Township Travels: Policy Driven By Experience

Jon Rosenthal, Connor Brooks, Rayn Riel Thinking Beyond Borders: South Africa Media Project

Grant Abuse
Grant abuse is running rampant in the townships. How can it be stopped? Page 2

Positive Living
A great role model: an HIV positive woman who nevertheless is strong, healthy, and employed. Page 3

Fear and Fatalism

Fear and fatalism is problematic in the townships. How do we address this problem? Page 6

Of the 33.3 million people living with HIV/AIDS in the world, 22.5 million live in sub-Saharan Africa, and the country with the largest population of people living with HIV/AIDS 5.6 million is South Africa1. Approximately one out of five people between the ages of 14-49 has the disease. In regard to access to infrastructure such as water, electricity, and healthcare, South Africa is the most developed country in Africa, yet it still battles a public health crisis of epic proportions. This crisis was exacerbated by the post-colonial governments Apartheid system that promoted inequality, and following that, the Mbeki government that neglected the severity of HIV/AIDS. Over the course of the last month we have been working on a volunteer project with the PlettAid Foundation. This non-profit organization is set up to provide free health services to the people of the Bitou municipality. Non-governmental but in line with government plans, the foundation works to fill in gaps that the government cannot take care of such as supplying health care workers for the public health care system, offering HIV counseling and testing services, supporting people trying to get a disability grant, and running a 24-hour nursing unit and womens shelter. PlettAid hires and trains caregivers who are then sent out into the communities to provide door-to-door health care for patients. Their job mainly consists of taking care of chronic illnesses, wounds, stroke rehab, HIV/AIDS, and tuberculosis (TB). Our task was to go with the caregivers on their normal rounds and keep track of the living conditions in the patients homes and the amount of time spent with each patient. Over the course of our work we were exposed to many of the social problems that plague the townships of South Africa. The aim of this article is to tell a few of our stories from our time in the townships2 in order to illustrate some of the issues that we encountered. We follow each story with a brief discussion of the underlying issues and how policy could address them. Through our work with PlettAid, we have gained a greater awareness of how to proactively affect change in public health!3
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Grant Abuse in New Horizons

In New Horizons, there is a woman I met who is over eighty years old and lives in a small one-room house with a couple of relatives. The woman is blind and senile, and every time I visited her she would fight the caregiver during blood pressure and sugar level checks. The old woman had little idea of what was occurring around her and clearly was not getting the necessary care that she needed. Her doctor and many other people tried to place her in an old age home, but her son, who lives across the street, stopped them. He claimed
Continued on next page

UNAIDS 2009, www.avert.org 2-A township is a community on the outskirts of the cities of South Africa. They were originally created during the Apartheid government to house non-whites. The quality of living is often quite poor. 3- To protect privacy, some of the names in our project were changed.

Grant Abuse cont

that he did not want his mother to go, but the truth is that if she left, he would lose the weekly grant check given to him by the government to take care of his mother. Currently, very little of what he is given goes to his mother. The vast majority of the check is spent on alcohol. Technically, all of this is against the rules of the grant system, but there are simply not enough social workers to check on all the cases. As a result, there is grant abuse within the communities. There are some HIV patients who will stop taking their antiretroviral drugs (ARVs) in order to remain sick and qualify for a disability grant. In many cases it seems as though the disability grant is encouraging people to stay sick. This problem has run rampant and an overhaul of the grant system is necessary to put an end to the abuse. I believe that a system that utilizes disability grants is very beneficial when it comes to aiding the sick, but the South African system must adapt to fight abuse of such a system. At the minimum the government needs to add more social workers to monitor use of the grant money and create accountability. More social workers will be a new source of jobs in a region where unemployment is widespread. It may cost the government money, but the social workers will also save the government money by exposing disability grant scams. Drug and alcohol abuse could also diminish because the money from grant scams is usually spent those vices. However, the government should go further and reform the system. One idea of grant reform could be to incentivize getting healthy. Instead of stopping payments when a person gets healthy enough to work, the government could give a small monthly stipend to people who follow through on their treatments even after they no longer qualify as disabled. The amount of cash given would have to be small, but the benefits could be huge. This system is a double bonus, people become healthy and they make a little money in the process. I do not think that the disability grant should be removed, but the government should also look to create incentives to get healthy. These are just a few ideas about how to address grant abuse, but the core point remains that the system must change in order to cut down on the misuse that has arisen!

