By: Lunga Memela (Communications Officer)
The latest report on levels and trends in child mortality by the United Nations Children's Fund (UNICEF) confirms that despite dramatic reductions in child and youth mortality over the last 30 years, the global burden of child and youth deaths remains immense. With this in mind, perhaps the most precious gift a mother can give her new-born baby is avoiding alcohol during pregnancy in order to afford them life-long health and to unlock their inherent development potential.
According to the Association for Alcohol Responsibility and Education (aware.org), fetal alcohol spectrum disorders (FASD) remain the leading cause of preventable birth defects and developmental disabilities in children around the world. The key message is that the damage caused by FASD is permanent, but it is 100% preventable. "Their tomorrow starts when you don't drink… All you need to do is to NOT drink when you are pregnant," warns the organisation.
International Foetal Alcohol Syndrome Day (FASDay) is observed annually on 9 September. It was first commemorated on the date 9/9/99 – the day being chosen so that on the ninth day of the ninth month of the year, the world would remember that during the nine months of pregnancy a woman should abstain from alcohol.
Every parent wants what's best for their baby, and surely this shouldn't only begin once the baby arrives. Instead, because parenthood comes with the intrinsic joy and responsibility to love and care for new life created, why not treasure the gift, put down the bottle, and give your new-born the best possible future?
Associate Honorary Professor at the University of KwaZulu-Natal and attached to the Fetal Unit at Inkosi Albert Luthuli Hospital's Foetal Unit, Prof Ismail Bhorat said FAS is a condition in a child that results from alcohol exposure during the mother's pregnancy that causes brain damage, neurobehavioral developmental anomalies, growth problems and birth defects. The problems caused by FAS vary from child to child but defects caused by FAS are generally not reversible.
"The reason that it is crucial for women to know about the dangers of consuming alcohol in pregnancy is that many of the disabilities that it causes are not reversible. There are serious anomalies that can occur in the offspring, in particular, facial feature anomalies, cognitive anomalies (learning disabilities, attention deficit anomalies, intellectual problems) central nervous system anomalies, birth defects and growth problems. So the woman is exposing her offspring to serious problems," he explained.
Fathers should not be left out of the conversation
Bhorat said fathers-to-be are crucial to the discussion as they could play a vital supporting role and comfort base. "If the fathers are drinkers they should be able to stop too as a support statement to their partners. Also, as fathers, they too will be impacted by anomalies, both functional and anatomical, of their child so they are part and parcel of the unit."
If a pregnancy is being planned, the mother to be should stop alcohol consumption before conception. If the pregnancy was unplanned, alcohol consumption should stop immediately as the mother confirms the pregnancy. "Alcohol intake in the first trimester is associated with increased risk for abortions and stillbirths," Bhorat advised. "If the mother is breastfeeding after delivery, she should abstain from consuming any alcohol until after the lactating period."
The social impact of FASD
"The lives of families living with children affected by FAS varies and differs depending on the severity and degree of the anomalies expressed in the children," said Bhorat. "In severe cases where there is a substantial intellectual deficit it would have a massive impact both emotionally and financially on the family as these children may end up in a 'special needs' education track. Lesser problems of attention deficit disorder, learning disabilities, cognitive disorders and hyperactivity can still impact substantially on families."
Dealing with alcoholism and pregnancy
Alcoholics who fall pregnant will need to seek professional help. A multidisciplinary team involving the obstetrician, physician, counsellor, psychologist/psychiatrist and possibly her general practitioner should be assembled to deal with, treat, monitor and support the patient.
"The isolation and social distancing that comes with COVID could impact on women who consume alcohol as these social mechanisms to combat the disease in itself can induce stress and worsen the habit. It may make it even more difficult for these patients to access help. In these scenarios it is crucial for their partners and families to be involved in helping them cope and to be able to identify when professional help is required," said Bhorat,
Towards raising continuous awareness
FAS is the most common preventable form of mental disability in the world and South Africa has the highest reported rate of FAS in the world. Statistics reveal that on the west coast of South Africa, 64 children per 1000 are affected (6.42%) making it one of the highest in the world. While there are continuous and joint efforts from institutions of higher learning, non-governmental organisations and health practitioners and social workers to raise awareness about FAS, more work is to be done to undo the general ignorance of the effects of alcohol on pregnancies.
Awareness can be increased by delineating special days of awareness, education at women's health clinics, and promoting media awareness programmes. Schools and universities, in particular, should be included in these awareness programmes.
