AIDS Hospice to Close Down
Gary Miller leaned back on his bed, looking very tired. He had already packed his bags and now was waiting for a cab he really didn’t want to come.
“This is not what I had in mind for the last few days of my life,” he said Friday.
Miller, 59, was one of about 18 men and women who learned last week that they could not remain at the Carl Bean House, the last hospice and 24-hour nursing facility dedicated to AIDS patients in Los Angeles County.
It will close as soon as the last patient can be moved to another nursing home, regular hospice or family home.
Its operators, the AIDS Healthcare Foundation, said the county wasn’t providing enough money to keep it open. In fact, the closure caps several years of wrangling between the AIDS Healthcare Foundation and Los Angeles County officials over funding of Carl Bean. Last year, a county audit accused the foundation of overcharging the county $348,000 for care at the facility -- a charge the foundation has disputed. Another audit is pending.
“It’s very, very sad,” said foundation President Michael Weinstein of the closure. His organization, the largest national provider of HIV and AIDS medical services, began in the 1980s as a promoter of end-of-life care for AIDS patients.
In 1992, when the Carl Bean House was founded, it was a victory simply to open a new facility for people dying of AIDS. Named after Carl Bean, an openly gay black minister and founder of the Minority AIDS Project, it was intended to give patients comfort and care in their final days.
By then, other hospices were full, with long waiting lists.
As the years wore on, the 25-bed center in the West Adams district of Los Angeles proved well-placed, as HIV and AIDS increasingly took a toll on blacks and Latinos in the community.
In one sense, the closure is emblematic of advances in treatment of many AIDS patients, who are living longer and in better health.
“It’s an acknowledgment that the drugs that we have really have changed the way the disease works in people, and that’s a great thing,” said Dr. Thomas Coates, an AIDS expert at UCLA. “But on the other hand, for minority and poor people, it’s the same disease as it was 10 years ago.”
The care that Carl Bean offered, Coates said, is “exactly where it needs to be ... [for] the people who get the poorest care for HIV and AIDS.”
Though deaths from AIDS have declined overall, HIV and AIDS continue to disproportionately affect blacks and Latinos. Nationally, blacks accounted for 50% of the estimated 39,000 new HIV and AIDS cases in 2004 and Latinos made up 18%.
In Los Angeles County, blacks make up 20% of all AIDS cases recorded.
The foundation’s decision to close its hospice came last week, after the county Board of Supervisors cut the foundation’s funding for indigent patients by more than half. It offered the foundation $553,800 a year for AIDS patients not covered by Medi-Cal, Medicare or private insurance. Carl Bean has an annual budget of $3 million, and foundation officials said they needed at least $1.2 million from the county -- the same amount as last year -- to keep it open.
With fewer people dying of AIDS, the county needs less hospice services, said John Schunhoff, the county’s chief of operations for public health. At any given time in the last year, there were only three to five county-funded patients at Carl Bean, Schunhoff said.
“It’s a well-run facility, and I’m sorry to see that they are closing,” Schunhoff said. “But it’s a very expensive facility.... There are other alternatives at a lower cost,” such as referring patients to hospices or nursing homes that do not specialize in AIDS patients.
Schunhoff said Carl Bean would be given three months’ funding, to give it time to relocate its remaining patients.
The decision to close Carl Bean followed a long and bitter battle between county officials and foundation leaders. Only last week, county Supervisor Zev Yaroslavsky said at a board meeting that Carl Bean House is being used “almost as a hostage to get more funding out of the county than is really appropriate.”
While denying such allegations, Carl Bean’s operators agree that the need for AIDS hospice has declined. Indeed, the foundation closed two of its other hospices in the late 1990s. But the hospice operators said their 24-hour nursing services are still needed for severely ill patients, many of whom are more comfortable in a facility solely devoted to AIDS patients.
On Friday, William Lucas, 43, said he languished in a convalescent home for weeks while waiting for a bed at Carl Bean. He felt that some nursing home staffers feared caring for him because of his disease. By the time he was admitted in November, Lucas, who is 6 feet 3, weighed a mere 129 pounds, his viral load had soared and he was sick with cryptomeningitis, a fungal infection. Now, Lucas weighs 166 pounds; his viral load has sunk.
“Since being here, I’ve seen nothing but miracles,” Lucas said.
He was preparing Friday to move in with this godmother.
Dr. Ardis Moe, an AIDS physician at UCLA, said Carl Bean had a track record of successfully caring for AIDS patients with mental illness or drug abuse problems and helping them stick to the rigorous anti-HIV drug regimen.
It’s still difficult to find nursing homes that will accept AIDS patients, partly because of staff members’ fears, Moe said.
A free AIDS clinic housed at Carl Bean, which served 92 patients, will also have to close, said facility administrator Darlene Brown. Foundation officials can’t say if they would try to reopen the clinic elsewhere.
Other AIDS groups in Los Angeles County said Carl Bean was facing a reality they have confronted for years -- reduced government funding.
“When people were dying at the rate they were dying in the mid-90s, a hospice was something that was needed, desperately. But it’s just not the case today,” said Kevin Pickett, executive director of Palms Residential Care Facility in South Los Angeles, which provides housing for people with HIV.
“It’s an institution that’s outlived its time,” said Carrie Broadus, executive director of Women Alive, a South Los Angeles-based group that focuses on HIV-infected black women and Latinas. “In 2006, we’re striving to have people living with dignity.”
But Tony Wafford, a longtime AIDS activist in Los Angeles, worried about what the closure may signify. The facility was critical in raising awareness of AIDS in the black community.
“It’s criminal that you could even think about closing a facility that services people who need it most,” Wafford said.
Coates, the UCLA AIDS expert, expressed concern as well. “It could signal to the neighborhood that, ‘Oh, we don’t have to worry about HIV and AIDS anymore.’ And it would be unfortunate if that was the message that was left in the community.”
Miller, a white man with terminal AIDS-related cancer, had more personal concerns. He had wanted to die at Carl Bean, which he knew would offer him comfort and compassion.
His surgeon recently had told him his cancer was spreading.
Now, “I have no clue what it’s going to be like,” Miller said, referring to his placement in a nursing home. “I’ll be dead in a month.”