Local Health Care Clinics and Home-Based Care

Sitting in the Kranshoek clinic between 8 and 8:15am, one cant miss Steves smile and warm greeting of Morda, Morda (literally morning in Afrikaans). His trademarked sign of thumbs up brightens the day. Steve has a bad case of asthma and is categorized as a DOT (directly observed treatment) patient. Steve cannot read and thus cannot organize his pills without caregiver assistance. But through the simple service of local health care clinics, smiling Steve can easily manage his chronic illness. It is a pretty simple adjustment for a very gracious patient! Beyond access to medication itself, access to treatment facilities is a vital piece of public health infrastructure. Thanks to generous outside funding, clinics are available in Kranshoek and the other townships in the Bitou municipality. Home-based caregivers can make house visits for those unable to leave their home or, in Steves case, address a patients needs in the clinics themselves. Policy should continue to support current practices of local clinics and caregivers. However, I believe that funding should be allocated so that clinics and caregivers can hold even more responsibility. These home-based caregivers should collect data in order to quantify where different approaches may be needed. The following questions must be addressed: Are medications working? Are Continued on next page

Care cont
medications accessible? Do patients understand the nature of their diseases? Have patients addressed vulnerabilities in their lifestyles? Home-based caregivers should both assist those in need and create accountability! replied, Yes he is my white boyfriend, who spends his money on his family. They laughed and walked away. I do not think they took her hint about helping their families to heart. And although there are exceptions, the reality here is that many men do not support their families. In many communities in South Africa, women are defined by how many kids they have and how well they spread their husbands name. It is also generally accepted that men will have multiple sexual relationships at the same time, and that they will have more power than women in a relationship. These issues exacerbate the HIV/AIDS epidemic; for example, if womens opinions dont matter and men want to have many children, why would they use condoms? The solution lies with empowering women. I do not think that there should be laws to tell men what to do with their paychecks; people should be responsible and make their own decisions as to how to allocate their earnings. Because oftentimes women need to pay for themselves and their families on their own, extra support should be given to them. For example, offering jobs specifically for women, providing microfinance loans and grants to women, and developing microbicides that can be used by women during intercourse are some potential solutions. Making sure laws are enforced and women are not abused is also paramount. In the end, the goal must be for women to have the opportunities they need to live prosperous lives and be able to support their families!

Living a Positive and Proactive Life

Tandi has been HIV positive for around six years. She is not ashamed to tell me; in fact, she told me on the first day I met her. She has not started taking ARVs yet because her immune system is still fine. She has been working in the Bitou region for seven strong and healthy years, and came from the Eastern Cape where resources are limited and jobs are even scarcer. She supports four children (one of whom is from a welfare center) as well as her mother and five sisters, all on one small paycheck. But where is Tandis husband? He is in Johannesburg, working, and not bringing any of the money home. Hes probably sleeping with his other girlfriends, so it is no wonder that Tandi almost certainly got HIV from him. Even when his job gives him money specifically for his children, she is sure he secretly uses it on himself. Tandi is tired of her husband and plans to go to court to file for a divorce. She even got sterilized so as not to have any more kids (knowing that more kids means more expenses and less opportunity for each) and made sure that her kids did not get HIV from her. In the end, Tandi is living a positive lifestyle with a positive status. It is hard for her to get by, because she is essentially putting all of her family through school without any help from her husband, but she is managing. When I was walking with her one day, a group of men asked if I was her boyfriend. She