By: Judith King (SA SURE Plus Copy and Content Editor)
Few among us would look forward to being pierced with a needle of any size, much less waiting for several hours at a clinic to have this done – and when this procedure is necessary to determine one's HIV status, it can be even more challenging for clients.
HIV self-testing – or HIV self-screening (HIVSS) – offers a fast, reliable and painless alternative to the fingerprick blood test. Using the OraQuick test-kit (quality-assured and approved by the National Department of Health), clients can collect their own oral-fluid sample by swabbing their gums and testing it with the kit materials, which yields a result within 20 minutes.
Health Systems Trust is supporting the introduction of HIVSS as a formal HIV Testing Services (HTS) intervention in facilities and communities, in collaboration with the Department of Health (DoH). Trained HST and DoH Lay Counsellors work from facility entry points − waiting areas or consultation rooms − in high-burden facilities to assist clients with the HIVSS process, and the service is delivered by Outreach Teams in communities.
At facilities, clients who are interested in carrying out the test immediately may do so in the Lay Counsellor's office or in pop-up tents on the clinic premises (which ensures client confidentiality during screening and interpretation of results). The Counsellors provide pre- and post-test counselling, and guidance on how to administer the test and interpret the result, whether positive or negative.
If an HIV-positive result emerges, the client is referred immediately to a nurse who assesses the person's readiness for initiation on antiretroviral therapy (ART). If the result is negative, the client is encouraged to return to the facility in six weeks' time for a confirmatory test.
The clients' contact information is recorded for follow-up phone calls and home visits, which are important for providing emotional support and ensuring that they understand the need to be re-tested and receive treatment if necessary, along with the offer of testing for partners and children.
Assisted HIVSS at Mpumuza Clinic
At Mpumuza Clinic in the uMgungundlovu District of KwaZulu-Natal Province, six HST and three DoH Lay Counsellors are instituting HIVSS for clients in the Acute, Mother and Child, and Chronic Streams. First, the Counsellors provide health education about HIVSS and the OraQuick test to promote the service. Willing clients are then ushered to one of three pop-up tents just outside the clinic building, where they can self-administer the OraQuick test under the Lay Counsellor's guidance and supervision.
Members of the HST team that assisted HIVSS at Mpumuza Clinic in uMgungundlovu
"The involvement and support of the clinic's Operational Manager has been key to securing the DoH staff's buy-in for the service," explains Palesa Jali, HST's Area Co-ordinator. "He understood that the concept enables management of approximately three client HIV tests within 30 to 40 minutes, including pre- and post-test counselling. This improves the clinic's performance towards reaching its HIV testing targets. It also shortens the clients' waiting time and helps to decongest the clinic space, which is especially important during the COVID-19 pandemic."
HIVSS pop-up tents outside the Mpumuza Clinic
HST Area Co-ordinator Palesa Jali discusses HIVSS with a client
The primary benefit of HIVSS is its patient-centred focus in enhancing access to and acceptability of HTS and linkage to care. Assisted HIVSS ensures that people in HIV high-burden populations who are undiagnosed or hard to reach – notably men and adolescents – have more options for knowing their status. In turn, this contributes to achievement of the UNAIDS global '90-90-90' and 2030 testing, treatment and viral suppression goals.
Mpumuza Clinic's Facility Team Leader, Phumzile Mtolo, confirms that although women make up the majority of the facility's HIVSS clientele, good numbers of men and young people are taking up the service. "We've found that youth in the 12- to 15-year age group and men are happy to use the OraQuick test because they can avoid the needles. Also, men prefer not to be inconvenienced, so if there is a group of male friends, they can do their own testing in the tents simultaneously and this works – they don't procrastinate."
"If the client has been well educated beforehand, it's much easier for them," adds Mtolo. "They appreciate seeing the result for themselves, whatever it may be, and accept that it's as accurate as a blood test. Those whose first results have been negative are also returning for their confirmatory tests six weeks later. The quality of pre-counselling is therefore vital because it's a new service, but if it's done correctly, people are open to it."
DoH Lay Counsellor Busiswe Mthetwa agrees. "Together with the HST teams, we support each other with implementing HIVSS, which clients love because there is no fingerprick required. Initially some don't believe that the test can be done with oral fluid, so it's very important that we relay the correct messages to them, as guided by our HIVSS training. We take care to inform clients that the OraQuick test is optional; we don't want to infringe on their rights and we must respect their decisions, although very few clients refuse this option. We listen to the clients' concerns and reassure them."
"I chose HIVSS because it's much easier in the mouth than the fingerprick," says client Nonhlanhla Nxumalo. "This is my six-week re-check, and I came back for it because there's no pain. I enjoy the pre-test counselling, as it reminds me of things I may have forgotten when the initial counselling and test were done. I did not doubt my result, as the Lay Counsellor explained everything so well."
