Sothea remembers her panic three years ago when her daughter and newborn granddaughter tested positive for HIV.
The 60-year-old woman feared she would contract HIV from her 25-year-old daughter, Pheary, and the new baby.
But an explanation by a doctor at Kantha Bopha Children’s Hospital on HIV transmission gave her the courage to become the primary caregiver for Pheary and the newborn—preparing food, washing clothes and boiling water for traditional medicines.
AIDS activists say Sothea’s willingness to nurse her HIV-infected family is an example that more Cambodians should follow. They are working on a new initiative to ensure that other AIDS-stricken Cambodians will not be shunned by family members afraid of contracting HIV, the virus that leads to AIDS.
The Ministry of Health is due to hold an inauguration ceremony today for a 12-month AIDS home-care program. Worker training started in February and home-care referrals are set to begin in May.
If the program is successful, Cambodians with AIDS will die properly cared for by family instead of on the streets or abandoned in hospital beds.
The World Health Organization-funded program, being carried out by seven local NGOs and the Ministry of Health, seeks to teach families to accept and nurse their own HIV-infected family members, said Henrietta Wells, the program coordinator.
The first hurdle will be to convince people that human skin is a thick barrier that prevents transmission of HIV through touching, breathing the same air or kissing, Wells says.
HIV, she explains, is essentially exchange of internal bodily fluids, which excludes saliva.
The program covers 40 caseworkers who are being trained in home care. A referral system will link Phnom Penh’s hospitals, health centers, community leaders, wats and NGOs.
Caseworkers will meet sick patients, then seek permission from families to provide training in HIV safety and basic health care. The home care includes keeping the patient clean and clothed, free of infection and well-fed with nutritional meals.
Workers will visit about four homes a day. Follow-up visits will include psychological counseling for the family.
According to Wells, people with HIV can live a normal life for up to seven years. After AIDS is diagnosed, their life span is typically between a few months and two years.
She added that health workers detected the Cambodia’s first known case of HIV in 1991. Some 120,000 people now are infected with the virus.
Activists say the AIDS epidemic isn’t grave yet. But there are signs that deadly AIDS-related diseases are mounting.
Father Jim Noonan, co-country representative of the Catholic NGO Maryknoll, which runs a health center in Phnom Penh’s Dangkao district, said that of the 110 HIV sufferers in contact with the center in the last six months, more than 40 have died.
As AIDS-related illnesses rise, he and others warn, the public health sector will be ill-equipped to respond.
Dr Veng Thai, director of the city’s health department, said underpaid and uninspired public health workers refuse to look after the AIDS patients occupying 400 of Phnom Penh’s 2,500 hospital beds.
According to one activist who routinely visits AIDS patients in hospitals, the workers there either fear contracting AIDS or feel that the work involved in cleaning and feeding an AIDS patient is beneath them.
If AIDS patients don’t have family to care for them in hospitals, they are abandoned, left unfed and unwashed by hospital staff.
In terminal cases, hospital staff ask the families to take the patients home to die because the workers disdain taking corpses the wats for cremation, Veng Thai said.
Veng Thai said while it is easier to care for an AIDS patient in a hospital, it is far more expensive. He said families are capable of providing decent care to AIDS patients, but simply do not know how.
“The country is struggling to have a health care system and then the new epidemic of AIDS is poured onto this system,” said Noonan. “We’ve all got to do something. If you rely on just a few people, it’s overwhelming.”
“You can’t make this terrible thing go away,” Noonan added. “We’re going to be very limited in what we can do [in the home]. But this is a very meaningful way for family members to really feel that we’re with them.”
Sothea has been receiving help in home care from NGO workers at Maryknoll after Pheary sought out the organization’s health center in Phnom Penh’s Meanchey district.
While she says caring for Pheary and her granddaughter occupies her “24 hours a day,” Sothea works hard at caring for them to “encourage her daughter’s heart.”
At night, the girl often cries. Pheary feels sick, too, but has good days when she feels well enough to go to the market to sell bean sprouts.
“It takes my mind away from thoughts of having HIV,” said Pheary, who husband passed the virus on to her.
He died in 1996.
Pheary says she knows that the traditional medicines she takes every day won’t cure her and that the neighbors do not visit anymore because they are afraid of HIV.
“I want to talk to them, but I don’t understand why they don’t want to come see me anymore,” she lamented.
She fears that her daughter will see her die and she fears that Sothea will become sick and be unable to care for them.
“I don’t want to die before my daughter because then who will be her mother?” Pheary asks.
(Additional reporting by Touch Rotha)