by Saeed Shabazz

The issue of children left behind because their parents have died of AIDS�so-called AIDS orphans�is a widely discussed tragedy on the African continent. But in the United States, the issue rarely is mentioned.

That may be about to change.

"We know that 90 percent of children orphaned by AIDS are in sub-Saharan Africa. And we know the numbers are increasing in Asia, the Americas, Central and Eastern Europe and the countries of the Commonwealth of Independent states," says Philip Hilton, vice president for Fund Development at the National Black Leadership Commission on AIDS in New York. "But what we, the American people, don�t know is that we have a house on fire right here in our country, right here in New York City."

Mothers taken by AIDS have left behind 6.2 million children worldwide. In the United States, the Centers for Disease Control and Prevention (CDC) estimates there are 70,000 to 125,000 children left behind by parents who have died from the disease.

By the end of next year, 58,000 children in New York State will be orphaned due to maternal deaths from HIV/AIDS, according to the New York Department of Health. The CDC reports that in New York City, every hour seven people test positive for AIDS, five of seven live in Central or East Harlem and three of the five are Black.

The word AIDS still carries a stigma in the Black community, says Mr. Hilton, therefore, the fact that children are being left parentless and the impact on the Black community doesn�t even appear on the radar screen, he says.

"In fact, the last comprehensive study on the orphaning issue that I have seen is seven-years-old," he says.

That study, written in 1993 by the Federation of Protestant Welfare Agencies, is called "Families In Crisis." It stated that some 50,000 children would be orphaned in New York City.

The Louisiana State Medical Society also broached the issue in a 1996 report that stated the AIDS orphan count for the state "is predicted to range between 1,242 to 2,627 infants and children by year 2000, and the economic impact on the foster care system budget could range from $308,112 to $624,546." A footnote to the report stated that a majority of the children are Black.

In 1995, the Boston Pediatric AIDS Project released a report titled "Living Legacy�Planning For Our Children." The report concluded that orphanages were not the answer because they remove children from their social origins, therefore, the need is for acceptable alternatives, such as extended families.

"My mother died of AIDS in July of 1995, she was 43-years-old," says Khadijah Fulwood, 26, of the Bronx. She says her mother�s death caused her younger brother to try to commit suicide. She also remembers going to live with her grandmother when she was seven-years-old, even before her mother, a heroin user, died.

Ms. Fulwood says that she wishes her mother "could have been more up front" about her illness. "Maybe I could have helped her stay on her medication," she says. "I have been honest with my daughter about what happened to my mother. I want my child to feel that there is nothing we can�t talk about.

"To this day my grandmother tells everyone that my mother died of cancer. She refuses to use the AIDS word," Ms. Fulwood says.

Even so, it is the elders�the grandparents�who are bearing the brunt of these children left behind; and they prompted some AIDS activist groups to begin the discussion about the AIDS orphans.

The grandmothers began to speak up, says Deborah A. Levine, vice president for Health and Wellness Strategies, a division of the Harlem Congregations for Community Improvement, a consortium of 80 churches. "It was the grandmothers telling their pastors the problems they faced�their children coming back home sick and bringing their babies with them," she says. "And the ministers started listening because the evidence was mounting � one funeral-at-a-time."

One of the earliest studies in the United States to determine the prevalence of older surrogate parents was conducted in 1995 and published in the Journal of Community Health. The survey is called: "The Prevalence of Grandmothers as Primary Caregivers in a Poor Pediatric Population."

The survey included three clinics in low income neighborhoods in New York City with high incidences of female HIV/AIDS and substance abuse. Of the 1,375 families surveyed, eight percent were headed by grandmothers. Forty-seven percent of those grandmothers were age 55; twenty-five percent were 60; and eight percent were 70-years old. Most of them were caring for more than one child, the study concluded.

The study also said, "the young ages of the children suggest that many grandparents may continue to be caregivers as they reach their sixties, seventies and even eighties."

"That is a telling statistic," says Ms. Levine, adding, "we cannot properly assess the needs of these families until we know just how bad the problem is, and there is still no hard data."

What also alarmed the New York AIDS activists is a finding in a survey released on January 31, 2000: "70 percent of the people surveyed said that they have never used free health screenings and over half (51%) would not use them."

The survey indicated inconvenience is a main reason people don�t use health services. Most facilities are not open after 5 p.m. or on weekends. Blacks were the most responsive to access health screenings if free childcare and convenient public transportation were made available.