Uptake of HIV treatment
Immediate enrolment on treatment among HIVSS clients whose result is HIV-positive is not as easy. "Many are still not ready," Mtolo says. "Last week a 15-year-old was very upset about her result, but she came back for treatment. Some refuse point blank and probably don't want to disclose, so they make excuses about having to bring their partner back with them… but the Lay Counsellor will arrange with the Index Contact Testing team to follow up with them."
HIVSS integration with index contact testing
In both facility- and community-based settings, index contact testing is an integral approach for reaching untested populations. All client interactions include an offer for the patient's partner or child to use HIVSS kits, with support for partner notification.
Re-testing in the community is also being implemented by Outreach Teams. "Our current concern is the low headcounts in the clinics because of COVID-19 and other factors like multi-month script dispensing, so we're not seeing the usual number of clients coming into the facility," says Jali. "We should see better HIVSS uptake once more clients come in, but in parallel, the Outreach and Index Contact Testing teams are finding clients for HIVSS at household level."
"The uptake of HIVSS is currently higher in facilities than in the community," notes Felicity Basson, HST's HIV Testing Services Co-ordinator for KwaZulu-Natal. "This can be attributed to HIVSS being rolled out at facilities by our staff with the support of DoH personnel, and that we cover more facilities with direct service delivery than the Outreach Teams do."
Collaborative training, tools and roll-out plans
Earlier this year, HST and the Provincial Department of Health jointly developed an HIVSS Standard Operating Procedure and screening tools, and a revision of the HTS Register to include HIVSS. Training of DoH staff on these tools will be rolled out in other HST-supported districts. Prior to the outbreak of COVID-19, HST introduced assisted HIVSS at colleges, universities, factories and farms during wellness campaigns.
"HIVSS targets will be set for all teams at facility and community level," says Basson. "We hope to leverage private pharmacies in eThekwini to supply the OraQuick test-kits, and to extend HIVSS implementation to other workplaces and truck-stops, all the while observing COVID-19 precautions."
All applications of HIVSS conform to the World Health Organization's 'Five Cs': Consent, Confidentiality, Counselling, Correct test results, and Connection.
By: Jennifer Ngcobo (Clinical Advisor)
Since 20 April 2020 a team of clinical advisors from HST's Unfinished Business for Adolescent and Paediatric HIV project joined the eThekwini district COVID-19 screening and testing teams to assist with testing activities in the field. Following a half-day's training on the testing protocol l, we were allocated to different field teams covering various parts of the district. These teams had already been at work in the field and were comprised of various stakeholders, such as Department of Health and municipality nursing staff, partners supporting health services, metro police and community leaders from surrounding communities.
On a typical day in the field each team meets at a specified location in the morning for a briefing. During this meeting the team leaders provide a directive on what the day will look like, including an allocation of testing sites for the teams. The briefing meeting also involves a reflection on the previous day's work and reporting on the total number of tests conducted by the team. A complete testing and screening team consists of a driver mobilizer, outreach nurses and metro police.
The briefing session is also used to replenish supplies, such as test kits and stationery, in preparation for the field work. This task is not allocated to a single individual to complete, rather all team members contribute to ensuring that the team is prepared and ready. After the briefing teams travel to the field to conduct testing as per the schedule. The current strategy is to provide testing for all clients, with the aim of reaching a specified testing target every day.
Normally, the day before testing is to be conducted in a residential area a mobiliser will visit the area to get buy-in from the community leaders, in preparation for the testing activities. However, when teams are allocated to malls and shopping centres mobilization in the area happens on the day of the testing. When testing is done in complexes one team member — normally the person leading the team — asks for permission to enter the building.
Once in the specified area the team sets up stations in preparation for the day's work. Often this includes setting up the mobile health units and gazebos. The team lead then assigns each member a task: one member is allocated to testing, another assists the tester and others are responsible for completing the relevant forms that are part of the screening and testing process.
At the end of each day the team lead checks the specimen cooler boxes to see if the specimens and lab forms match, before taking the specimens to the NHLS mobile unit and ensuring that any waste is discarded properly.
Although this is how a typical day is structured, one soon learns that field work is often unpredictable. In the two weeks that I've spent on a COVID-19 community screening and testing team I have learnt the following:
Below are some photos from the field.
