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Hoping Against Hope

An AIDS hospice in India provides much needed care

Meena looks and behaves like any other 10-year-old girl in India.

She plays with her friends, watches out for her younger brother, Shiva, and mothers a 4-year-old girl, Preethi. But Meena (names have been changed), her 5-year-old brother, and the 4-year-old, who is paralyzed, are all H.I.V. positive.

They and about 12 other children and around 30 adults are all under the care of Mar Kundukulam Memorial Research and Rehabilitation Complex, a hospice for people with AIDS located near Trichur in the southern state of Kerala.

AIDS claimed the lives of Meena and Shiva’s parents. As a last resort, relatives, who were unable to care for the siblings, brought them to Mar Kundukulam.

Here Meena and other children are fed, clothed and sent to school. They also receive medicine to combat secondary infections and are started on antiretroviral therapy.

The hospice was established in 2000 for patients with H.I.V. or AIDS, who were untreated or had been turned away by other medical facilities.

“We have had some 300 patients pass through here since we opened,” said Father Varghese Palathingal, who runs the hospice named after the former Syro-Malabar Catholic Archbishop of Trichur, Mar Joseph Kundukulam. “We are the only facility of this kind in Kerala, perhaps in all of southern India.”

The AIDS epidemic in India is well-documented. The country has the second largest infected population in the world after South Africa. But for all practical purposes the country acts as if AIDS is not a serious social problem. Ignorance remains common among the public and even some supposed experts.

Hospitals and medical staff still routinely turn away patients. When their infection becomes known, people are pushed out of their homes by their communities, sometimes even by their own families.

Fear of dismissal or reprisal has forced most to keep their H.I.V. status secret at work and school. In addition, drugs that are immediately available in the West are out of reach due to cost. With nowhere to go, many of the infected take their own lives.

In this environment, the hospice seems heaven-sent to patients like Parvathi, a woman in her mid-30’s who spent close to a year recuperating here.

She came to the facility depressed and suicidal after she learned that her entire family, including her then 3-year-old daughter, was H.I.V. positive.

She said the care and counseling of the Mar Kundukulam staff and the camaraderie of her fellow patients renewed her will to live. “I don’t feel lonely knowing there is always a place I can come to.”

“Mar Joseph was eager to set up such a place, after seeing the plight of AIDS patients in our country,” said Father Palathingal. “Unfortunately he couldn’t realize his dream before his untimely death in 1998.” His successor, Mar Jacob Thoomkuzhy, built the facility.

Father Palathingal found dedicated staff to run the hospice among the sisters of the Society of Nirmala Dasikal, a community also founded by Mar Joseph.

Sister Silvi Porathur, the head nurse, runs the day-to-day operations at the hospice. “I was the only one among my colleagues to apply for the post,” she said. “My family was worried about my safety.”

She agreed that ignorance and fear about the disease are widespread in India. At another hospital, she recalled, the beds of H.I.V.-positive patients were prominently marked with signs that read “AIDS.”

“They were also encouraged to leave after a day or so,” she added.

According to Parvathi, the first few weeks after a patient receives the news are crucial.

“If the doctor shows indifference or fear, the patient can lose all hope,” she said, recalling that some doctors and nurses would not even touch her.

She became suicidal, but remained defiant. “God gave us the brains to survive.”

Today Parvathi provides support to those who have just learned of their infection.

To make ends meet, she started a small business with the help of a local women’s club. She sells flowers and bleach and rents household items to her neighbors; articles, she is quick to point out, that carry no danger of spreading the virus.

Such turnarounds are common at Mar Kundukulam. The hospice even helps out those whose health has improved, but cannot return home. Currently five men and eight women, who have been discharged from the facility, have elected to stay on nearby. The women earn their keep by working at a church-owned match factory. They keep their illness secret from their fellow workers.

The secrecy is needed because Father Palathingal does not want to provide ammunition for ignorant detractors. When the center was first proposed, he expected opposition from local residents, so he carefully laid the groundwork for the center by starting an H.I.V. awareness program in 1997. Using the positive feedback from this and the good will he had earned for his work with the mentally handicapped, Father Palathingal began to reveal plans for the AIDS hospice.

The reaction was swift and hostile. Posters began appearing calling Father Palathingal a “desh drohi,” or traitor; neighborhood children no longer ran to him; and people who otherwise appreciated the priest’s good works begged him to take up another cause.

“Intellectually, people may understand AIDS, but in practice nobody likes it when it shows up in their own neighborhood,” Father Palathingal said.

It was an act of kindness that defeated local resistance and eventually allowed a federal cabinet minister to inaugurate the facility on 10 April 2000.

The change in public opinion came when a local AIDS sufferer who had been thrown out on the street by his family was taken in by Father Palathingal.

With this act serious opposition to the hospice petered out. Today, “some of the neighbors are even quite friendly with our patients,” Sister Silvi said.