Bringing ARV Access To All

One day I had the opportunity to sit in with a doctor at the HAART Clinic and observe some of her consults. All of the patients that came in had HIV, but there were there to deal with some other sickness, such as TB. The patient that stood out to me the most was a tenyear-old girl who had come in complaining of headaches. All of this seemed like a routine problem except for the part where she was HIV positive. Luckily, she was doing well on her ARV treatment and her viral load was undetectable. However, the fact remains that she has HIV, something she will have to deal with for the rest of her life, and it is likely not even her fault that she has the disease. It is not fair that this great burden has been placed on her shoulders so soon in her life, but there is hope. She and a million other patients across South Africa all have access to the ARVs necessary to fight the disease. Her life can be extended by decades because she has access to this treatment. In my mind, access to ARVs is one of the most important weapons in the fight against HIV/AIDS. The virus leads to drastic economic and social impacts due to the loss in human capital, but these drugs can prevent people from dying decades before their time. ARV treatment helps avoid situations where entire villages are void of adults in their prime who work and raise the children. These drugs can do a world of good, but they must first reach the people who need them. South Africa has done excellent work when it comes to providing cheap, generic ARVs, but more can always be done. At times, there are shortages of the drugs across the country, which can lead to a rapid decline in health and even the emergence of new HIV strains that are resistant to the ARVs. The government must work toward lowering the price of the medications even further, as well as stabilizing the supply to prevent shortages. The government should be able to provide free treatment to every person who is infected throughout the nation. Never again should kids be dying young from AIDS, because the treatment for the disease exists and is accessible. Of the over five million South Africans who suffers from the disease every one of them should have access to the treatments that they both need and deserve!

The condition where a person returns to life from the brink of death. This is often brought on by the use of ARVs by HIV/AIDS patients

Lazarus Effect

Sex Education: The main weapon used to prevent the spread of HIV/AIDS
Who knew female condoms were so exciting? Justice enthusiastically brings sex education to Kranshoek. Justices pedagogy fosters a deep understanding of the nature of HIV/AIDS, methods of transmission possibilities, and preventative measures. Justices charm and confidence inspires a relaxed, engaged audience. One lady in the back quietly inquires, How do I put on a female condom? Justice couldnt be more excited to demonstrate. Well, you grabs the ends here like this, make a figure eight, put it in, and now its time for the match! He proudly takes the audience on a step-by-step process. Naturally, Justice even has a wooden replica of thewell male organ to simulate the female condom in action! Justice then makes sure everyone in the room promises to use protection, whether it is a male or a female condom. Only one objected but I think shes safeshe is 75. A sex education system must inspire society to live safely and responsibly. Like Justice, teachers need to create a positive environment that both comforts and Continued on next page

Sex Ed. Cont.

empowers their listeners. Justice solely teaches in the Thats it clinics. While he says that there are numerous education programs both for adolescents and adults, I still have two lingering questions: Are all of these classes are as informative and beneficial as Justices? If information is out there, why dont people change behavior? A variety of different institutions, such as schools, community programs, and churches, must collaborate with teachers like Justice to tackle these questions and provide farreaching, proactive education. A very successful pedagogy is the Uganda method of ABC: Abstain, Be Faithful, use a Condom. Abstinence is 100% effective, but not entirely realistic in a South African culture that celebrates sexual activity and having children. Should people choose to have sex, limiting ones partners and using a condom are the next best options. While education alone will not prevent the spread of HIV/AIDS, it can certainly act as a catalyst for reform!

Education Going Beyond Sex Ed

One day on our rounds, we entered the house of a 28-year-old man with HIV. The week before he had been very sick due to the disease, and had recently been put on ARVs. He was still very weak, and in the process of learning how to adjust to a new lifestyle that centers around taking his medicine. He was filled with questions about how to deal with the lifestyle change and we spoke with him and his family for over an hour. The caregivers had to explain almost all aspects of the disease to them including condom use, how to take the ARVs, whether or not to tell the girl he liked, and the necessity of good nutrition. It was startling how little he, his sister, or his parents knew about the disease. The young mans parents did not understand that HIV/AIDS is a recent pandemic or why their parents were able to live similar lifestyles but remain HIV/AIDS free. This information session showed me a lot about the low level of HIV/AIDS knowledge among the general public. Much of the HIV/AIDS stigma stems from a lack of education because people fear what they do not understand, and in this case it is the virus. Some try to explain it through traditional answers such as witchcraft and black magic. These methods of explanation lead enhanced stigma and false ideas about protection from HIV/AIDS. The best way to combat this lack of knowledge is through education. While there are many programs out there