One of HST's testing teams outside a mobile unit, dressed in their PPE
A closer look at the PPE that our field staff are required to wear
Someone once said that the true meaning of Christmas is not to open gifts, but to open our hearts. Despite the commercialisation of this holiday, it is always a time when communal spirit rises and spreads out through acts of charity and kindness.
In the daily round of their work throughout the year, the SA SURE project's Youth Ambassadors (YAs) – who form part of our district teams supporting the Department of Health's Adolescent and Youth-friendly Services (AYFS) – encounter many young people in dire and often tragic circumstances. While running a holiday programme at the end of 2019 in eThekwini, the YAs sought additional ways to relieve the plight of several orphaned and vulnerable youngsters – donating their own funds to do so.
Under the guidance of AYFS Champions, the YAs' role entails engaging with youth in facility-based Youth Care Clubs and running activities in AYFS Chill Rooms, to mobilise HIV Testing Services, distribute condoms, and educate groups about teenage pregnancy, gender-based violence and general health issues. When young clients in need are identified, the YAs facilitate their access to health and social services through referrals to the clinic and relevant government departments, and recruit them for support groups and psychosocial advice where necessary.
Ten more Youth Ambassadors were added to the eThekwini team in the latter part of 2019, bringing the total of YAs are supporting the facilities to 50. They worked through the festive season to strengthen AYFS implementation, creating a surge in condom distribution, which is so important because safe sex practices reduce HIV infection incidence and prevalence.
The YAs function collectively and in strong partnership with the eThekwini Metro Department of Health to respond to youth health needs. Nthabiseng Malakoane of the Metro's Health Unit explains: "We work with HST's Youth Ambassadors and AYFS Co-ordinators to implement the Department of Health's Adolescent and Youth Health Programme. During December 2019, we identified several child-headed households in Verulam with young clients in urgent need of support in the form of food and toiletries."
"One young girl, whose caregiver grandmother had passed away that month, was not sure how she would be able to return to school in 2020. As a team, we felt that it was important to take personal and practical action in such cases. We gathered donations from colleagues to fund supplies of groceries and school fees. The Youth Development Office in the eThekwini Mayoral Parlour helped with provision of school uniforms."
After giving a health talk to promote AYFS and HIV testing at Amaoti Clinic in Phoenix, the YA referred a young girl who was feeling ill for testing, and she was found to be HIV-positive. She had previously been enrolled on HIV treatment in Stanger, but had defaulted on her medication when she moved back to her late parents' house after being raped by her uncle. The girl was re-initiated on antiretroviral therapy and received adherence and psychosocial counselling, and her sexual assault case was referred to the Department of Social Development. Through staff donations, the YA team supported the girl with provision of groceries.
Youth Ambassador Mbali Mzobe secured sponsorship from Vodacom for school stationery, which was delivered to Montarena High School in Chatsworth and Ndukwenhle High School in Umlazi R section on 12 February 2020.
Learners with their Vodacom-sponsored stationery packs.
Our AYFS team members are diligent and passionate about recognising their young clients' dignity and translating this commitment into creative, tangible support. Nthabiseng concludes: "Together, we want to do more to help young people and give them hope."
Health Systems Trust, together with the TREATS consortium, and the London School of Hygiene and Tropical Medicine (LSHTM), offered a Masters Fellowship to a promising young statistician who is now pursuing a Masters degree in medical statistics at the LSHTM. At the end of 2020 he will return to South Africa for a one-year work attachment to the South African TREATS study site with the research programme of the Tropical Epidemiology Group (TEG) at LSHTM.
Read more about the TEG Fellowship here.
Meet Jacob Busang – South African TREATS TEG Fellow 2019.
1. Tell us a little bit about yourself? What program are you in at the LSHTM?
My name is Jacob Busang and I was born and bred in Shakunyaneng Village, in the North West Province, South Africa. I completed high school in 2014 at Thomas Makgatho High School (now called Mmamogwai Secondary School). I completed a Bachelor of Science (BSc) Mathematical Sciences at the Sefako Makgatho Health Sciences University (SMU), majoring in Mathematics and Statistics, in 2017. Followed by a BSc Honours in Statistics at SMU in 2018. All these degrees were conferred with distinction pass (cum laude).
On the 1st of April 2019 I started my internship with the National Research Foundation (NRF) and was placed as a Biostatistician at the Perinatal HIV Research Unit (PHRU), a division of WITS Health Consortium.
I am Currently doing a Masters in Medical Statistics at the LSHTM. It's a one-year full-time taught masters which commenced in September 2019.
2. When did you realise that you wanted to pursue a career in statistics or research?
At first my interest was in Actuarial Science, however, I pursued a BSc with the hope of eventually moving into Actuarial Science. Along the journey of my BSc I just fell in love with statistics and decided to pursue a career in statistics.
