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UBUNTU – Human Solidarity

A Personal JourneyDr. Barbara Zeller, August, 2003

In July and August, 2003, I traveled to Durban, South Africa, with the support of Project Samaritan Aids Services, friends, and family, to the epicenter of the AIDS pandemic – to be of use.  I accompanied my husband, Dr. Alan Berkman, and a longtime friend and midwife, Jennifer Dohrn.  All of us embarked, hoping that our experience in caring for people with HIV/AIDS over the years in New York City could be helpful to those taking on the Sisyphian task of developing HIV treatment and prevention programs in Durban.

Many emotional ties drew me to Durban.  For many years, along with millions of people around the world, I was involved in supporting South African’s long struggle against apartheid and for democracy.  Nelson R. Mandela, “Mandiba”, long time political prisoner of the apartheid era and the first President of the new South Africa, celebrated his 85^th  birthday on July 18, 2003, while I was in South Africa.  His words, spoken at the end of his trial in 1964, have been providential, “I have cherished the ideal of a democratic and free society in which all persons can live together in harmony and with equal opportunities.  It is an ideal for which I hope to live for and achieve.  But if need be, it is an ideal for which I am prepared to die.”   The country’s transition to democracy and the process of national reconciliation after civil war embodied in the Truth and Reconciliation Commission have been beacons to the world of a new vision of conflict resolution and human decency.  But the most devastating epidemic that the world has ever known accompanied the birth of this new nation and is threatening its progress along its path to forging a free and just society.

Another emotional tie to Durban was forged when, in 2000, I traveled there to participate in the 13^th International AIDS Conference.  This meeting of 15,000 representatives of the global movement to fights HIV/AIDS was momentous.  Up until then the prevailing opinion amongst all sectors dealing with the global epidemic was that resource poor countries could not possibly use antiretrovirals (ARVs) to treat HIV —  they were too poor, too lacking in healthcare infrastructure, and were comprised of people too ignorant to comprehend medication adherence.  This position was not only discriminatory, but gave the message to the 40 million people already HIV infected that their lives were not worth fighting for; that the only efforts that could be made would be towards preventing new infections.  By the end of this Conference this position was resoundingly defeated.  There was a resounding call for access to HIV treatments as a human right, and the demand for the political will to force a change in global AIDS policy.  Years of advocacy from people living with HIV/AIDS and human rights activists had finally begun to bear fruit.   The heartbreak of that moment was that the President of South Africa, Thabo Mbeki, was refusing to recognize that HIV caused AIDS. “A virus cannot cause a syndrome.  A virus can cause a disease, and AIDS is not a disease, it is a syndrome.”  In the subsequent months the costs of antiretrovirals began to plummet in response to international pressure and the United Nations formed the Global Health Fund to Fight AIDS, TB and Malaria.  Many African leaders welcomed the ability to begin to use antiretrovirals to treat their people.  But the Government of South Africa, to the disbelief and heartbreak of the international community, blocked their use through their public health system and blocked the Global Fund money from reaching South African sites.

It was during that Conference in 2000 that we heard first hand the alarming statistics of the pandemic in Africa and began to see its human face. Since the Conference, the sheer scope of the epidemic and the newly steeled will of the global AIDS movement for treatment access have compelled a global response.  In the United States, governmental and private sectors have begun to provide help.  My husband has been in the forefront of these issues since 1998, and in January, changed his job to concentrate on the global AIDS pandemic through Columbia University’s School of Public Health.  He came to Durban as part of his work. He then was able to facilitate my ability to come along.

Why Durban?  Durban is the coastal hub of Kwazulu-Natal (KZN), the province that was the former seat of the great Zulu Kingdom, a nation that was defeated in the 19^th century by the Afrikaaner and British colonists.  It is a lovely province, comprised of 8.5 million people, about 21 % of the total population of about 35 million.  About 80% are isiZulu-speaking Black Africans.  There is a large Indian population descended from the indentured servants brought by the British in the mid-19^th century.  And the white population comprises the remainder.  KZN is bearing the highest burden of HIV in South Africa which estimates it has 5-6 million people infected.   Therefore, KZN, has a total population about the same of New York City, and has about 700,000 people HIV+.  In comparison, New York City, at the height of the AIDS epidemic had 15,000 cases. The vast majority of those infected are Black Africans.  KZN leaders have also been the most outspoken in challenging the terrible position of the South African Government, which to date has not provided antiretrovirals through the public health system, except for the use of neviripine, to help prevent HIV transmission from mother to child during birth.  Durban has the University of Natal and the Nelson Mandela School of Medicine, both progressive institutions who have produced brilliant leaders in the fields of research and advocacy about HIV.  And Durban has some small clinical projects and non-governmental health care institutions, many faith-based, who have begun just recently to use ARVs.  It, therefore, seemed hopeful that my long experience in the use of ARVs to treat HIV would be arriving at a crucial time.