"We need a realistic review of this issue," says Mr. Hilton. "I repeat, we have to get people talking about these children who are left behind. We have to make sure that the resources follow the trend of the epidemic. If the grandmothers are taking care of the children, then that is where the money must be spent."

Mr. Hilton says the Clinton administration in 1998 earmarked $10 million for AIDS orphans. The money flowed slowly to the Black and Latino communities, he says, even though 90 percent of the children left behind come from minority neighborhoods.

In 1994, an estimated 48,000 U.S. residents died from HIV infection, statistics show. An estimated 22 percent of the dead were Black women. Among Black women, heterosexual contact is the most common mode of HIV transmission, accounting for 38 percent of new cases. Heterosexual contact has surpassed injection drug use, although injection drug use is still significant.

Injection drug use also plays a substantial role in HIV transmission among Black men, more so than among men in general. Thirty-one percent of new AIDS cases among Black men is due to injection drug use, compared to 23 percent of all men and 11 percent of white men.

Sex among men is also a significant transmission route accounting for 32 percent of new cases among Black men, according to the National Survey of African Americans on HIV/AIDS, a report by the Kaiser Family Foundation, released in March 1998.

Forty-nine percent of those who died from AIDS in 1998 were Black men and women, compared to 29 percent in 1990.

"I knew that people were getting AIDS," admits Terese Amalbert, a mother of two daughters who were 11- and 12-years-old in 1991, when she learned she was infected. "I used drugs and I was promiscuous," she says. Ms. Amalbert tries not to think about dying. "That is why I have become a peer counselor; it takes up my time and I don�t think about my problem," she says.

However, she feels a sense of frustration with the system. "I thought AIDS was something you died from right away. There�s a lack of education. There was so much I didn�t know. I never thought I would be alive in the year 2000," she admits.

"Far too many Black women have poor information on how they can be infected with HIV/AIDS," concurs Dr. Barbara Justice, a New York-based physician. "It�s long been a theory of mine that a woman�s lack of access to information kills just as quickly as lack of access to health care."

The CDC cites three reasons for the rapid spread of HIV/AIDS in Black and Latino communities: the health disparities between economic classes, the nation�s inability to successfully deal with substance abuse and the epidemic of sexually transmitted diseases.

"AIDS is undermining our capacity as a community to achieve goals for the development of our children," observes Mr. Hilton. "Girls whose parents have died often have to care for their siblings and take on extra work, thereby reducing their opportunities for schooling. We found this as a parallel issue throughout the world and in the United States."

"We don�t know about the AIDS orphans because the media is too busy hyping the news about the new medications. The media is telling us that people are no longer dying, well that is only true for white gay males, not for Black and Latino women," says Ivy Gamble Cobb, deputy director of the Family Service and Resource Center in lower Manhattan.

The Family Center is working with 260 families (400 children and adolescents) to help them prepare for the future�a future that could mean life at an early age without a mother or father.

"I cannot say that the number (of AIDS orphans) will reach the 58,000 predicted by the CDC, but I know the number will climb because we are (going) to hospitals more and more to talk to the primary parent or parents," Ms. Cobb says.

The CDC seems to agree. The Atlanta-based agency in March estimated that "750,000 to one million people will have AIDS in America by 2001," and that one-half of those infected have not been identified.

"That�s two decades after AIDS exploded into the public consciousness," observes Ms. Cobb, adding, "50 percent of the people who were living longer because of the medications are becoming ill again and we are seeing that many more women are becoming infected."

"We had these great things happening and they are not happening any more," says Dr. Jeffrey Laurence, director of the Laboratory for AIDS Research at New York Hospital/Cornell Medical College. Before 1995, the AIDS death rate had increased every year, but between 1995 and 1996, there was a decrease of 42 percent overall, 37 percent for Blacks, he says.

"Everyone cheered and thought this was wonderful�until the next year," Dr. Laurence remembers.

In 1997-98, the decrease was 19 percent and Dr. Laurence says that predictions for 1998-99 might show no decrease at all. "For the 50 percent who were using the medications, the drugs stop working after about a year-and-a-half," he says.

"We must take ownership of this issue�to put the fire out�we must work from the inside out," says Philip Hilton. "As a world community we must stay focused on these children in Africa and Asia, but people here are not thinking in those terms when it comes to the United States. We have to get people here thinking about the children that are being left behind," he insists.