3. Which aspect of the health sector gets you most excited?
I'm most interested in applying my statistical skills and knowledge in public health with a focus on TB and HIV/AIDS given the high burden of HIV and TB in South Africa.
4. Where do you see yourself in 10 years?
By then I would hope to have completed a PhD and be Dr Busang and hopefully one of the leading statisticians in South Africa. I hope to be part of one of the leading research institutions doing important research that brings about positive impact and change to our lives and the health sector overall.
5. What is the best piece of advice you've received?
Explore the world and collaborate. Basically, this means that "no man is an island. No one is self-sufficient; everyone relies on others".
6. Who inspires you? Who are some of your role models?
I've been inspired by many people I've met in my life, the likes of Dr Mathews Katjene, Prof Solly Seeletse, Dr Neil Martinson, my friend Keatlegile Mabena (author of Breaking the Chains), the list is just too long. Last but not least is Prof Kennedy Otwombe (PHRU), who is the one who encouraged me to apply for the TREATS TEG Fellowship.
7. What advice would you give to students looking to pursue either studies or a career in statistics?
Statistics is a growing field and statisticians are in demand, especially in Africa. But one must not find oneself in a career simply because it is in "demand". A person pursuing studies or a career in statistics must demonstrate a love and interest for it, possess problem-solving skills and understand data and numbers. One will need analytical skills and the ability to apply critical thinking.
by Roma Ramphal, CCMDD Provincial Co-ordinator: KZN
Health Systems Trust (HST) has embarked on a journey with Technovera, a South African company founded by South African engineer Neo Hutiri, who invented the Pelebox Smart Locker to improve access to medicine for patients with chronic diseases in under-serviced communities.
The purpose of the Pelebox is to establish a cost-effective, convenient, quick and efficient alternative medicine parcel collection system.
Pelebox can accommodate up to 1 500 collections in a month, so that if a facility has fewer than this number of patients, all CCMDD medicine parcels held at the facility may be collected from the Peleboxes installed on its premises.
The Pelebox allows a facility to dissolve its Spaced Fast-Lane Appointment (SFLA) collection point − a facility-resourced internal pick-up point where patients registered on the Central Chronic Medicine Dispensing and Distribution (CCMDD) queue for their medicine parcels. The Pelebox thereby relieves the facility staff of managing the SFLA and helps to decongest the clinic.
By making patients' access to medicine more convenient, rapid and efficient, usage of the Pelebox also helps to increase their adherence to medicine, and thus supports South Africa's achievement of the second and third '90s' of the UNAIDS 90-90-90 targets.
HST assessed several potential Pelebox sites according to Technovera's criteria for installation − which include an undercover area with minimal exposure to the weather, an electrical power source, Internet connectivity, interoperability with existing CCMDD systems, and proper drainage for the cooling system. HST has installed Peleboxes at Prince Cyril Zulu Communicable Disease Centre, Savannah Park Clinic, Mzamo Clinic, Chesterville Clinic and Umlazi N Clinic in the eThekwini District of KwaZulu-Natal.
What's inside the lockers?
The lockers contain CCMDD-registered patients' medicine parcels packaged in brown boxes.
What type of medicines are offered through the CCMDD Programme?
The programme offers medicines that are prescribed for all types of chronic conditions.
Who can choose the Pelebox?
Any patient who is registered on the CCMDD Programme can choose the Pelebox as a collection-point option. The patient must have a cellphone number or access to a cellphone number through which to receive an SMS that provides him or her with a one-time Personal Identification Number (PIN).
When can a patient come to the Pelebox to collect a parcel?
If the Peleboxes are stationed outside the clinic, they are accessible 24 hours a day, seven days a week. At some clinics, the Peleboxes are installed inside the clinic and are accessible only during the clinic's hours of operation.
What happens if a patient loses his or her one-time PIN?
The patient can access the locker with his or her 13-digit ID Number and cellphone number. The patient can also request the system to resend the PIN.
What happens if the locker does not open?
The patient should enter the clinic and ask for the help of the Pharmacist Assistant.
Does the Pelebox system allow the patient to update his or her cellphone number when collections are made?
Yes, it does.
What is Health Systems Trust?
Health Systems Trust is a non-government organisation that supports health systems in partnership with the Department of Health to improve public health patients' experience of service delivery.
By Roma Ramphal, CCMDD Provincial Co-ordinator: KZN
A very exciting medicine parcel collection-point model has been pioneered by Health Systems Trust (HST) in order to increase the number of Central Chronic Medicine Dispensing and Distribution (CCMDD) external pick-up points available in under-serviced areas.