to promote safe sex and other methods of prevention, there are not enough programs that teach about the disease and how it works. It seems as though few people who are not already diagnosed with HIV know what a CD41 count is or how the disease virus attacks the body. I believe a possible way of attacking the stigma would be to educate as many people in the community as possible, not just the HIV positive patients, about the intricacies of the disease. HIV is often seen as a death sentence, but with the right treatment it is not. The most important aspect to stress is that under the proper treatment, it becomes only a chronic condition. People need to spread the word that it is very possible to lead a long, happy life even if you are HIV positive. When it comes to HIV/AIDS people are often told what to do without much explanation of why to do it. Beginning to explain the science behind the disease will help people to understand the reasons why they should wear a condom or take their ARVs on time. This can lead to openness in regards to the disease, which will help battle the stigma that plagues the world today!

Alcohol and Drug Abuse

An elderly woman living in the New Horizons township has TB, HIV, diabetes, and high blood pressure, and she receives both free treatment and disability grants because of her illnesses. We (the home-based caregiver I worked with and myself) visited and assisted her until PlettAid assigned us elsewhere. While things appeared to be improving for our patient, I found out that unfortunately they were not. Her children, along with their friends, steal her grant money, food, and medicine. Sometimes they even beat her. Crying, she laments to us that they steal from her just to buy drugs and alcohol. To Continued on next page

1-CD4 cells are part of the human bodys immune system, and are attacked by HIV. When a persons CD4 count falls below 200, they are diagnosed with AIDS

Alc. abuse cont...

make matters worse, she has tried to involve the police, but to no avail. The justice system is often convoluted and time-consuming, and even if the kids are arrested, they will eventually be free and will simply beat her again. Although the justice system should become more efficient, the source of the problem should be tackled, not how to deal with the result of the problem. Drinking is part of culture in South Africa, so telling people not to drink is not the solution. Indeed, I think that the solutions lie with raising awareness both at school and at home about how to consume alcohol responsibly, and about the different effects of drugs. The message can be spread through parents (as long as they are not part of the problem), caregivers, social workers, and the media. From what I observed in New Horizons, I feel as though children need incentives besides receiving an education in order to attend school. For example, schools could give out stipends to students (and their parents) who not only attend school, but also get good marks. By incentivizing education in order to get people off the streets, our patients children would more likely be in school, with opportunities available to them for their future. Also, even though free public education is available, there is a catch; oftentimes school uniforms and school materials are needed, and those are not free. The government should provide free uniforms and materials to students who qualify and cannot afford them otherwise. The government also needs to focus on job creation so that when people get out of school and are qualified for a career, there are options available for them! reeking of body odor, lying listlessly on her bed as her daughter looked on in despair. The patient had refused to get tested for tuberculosis (TB) and HIV, even though everything at the clinic is free: prevention (if she was negative), testing, and treatment (if she was positive). Indeed, she was held back by the omnipresent HIV/AIDS stigma, which is so powerful because HIV is transmitted sexually (and making sex life public is taboo). After much deliberation with my caregiver, and while I was playing with her daughter, she finally became convinced that she had to seek testing and treatment. She told us that her daughters sorrow was the true turning point. After all, her daughter is young and needs a strong, healthy mother. The test results revealed that she was incredibly weakened due to the complications from both HIV/AIDS and TB, with a CD4 count of 27. But with continued, daily support we watched her as she took her medication, and helped her begin the process of recovery. She is now getting counseling at the HAART clinic to teach her how to adhere to the ARVs, and to make sure that her family knows her status and is prepared to help her. In the end, her stigma has been tackled, and she is now in the process of getting better. I can only hope that her family helps her in this process (her father is helping her, but her mother is an alcoholic) and that she is able to recover her health and live a prosperous life. Although home-based caregivers are an essential resource in tackling stigma and treating patients, they are not always available. As such, I think that there needs to be other approaches; for example, a cash incentive to get healthy and remain healthy. When the stigma is so strong, ones own health may not be enough of an incentive; many would rather die than come out. There should be a small stipend that is given to people who test HIV negative at regular intervals, and a stipend to people who adhere to their medicine and get better. Besides combating the perverse incentive to remain sick for Continued on next page

