Living with HIV: Donna Jean Navarro, Oklahoma City,
OK
Photographs for this report were generously provided by The Faces of
AIDS, two projects that chronicle the lives of people living with HIV
disease in 11 Midwestern States and in New York City.
Part I. Successes and Challenges
Few new CARE Act financial resources
+
Growing HIV/AIDS prevalence
+
Rising costs of HEALTH CARE AND breakthrough drugs
=
Growing challenges IN THE FACE OF SUCCESS
HIV/AIDS
Successes + Challenges
- CDC study finds U.S. perinatal transmissions fall 80% in past decade
due to testing of pregnant women and use of ARV drugs (7/9/02)
- FDA approves buprenorphine, the first medication for opiate addiction
that can be prescribed in primary care setting (10/02)
- FDA approves convenient, easy-to-use OraQuick rapid HIV test (11/7/02)
- HHS extends availability of OraQuick rapid test to more than 100,000
sites nationwide (1/31/03)
- For first time since 1993, CDC reports increase in AIDS diagnoses
in the United States (2/12/03)
- President announces Emergency Plan for AIDS Relief, a 5-Year Global
HIV/AIDS Strategy (2/23/03)
- Six biggest ADAP programs meet with drug companies to seek lower
prices on AIDS drugs (2/28/03)
- FDA approves Fuzeon—first of a new class of treatments for
advanced HIV disease (3/13/03)
- New CDC Advancing HIV Prevention initiative to reduce new HIV infections
and the number of people not in care (4/17/03)
- Once-daily protease inhibitor Reyataz gets FDA approval for HIV infection
(6/20/03)
- HIV cases on rise in the United States. CDC reports first increase
in diagnoses since 1993—blacks, Hispanics, and MSM most affected;
number of newly diagnosed cases among MSM rises for third straight
year (7/28/03)
Pictured above, from left to right: Sanford Gaylord, Chicago, IL; Debbie Mata, Chicago, IL; Jimaya, Iowa City, IA; Boog, rural Kansas
The Ryan White CARE Act
The RYAN WHITE COMPREHENSIVE AIDS RESOURCES EMERGENCY (CARE) Act authorizes
HIV/AIDS services for people with nowhere else to turn. First signed
into law in 1990, and reauthorized in 1996 and again in 2000, the legislation
created a set of diverse programs, described in PART IV of this report.
The focus of the CARE Act is to provide primary care, treatmenT, and
essential support services to people living with HIV/AIDS. The services
are delivered by organizations across the country THAT receive CARE Act
funds—primarily through grants. Each year, they reach about 533,000
underserved people, more than half of all those estimated to be living
with HIV/AIDS in the United States.
Much about HIV/AIDS has improved in the United States. Perinatal transmission
of HIV has fallen precipitously. AIDS mortality continues its decline.
The quality of life and productivity of many people living with HIV/AIDShas
never been higher.
The greatest success of the Ryan White CARE Act is that it has extended
these benefits to hundreds of thousands of people who otherwise would
have gone unserved.
The CARE Act community’s greatest challenge in 2004 and beyond
is to continue to reach people who have nowhere else to turn in an age
of increasing HIV/AIDS prevalence, ever-increasing health care costs,
and a growing burden of HIV among the uninsured and underserved.
- Combination ARV therapy increases risk of heart attack, study finds
(11/22/03)
- Abbott raises price of longtime HIV drug Norvir 400%, spurring debate
over domestic pricing policies (12/19/03)
- International Association of Physicians in AIDSCare publication indicates
that 300,000 people in the United States are HIV/HCV
coinfected
(1/04)
- Overall health care spending up 9.3% in 2002—the largest increase
in 11 years—to $1.55 trillion; prescription drugs account for
much of increase
(1/04)
- 15 State ADAPs have waiting lists, access restrictions, NASTAD reports
(1/27/04)
- Although single dose of Nevirapine at labor and delivery helps prevent
vertical transmission of HIV, the mother may develop drug resistance,
study finds
(2/10/04)
- AIDS hitting young black men in college; increase in HIV infection
feared across the South
(2/11/04)
- Many new HIV infections acquired heterosexually, CDC says
(2/20/04)
- Protein in monkeys may block HIV infection; finding may help development
of HIV prevention strategies in humans
(2/25/04)
- HIV vaccine not likely in next decade, UNAIDS executive director
says; human clinical trials for HIV vaccine begin at UMass
(3/24/04)
- FDA approves OraQuick rapid test for detection of HIV-1 and HIV-2
antibodies
(3/25/04)
- The number of HIV-positive people is rising faster in the South than
in any other region of the United States, study finds (3/29/04)
Pictured above, from left to right: Joy and Dante Sandler, Waterloo, IA; Modesto "Tico" Valle, Chicago, IL; Raven and Michelle Lopez, New York, NY; Martín Gonzales Rojas, Chicago, IL
Successes
More than 2,700 care Act–funded providers reach over half-million
people every year.