Providing the public with more options for convenient collection of their chronic medication allows for the decongestion of high-burden facilities and in thus the provision of quality health services to those requiring care, and supports patients' treatment adherence by ensuring that they have stocks of their medication as and when they need it.
The number of external CCMDD pick-up in eThekwini District has increased by 79 over the last year; however, there are still communities that are underserviced. To reach these patients, HST's mobile pick-up point vehicle will enable them to collect their medicines until a fixed pick-up point can be established in their area. The van can also service any area as the need arises.
In preparing to launch this initiative, numerous potential 'park and issue' sites recommended by public health facilities were assessed for suitability. Multiple challenges were noted, among which was the requirement for individual permissions and rental fees for parking the vehicle. In order to roll out a stronger model that would be expandable and sustainable, HST embarked on gaining approval from selected Municipal Libraries across eThekwini to park the mobile pick-up point vans in their outdoor spaces. Six library sites were chosen, based on the volumes of CCMDD-registered patients currently collecting in the clinics' Spaced Fast-Lane Appointment System queues in under-serviced locations.
eThekwini Municipality's Head of Health and Head of Libraries for eThekwini granted approval for use of the requested spaces and supported the implementation team's planning with useful recommendations.
Three 2019 Mercedes Sprinters were purchased and modified to facilitate this medicine parcel distribution plan. Each van will be used at two libraries, alternating mornings and afternoons, to ensure that every site has full cover for every day. Site evaluations of the libraries' grounds were conducted to ensure that safe spaces are available for the vehicles to park.
Identifiable by eye-catching branding, each van is insulated and clad to maintain an even temperature inside the vehicle, and are fitted with supplementary air-conditioners that maintain a regulated temperature while the vehicle is parked. The vehicles are fitted with pull-out awnings to protect patients from sun and rain. The medicine parcels are stored in lockable aluminium cages for transportation, and the vans are equipped with a tablet for use of the CCMDD electronic record system, SyNCH.
HST concurrently identified a space at the Durban Head Office in Westville in which to operate the CCMDD Receipt and Dispatch Office. Once it was equipped, the space underwent a pre-qualification assessment by the eThekwini Municipality.
To register this site and the vans as external pick-up points, HST signed a Non-remunerated Service Provider Service-level Agreement with the Department of Health. The required Project Plan, Risk Management Plan and proof of comprehensive insurance cover for the vehicles were submitted as Addenda to the Agreement.
Post-Basic Pharmacist Assistants with Code 10 driver's licences have been recruited as Drivers and Issuers for the vans.
This pilot project will begin in eThekwini as soon as approval from National Department of Health has been confirmed. The project will be piloted for six months and evaluated before replication in other districts is considered.
How does the Mobile Van Project work?
Community engagement and marketing:
To promote the use of the vehicles, and to inform patients when they can collect, their medication from the mobile pick-up points, HST has designed a CCMDD Van Schedule flyer that will be given to every patient who chooses to collect medicine parcels at any of the six participating Libraries. HST has also re-designed the eThekwini CCMDD Pick-up Point List and segregated pick-up points into suburbs to allow for convenient access.
The mobile pick-up vans feature CCMDD branding
Pharmacists in the tempreture controlled van
Medication parcels will be locked in these cabinets while they await collection
"My daughter's adherence support club has benefitted me just as much as it has helped her," says Sebenzile Vilakazi*
Walk into the adolescent support club at Pinetown Clinic on a Saturday and you might be surprised at the number of adults you see. While we know that parents and grandparents have a role to play in their children's adherence to antiretroviral treatment (ART), what we sometimes don't realise is just how much the older generation stands to gain from the clubs themselves.
That's because groups like this one are now running programmes to equip parents and guardians, as well as their children. Sebenzile lists parenting skills, life-skills coaching and emotional support as by-products of the adherence support club she has attended with her daughter for the past three years.
A sickly baby, Sebenzile's daughter was finally diagnosed as HIV-positive at the age of two, and was promptly initiated on treatment. She continued to take her ART syrup, moving on to a tablet when she was old enough.
"When she began to question why she was taking medication − around the age of seven − I reassured her that it was to treat the ulcers on her legs," says Sebenzile.
Disclosing her daughter's status didn't come easily to Sebenzile. She found it difficult to engage in conversation, fearing her child's reaction and volatile emotions. Already rebellious and disdainful of authority, an HIV-positive disclosure could push her daughter even further down the wrong path − or so Sebenzile thought.
