The drug regimen that has changed AIDS from a death sentence to a chronic disease
for many New Yorkers requires patients to follow a complicated daily routine,
which they do at a far higher rate than patients with other diagnoses comply
with their medical instructions. AIDS and HIV patients do what they are supposed
to 70 percent of the time, while other patients do so only about half the time.
Unfortunately, to be effective, HIV treatment regimens require 95 percent compliance,
a level nearly impossible to maintain without a clear mind, stable housing,
adequate food and cooking facilities, and consistent coverage for medical care
That is why AIDS activists see social and support services as a crucial factor
in the health of people with AIDS, and why they so bitterly criticize Mayor
Michael Bloomberg for his proposals to change Local Law 49, which governs the
city agency known as the HIV/AIDS Services Administration.
WHO USES THE CITYS HIV/AIDS SUPPORT SERVICES?
The citys HIV/AIDS Services Administrations 31,000 primary caseload
includes the majority of New Yorkers with AIDS, plus a small number of those
with HIV infection only. Over 14,000 family members of people diagnosed with
HIV/AIDS also receive certain HIV/AIDS Services Administration services: counseling
on daily living skills, housingif they live with the HIV-positive person
and if their relative dies, bereavement counseling and help in finding
Not all people with AIDS need HIV/AIDS Services Administrations help.
With therapeutic drugs, some are able to continue working, maintaining insurance
that covers their treatment, including medication. Others receive long-term
disability payments through private insurance provided by former employers.
However, all but the wealthiest people with AIDS face the possibility that they
may eventually become too sick to work, and/or outlive their savings or other
AIDS is most prevalent among people who are already poor, but it also makes
middle-class people poor. It forces them to cut back on work or quit their jobs,
pay extraordinarily high bills for prescription drugswhich are rarely
completely covered by health insuranceand cope with unpredictable symptoms.
The diagnosis alone creates emotional turmoil, sometimes requiring mental health
treatment. Newly-diagnosed parents must decide whether or not to tell their
children, who should care for the children if a parent dies, and how to juggle
medical appointments, child care, and financial commitments.
A 1997 study by the national Centers for Disease Control found that people
receiving care for HIV-related disease were twice as likely as others to be
unemployed, to have household incomes below $25,000 per year, and to have either
public insurance, such as Medicaid, or no health insurance at all. For low-income
HIV-positive New Yorkers, government benefits (not necessarily health care)
can be the most crucial life support system.
BLOOMBERGS PROPOSALS TARGET HIV/AIDS OFFICE AND SERVICES
Mayor Bloomberg has announced his intention to seek unspecified changes in
Local Law 49, so that the city can provide more help for women and more job
training for clients wanting to return to work. However, changing the law could
also remove legal limits to the number of clients per caseworker, and to how
long the administration can take to deliver benefits. Opponents of this proposal
believe that the mayors real goal is to weaken the law, so that his proposed
budget actions would no longer violate it.
Under the mayors executive budget for Fiscal 2004, 29 HIV/AIDS Services
Administration case manager positions would be eliminated, case management services
for all clients would be privatized, and city funds for HIV-prevention services
for communities of color would be eliminated, Under the more drastic doomsday
scenario, each contractor providing supportive housing for people with HIV/AIDS
would take a 10 percent funding cut, affecting 4,000 residents with HIV/AIDS.
Also, the city would eliminate all government benefits case management, public
and private, for people with HIV/AIDS.
AIDS activists are vigorously protesting these policies. People are disappointed
that we have to do the same thing we were doing with Giuliani, said Terri
Smith-Caronia of Housing Works, an AIDS service and advocacy organization. At
least Giuliani came out and said I hate poor people, I hate the disabled.
Bloomberg is far more disingenuous, more dangerous.
The executive budget also proposes that the Mayors Office of AIDS Policy
Coordination be folded into the health department.
The implications are huge, explained Smith-Caronia. Having
this office affirms to the world that this city has a commitment to develop
a coordinated policy on AIDS. The Mayors Office is a hairs breadth
above all the other agencies that deal with AIDS, so it can make sure the city
doesnt waste federal dollars on duplicating services across departments.
