"That just got by us." Former President Bill Clinton at the 2006 World AIDS Conference on being asked why the United States government had never established ongoing programs for its own AIDS orphans
America has the most AIDS orphans in the Western world, but you'd hardly know. As Madonna and Angelina Jolie comb the world for orphans, American children who have lost parents to AIDS seem to have no celebrity champions. None of the big foundations, from the Clinton Foundation to the Gates Foundation to Bono's Red Campaign, give any assistance to American AIDS orphans. Not one dime.
Our federal government donates billions to support AIDS orphans elsewhere. We also have an annual federal allocation of some $2 billion to fund extra support and care for American adults who have AIDS -- but the United States has no specific government funding to assist American children orphaned by AIDS or living precariously in families where the parent, usually a single mother, has HIV, the AIDS virus. Some years ago, the Health Resources Service Administration, which administers the annual $2 billion stream which is the main federal money for AIDS, forbade local organizations receiving these funds to use them even to provide grief counseling for children when a parent died. The only exception could be if the child, too, had AIDS. Since most children orphaned by AIDS in the United States -- particularly now that treatment can prevent maternal transmission of HIV -- do not, themselves, have the virus, this meant only a handful of American orphans would receive support or counseling when their parent died. This ruling provoked one of the few outbursts of advocacy for these children; it was changed to allow "brief grief counseling" on parental death.
How many American AIDS orphans and children living in homes where the parent struggles with AIDS are there? No one knows for sure because two decades into the epidemic no one counts them. That is correct. The Centers for Disease Control doesn't count them, the New York City Department of Health doesn't count them; no one does although it would be quite easy with all the mammoth AIDS statistics now kept simply to mark down how many children were in the care of anyone diagnosed with AIDS or HIV, the precursor virus. My own projections for New York City -- which is almost certainly the city with the most AIDS orphans in the Western world -- are that the city currently has some 53, 956 children, youth and young adults whose parent(s) have HIV/AIDS and that some 1,000 a year are out-rightly orphaned; nationally, studies suggest there are 200,000 American women in the child-bearing and raising years living with HIV/AIDS and that they have two children on average.
New York City demonstrated the astounding public determination to ignore these children a few years ago when it formed a New York City Commission on AIDS. Appointed by Mayor Bloomberg on the recommendation of the Health Commissioner Thomas Frieden, the Commission was assigned to make overall recommendations to improve and guide New York's response to AIDS. After the Commission spent a year "defining" major issues, its initial report didn't mention AIDS orphans once; the final report, in response to complaints, did mention these children -- once. Not a single of the 21 Commission members came from the Bronx, Brooklyn or Queens, the three "outer boroughs" where 75% of women with AIDS in the city live and therefore the places having the most children and families affected by parental AIDS.
What happens to these children? There is only one long-term American study of these youth which, not surprisingly, shows them to be in very sad condition. Almost half have psychiatric problems, ranging from depression to "multiple problem behavior." While medical treatment for AIDS has improved greatly and parents now live longer, for young people, the impact of having a chronically ill parent -- especially with a disease that people still wish to hide -- remains devastating. Teenage girls in these families who had had no support or counseling to help them cope with their sadness and worries had a 35% pregnancy rate over 4 years!
When parents do die, kids are sometimes taken in by relatives and friends -- or sent to foster care -- but they are often lost to the "system." As time has gone by, many of the children have become teenagers and they routinely end up homeless. One volunteer at our organization who has AIDS, himself, recently took in a 10 year old boy. When the child's mother died in the hospital and the rent wasn't paid, the child was the person left to be evicted, along with all the family belongings, which were dumped on the street. He wasn't left in possession of even his childhood pictures. A staff member had to go rescue her nephew in another city where he'd been thrown into an adult homeless shelter -- and sexually assaulted -- after his mother's death.
These stories are sad enough but what makes them far sadder is that, as is so often the case with hurt and isolated youth, a little concern can reap miracles. The Center for Community Health at UCLA, in undertaking the sole long-term study of American AIDS orphans and HIV-affected youth, found that after just a few months of group and individual counseling, "multi-problem behavior" among the distraught teens plunged.
My own organization, Health People, in the South Bronx, has a unique mentoring program, called Kids-Helping-Kids, in which we train older teens from AIDS-affected families to be mentors and leaders for younger children in the same situation. Watching these youth blossom is one of the greatest pleasures anyone could have. The older teens, who are often isolated and angry, almost immediately grow into their role as helpers and leaders while the younger kids get mentors who truly understand their fears and worries.
Outside evaluation shows that kids in this program are at far lower risk for drug use and other problems and "risks" than usual for kids in AIDS-affected families.
The city took away all of our small amount of public funding last year.
Bono did visit the Bronx last month. He dropped by to promote his new album. But if he knew he was in the American county with almost certainly the nation's highest concentration of AIDS orphans, he didn't mention it. I couldn't help but consider how easy it would have been for him -- about no effort at all -- to turn his private promotional concert into at least a small benefit for these American youth.
For all that the AIDS community has been noted for advocacy and demonstrations, along with the ability to raise funds and public awareness, the truth is that AIDS leaders, themselves, have not fought for these children. Leadership within AIDS is largely concentrated in the "baby boomer" generation -- a generation whose causes, however correct they may be (women's rights, gay rights, etc.), tend to focus on themselves. Accordingly, even though nothing has been done to assure youth in families scarred by AIDS receive the extra concern and support that they desperately need, the AIDS community is currently focused on building services for people age 55 and older.
In New York City, as we know, vast services, from grief counseling to college scholarships, were in place right away for kids who lost a parent in the tragedy of 9/11.
But, in the city with the most AIDS orphans in the Western world -- kids who happen to be 90% Black or Hispanic -- these tragic youth remain the kids "who just got by us."
This is Part II of a series of blogs, "America Hates Kids" examining key issues for American children.