The Advent of Antiretroviral Therapy in South Africa

The history of HIV/AIDS and response to the raging epidemic in South Africa has been a tumultuous one to say the least. The first case of AIDS in South Africa reported in 1982 was of a homosexual man who had contracted the virus while in California. It was over 20 years later in 2004 when the government finally began making antiretroviral treatment publicly available. It's sobering to think that was only 9 years ago. Here's a timeline and description of what happened in that HIV/AIDS landscape during that period.

BMSF started unrolling HIV/AIDS treatment programs in 2001 (with SA government's blessings of course) with specific target populations, like pediatrics, and were moving ahead with general adult populations by 2004. One such treatment centers funded by BMSF was the CDC Clinic at Ladysmith Provincial Hospital, which is also part of in the Impilo Yonke Mental Health and HIV/AIDS project I'm involved with. Here are some images from the hospital.

Tune in to the next post about my time in the CDC clinic.

Breast Cancer in Swaziland

The Kingdom of Swaziland is a landlocked country, roughly the size of the state of New Jersey, situated northeast of South Africa. It's one of the few absolute monarchies still remaining, and as such has two capitals: Lobamba, the royal capital, and Mbabane, the administrative capital. It is here in the Mbabane breast cancer clinic that I've been scoping out a possible project with the Swaziland Breast and Cervical Cancer Network (SBCCN).

Breast cancer is the most common cancer in women in both the developed and developing world. There is a widespread belief that cancer plagues mostly higher-income countries; however, that is not the case. For example, almost 50% of breast cancer cases and 58% of deaths occur in the developing world. Although incidence and survival rates vary greatly worldwide, survival rates are lowest in developing countries, attributable to lack of early detection programs, leading to high proportion of late-stage disease presentation, lack of adequate diagnosis and lack of treatment facilities.

This is the outpatient building of the Mbabane Government Hospital in which the breast clinic runs. Patients occupy every available space in the corridors from early morning waiting to be seen. Babies wailing, children screaming, adults chattering- if I closed my eyes, the sounds would lead me to think I was rather at a busy market. 

There is currently one oncologist in the entire Kingdom of Swaziland...and he's from Cuba. He is a jolly fellow who's been in the country for a little more than a year now. His English is very basic (his conversations are mostly composed of nouns, pronouns, and present tense verbs) and he calls everyone "my friend." I learn that he's 1 of 19 Cuban physicians here. There's a bilateral exchange agreement between the governments of Cuba and Swaziland, in which Swazi doctors go to Cuba to train and Cuban doctors go to Swaziland to provide much needed specialist care. It's mandatory public service; instead of being drafted for military service, you're drafted for medical mission. 

In the course of 4 hours, we saw 39 patients. That's nearly 10 patients per hour! Documentation is a meager process here, as notes are scribbled into the patient's Health Card. This is the equivalent to the medical chart, but instead of staying with the institution, patients carry it with them at all times (and it can get pretty ragged).

Patients come for screening, examination, follow-up, and referrals. The clinic takes place in a very small room containing a desk, chairs, and a room divider that separated the examination table. There were 7-8 people in the room at any given time, with 2-3 different patients, leaving very little patient privacy or confidentiality. This was the epitome of a HIPAA compliance nightmare.

There are not many options for women who are found to have breast cancer here: either surgery or do nothing. There is no availability of radiation, chemotherapy, or targeted therapy. Hormone therapy is available, like tamoxifen, but the tricky part is that testing is not done here to determine whether the tumor is estrogen/progesterone receptor positive and whether therapy is warranted. Patients who can afford it come to South Africa go to seek treatment. The Swaziland government used to have a program to send breast cancer patients to SA, but for unclear reasons, the program no longer functions. Most patients are from rural areas, and they struggle to collect enough money to ride the taxi bus, or kombis, to the clinic (~R5 or $.50). Even when early screening and diagnosis is achieved, it sometimes is fruitless as patients can't afford to come back for follow-up. Until the time Swaziland expands its health care delivery system, most patients who are diagnosed will go untreated. 

October Breast Cancer Awareness Month

The Swaziland Breast and Cervical Cancer Network (SBCCN), a NGO sponsored by BMSF, recently ended a month-long campaign to raise awareness of breast cancer in October. It started with a ceremonial launch that included official remarks from the Swaziland Department of Health, WHO, and BMSF. The most exciting parts were by far the traditional singing and dancing by Swazi women. Here's a taste:

Last weekend, my colleagues at BMSF and I participated in the 10km Brave the Breast Walk (it was really more of a hike) up Sheba's Breasts. Named after the legendary beauty and mysterious Queen of Sheba from Ethiopia, who supposedly seduced King Solomon, these distinctive twin-peaks rise above Ezulwini Valley in Swaziland. The views as we ascended the mountain was absolutely breathtaking. Southern Africa has such a natural beauty, and hiking has by far been one of my favorite activities. Swaziland is no exception.

