At Children’s Hospital, a request for cash over toys drops donations for families affected by AIDS
on November 12, 2009
Every year for the past two decades, a special holiday party for families with HIV–children and teenagers who are HIV positive, or have parents or siblings with the illness–has interrupted the usual December routine of the Children’s Hospital and Research Center in North Oakland. The central hall of the outpatient clinic building is decorated with streamers. There’s nail and face painting, cookie decorating, and a Mickey Magic Show arranged by the National Charities League. Employees from the telecom company AT&T provide the food.
And every child is supposed to leave the party clutching a gift that has been chosen and wrapped just for the hospital party. “We try to make one week in the year special, so that the kids can get gifts that their family couldn’t otherwise afford,” said Ann Petru, a pediatrician who has attended every year.
The presents tend to heap up in advance, though, taking up space. In addition, the donated gifts have always been a challenge for the staff at the Pediatric HIV/Aids program for children. Every year they worked between patient visits to match the donated gifts to the right child, before hand-wrapping them. “The donations tended to be toys for younger kids but a lot of our kids are not that young,” said Peggy Macy, a social worker who has spent 19 years working with children who live with HIV/Aids in Alameda County.
There have been other challenges, too. “Some people will buy a two dollar plastic toy, while someone else will send a Walkman,” Petru said. “If you give one kid an expensive gift and another something different, it creates jealousy. Mixing and matching has always been a challenge.”
So when the Center for Infectious Disease moved to a new floor in the hospital this year, creating a shortage of space in which to store the presents that traditionally heap up in advance, the staff at the Pediatric Aids/HIV Program decided to ask for cash donations instead.
Money seemed a fairer alternative. “Giving money allows the parents to be Santa, which also gives them more of a role and more control and power over how they want to spend the money,” Macy said.
But the plan seems to have backfired. If things don’t turn around fast, the party this year will have almost no presents to offer at all.
“Usually we’d have hundreds of gifts promised to be delivered just before the party,” Petru wrote in an email to close friends this week, exactly one month before the party. “Instead, we’ve only received a single $15 gift card from one sporting goods store and four tickets to a movie theater. Our hope was to have about $5,000, to give $50 to each of about 100 families. We have almost nothing to give them now.”
Petru and Macy think part of the problem is the present economic climate, but they think there could be other reasons too. Macy said they have typically looked for companies willing to make in-kind donations who are not as likely to have cash donations available. People also enjoy purchasing toys and presents for children, Petru said, and would rather buy something than just give money.
The team has applied for two grants to cover the costs of gifts this year, but has not heard back from either. The lack of funding for gifts is also reflected in the program more generally. The program received funding from the Ryan White CARE Act, the AIDS Education and Training Center and insurers, but a recent note from Petru states, “we have lost our cushion and now face a major crisis in which we have been forced to let go of some of our most dedicated and essential staff and possibly more, if we don’t find other sources of income.”
The Pediatric HIV/Aids Program has looked after 780 children over the years, and usually sees patients once every three months from birth until they move into adult care. In Oakland the development of anti-retroviral treatment for HIV has changed the lives of patients living with HIV, but the holiday party tradition has remained.
“In the old days – people would assume they would bury their children before they become adults and they often did,” Macy said. “Now they disclose [their illness] even less then they did before, in a way, because they don’t have to.”
For Macy and Petru it is the stigma and silence around HIV that makes the holiday party so important.
“A lot of these families are isolated over the HIV issue,” Petru said. “People in their church don’t know, or their family or their school, or their neighborhood because of the stigma around HIV. If you have leukemia you go through chemo, and you lose you hair and people know. But for parents of a kid with HIV, you don’t want your kid to be teased at school so you don’t tell anyone.”
The party is one of the few occasions when the children can be open about their illness. “People who’ve outed their children have often regretted it afterwards,” Macy said. “People are wary about making that decision on behalf of their child.”
A large number of patients with HIV are also living in poverty, with 80 percent of the families eligible for public aid including MediCal.
“Partly then, giving gifts is just because of the sheer need,” Macy said. But it also is a way of acknowledging that this is a hard thing, and people who don’t know you recognize that. It fights that feeling of being rejected or stigmatized by society.”
If you would like to donate money to the Pediatric HIV/Aids Program’s Christmas gift appeal then make checks payable to Pediatric HIV/Aids Program and send them to Ann Petru, Children’s Hospital & Research Center Oakland, 747 52nd Street, Oakland, CA 94609-1809
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