Sebenzile points to some photographs of the adherence support club in the dedicated Adolescent- and Youth-friendly Services consultation room at Pinetown Clinic.
However, in 2013 when Sebenzile's daughter no longer wanted to go to school because the ulcers on her legs caused other children to discriminate against her, Sebenzile went to Pinetown Clinic and asked the nurse to assist her with the disclosure process. She also wanted to identify a support club.
The adherence support club she now attends with her daughter is run by Sister Gwavuma, the Adolescent- and Youth-friendly Services (AYFS) Champion at the Pinetown Clinic. The club allows adolescent clients to spend some time chatting and having fun together before they have their regular check-up and collect their medication.
At the same time, it allows the adults who attend to learn together with their children. Bolstered by the life skills and encouragement she received at the adherence support club, Sebenzile went on to start a business making and selling shoes, allowing her to support her family. She is now teaching the other parents about how to run small businesses.
The group of parents and guardians who attend the adherence support club are more than just acquaintances who enjoy each other's company once a month – they keep in touch regularly via a WhatsApp group which allows them to ask each other questions, remind one another of appointment dates, and provide the motivation to keep coming back.
And coming back is certainly having the desired effect – Sebenzile's daughter is now taking charge of her own treatment, ensuring that she is virally suppressed, taking her medication on time, and regularly reminding her mother of important dates for blood tests and follow-up visits.
"I will be very heartsore if the group closes," says Sebenzile.
But happily for her, Sister Gwavuma's dedication to the longevity of the adherence club means that this group and the others like it aren't likely to close any time soon.
Enquire at your local clinic about support groups and adherence clubs for adults and children on chronic medication, not just ART.
* Not her real name
Did you know that the best way to reduce new HIV infections is to ensure that patients remain on treatment and become virally suppressed?
An innovative case management approach, introduced by Health Systems Trust in uMgungundlovu District, is helping patients to stay in the system, adhere to their treatment, and become virally suppressed.
uMgungundlovu District in KwaZulu-Natal currently has the highest HIV prevalence in the world.
Case management focuses holistically on each individual and recognises the variety of factors that affect patients' ability to adhere to treatment, from transport and nutrition to depression and family problems. Case Managers develop a comprehensive plan for each client that focuses on both psychological and clinical care.
Phetha chatting with her case manager Nokwanda Mbele
Ntombenhle Phetha (33) was about to stop taking antiretroviral medication when an HST Case Manager contacted her and changed her mind.
"The Case Manager came to my house just after I'd decided I wasn't going to go back to the clinic, because I was very unhappy with the care I was getting there. It was always difficult for them to find my file and the nurses spoke badly to me. I'm also being treated for depression and they would call me for an appointment on one day for my psych meds and on another day for my ART. Sometimes I would queue for hours only to find they didn't have stocks of the medicine I needed."
Unemployment and poverty also leads to patients quitting ART because they don't have enough food at home. "It is difficult for people to take their treatment without eating a meal first. How can you take meds on an empty stomach?" says Phetha.
Phetha is a lesbian, which has created many family problems. "These problems led me to think about suicide quite often, which is why I got depressed and had to take these psych meds."
Nokwanda Mbele was assigned to Phetha's case and has been instrumental in keeping her on treatment. "Nokwanda had noticed that I'd been missing my clinic appointments. I told her I wanted to stop treatment or move to another clinic. Nokwanda promised she would take care of my case so that I don't have to queue for such a long time. She also arranged for me to collect both my treatments at one appointment. I feel like I have a champion, someone who is on my side when I come to the clinic."
Phetha says that she feels much stronger now Nokwanda is acting as an advocate for her as a patient. Nokwanda helps her to remember to take her medications and to attend her clinic appointments. "If I have problems, I can call and explain to her. This makes me feel I am not alone."
Once Phetha has completed 12 months on treatment, and is clinically stable and virally suppressed, she will graduate to the CCMDD programme, which allows her to collect her medication from a convenient pick-up point such as a retail pharmacy without having to queue at the clinic.
Siboniso Cele (39) is a security guard and the father of one child. He works 12-hour shifts in a post far out of town, which makes it difficult to get to the clinic during opening hours.
"This system is much better because now I queue for a maximum of 30 minutes. Before we would wait a very long time, even the whole day.
The Case Manager helps me to keep my appointments by phoning to remind me. After one year, if I am stable on my treatment, I'll be able to join CCMDD and my medication can be collected by someone else from a place like Clicks, or on my way through town to work, I can just stop and collect my medicine."
