Volume 18 Number 1 Winter/Spring 2001

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battling HIV with words

Alumni Reuben Granich and Jonathan Mermin are tackling the areas that have been the hardest hit but most poorly served in the AIDS epidemic. And they are doing it with a book.

By William Wells

AT THE APPOINTED TIME EARLY IN OCTOBER, Jonathan Mermin, MD, calls me from Uganda. "The WHO [World Health Organization] team is arriving in 15 minutes," he says. "Can we talk next week after I have gotten them off to Gulu?" * I am not about to argue. Gulu, about 225 miles north of Uganda's capital, Kampala, is the center of an outbreak of Ebola, a highly contagious virus that causes a deadly hemorrhagic fever. Gulu and Ebola get precedence over an interview.

The subject of our postponed interview is a book -- one that is accustomed to delays. Jonathan "Jono" Mermin, class of '92, wrote HIV, Health, and Your Community: A Guide for Action with fellow Stanford medical school graduate Reuben Granich, MD, class of '93. Before and during the writing of the book, Mermin and Granich were distracted by diseases in Brazil, Cameroon, the Ivory Coast, Japan, Latvia, Malawi, Nicaragua, Peru, Rwanda and Tajikistan. They have conquered E. coli lurking in lettuces and Salmonella hiding out on iguanas. They have
interviewed anyone from Tzotzil-speaking Mayans in the highlands of Chiapas, Mexico, to Juju priests in rural Ghana, to Boy Scouts in Maine. Both Granich and Mermin have finished residencies and completed Epidemic Intelligence Service traineeships at the Centers for Disease Control and Prevention.

In their spare time, they wrote a book.

Unlike most of the literature on AIDS, their book addresses communities with few medical resources. It covers the basic biology of HIV (the AIDS virus) and then moves on to the practicalities of community education, testing and counseling; the essentials of treatment when few funds are available; and a how-to guide for designing and funding HIV-prevention programs. The book is written in nontechnical language with plenty of illustrations and examples to make the text accessible even to people with no medical background. The British Medical Journal described the book as "concise," "eminently practical" and "a valuable effort to address this information imbalance."

Granich saw the need for such a text in 1991 when he did an infectious diseases clerkship in Kigali, Rwanda, with Projet San Francisco, a study conducted jointly by the Rwandan Ministry of Health and the Center for AIDS Prevention Studies at the University of California-San Francisco.

"That was the first time I was on the front line, the firing line of the HIV epidemic," says Granich. He estimates 80 percent of the patients on the tuberculosis ward had HIV, with two women per bed and two to three deaths occurring every morning. "There was a civil war going on [in Rwanda], but this was a warlike situation being caused by HIV."

And yet, says Granich, "there wasn't anything available for the layperson to read. When I got back, Jono and I talked about it. I said, 'We need to write a book on this so people can learn how to stop the spread of HIV in their communities.' "

Their model was a book that is one of the most successful health guides ever written. Where There Is No Doctor, by David Werner, PhD, has sold millions of copies and been translated into more than 80 languages. It is distributed by the Hesperian Foundation, a Berkeley-based nonprofit that Werner helped found. Although Hesperian did not have the resources to publish Mermin and Granich's book, Stanford University Press was quick to pick up the project.

Mermin and Granich started researching and writing in 1992, during their last years of medical school. But medical training is not usually associated with free time so the work progressed slowly. Somehow, eventually, they finished it. "I can't remember the delivery date," says Granich, "but it wasn't the year we promised."

As edits and rewrites progressed, Mermin and Granich came to appreciate the freedom of writing an independently produced book. The experience was a far cry from the more familiar process of writing documents for government agencies -- a task that requires countless compromises, they had found. With their independently produced book, though, Mermin and Granich settled any quibbles about content by
executive decision as they ate a sandwich or drank a beer. Their endeavor culminated in September 1999 with the triumphant arrival of a completed book.

"It was a great day," says Granich. "We were ecstatic.

"But it was just the beginning of the project," he adds. "The real goal is one of distribution and making sure it's used in the field."

And if the book succeeds financially, the cause of AIDS stands to benefit
financially as well because all profits go to AIDS charities. "We very much didn't want to make money off of AIDS. And it frees me to be a shameless self-promoter," says Granich.

Hesperian is also lending a hand with distribution. Stanford Press is more accustomed to an academic audience and is happy to have Hesperian's help in reaching small nonprofits and individuals living and working in poorer communities.

