IRONDEQUOIT — Two quilts hang on the office wall of Catholic Charities Community Services’ AIDS Services, listing the agency’s clients’ first names and dates of death.
"When a client has passed away, during our staff meetings, we bring the quilt down, share who the client was and unique characteristics of that client," noted AIDS Services Director Tracy Boff.
When all the space on the first quilt was filled, a second quilt was added. Slowly, it, too, is filling up, despite new medicines that have added years to the lives of people with HIV, the virus that causes AIDS.
"Even with all the medications, we’ve probably lost about seven to eight clients in 2008," said Boff, whose organization is funded to serve clients from Monroe, Schuyler, Seneca, Steuben, Wayne and Yates counties.
A client must be HIV-positive to receive services from the agency and, for such services as intensive case management, the client also must have an income limited enough to qualify for Medicaid. Many of the intensive-case-management clients are homeless, drug addicted or struggling with other serious issues.
According to the Centers for Disease Control and Prevention, HIV is most commonly transmitted through sexual contact and intravenous drug use. Though AIDS was first identified in homosexual white men, the CDC notes that today the disease disproportionately infects blacks and Latinos, of whom many are heterosexual.
"The whole (HIV-positive) population looks completely different from when AIDS was (first) recognized," Boff observed.
According to CDC statistics, New York leads the nation with 5,495 AIDS cases reported in 2006 and a cumulative total of 177,262 AIDS cases reported through 2006.
CCCS staff members help their HIV/AIDS clients by accompanying them to doctor appointments and assisting them with such issues as domestic-violence, mental-health, substance abuse and inadequate housing. The agency’s services also include emergency grants for rent, mortgage payments, utilities or security deposits.
"(Some) clients come to us with so many needs and issues that HIV is actually the least of their concerns," Boff remarked.
Although the clients’ needs are many, Boff said CCCS has had to cut its staffing to the minimum and eliminate nonessential spending because Medicaid-reimbursement rates for case management have not increased in eight years.
The agency also taps into other funding sources, such as grants distributed by New York state’s AIDS Institute. CCCS uses a grant from the institute to fund its Families in Transition program, which offers support groups for women and men and social programs, art therapy and scrapbooking for children to help them deal with grief and loss.
Parents say these family programs are some of the most important services CCCS offers.
"When I first got diagnosed, (my children) were lost," said Annie, a CCCS client who asked that her last name not be used.
Annie said her children were helped immensely during the annual CCCS Camp SOAR. But due to funding cuts, Boff said, CCCS had to eliminate the camp four years ago. This year another organization that ran a similar camp also eliminated its program.
"That’s a big loss for the kids and for us, because we had gotten close to the other parents," said CCCS client Regina Walters of Rochester.
Walters and Annie said social supports are needed because an HIV diagnosis still carries a stigma. Walters said she hesitates to get close to her neighbors, for fear they will treat her differently if they learn she is HIV-positive. Annie said that as soon as HIV is mentioned, some people back away.
"It is still stigmatized, even though there is so much information about it, and everyone is living with it longer," Annie said.
Boff noted that some clients chose CCCS for services because the agency does not have AIDS in its name.
"I think we’ve come a long way, but we still have so many clients on our caseload where it’s still about secrets for them," she said.