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28: Stories of AIDS in Africa

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There are many tragic narrative accounts of AIDS, but Stephanie Nolen's book "28: Stories of AIDS in Africa" is particularly shocking. The reader is forced to confront the real-life human consequences of: the arms trade to Africa; the patriarchal family hierarchies which deny women access to basic health care, birth control, and autonomy over their own sexuality; the unimaginable health care resource gap between the Western world and Africa; and most disturbing, the conservative fundamentalist ideology of U.S. foreign policy and faith-based charities, which prevents dissemination of live-saving accurate medical information and condoms.

Nolen is effective at piercing the veil which readers inherently draw to insulate themselves from African AIDS carriers. You will meet HIV-positive mothers, grandmothers, and working parents trying to raise kids. You will meet bright, college-educated Africans who were living parallel lives and following career paths not unlike your own, until they were struck by AIDS. Some are church-going Christians, community leaders, or members of the educated elite. Readers interested in playing the 'blame game' will be hard pressed to find promiscuity or other so-called failings among most of the people depicted in the stories. Most of the victims practiced monogamy. You begin to appreciate the fact that we are HIV-negative not because we are morally or intellectually superior, but through the circumstances of fate and luck of being born in the West, which have granted us the 'privilege' of autonomy over our bodies, our sexual and reproductive health, and access to medical care and knowledge.

In many ways, this book is not necessarily about AIDS, but rather about the underlying factors in Africa which facilitate its transmission and prevent its medical treatment: rape, genocide, civil war, drug patent laws, misogyny, and racism. No one can be blamed for the emergence of the HIV virus, any more than one can place blame for the emergence of killer strains of the flu. Nolen's book is a wake-up call for the role that our political, business, and church leaders have played in exacerbating the AIDS pandemic in Africa. Through our activism and lobbying, we can reduce the transmission of AIDS in Africa, and alleviate human suffering

The introductory maps seize your attention. "Adult prevalence of HIV /AIDS" on one page and the people represented in the "stories" on the opposite. There's a swath of dark shading across southwest Africa - that's "Over 20%". To the east, the shade is lighter - "15 - 20%", with two darker smudges labelled "Swaziland" and "Lesotho" - islands of tragedy. At the top, "5 - 15%" predominates, lower numbers hiding the intensity of conditions. Stephanie Nolen's subjects' names run across the other map - the individuals whose stories are related here.

The numbers often lead to "AIDS fatigue" - too many big numbers; surpassing our ability to grasp them. The millions of people infected with HIV/AIDS seem beyond comprehension. After consulting the various estimates, Nolen surmises about 28 million for Africa, approaching the entire population of Canada. Each day, something like 5500 will die of the effects of the infection - two-thirds the population of my community. Every day. All year long. The adage runs: "One death is a tragedy, one million deaths is a statistic." Yet, that "million" represents that many "ones", and each one has a story. Nolen gives us those stories, making one person represent a million others. It's a formidable burden for the afflicted and the writer alike, but Nolen's skill effectively allows the reader to take it all in measured doses.

The opening story is, appropriately, a woman. In Swaziland, women don't turn to activism. They were traditionally forbidden to wear pants until 2003 and the right to own property was only granted in 2006. The little nation has the last monarch in Africa - who has thirteen wives and a fleet of autos. Siphiwe Hlophe had borne children with a man who delayed marriage for years. The discovery that she carried the virus was devastating - it suggested she was immoral, when it was her husband who had been philandering. That situation is one of the AIDS' story social disasters. The infection carries the stigma of immorality, a view widespread throughout Africa - and the West. Traditional leaders, missionaries and even family members vilified the victims as "immoral". It was also deemed an affliction of the poor, a mistake leading to many stressful family situations. Siphiwe, transcended many of these issues by announcing her infection and launching an AIDS awareness programme. Nolen gives accounts of other activitists, including a "Miss HIV Stigma-Free".