"It's a great book and we are happy to give it as much of a push as we can," says Todd Jailor, publications coordinator at Hesperian. The foundation is buying the book in bulk for resale at either full price (to what Jailor calls "the financially
developed but morally undeveloped" nations) or at a reduced price of $10 (to everyone else).

Unfortunately, says Jailor, "we get lots of letters from people who can't even afford that." Hesperian donates up to 1,500 of its books every year, but that is not enough (see related story: "How you can help"). "We probably turn down eight requests for every one we fill."

Granich has his own distribution problems. "We need money for this book," he says. "I get five requests a day by e-mail for books from projects that are very worthy. We've sent out over 100 books on our own finances but we can't do that anymore because we're going broke."

Money and resources are also needed for translations. Stanford Press says it wants to encourage translations and will charge only a token licensing fee to assert its copyright. The most promising prospects thus far are for a Portuguese version (through the Brazilian Ministry of Health) and a Spanish version (through the U.S. Agency for International Development). Meanwhile, Granich says, "if somebody in Vietnam wanted to knock this off tomorrow, I would be delighted."

The demand for books is driven by the scope of the HIV pandemic. While drug companies and researchers focus on solutions appropriate for developed countries, HIV cases are concentrated in developing nations. Africa is the hardest hit. According to the Joint United Nations Programme on HIV/AIDS, known as UNAIDS, there are 16 countries in Africa in which more than a tenth of the adult population is infected with HIV. In Botswana, 35.8 percent of adults are infected, and in South Africa the number of infected people has reached 4.2 million -- the largest number in any country in the world. In 1999 alone, more than 4 million new HIV infections took hold in sub-Saharan Africa.

Then there are the realities of treatment. "Many times you have zero medications," says Granich. Health workers are lucky if they have treatments for
basic opportunistic infections, and in most places patients must buy their own medications. Few can afford to do so. "Many people," says Granich, "just turn up at the hospitals to die."

Little wonder, then, that Granich sees the need for prevention. He hopes the book will play at least a small part in emphasizing that, while treatment is important, prevention ultimately has the ability to save more lives.

Granich cites several factors as key for improving prevention efforts. Money, of course, is important. Africa is burdened with $230 billion in debts to the developed world, with repayments costing the continent's governments $15 billion
every year. This dwarfs the amount of money that the same developed nations contribute to fight AIDS. "In sub-Saharan Africa alone, we need a minimum of $ 3 billion a year if we are to turn back the tide of the epidemic, but we are spending only a tenth of that," says Peter Piot, MD, PhD, executive director of UNAIDS.

Another essential element is government commitment, which appears to be on the increase in several African countries. Uganda is thus far the biggest success story -- it has nearly halved its HIV prevalence from 14 percent in the early 1990s to around 8 percent today.

But perhaps most critical are the people on the ground doing the actual work. "It's not just a matter of throwing money at things," says Granich. He says small, community-based projects are vital and are on the increase. Granich hopes the book will help local people to form even more such groups.

RIGHT NOW Granich is based in Berkeley, and it is Mermin who is in direct contact with the African health system. During the two months following our "non-
interview," the number of Ebola deaths passed 150, although the outbreak is now controlled. Outbreaks aside, Mermin spends most of his time with AIDS-
related prevention and care activities. He currently directs the Centers for Disease Control and Prevention's HIV/AIDS activities in Uganda, the first country in Africa to reduce the prevalence of HIV infection. "I wish we had finished the book 10 years earlier," says Mermin. "Everyone living in Uganda has lost a parent, sibling, or child to AIDS. Simple solutions, like an understandable, comprehensive book make a difference."

Does this backdrop of diseases, wars and a lack of resources make AIDS too tough a problem to tackle in Africa? Not according to Granich. He thinks mankind is up to the challenge. "We've tackled a lot of tough things," he says. "Going to the moon was tough."

And he and Mermin are not finished with their part in the project just yet. A second edition of their book, with improvements based on comments from health workers, is already in the planning stage. Meanwhile, Granich's fervor for the project is clearly not flagging. He has been talking to me almost nonstop for more than 90 minutes, leaning forward to make sure he is getting each point across and encouraging my every query. Finally he apologizes for "cutting short" our discussion even as he is running late for his next appointment. "This thing is so close to my heart," he says, "I could talk about it forever." SMD

More information about the book "HIV, Health and Your Community" is available on the following Web site:
http://www.hivbook.org/