So I invited myself to two clinics – and with the warmth and welcome of the people at these clinics, I was able to help.

SINIKITHEMBA, “We give HOPE”, was the first site.  This is the HIV/AIDS Care Program of McCord Hospital.  McCord’s is a hospital, founded by a Christian missionary, that has made a commitment to build a comprehensive program for people with HIV.  The program is housed in a lovely building near the hospital that used to be a private home.  This new building was officially dedicated with a ribbon-cutting ceremony on July 31th, which I was fortunate enough to attend.  Besides the medical services provided, they have an energetic support group, a committed team of peer counselors, HIV educational groups and adherence training, and social and psychological services.  They also have formed the Sinikithemba Development Program, which includes a choir, a beading project, a sewing project and a baking project.  The profits are put into a foundation that provides the costs of ARVs for the members.   The choir, which sings in Zulu and is comprised of HIV positive members, has toured the United States two times in 2003 and will be performing in New York on December 1^st for World’s AIDS Day.

For the first two weeks I shadowed Dr. Jane Hampton, who is their full time “anchor” physician.  It was wonderful working as a team seeing each patient.  She, clearly, was relieved to have someone to whom to ask all of her questions about ARV management.  Dr. Hampton is motivated by her devout Christian ethos and belief in service.  During my first day there I was touched by her warmth and concern for each patient, yet I was completely taken aback as each encounter had to be mediated by what each person could afford.  The hospital operates with great subsidies, but they cannot keep afloat without charging minimal fees and charging for the cost of ARVs.  Later, when I was seeing patients on my own, the words would stick in my throat as I spoke to a suffering soul, who would be able to heal with ARVs and had to say, “ There are medications that could help you.  But they are very expensive.  Could you afford 700 Rand (about $100) each month?”  And as I watched their eyes lower from my gaze and their shoulders droop, I would quickly retreat and add, “I see, well let’s talk about what else might help you today.”   

The Sinikithemba Clinic is where I gained my understanding of the human face of the epidemic.  The medical term “high prevalence, generalized pandemic” took on its human face.  Now twenty years after the epidemic was recognized the HIV epidemic is now an AIDS epidemic.  Huge numbers of people are coming for medical care because they are now desperately sick with opportunisitc infections and dying. I also saw firsthand how Tuberculosis and HIV have formed a deadly partnership – the sheer numbers of coinfected patients was astounding.

The people coming to the clinic were 98% Black African, generally the working poor – domestics, service and industrial workers, some teachers, nursing assistants, and students.  Very few had health insurance.  Most paid 110 rand ($15)to walk in the door for the consultation.  Zulu is their first language.  The 110 rand pays for the medical consultation and up to six formulary medicines for each visit.  Blood work, X-rays, procedures, PAP tests,and hospitalizations are all cost extra.

Here is how my first day, July 1^st, went.  Like the blind man comprehending the elephant,  I felt my way along day after day with patients such as these, and by the end of  eight weeks comprehended the shape and enormity and the heartbreak of the epidemic.

Phumbili, a 34 year old mother of a 13 year old daughter and a daughter who died in 1999 of AIDS at the age of 8, came in very short of breath with a temperature of 103.  She was on ARVs.  She was asked if she could afford a chest X-ray for 40 rand.  Yes.  Her X-ray showed severe pneumonia.  She was asked if she could afford hospitalization – 350 rand per night.  No.  She was sent home on oral antibiotics.  She had TB 2 years ago.

Goodness Mkeni, a teacher, 30 years old, came for a follow up visit.  She had been taking Zerit, Videx and Sustiva (the cheapest available regimen at that time at 850 rand (about $100) for several months.  She explained that she had stopped her ARVs on May 31^st because she needed to pay for her grandfather’s funeral.  She had a huge lymph node that was draining pus on the side of her neck – TB.  Just then, the pharmacist came in and said that Combivir and Sustiva was just available for 700 rand (instead of 1400 However, she couldn’t afford a PAP test for 20 rand.  But she would get her TB treatment, Rifafour, for free at the public health clinic.

Princess Xulu, a 51 year old woman arrived with a cough.  Her partner had died last year.  “Do you want to check your CD4 count?  Did you bring your money for the test (100 rand)?”  No.  “Have you got 20 rand for a chest X-ray.”  Yes.