The other group most affected by the virus is children - either by being orphaned or by infection at birth. Among the former is 14-year-old Tigist Haile Michael of Addis Ababa who is the sole support for a younger brother half her age. Regine Mamba isn't an orphan. At her age, the term is meaningless. But Regine knows about orphans. When Nolen first interviewed her, Regine had 13 of them - all their parents were AIDS victims - by the book's Epilogue, the number had risen to 18. These parentless children lack education, opportunity and exist on a bare subsistence level lacking any skills to provide for themselves or siblings. Across Africa the number of such children is estimated to have reached 14 million today. What is their future? One path, of course, is always open - at least to the girls.

Is it entirely disaster and is amelioration impossible? There are signs of hope for researchers, but one of those will likely raise a few eyebrows. Agnes Munyiva has three children who live across town from where she works. Seeing up to a dozen clients per day, her job makes her a high risk for HIV infection, but that's not the part she keeps from her children. She's a sex worker in a Nairobi suburb, and she's very special. Agnes is HIV immune, a physiological trait that has many, especially AIDS researchers, scratching their heads, but see her condition as a means leading to prevention. The number of immune sex workers is small, and conditions providing immunity vary. Can enough be studied carefully to derive some answers? Does Alice truly fit the "one in a million" status? In what may seem a departure from the theme, Nolen relates the sad story of Western pharmaceutical firms keeping the price of Anti-Retroviral Drugs [ARVs] out of reach of those needing them. Compounding this tragedy of corporate greed is the role of Western financial institutions such as the World Bank and International Monetary Fund to cripple the social services. Through Strategic Adjustment Plans [SAPs - one of the few truly indicative acronyms], Western investors demanded "downsizing" of government employees - read "teachers" and "nurses" - to pay off international debts, thousands were deprived of jobs. Lacking land and the skills to work it, those unemployed quickly became destitute. Add those to the young orphan girls and Alice readily becomes "one in a million". One of those will assuredly displace her from her hard mattress and mud-walled hut.

If the foundation of Alice's immunity, shared with a small number of Africa's prostitutes, can be unravelled, the chance of a vaccine increases. That's the quest of Uganda's Pontiano Kaleebu, who's been seeking that preventive step for years. Nolen's chapter on Pontiano is one of the most compelling of the collection. In it, Nolen explains how HIV/AIDS operates in the body, and why both prevention and cure are so difficult to achieve. While the vaccine remains elusive, the "cure" has made hesitant progress. But the drugs work only for a time, then a new form and schedule is required. That means testing, analysis, prescription, scheduling and instruction by health-care workers - many of whom were laid off. The drugs have to be available where and when needed at a price that people can afford. Not easily achieved in Sub-Saharan Africa.

As a Canadian in Africa, reporter for the Toronto Globe & Mail, Nolen is aware of how that nation prides itself on helping those in need. Accordingly, she offers a list of organizations providing that support for the suffering. Those 28 million are still living - minus today's 5500 - and their lives can be extended by ARV compounds. Nolen explains how you can help and what your help can achieve. [stephen a. haines - Ottawa, Canada

Stephen Lewis, the former UN Special Envoy for AIDS in Africa, called Stephanie Nole's 28 Stories of AIDS in Africa, "the best book ever written about AIDS". I must admit that I was skeptical- how could a relatively short book of stories encapsulate this massive epidemic? By the time I'd finished the third of 28 stories, I'd changed my mind.

Nolen successfully uses 28 human experiences of HIV/AIDS, gathered over years of reporting on the issue, to tackle each aspect of the pandemic: orphans, access to treatment, medical research, AIDS in conflict zones and within the military, at-risk groups such as truck drivers and sex workers, African political and international humanitarian approaches to HIV, experiences of children, women, elites, couples, families, activists, and the poorest of the poor. Her approach left me more knowledgable, and intermittently heartbroken and ready for action. The book critically examines the role of each actor in the pandemic, from international to local in the present and since the first recorded infection. It emphasizes the complexity of the crisis, most importantly its intrinsic links to poverty, as well as including a vital section on how you can help.

Effectively, Nolen has written a book that provides an overview of the political, historical, cultural, and economic realities of HIV/AIDS in Africa while constantly drawing the reader back to one fundemental point: HIV/AIDS is first and foremost a human issue. She quotes Nelson Mandela (he is the main character in the 27th story), "Overcoming poverty is not a gesture of charity; it is an act of justice" (353).