Before the walk with the Royal Swaziland Sugar Corporation, the main sponsor for the walk.

We finally made it to the top!

We relaxed at Mantenga Waterfalls on our way down. Having dipped our feet into the fresh, cold water, we were so relaxed that we lost track of time and were the last participants to return to the finish line. :)

Women of South Africa

Everywhere I go in the community and every community I go to in this country, I notice a lot of women. In the professional realm, they run the Department of Health clinics in the townships, they reach out to clients as community health workers, and they manage the NGOs. It may be that the healthcare sector is dominated by women here, but there are very few men to be found. It's also common to see women running households, perhaps the men are off working in the mines, and it's even more common to see older women, grandmothers running it.

As I mentioned in the previous post, many children were orphaned when the HIV/AIDS epidemic stole the lives of parents. Many of them sought refuge with their gogos, or grandmothers, who would now take care of their grandchildren since their own children had passed. 

In 2001, Bristol-Myers Squibb Foundation funded a project now known as GAPA, Grandmothers Against Poverty and AIDS. This project was designed to meet the needs articulated by gogos living in Khayelitsha, a low socioeconomic area outside Cape Town, who were now taking care of their grandchildren. GAPA runs workshops for gogo's with the aim to empower them to take charge of their lives and circumstances through education and transfer of practical skills, like parenting, vegetable gardening, and business/income generating skills.  

There is a strong kind of woman in South Africa. Women, especially gogos, hold together the fabric of this society.

Orphans and Vulnerable Children

With the HIV/AIDS epidemic raging at full force during the '90s and 2000s, entire families were destroyed when it took the lives of mothers and fathers alike. Hearing stories from that time, it was commonplace to have dozens of funerals take place each weekend in one community alone. The result was a flood of children left behind as orphans. At some point, extended families cared for orphans, but the vast number of deaths have left children alone, to be cared for by a grandmother or by an older sibling in orphan-headed households. This is one manifestation of how HIV/AIDS has drastically changed the social fabric of South African society.

One response to this crisis and the needs of orphans and vulnerable children (OVC) was the establishment of halfway houses, child care centers where children could drop in during the day. Mpilonhle founded 18 halfway houses in the rural uThukela district surrounding Ladysmith. It is estimated that the HIV/AIDS prevalence rate in this area is about 40%, and there have been over 3,000 OVC identified. Each halfway house cares for more than 50 children.

Vezimpil Project is one of the halfway house I visited with Mpilonhle.

The halfway house programs take place in donated buildings that are hosted by a family or located in community centers. OVC go to the halfway house in the morning before school for a hot breakfast and return again after school for lunch, assistance with homework, grooming, laundry, life skills, art, and recreational activities. As one can imagine, given the circumstances OVC face at very young ages, many of them have great psycho-social needs. There are workshops to help children deal with the trauma and the pervasive death surrounding them. Positive changes, in regards to school attendance and performance and health and wellness, have been observed in OVC who attend these halfway houses.

Vezimpil Project is housed in a long, narrow room. Here, the volunteers, who only receive a small stipend, cook and serve the meals and the children gather.

In the past year, the kids have helped paint and decorate it so as to create a warm and inviting atmosphere. The next project involves getting books for the children and shelving to store them.

Important messages are painted on the walls reminding the children about how to maintain their health and wellness. 

As you can see from this message about the importance of knowing your HIV status, these young kids are aware of very mature concepts.

The volunteers also maintain a garden that provides food for the house. This is one way to make the house more self-sustaining and less dependent on donor funds. Means to diversify income sources are continually explored to ensure that the houses can continue after grants end. 

Impilo Yonke: Mental Health and HIV/AIDS

Mental health correlates of HIV and AIDS remains a rather unacknowledged and unexplored domain in Sub-Saharan Africa. What we do know from limited research is that people with mental illness are more likely to become infected with HIV as they may be vulnerable to abuse and may engage in risky sexual behavior. Conversely, people living with HIV/AIDS are more likely to develop some form of mental illness. The rates of mental disorder are as much as two to three times higher than the general population. Bottom line: mental health problems are both a precursor to and a consequence of HIV/AIDS. 

The implications for mental health status can be far-reaching and the consequences can significantly impact HIV/AIDS treatment outcomes. For example, a person with poor mental health status is more likely to have poor adherence to medications and antiretrovirals (ARVs). Health services directed towards this vulnerable population is lacking in South Africa, further magnifying the considerable health burdens of this group.