Innocence Mbondi, a 27 year old man came with his mother, a nursing assistant.  He had had TB and cryptococcal meningitis in September, 2002.  The he had a seizure in April.  At this visit he was suffering from a large genital ulcer, most likely herpes or syphilis.  His mother said they couldn’t afford ARVs.  She knew that without them he had little hope.  She paid 20 rand for a syphilis test.  We could give him acyclovir for 5 days and Pfizer was donating fluconazole after the proper forms were filled out – so at least his immediate infections could be treated.  I saw him with his parents on August 1^st – now seeing patients on my own.  He was unable to walk, demented, and dying.  His dignified patents listened as I explained how the Dream Center, the affiliated hospice, might help them now that he needed total care.  They nodded yes, theirs eyes brimming with tears.

Thembo, a 27 year old man, now with his second bout of TB, sick and losing weight, lost his job.  Dr. Hamptom discussed ARVs.  No.  He couldn’t afford them.  Now she discussed “how we all were on earth only for a little time and if he stayed close to Jesus, he would be in His arms for eternity.”

Pretty Parker – 31 years old with a CD4 count of 14 had been on ARVs for two months.  Her husband is positive, and so is one of her two little girls.  They were all there with her in the clinic.  They could afford to treat only one of them, and mom was the one who was the most ill. 

The stories unfolded.  I learned that CD4 counts and viral loads cost 490 rand ($70), but if people were on ARVs, the tests were free from a lab with a research protocol.  I learned that one or two people each day might be able to have ARVs, and one or two people might never had had TB – yet!

Several weeks later, one of the doctors talked to me in a quiet moment, saying that he had a practice in the township ( the informal Black settlement).  50% of his practice was gone over the past three years.  That day, I sunk into despair.  How does a community, a nation, usher in the next generation?  The human act of sex and procreation is bringing death.  The birthing is bringing death. (My friend Jennifer was working at the public hospital in the antenatal clinic where over 50% of the women were testing HIV positive). And the bonding of mother and child through breastfeeding is bringing death.  The parents are dying.  The work force is dying.  And the people are disarmed by government’s denial and disinformation about AIDS.  After defeating apartheid, the great nation of South Africa is not mobilized to fight perhaps their most dangerous enemy ever.

At that point I needed to focus on what was doable – to just take a few steps with all those people I was meeting who were trying to do something rather than nothing.  I needed to find some peace with being a drop in a torrent.

I was comforted by a small accomplishment during my stay.  Marlene, who owned our lovely bed and breakfast, had come one might to tell us of her concerns about her gardener, Zwehihle, whose wife had died last year, and who himself was losing weight and strength.  She was terribly worried about him and thought he most likely was suffering from HIV.  I was able to provide information and support for her.  I could tell her that the cost of the ARVs had gone down to 700 rand and how McCord’s system was organized for HIVcounselling and testing, medical consultation, the amount for CD4 counts and staging of the disease, and so forth.  She told me later that she and her husband had decided to pay for his treatment.  She mustered the courage to ask him if he was worried about HIV.  He said yes immediately.  She was able to help him through each step of the process.  Yes, he was HIV positive.  Yes, his CD4 count was 115.  Yes, he needed treatment. And on August 11, Zwehihle took his first dose of Combivir and Sustiva!  Everyday at Sinikithemba, I saw one or two white African women, with their domestic workers, bringing them for care and ARVs if necessary.  These small acts of decency and compassion are also harbingers of hope.

The other site where I volunteered was “Ikhaya Lempilo” – The Healthy Household.  Located in Cato Manor, the large Durban township and shantytown, this clinic is a site for Columbia University’s School of Public Health’s MTCT+  program (Mother to Child Transmission Plus).  Here the grant provides a treatment model that includes treatment with ARVs.  It hopes to be a model for scale-up of treatment for the future in resource poor settings.  Here, HIV positive mothers from the Cato Manor community are identified in the antenatal clinic where counselling and HIV is provided in order to give mothers neveripine to help prevent mother to infant transmission during birth.  After birthing, the mother and new baby are monitored and given treatment, including ARVs if needed.  Treatment can be extended to other positive children in the family and another adult.  Partners are encouraged to test for HIV.  They had only started enrolling patients since March, 2003.  But 160 patients are so far enrolled.  Only ten or so are on ARV’s to date.  The project operates with a wonderful team – two doctors, one nurse practitioner, another nurse, a social worker and many counselors.  It brims with enthusiasm and hope.  The terrible financial dilemmas of the private non-for profit sector do not exist here.  This project encourages “exclusive” breastfeeding – some scientific data suggests that its necessary for women in this community to breastfeed rather than formula feed because of cultural and economic reasons even though breastfeeding is a known risk for HIV transmission to the baby.  But there is some evidence that if the mother needs to breastfeed, exclusive breastfeeding is safer than intermittent breastfeeding with occasional bottles.  