Cebisa Ngcobo (39) says that the new system not only helps her to maintain her treatment, it also keeps her safe from crime.
"Before this new system, I would have to queue at the clinic very early in the morning while it's still dark. If you came later, you would end up waiting the whole day. When we walked in the dark we would get robbed by the tsotsis who would take our phones and even steal our antiretroviral medicine.
But now my Case Manager helps me to set a convenient time for my appointments and I don't even wait more than 10 minutes. I'm so happy with this system that I encourage others who have been put off by bad experiences in the past to return to the clinic; I tell so many people about it that they say it's like I'm advertising. That's good. People must know that things are getting better now."
Jabulani Mkhize (24) is a chef and has been on ART for almost a year. He says that the introduction of the case anagement system has definitely helped him to adhere to his treatment. "My Case Manager will call to make sure that I can attend my appointment."
"If you know your status, you don't need to be ashamed. Life goes on."
He says that the stigma around HIV is decreasing in his community: "People are more educated about HIV now, to the point that we can even joke about it with our friends. There are also other people in our family on treatment. I am gay and I think there is much more stigma about my sexual orientation than my HIV status. Some of the counsellors and nurses at clinics should be educated on how to engage with us and how to ask questions sensitively."
"Case management entails closer and more regular communication with patients – proactively managing their condition before they withdraw or disappear from clinic engagement," says Nomvula Radebe, HST's District Co-ordinator for uMgungundlovu. "This begins the minute after diagnosis, so that there is no delay in linkage to care. The key actions are clustering, documenting and reminding – all the while carrying the patient through a supportive care plan."
To access the first edition of HST's Phakama Digest – which features an in-depth perspective on the technical aspects of implementing the HIV Case Management Model – go to: https://www.hst.org.za/publications/HST%20Publications/PHAKAMA%20DIGEST%20July%202019.pdf
Thandeka Radebe (31) is a Youth Ambassador, focusing on the lesbian, gay, bisexual, transgender and intersex (LGBTI) sector. She is originally from Mpophomeni in KwaZulu-Natal.
"As youth, we are not only infected and affected by HIV, but we are also located within a complex set of social ills such as violence, youth unemployment and gender-based discrimination, which are all root causes of HIV.
A young woman who tries and fails repeatedly to find a job is vulnerable to 'blessers' – older men with money. She needs to engage in this kind of transactional relationship to survive and help put food on the table at home.
We also see a sharp rise in HIV infection among young men who are not gay, but are sleeping with other men just to get money. These young men are not educated about keeping themselves safe when they have sex with other men.
Many lesbians in the townships do not feel safe in their own communities because of this thing called 'corrective rape' − when men attack and rape lesbians, saying that they will 'convert them to be straight'.
As a woman in South Africa, you are not safe. If you are a lesbian, you also have to worry about being targeted by people who want to rape and kill you for being a lesbian. These are the things we are facing.
So, it's important that we understand this full picture when we are trying to address HIV. If we don't understand this complex context, it will be difficult for initiatives to make any headway.
I'm lucky in that I personally have never encountered any real negativity or lack of acceptance for being lesbian; but across the country, especially in townships, I notice that there is still an 'us and them' situation between homosexuals and heterosexuals. People say that they accept you, but you will still hear homophobic comments.
Sometimes the people making these comments don't seem to understand how prejudiced they are. So, if they see a picture of a lesbian couple, you will hear comments like 'Oh, she's so beautiful. How can she be a lesbian? What a waste!' How is a woman being loved by another woman 'a waste'? Because she is not sexually available to men?
People also seem to think that if I'm a lesbian I'm not actually a woman. They literally say: 'I don't see you as a woman'. This is not real acceptance − it is maybe tolerance. Those are not the same thing.
There's a long journey ahead and a lot still to be done. People still think that 'intersex' is the same as 'transgender'.* Lesbians are still called 'gays', even though that is a word that refers to male homosexuals. Bisexual people are called 'twin plugs' which is very disrespectful.
I joined HST's team of SA SURE Youth Ambassadors because I want to educate young people about LGBTI issues and human rights in general.
We need to deal with the many root causes of HIV to put a serious dent into this epidemic.
* 'Intersex' is a general term used for a variety of DSDs (Disorders of Sex Development) are medical conditions involving the way the reproductive system develops from infancy (and before birth) through young adulthood.
* 'Transgender' relates to a person who suffers gender dysphoria or a feeling that they have been 'born into the wrong body'.
HEALTH SYSTEMS TRUST - CONTACT DETAILS
34 Essex Terrace, Westville, Durban, 3630
+27(0)31 266 9090