Fear and Fatalism in the Townships

Imagine if your life was agonizing, painful, and worse of all, helpless. Imagine if your only hope for prolonged survival was to face an insurmountable fear of surgery. At that point, would living even be worth it? This is the sad reality that Bertha faced before she passed away. Berthas breast cancer caused a series of severely infected lacerations on her left breast. Thanks to government-funded resources, the surgical procedures necessary for treatment would have been free to Bertha. Regardless, her fear of surgery surpassed her fear of death. But her decision to forgo potentially life-saving surgery stemmed from something deeper than fear: it stemmed from a sense of fatalism. She felt that her fate was up to God and that it would not matter if she died tomorrow or died in a few years. Why prolong life when a frightening surgery and its difficult recovery would just increase misery? Sadly, she also felt like she created a burden for her family and the home-based care network. She felt she did everything she possibly could and that at the end, enough was enough. Both fear and fatalism are prevalent in Kranshoek. When lifes Continued on next page

HIV/AIDS and TB Treatment

We walked through the door and I was hit with a sight and smell that I will never forget: a 29-year-old woman, all skin and bones, and

Treatment cont
grant money, this will give more people a reason to test, and could even tackle the stigma problem at the same time by raising public awareness. Drug and alcohol use interferes with successful treatment, and a cash incentive could also help address this problem. And healthy people would want to stay healthy, so theyd have an extra incentive to use a condom. When more people are healthy, they can work, which stimulates the economy and helps their family out of poverty!

Fear and Fatalism cont

beauty and value are difficult to see, people fail to grasp the value of life saving services. Policy therefore needs to address the townships gloom. To start, many are unemployed and have no way of generating a steady source of income. Besides a few shops and convenience stores, there are no local jobs. Policy should thus focus on transformative economic development. Government subsidies and/or microfinance institutions should incentivize people to start up their own businesses. Perhaps even schools and local businesses could organize a work-study program to give kids experience in the local work force. If people had a steady source of income and jobs were created, fatalismin addition to crime, fear, and alcoholismwould subside. To complement economic reform, NGOs and community activists must create a local political climate that both engages discussion and fosters compromise. Currently, Kranshoeks political complacency leads to representative neglect. There needs to be a shared responsibility between constituents and representatives. Constituents must reach out to their representatives and representatives must inform their constituents. Fear and fatalism are simply unacceptable in a country that prides itself on democracy and equality!

Conclusion: What We Learned

Our initial assumptions that public health and HIV/AIDS can be addressed through increased access to medicines and condoms have dramatically shifted. Each township has access to clinics, home-based care, medical services, and growing sex education programs. So why do poor public health and numerous cases of HIV/AIDS continue to plague the townships? Physical infrastructure alone cannot fix issues such as alcoholism, drug abuse, a lack of education and awareness, gender inequality, violence, grant abuse, fear, a fatalistic attitude, destructive cultural beliefs and practices, and, perhaps the facilitator of all of these negatives, poverty. We believe extensive and consistent policy can address these complexities. Successful policy requires collaboration and a shared burden for both responsibility and accountability. Donor nations, multilateral institutions, and international NGOs have a moral responsibility to provide proactive public health infrastructure in the form of accessible medicine, clinics, and medical services. On the receiving end, South African governments, NGOs and citizens must take responsibility and establish accountability to utilize funds within productive, localized systems. Human and financial capital must be invested in helpful, incentivizing, and non-patronizing solutions. Data plays a huge role in accountability and highlights specific needs. Once needs are identified, policy makers need to effectively create incentives for proactive behavior. People must have reasons to change their behaviors, otherwise they will continue living within a dismal status quo. It is our hope that policy makers both abroad and in South Africa will adopt some of our proposals for proactive policy. The international community is financially committed and South Africa should no longer tolerate needless suffering!

We would like to give a special thanks to the people who helped us on the project, especially our caregivers and Jessie Elisberg. Contact Us- feel free to email any of us with comments or questions Connor- cbrooks34@gmail.com, Jon- 05rosie@gmail.com, Rayn- raynriel@msn.com