At the facility, the patients are glad to see Father Palathingal. His speech, touch and manner reveal real affection and concern. The children often swarm around him like some kind of off-season Santa Claus.

One child, Christy, grew so close to the priest that he now lives with him and the sisters at Pope Paul Mercy Home, a nearby facility for the mentally handicapped, also run by Father Palathingal.

Christy, an active 2-year-old who insists on going everywhere with the priest, was also at the center of a recent medical controversy. The boy was born H.I.V. positive and was abandoned by his parents. When his status turned negative at around 18 months, his health became the subject of public speculation.

Father Palathingal, the sisters and even some doctors credited the Ayurvedic treatment the boy received at the hospice for his negative status. Other medical professionals disagreed, saying such cases are rare but natural occurrences.

“During the first 18 months, a mother’s antibodies can remain in the child, without infecting him,” said Dr. Gopal Sankar, a young physician volunteering at Mar Kundukulam. “This may lead to H.I.V. tests coming back positive at first. Later, when the mother’s antibodies finally disappear from the child, the same tests will come out negative.”

Still, Dr. Sankar is not willing to dismiss any effect the Ayurvedic treatment and proper nutrition may have had on Christy’s condition. “We cannot just rule these things out. I’m not aware of any conclusive studies on the reasons for this change in pediatric cases.”

At Mar Kundukulam, after most patients are treated for their secondary infections – tuberculosis in most cases – they are immediately started on Ayurvedic treatment and a nutritional diet.

Due to cost, most patients cannot afford antiretroviral therapy. The hospice tries to help out in desperate cases, but can only do so much. The children, however, “are all given antiretroviral treatment when the time comes,” Sister Silvi said.

For the adult patients, such treatment can be “a vicious cycle,” said Dr. Sankar, adding that patients have to take expensive tests every couple of months to check their white blood cell count. Once they receive bad news they have to start on the more expensive antiretroviral drugs. At around 1,500 rupees ($33) per month the cost can be difficult to meet.

“I’ve had patients tell me they do not want to take the white blood cell test since they believe they’ll gain nothing by knowing,” said Dr. Sankar. “They say bad news will only weaken their morale.”

Dr. Stalin Kuriyan, the institute’s psychologist, said fighting depression in patients is the hospice’s main function.

“When patients ask me what is the point of prolonging their life,” Dr. Kuriyan said, “I tell them we may find a cure someday. When they say they feel ashamed of their condition, I tell them they have not done any evil to deserve this.”

With the caring and sense of belonging that come from being at Mar Kundukulam, most patients’ outlook improves within two to three therapy sessions, he said.

Dr. Kuriyan, who also practices homeopathy, described his secondary field as providing a “constitutional remedy.” He insisted that no conventional treatment is spared to treat secondary infections, with alternative therapies used only in conjunction with standard ones.

Even those less convinced of the effectiveness of Ayurveda or homeopathy see no harm in the treatment.

“I don’t know how much the alternative therapies help,” said Dr. Sankar, “but at the very least they may have a positive psychological effect.”

The hospice’s four doctors volunteer their services two or three times a week.

Dr. Sankar’s commitment to Mar Kundukulam comes from a debt he feels he owes Father Palathingal. “My younger brother, who suffers from mental illness, received care at Pope Paul Mercy Home. I felt I needed to do something.” He added that the “smiles of gratitude on the patients” are thanks enough for his workload.

Still he is candid about who does the bulk of the work at the hospice. “We doctors come and go, but the nurses live with and take care of the patients day in and day out,” he said. “You have to admire the sisters and priests who do this out of dedication.”

Despite improved awareness about AIDS in India, the need for more facilities like Mar Kundukulam is still acutely felt.

The plight of patients in Kerala should improve significantly with the completion of a 100-bed expansion of Mar Kundukulam, said Father Palathingal, who is in the process of acquiring the latest equipment for the new facility.

“Right now, we don’t charge a patient for any of our services,” the priest said.

“If patients are well-to-do and would like to help out, we suggest they make a contribution to Pope Paul Mercy Home.”

Staff at the hospice insist they have everything they need to take care of patients. However, when pressed, they agree that one thing is missing: antiretroviral treatment for all.

“It breaks my heart when we cannot provide them with the drugs they need,” Sister Silvi said.

Such dilemmas are common in the neighborhood that surrounds Mar Kundukulam. Father Palathingal, who is something of a workaholic, also runs other facilities for the handicapped and the infirm.

Mar Jacob does not have any plans to relieve the priest at the hospice. “Unless there is continuity, things will not run smoothly,” he explained, though he added he has appointed a young priest to serve as Father Palathingal’s assistant.

That he is not going anywhere soon should come as great comfort to Father Palathingal’s patients.

As Rajeev, a former patient who still lives near the hospice, said, “I just feel more confident around him.”

Anthony Kurian, a journalist living in Kerala, is a first-time contributor to ONE.

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