill burden and by the time the child grows, he or she is already tired of ARVs and some of them by the time they reach adolescent they give up on life and become reckless meaning we are always going to have new infections because of poor adherence
Research shows that as long as someone is adhering and they have suppressed transmission to the other partner is almost at 0% basically almost no transmission is they are taking drugs very well. Someone who is transmitting the virus to the child probably was taking their ARVs well-meaning they are transmitting a resistance virus to the child and in Uganda we are not able to do resistance testing at the beginning, it means the child will be given the drugs according to the guidelines of the ministry of health yet maybe those drugs are the virus resisting to. They will not work for the child and by the time resistance testing is done, a lot of time and resources are already wasted and the child might be having TB and other infections going on.
It is always like a team work. It is both effort from the caregivers and the health workers. If there is cooperation, with new treatment options on board, by 2030 we should have achieved the 95 95 95 target. Because of index testing, every new person that comes, the health team goes back to their home and test all the children and family members.