Hoping Against Hope

Hospice provides care to Indians with AIDS

text by Anthony Kurian
photographs by K.L. Simon

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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.

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Tags: India Health Care HIV/AIDS