This project, like Sinikithemba, begins each morning staff meeting  with Christian songs,  “Oh Jesus I surrender, I surrender all.”  And prayers.  The day I arrived, they were discussing their surprise that the team doing home visits to the new moms had found several families with very ill grandmothers.  Upon evaluation, these grandmoms had AIDS.  Another terribly “Sophis’s choice” was presenting itself.  The protocol for the project’s grant allowed for only one other adult to be treated, usually the partner.  But thankfully, these grandmothers could be included because their daughters were not living with their baby’s fathers.

My role at Cato Manor was consulting on ARV treatment issues, training staff, and providing medical coverage when staff went on vacation.

By late July, I had earned my South African name.  I was helping the Treatment Action Campaign (TAC) find doctors for their five members in KZN who had been chosen for ARV treatment.  TAC is an activist organization, with many HIV+ positive members, that since 1998 has been pressuring the government to provide treatment access.  Until this date, the government had not changed its position, and TAC felt they needed to begin to find a way to provide help to some of their own people.  They had raised some money and set up a system to start treating some of their own members with ARVs.  During the first meeting with them, the young organizer Sindi, stumbled over her words as she tried to introduce me and my husband to the group.  She explained that young people could not use the first names of elders.  So after I had heard an elder to my left introduced as MamRita, I suggested I be called, MamZell.  So MamZell it was.  The following week, MamZell was able to provide a training session for these first five people in  basic HIV education and ARV readiness, so that they all could start their treatment.

When I was in Durban, the last week of July, the South African Medical Controls Council, the MCC, comparable to our FDA, queried the safety and efficacy of neverapine for the prevention of mother to child transmission.  It threatened to withdraw its permission for its use unless the manufacturer could provide more proof.  To the horror of the clinical and scientific community and the HIV advocates, this small beacon of hope that had been provided by the government’s public health system (and is used worldwide) could be withdrawn.  Why?  It seemed so irrational and terrifying.

Health Minister, Mantu Tshabalala-Msimany, defended the decision on August 1, appealing to the media to assist with the promotion of health and nutrition and to encourage people to “grow vegetables” to deal with the AIDS epidemic.  She sang the praises of garlic, lemons, olive oil and the African potato as key elements in the fight against HIV/AIDS.

Because of positions like this, last April, the TAC filed charges of manslaughter against Mantu and the President, Thaba Mbeki.  Even Nelson Mandela entered the fray. In February, he said,” This is a war.  It has killed more people than has been the case in all the previous wars and in all the previous natural disasters.  We must not continue to be debating, to be arguing, when people are dying.”

In the first week of August, events unfolded with astonishing speed and Durban was the site of the drama.  The TAC held its national meeting beginning on August 1^st.  Passionately, they called for a resumption of the civil disobedience campaign they had ended last March after they thought they had won concessions from the Government.  Since they ended the civil disobedience and took the Government at its word that they would provide treatment, the Government had done nothing.  In those four months, 90,000 people in South Africa died of AIDS.  600 per day.  Now it is 1000 per day.  100 people from the TAC had died as they were desperately trying to develop their own treatment project and raise money to buy ARVs. 

Then the first South African AIDS Conference convened at the Durban Convention Center on Monday, August 3^rd, bringing together scientists, clinicians, activists and Government officials.  With consummate diplomacy, the Conference organizers kept the pressure exerted on the Government without causing an irreparable rift in the debate.  In a plenary address, the epidemiologist, Quarraisha Abdool Kareem, said that the country was now entering a new phase of the HIV/AIDS epidemic – where mortality is starting to exceed the incidence of new infection. She also said that among those aged 25-29 in South Africa, the prevalence of HIV is now 51%.

Remarkably on Thursday, August 7^th, the Government put an end to its eighteen-month delay by signing an agreement with the Global Fund to Fight AIDS, TB and Malaria, giving South Africa access to $41 million dollars for the fight against the pandemic. 

On Friday, a special session of the Cabinet said it asked the Health Department to prepare a plan for the provision of AIDS drugs by next month!

Clearly, there is no time to waste.  This represents a new phase for the people of South Africa.  There is a glimmer of hope.  There is some easing of despair.

In my last days before departure, I traveled to the South Coast Hospice and accompanied two community women into the rural homes as they made their homecare rounds.  Here, the suffering was terrible.  Here, a 5 year old boy just recovering from AIDS related diarrhea and dehydration tells the worker about his “memory box” – the small box containing small items and pictures that his mother left him to remember her by before she died a few months back.  His granny looked on.  This is a disease of predominantly women now.  That means it is a disease of mothers and children, more even than the men.  The workers lead me to the next small mud house, with a sick baby with AIDS drinking black tea in utter squalor.  For them, the new possibility of going into the community with treatment rather than only comfort was truly a miracle.  And the resolve of the people we met who have accepted the challenge of defeated this scourge will defy all odds.

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