THE NEED FOR MORE COORDINATION IN THE HIV/AIDS SERVICE SYSTEM
In February 2003, the Center for an Urban Future released a critique of the
New York City HIV/AIDS service system, in which author
Julie Hantman detailed how the lack of coordinated, objective planning has produced
a glut of some social support services and a shortage of others, with a disproportionate
share of nonprofit services being located in Manhattan. Of the 250-odd nonprofit
organizations providing one or more HIV/AIDS-related services, only 15 offer
a full selection at a single site. The rest advocate for one-stop shopping
for public benefits at the HIV/AIDS Services Administration, but are themselves
fragments in a labyrinth of community-based social services. It is just as difficult
for a person with nausea, fever, and dementia to travel between multiple nonprofit
agencies for mental health care, case management, substance abuse treatment,
and food pantry bundles, as it is for them to travel between HRA offices to
coordinate welfare benefits, Medicaid, and food stamps.
The term case management can refer to coordination of different
kinds of services. Medical case managers coordinate health care services. Case
managers at community-based organizations coordinate services ranging from housing
and food to substance abuse and mental health treatment. For consumers who are
poor enough, the HIV/AIDS Services Administrations staff performs government
benefits case management, coordinating public assistance, Social Security Disability
benefits, Supplemental Security Income, Medicaid, food stamps, and emergency
food and housing assistance.
AIDS activists are critical of the citys use of federal housing funds
to pay the salaries of HIV/AIDS Services Administration employees. This
is $50 million that was meant to be used to build housing for people with AIDS,
says Jennifer Flynn of the New York City AIDS Housing Network. However, she
does not support privatizing or eliminating HIV/AIDS Services Administration
case management in order to free up federal funds for AIDS housing. According
to Flynn, the administrations case managers are unique, in that as city
workers, they are authorized to decide whether applicants are eligible for government
benefits and to issue checks, food stamp cards, and other concrete benefits.
State law requires that it be a state or local district employee that
decides eligibility, she points out, noting that this function could not
be performed by private agency employees, but would revert to regular welfare
eligibility workers. Those workers lack expertise in AIDS issues, and carry
far higher caseloads than the maximum of 34 allowed under Local Law 49 for HIV/AIDS
Services Administration caseworkers.
THE MEDICAL IMPACT OF UNMET SOCIAL NEEDS
A diagnosis of symptomatic HIV illness or AIDS entitles HIV/AIDS Services Administration
consumers to individualized service planning, financial counseling, support
counseling, referrals to private service providers, and child custody planning.
Staff can make home and hospital visits, and are mandated to try to find consumers
who have dropped out of services -- although the administration does not claim
to continue searching for them for the full 90 days required under Local Law
49. In theory, applicants with sufficient income are charged program fees and/or
part of their rent.
The majority of people with AIDS in New York City rely on the HIV/AIDS Services
Administration for financial assistance with their housing costs, often in the
form of rent subsidies. The administration receives about 100 requests a day
for emergency housing placement. This reflects the findings of a survey by New
York Citys HIV Planning Council, in which more than half of HIV-positive
people surveyed named housing as their major need.
Researchers interviewed patients at a Bronx HIV Clinic about factors influencing
compliance with antiretroviral treatment. In January 2003, Jane Simoni, lead
investigator, noted that the most common reasons given for not taking medications
were forgetting to do so and negative side effects. Depression and social isolation
also made it less likely that patients would comply with treatment regimens.
At least 27 percent of New Yorkers diagnosed with HIV/AIDS as of March 2003
were intravenous drug users. A national study of HIV-positive patients found
that over a 6-month period in 1996, over 60 percent used substance abuse treatment
or mental health services. But there is a shortage of affordable mental health
services and substance abuse treatment for New Yorkers who are HIV-positive,
especially for those who need both.
Bloomberg has not announced any changes in his proposed cuts to HIV/AIDS services
since the state legislature took action to pass a state budget more favorable
to New York City than the governors version. On April 30, protestors marched
across the Brooklyn Bridge to demonstrate opposition to the HIV/AIDS cuts. Activists
were arrested following a demonstration on May 8 just outside the mayors
bullpen office on the second floor of City Hall , and additional
civil disobedience is planned.
Linda Ostreicher, a former budget analyst for the New York City Council, is a freelance writer and consultant to nonprofits. She is currently on the staff of Bronx Independent Living Services.
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