Impilo Yonke, a collaboration between Mpilonhle and Ladysmith Provincial Hospital, is one of the STF projects I've been working on in Ladysmith that aims to provide a coordinated and comprehensive care model by integrating health services for mental health disorders, substance abuse, and HIV/AIDS. The project has 4 components:

1. Promoting and providing HIV counseling and testing (HCT) in persons suffering from a mental health disorder

2. Screening for substance abuse in youth who are being treated for HIV

3. Providing psychosocial support and budgeting skills training to patients who are receiving government disability grants 

4. Training and educating health care workers to tailor care and HCT specifically to patients with mental health disorder  

There are currently no services that specifically address HIV testing in the mentally ill. Substance use run rampant in the community, especially with young people, and patients accessing ARV treatment are not formally screened for drug abuse, thereby jeopardizing their treatment. All patients who have been diagnosed with a serious mental illness or who have a CD4 count <350 are eligible for a governmental disability grant. Often this is the primary source of income for patients and their dependents. Providers have observed that many patients often have difficulty budgeting this money, and they frequently default on their treatment due to not being able to afford food and transport. The government issues disability grants without equipping patients with the necessary knowledge or skill to budget that money. 

My role in this project has really pushed me outside my comfort zone and let me dabble in areas that I previously had limited (really no) experience in. I came on board in the initial stage of the project when it was still trying to set up and gain momentum. I've been working with the Mpilonhle director in managing the project and mentoring her through various processes (e.g. improving communication with all parties involved in project, streamlining implementation procedures, increasing financial transparency of grant money). I had my first exposure to the realm of Monitoring and Evaluation (M&E) and helped the team develop an M&E structure and plan to capture data and outcomes. Putting on a more academic hat, I taught the physicians and nurses about the model for planning and evaluating continuing medical education and helped them develop assessments to capture the impact of the HIV/Mental Health training workshops they were giving. All this said however, I think I've made the greatest impact on the data capturer. I've worked with him very closely and mentored him on things like development of these assessments, analysis of the data, and writing of reports summarizing that data. 

There are many little things that seem quite simple to me and for which I take for granted (e.g. creating agendas to increase efficiency in meetings). But this mentoring and management experience has reminded me that someone at some point had to teach me about these "simple things," and now it's my turn to teach another. 

Solitude in South Africa

re·treat  /riˈtrēt/

Verb     (of an army) Withdraw from enemy forces as a result of their superior power or after a defeat

Noun     An act of moving back or withdrawing

After months of numerous life changes, cross-country/cross-continental moves, and excitement-filled adventures, I needed to step back from the whirlwind. I retreated to Ha phororo, a Sotho name meaning "the place of the waterfall" for the weekend, seeking renewal and refreshment in its waters through reflection and prayer.

This youth retreat community sits near the Magaliesberg mountains, overseeing the Hartbeespoort dam. It is an ecumenical center with a foundation rooted in the Catholic Church. What made this community so unique and beautiful was the obvious influences of various religions, cultures and philosophies. For example, take the Izolwana Garden of Tranquility- a Zen garden, traditionally intended to aid meditation about the true meaning of life.

"In the East, the raking of a sand garden is a way of life. Calming and soothing, a pattern between the rick islands emerges and stress and anxiety flee. So rake a while, and take home a little tranquility from this place."

 The garden set against the Magaliesberg Mountains, which are among the oldest mountains in the world. It's almost 100 times older than Everest.

A wooden chair with carved images of elephants and game animals. Beautiful interwoven elements of African and Japanese culture.

Labyrinths are an ancient form of body prayer and can be found on all continents and in all religions. There are three labyrinths here, a Native American, a cosmic walk, and another similar to the most famous labyrinth set into the stone floors in the nave of Chartres Cathedral in France.

It was my first time meditating in this form, and I found it surprisingly calming. There are three things I'm supposed to keep in mind while walking- release, receive and integrate. I found myself letting go of my preoccupations and really stopped thinking. Meditation has always been a challenge in that respect for me, as I have found it hard to just clear my mind of all thoughts. But the rhythm of walking around in circles and hearing the rocks crunch beneath my feet did the trick. As I continued walking, I tried to be aware of the present moment and enjoy the beauty of my surroundings. 

 I finally reached the center, where I reflected on a text. 

Friday evening began with a Jewish ceremony of prayer and blessing over wine to celebrate the opening of Sabbath. Taking part in Kiddush for the first time was very special and helped me better understand what Jesus was probably doing on a Friday evening. We closed the Sabbath on Saturday evening and proceeded on a light meditation through the darkness to the bush chapel. On Sunday, it was amazing to take part in Taize prayer-African style. Taize is a religious community founded in France during the WWII, borne out of the desire to show that members of various churches, nations, and races can live together harmoniously. Taize has spread all over the world through its meditative music, in which shorts songs of a few verses are repeated again and again in prayer. 

We closed the weekend with a truly awesome Mass, where all God's creatures were welcomed (the dogs were very well behaved), and chants and song were in English, French, Zulu, Sotho, Hebrew, and Latin. It was a beautiful way to end the weekend. Ha phororo is definitely one of my favorite places so far in SA.