As someone recently embedded in the fight against HIV/AIDS (I am currently writing my undergraduate thesis on prevention programs, and have just returned from 10 months working with two grassroots HIV/AIDS organizations in Ethiopia), I would recommend this to laypeople and experts alike!

Graça Machel, wife of former South African President Nelson Mandela and, with him, long time activist in the fight against HIV/AIDS, said: "... we can't fill all the spaces that are left." Five and a half thousand people die in Africa every day of AIDS and related diseases, with an estimated 28 million people infected by the HIV virus. These figures are too overwhelming to comprehend and Stephanie Nolen's book opens an evocative window for us into the struggle, the suffering and the hope of ordinary Africans through 28 portraits. From her diverse and multi-year experience and research into the pandemic in a number of sub-Saharan Africa countries, she focuses on the individuals, their families and their circumstances, resulting in an intimate, sometimes heart wrenching, sometimes uplifting, yet always deeply moving and inspiring account of what HIV/AIDS has done and continues to do to Africans: to individuals, relations, communities and countries.

Each chapter starts with a photograph of the primary individual as she or he reveals the tragedy of their lives. Some of them Nolen met only a couple of times, others have become close friends. Her ability to convey their stories vividly and with great empathy brings us as reader not only close to the unique aspects of each "case", but assists our better appreciation of cultural and political traditions and realities in African societies. The critical components of the HIV/AIDS crisis unique to African countries are addressed within the narrative without losing the personal and emotional primacy of the subject matter.

For close to ten years, Nolen, a Canadian journalist for the Globe & Mail, based in South Africa, has been following the HIV/AIDS crisis all over the continent. She has visited families, health clinics, scientists, care centres for AIDS orphans, and activists' organizations. She has walked with health care providers among remote rural communities lacking any medicines, yet trying their best to comfort and help the sick. Stigmas still attached to the infection have meant that misconceptions flourish: those identified with it have been shunned, thrown out of their family's house and left to die. For a long time, testing positive for the virus was perceived by people as an automatic death sentence, resulting too often in changing behaviour patterns. Without any concrete knowledge of this "disease of many names" it robbed families of one young woman or man after another and villages in despair with the ever increasing number of orphans left behind.

Contrary to the long-held prevalent view in Africa as elsewhere - that HIV/AIDS is a disease of minorities and of the poor - Nolen demonstrates the fallacy of this perception that has cost many their lives needlessly. Poverty remains an important factor where nutrition is inadequate, education non-existent, and money for treatment and care is not available. Nolen discusses how traditional societal norms of behaviour still contribute to the persistence of high infection rates, in particular among women. Abstinence, promoted by international, in particular US, aid agencies as a primary method to reduce infections, is only rarely an acceptable option, Nolen contends. Anita in Mozambique stands for many: "None of it" she said, "was up to me". On the other side, there are young professionals, like Lydia in Uganda or Ibrahim in Nigeria, fully aware of their condition, that are still caring for others, lobbying and fighting for access to life prolonging ARVs (antiretroviral medication). What shines through all the stories, is determination and hope despite the odds, the courage, resolve and perseverance that the individuals show in the face of unimaginable obstacles.

A substantial number of books are available on HIV/AIDS and its devastating impact on African societies and demonstrating the need for cheap medicines and vaccines. The human costs in countries where the HIV infection rate may be as high as 30 or more percent is unimaginable in its devastation for generations to come. As Machel put it: "I don't think I comprehend the dimensions of the havoc, disruption, discontinuity". Nolen's book stands out for her insightful descriptions of the human costs as well as the its fluid integration into the stories of aspects of socio-economic conditions and up-to-date science research surrounding the pandemic. Yet, she never loses the focus on the human beings who she got to know and who candidly shared with her their life's story. If you think you can only cope with one book on this subject, read this one. [Friederike Knabe]

In her book, 28 Stories of AIDS in Africa, Stephanie Nolen tells stories that stop you from totally giving up on humanity - from the tireless doctors who treat Aids patients to the campaigners who refuse to buy their own medication until it is freely available to all. In Bukavu, South Kivu, in the Democratic Republic of Congo, Christine Amisi, for example, left the safety of a UN compound to continue her work as a nurse for Doctors without Borders to ensure that her patients got supplies of drugs. Christine assisted in Doctors without Borders' anti-retroviral trials in the Democratic Republic of Congo, a country torn apart by civil war.

