In 2003, one of the better places to die of AIDS in Cambodia was in a hospice on the edge of Phnom Penh with an open-air porch and a view of the rice fields. Run by the Maryknoll Missionaries, its 13 beds were always full. It was that year that I approached the photojournalist James Nachtwey to help us inform the world about the suffering exacted by tuberculosis and AIDS and the need for solutions. If people could see with their own eyes the decimated young people, or the infected babies who knew nothing but fever and pain in their short months on earth, perhaps the humanitarian agenda just might be shifted.
In one of the first beds at the hospice, we found a young widow with a shaved head staring at a snapshot of her baby girl, and waiting to die. She was emaciated with very advanced AIDS. Moments before, she had signed the papers to give up her small daughter for adoption—she had no other options.
There were also terrible places to die of AIDS in Cambodia. A priest had taken me to a ward that was a last stop for destitute TB and AIDS patients. With few doctors and nurses and even fewer medical supplies, it was like a dumping ground for the infected poor where mothers and fathers, wives and children had only their touch to lessen the suffering of those they loved.
In one of the rooms of the ward, we found Chia Samouen. From Battambang in the west of the country, he had cleared landmines for a living. At 32, he had survived the minefields but not the visits to prostitutes he made two or three times a month. Samouen was typical of men who leave their village for work in the cities and become infected with HIV and then infect their wives. The husband typically dies first, leaving the wife and a new baby HIV positive. In fact, the majority of new AIDS infections in the world occur in monogamous women and in newborn children whose only crime was to share a heartbeat with their mother.
In addition to HIV infection, Samouen’s lungs were riddled with tuberculosis. And when TB partners with HIV, it becomes the perfect ‘match made in hell’. TB has in fact, been the cause of death in nearly half of the 30 million AIDS deaths that have so far occurred globally, even though TB has been curable with a six to eight month course of therapy since the early 1970s.
Samouen was writhing in pain and holding his belly due to a bleeding ulcer. The pinks of his eyes were stark white indicating that his hemoglobin was extremely low, probably from bleeding. He was unable to drink or eat. His wife had spent all of their money, selling even their small plot of land, to bring him to the hospital, and there was no money left to buy morphine or intravenous fluids.
With a seven-year-old daughter playing quietly in the corner of the room, his wife said she had decided not to abandon him. She would care for him until the end. We brought drugs and went to donate blood but he was too far down one road and the end came a few days later after massive internal bleeding.
Shortly after that visit, the Cambodian Health Committee, the local Cambodian non-governmental organization I co-founded, set out to transform that ward to a place of life and hope. And in the seven years since, over a thousand patients have received AIDS medications and many more have been cured of their TB. It is the major site for an international clinical trial that will determine the optimal approach to treating TB and AIDS and knowledge from this former ‘dying field’ will set global standards.
In the world today there are at least 33 million people living with HIV/AIDS including 2 million children and only 10% of these people have access to drugs. The World Health Organization estimates that there are at least a half million new drug resistant TB cases annually—with less than 50,000 on therapy. Many in fact think the global number of drug resistant TB cases could be in the millions.
That poor people are condemned to die because of a lack of access to life-saving drugs and care for AIDS and TB is the most basic affront to the Universal Declaration of Human Rights, which guarantees that “everyone has the right to life, liberty and security of person.”
Engaging that unique human ability to share the pain of another begins the process of repair. It leads to solutions. As the great Hasidic master Nachman of Bratslav wrote in 1810 before his death from TB at the age of 38, “the whole world is a very narrow bridge…the most important thing is to have no fear at all.”
Anne Goldfeld, a native Californian, is a professor of medicine at Harvard Medical School in Boston and the co-founder of the Cambodian Health Committee (also known as the Global Health Committee www.globalhealthcommittee.org). Parts of this piece were excerpted from an installation photo/word piece created with James Nachtwey for the photo exhibit ‘Struggle for Life’ presented in Paris, Bangkok, and Berlin.