UGANDA: Genocide by Denial

Photo: Glenna Gordon/IRIN
The book tells the story of Uganda's fight against AIDS from the frontlines
KAMPALA, 10 September 2008 (PlusNews) - Uganda has been called "the birthplace" of AIDS; some of the earliest known cases can be traced to the central district of Rakai, where long-distance truckers started dying from a mysterious illness in the mid-1980s. That small demographic soon mushroomed into a global pandemic, with Africa at its epicentre.

Despite being the most affected, the continent was on the sidelines of the response for years, only belatedly benefiting from prevention campaigns and pharmaceutical interventions.

In a new book, Genocide by Denial: How Profiteering from HIV/AIDS Killed Millions, Dr Peter Mugyenyi tells the story of the AIDS epidemic in Uganda from its frontlines: hospitals, orphanages, graveyards, witch doctors' homes – everywhere but from a drug supply cupboard.

Mugyenyi was one of the founders of Uganda's Joint Clinical Research Centre for HIV/AIDS (JCRC), which pioneered the provision of life-prolonging antiretroviral (ARV) drug treatment in Uganda in the mid-1990s.

The book is a personal account of "throw[ing] a bucket of water into the towering inferno" of Uganda's HIV epidemic at a time when the country could do little more than look on as its people died slow and preventable deaths.

After doing his medical training in the United Kingdom, Mugyenyi returned to Uganda to find a mounting death toll from AIDS. Every day he watched parents burying their children and children burying parents. The drugs that could save his patients' lives were available, if they could only afford them. "The vast majority of my patients died not just of AIDS but of poverty," he writes.

''The vast majority of my patients died not just of AIDS but of poverty''
In the early 1990s the first generation of protease inhibitors [anti-HIV drugs designed to suppress virus replication] cost US$14,000 per year per patient, at a time when most Ugandans earned less than a dollar a day.

Mugyenyi had to turn away thousands of patients, including some of his own relatives, because the life-saving medication was so prohibitively expensive; neither his relatives nor his many other patients could understand why, if there were drugs for their condition, they could not get them.

In his narrative about Uganda's battle for affordable AIDS drugs, Mugyenyi recalls details that are almost unimaginable in today's world of $10-a-month ARVs: how at the height of the epidemic people started planning funerals as soon as their relatives began coughing; and how Kampala's ubiquitous pork eateries gained popularity as people sought to avoid the weight loss associated with 'slim' disease [a local euphemism for HIV/AIDS].

He lashes out at big pharmaceutical companies that could have saved lives but didn't, accusing them of blocking the manufacture of generic versions of their ARVs on the pretext that they needed to recoup their development costs – an excuse which Mugyenyi carefully and convincingly debunks.

He finds, for instance, that significantly more was spent by drug companies on marketing their ARVs than on developing them, especially since several of the components commonly used in the drugs were already available.

He demonstrates how this prevarication was combined with the myth that Africans could not be trusted to efficiently manage or take life-long ARV treatment to keep the drugs out of their reach.

Donors also come in for criticism. In the days before big spenders like the United States President's Emergency Plan for AIDS Relief (PEPFAR) they gave meagre amounts of aid that did little more than boost their public image. "Not all donations should be accepted all the time," Mugyenyi argues, "because some of them end up as aid to the donor."

Finally, he chastises African leaders for not coming together to deal with what was undeniably a shared crisis. He urges today's leaders to advocate for the needs of their populations, and to unite against international laws seeking to limit the availability of cheap generic ARVs.

Mugyenyi ends his book with a warning: even as the fight against AIDS continues, other preventable global epidemics like Severe Acute Respiratory Syndrome (SARS) are gathering force and pose serious health threats if the lessons of the AIDS epidemic are ignored.

Jean-Louis Kayitenkore
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