Nolen points out that there is a very real risk of creating drug-resistant strains of HIV should patients not exercise compliance in treatment; this is one of the challenges often cited in treating AIDS in unstable countries like the Congo. And yet, what did Doctors without Borders find? Patients had, in the long term, a 97 per cent adherence rate--taking their pills correctly and on time -- which is higher than the rate at most treatment sites in North America. Only 5 per cent of them had been "lost to follow-up," that is, stopped showing up and became untraceable -- again, a number about on par with North America, and remarkable for war zone.

In Bukavu Doctors without Borders provides comprehensive HIV/AIDS care with counselling, testing and treatment of opportunistic infections, as well as antiretroviral treatment (ART). Doctors without Borders has worked in the Democratic Republic of Congo since 1981. They began providing free treatment with antiretroviral drugs (ARVs) to HIV/AIDS patients in Bukavu in October 2003. In the war-afflicted east of the Democratic Republic of Congo, where people are more used to friends and relatives dying of HIV/AIDS than living with it and local health structures have no capacity to provide ARVs, this initiative marked an important step in the fight against HIV/AIDS.

Dr James Orbinski, who was president of Doctors without Borders when the organisation was awarded the Nobel Peace Prize in 1999, says of Nolen's book: "Read. Weep. Rage. And above all else - like those people described in this book - find the courage to do."

I bought this book after hearing an interview with the author on NPR. Then it rested on a pile of books to read for over a year. It didn't seem like the type of book you want to take to the beach or vacation. Or a book to read and put yourself to sleep at night. Then I started to read it one day after hearing of relief work in Africa from a friend. I read several of the profiles/stories. I kept thinking, ok, she has put the most dramatic ones in the front of the book. They can't be that much different after a few. And I was proven wrong. Every story was unique. They are unique from so many different perspectives. Yet they all have the common theme and sensitivity brought to the reader by a very skilled and aware reporter. Nolen doesn't just drop in on someone and do a quick interview. She wraps many dimensions around each story--human, family, love, economic, political, education and so much more. I encourage interested readers to look at the other reviews. Then buy the book. But don't wait to read it.

It sounds weird to say it, but I couldn't put this book down. All the stories are so compelling and so well-written. Nolen doesn't tell one story over and over, but tells many stories using very diverse people. Her courage is obvious: she hung out with a long-haul trucker, a sex worker, and people with AIDS who had only days left to live. I was especially intrigued by the stories of the infected ones who became powerful advocates. What this book left me with wasn't the sense that "these people are pathetic victims we richer folk need to help," but that these are resilient, strong, interesting human beings suffering a horrid situation with little or no resources, and we should help them help themselves. As a journalist, I'm in awe of Stephanie Nolen in every respect. As a reader, I'm compelled to respond. I highly recommend the related website, [...], where you can read about each of the 28 briefly, and see a video interview of several. The website and book both give many ideas for how you can help. Start by reading a book that could change your life.

This book is incredible. It is not only very well written, it is also emotionally moving. I ordered it because it was recommended to me three different times, by three different people, in 2 days. It does not dissapoint!

Once I read 28: Stories of AIDS in Africa, I was able to understand the origin and transmission of the AIDS virus and the crisis it is causing in Africa. The author, Stephanie Nolen, through her first hand knowledge of these 28 real life stories, has been able to make me feel as if I am right there beside her listening and feeling the raw emotions of the storyteller. Women, especially, that read Nolen's book will benefit from the knowledge and insight gained about this worldwide pandemic.

I read this great book last summer during my third visit to Africa. As the orphan coordinator of a sponsorship program for four secondary schools in southwest Uganda, I have first hand experience with the results of the AIDS epidemic. I found the stories to be not all death and dying as you might expect, but interesting and inspiring. The author is right on target in describing the current situation in Africa, from the descriptions of governments, religions, health care, and also the roadblocks to progress that long-held attitudes and lifestyles present. I gave this book to five family members at Christmas!