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Stigma at home, fear of deportation haunt Jamaican illegal immigrants with HIV/AIDS

By Ingrid Brown
Jamaica Observer, Kingston
Friday, December 18, 2009; 1:30 PM

NEW YORK -- The two men drinking coffee in a booth nearby are in blue uniforms, police officers, so our conversation is minimal, punctuated here and there by anxious glances over the shoulder. We are huddled in a fast-food restaurant in the center of Manhattan, not far from Madison Square Garden, discussing something that is best addressed in muffled tones.

Please refer to me only as Samantha, she says. It is one of several names she goes by to shield her identity from those in Jamaica who might reveal the truth to her acquaintances there, and to prevent her from being cut off from what she so desperately needs here.

She is 32 years old. She is in the United States illegally. She has no medical insurance. She is HIV-positive.

Her face is creased with worry lines, and today, like every other for the past 10 years, she wonders if the long arm of the immigration law will finally grab her.

Samantha. She has borrowed the name from a deceased relative. It helps her hide from the shame associated with HIV. If her family and friends knew the truth, the shy, petite woman fears, her life would become like that of a leper. In Jamaica, the disease is shrouded in stigma and discrimination.

"Most of my family in Jamaica don't know that I am here sick," she says.

Samantha is the rare one bold enough to share her story. But she is not the only HIV-positive illegal Jamaican immigrant in this city, state or country without proper medical care.

Some have gone underground, fearing -- realistically or not -- that continuing to receive treatment through the public health-care system could expose their illegal status and result in deportation.

On this day Samantha wears an oversize coat and a peak hat pulled down on her forehead. Her sad, dark-brown eyes stare out as she recounts the experience of being with multiple sex partners before she learned three years ago while in the States that she was carrying the virus.

She had been ill for more than a year before she went to a hospital. "It was only after I became so sick and could barely find the strength to walk that I begged a guy to drive me to the emergency room," she says, twitching her fingers nervously.

"I don't believe I would have continued to have had several sexual partners if I knew I was positive all that time," she says, sadly.

Still, with no permanent home, no set income and no family support, Samantha continues to have multiple sex partners, at times, she said, to get a warm bed or food in her stomach when she is unable to find work providing home care for the elderly. As an undocumented immigrant, it is difficult to get jobs.

She believes that if medical care were readily available to illegal immigrants, she would have been diagnosed earlier and could have taken better precautions so as not to infect others.

Antiretroviral drug treatment, or ARV, is the primary way to postpone the worst effects of HIV. It is a treatment that, once begun, must be continued for life.

With no guaranteed medical care, Samantha is afraid to begin the treatment for fear of developing side effects, which would require her to see a doctor more often.

When she is treated in an emergency room, no one questions her immigration status, and she is less afraid that her cover as an illegal immigrant will be blown.

"It is hard," she says, sighing. "It is hard not having the support of family members."

Treatment vs. deportation

Yet even the thought that she could die lonely and alone in a foreign land is not enough to persuade Samantha to return to Jamaica, whose population of about 2.8 million people is less than a third that of New York City's and where she fears her HIV status would not be secret for long.

She has heard stories of Jamaicans who have sought asylum in the United States because they are infected with HIV and would not be able to get proper treatment should they return home. She hopes to garner enough courage to do the same.

Yet for her and others, going without life-prolonging ARV treatment and regular medical checkups is a lesser misfortune than being scooped up by immigration agents, put in a detention center and ultimately sent home with the label of deportee. Cheryl Hall, executive director of the Caribbean Women's Health Association based in New York, said scores of undocumented Jamaicans discover they are HIV-positive while living in the United States.

"Undocumented and ill, they simply wait until they are really sick and then they go to the hospital emergency room," Hall said. That, she said, places a greater burden on the U.S. health-care system because it is more expensive to treat someone in the disease's advanced stages.

Most government-funded programs bar those without adequate documentation of their legal immigration status. According to the Federation for American Immigration Reform (FAIR), a conservative lobbying group, there are 9.4 million uninsured immigrants in the country, most of them undocumented.

U.S. hospitals are obligated to treat all who seek medical care, regardless of immigration status, and send them bills for treatment. Many of those bills are never paid. California, for instance, which has a considerable Jamaican population, spends more than $1 billion a year on health-care services for illegal residents, according to FAIR

The immigration-reform group also noted illegal immigrants' use of hospital and emergency services rather than preventive care. "For example," it said, "the utilization rate of hospitals and clinics by illegal aliens (29 percent) is more than twice the rate of the overall U.S. population (11 percent)."

The main reason that undocumented Jamaicans are reluctant to seek medical attention earlier, Hall said, is the fear that after their data is entered into heath-care system records, their chances of obtaining green cards for permanent U.S. residency might be jeopardized.

And the problems might not end with the first hospital treatment if after-care is required. Some organizations have received grants to help those without sufficient immigration documents to obtain subsequent treatment, but such groups are few and hard to locate without the right connections.

Still another challenge is providing appropriate educational materials. Creole-speaking Haitians, for example, are especially disadvantaged, Hall said, because most of the information is available only in English and Spanish. Community health centers offer some medical treatment and advice, yet some refuse to take advantage of it.

Keeping a deadly secret

There are organizations that collect unused ARV medications from patients who have died or those no longer use them, and then dole them out to illegal immigrants who are ill. Some programs provide help without requiring information about immigration status.

Yvonne Graham, a Jamaican former nurse and founder of the Caribbean women's health group who now is deputy borough president of Brooklyn, said it is not clear how widespread the problem is because of Jamaican immigrants are loath to reveal that they are HIV-positive.

Graham was working at a hospital when she noticed that a lot of immigrants were coming to the emergency room gravely ill. That's when she decided to form the women's health organization, to assist people who were reluctant to seek health care because of their immigration status or because they thought it would hinder their chances of helping others come to the United States.

"They thought this may show they could not afford to sponsor a relative to the U.S., and so they did not want to jeopardize that chance," she said.

Graham said she fears that messages regarding HIV treatment might not be reaching many illegal immigrants who arrive in the United States with varying levels of awareness, including the connection between HIV and drug use.

"Some people live here in the U.S. and maintain relationships back in Jamaica, and that plays a role in the spread of the disease," she said.

"The earlier persons are diagnosed, the better chances they have of living healthy and productive lives," she added. "But the longer they wait to get medical attention, the worse their condition becomes and the greater the burden will be on the health-care system then."

* * *

Samantha gulps the last drop of her coffee. She wraps her coat even tighter around her slender waist and offers the first hint of a smile. Then she says goodbye and walks briskly down the crowded street, blending in with the sea of New Yorkers.

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