care act clients reflect the demographics of the aids epidemic.
providers are reaching people who are poor and who have inadequate health
insurance.
care act resources are being used for primary care and treatment.
funds are awarded through a competitive process that ensures money is
being invested where it can do the most good.
care act providers are building networks with other public and private
providers to build a comprehensive response to the epidemic.
Challenges
the capacity of providers working in underserved communities must be
increased.
providers must adapt to an environment of few new resources, rising
costs, and growing hiv/aids prevalence.
the care act community must ensure access to medication at the lowest
possible price.
care act providers must continue to prioritize funding of primary care
services.
care providers must continue to increase their focus on measurable outcomes,
evaluation, and productivity.
the care act community must work to ensure that the care act is always
the payer of last resort.
Thousands of diverse organizations and individuals collaborate to implement
the Nation’s CARE Act programs. Their ability to adapt to an environment
of growing pressure will do much to determine whether the country is
able to serve underinsured and underserved people living with HIV disease
who need care in the future.
Enhancements in treatment, like once-daily dosing, are going to break
down barriers to extremely demanding—and sometimes debilitating—antiretroviral
regimens. Innovations like rapid testing, increased CARE Act emphasis
on outreach to the 400,000 to 500,000 HIV-positive people not in care,
and the Centers for Disease Control and Prevention (CDC)Advancing HIV
Prevention: New Strategies for a Changing Epidemic initiative are going
to successfully reach people living with HIV disease. Unless the economic
profile of communities disproportionately affected by HIV disease changes
dramatically—and there is no indication that it will—many
people reached are not going to have private health insurance or personal
resources to pay for care. Many will be ineligible for Medicaid. Who
is going to take care of them?
This is not a new question—and in many ways it is the very question
that led to the CARE Act in the first place. But needs today are in many
ways very different from in 1990, when the CARE Act was first signed
into law. We now have antiretroviral therapy. Hospital care is required
for fewer and fewer people. But as inpatient costs continue to fall,
outpatient costs continue to rise—and rise dramatically. And with
more people living with HIV disease in the United States than ever before,
and with few new public resources available to care for them, many CARE
Act–funded providers and programs face a set of real-world circumstances
that pose serious challenges to people seeking care—and for people
seeking to provide it.
Yet the glass is half full. The CARE Act community—and the entire
HIV prevention and care system in the United States—has never had
more to offer. And we have the capacity to adapt to new realities. We
are able to apply rigorous principles to managing resources. We can ensure
that we operate as efficiently and productively as possible. And we can
redouble our commitment to investing resources where they can do the
most good.
Connecting with populations in underserved communities
AIDS incidence and mortality have fallen among underinsured people because
CARE Act–funded providers are very good at reaching populations historically
underserved by the larger health care system, such as racial and ethnic
minorities, who constituted about 65 percent of CARE Act clients in 2002.
CARE Act–funded providers are also very good at responding to the
changing demographics of AIDS. For example, about one-third of all clients
are now women. Almost one-third are 45 or older. And providers are redoubling
efforts to reach young people, a population that is among the most underserved
in America and that continues to experience extremely high HIV incidence
in some communities.
Like most CARE Act successes, client reflectiveness of the epidemic hasn’t
happened because of the actions of a single group or single program. It
has happened because of locally conducted, science-based needs assessments.
It has happened because of innovative outreach programs. And, critically,
it has happened because of the work of organizations such as communities
of faith, public health departments, social services organizations, and
substance abuse treatment centers.
The CARE Act community knows organizations like these as “key points
of entry” into the medical system. They provide critical services
to populations that are often both hard to reach and at risk for HIV disease.
By building linkages with those organizations, CARE Act providers reach
affected populations, sometimes long before the changing demographics of
the epidemic are reflected in public data.
Reaching those most in need
The “E” in CARE Act stands for “emergency.” It’s
the word on which the entire CARE Act initiative pivots.
CARE Act clients come from big cities and small towns, suburban communities
and the rural heartland. And wherever they live, they face a common problem:
They simply cannot afford essential HIV/AIDS care and support services.
When the epidemic emerged, communities were not prepared for a disease
like AIDS. No one had ever imagined a disease like it—and there were
simply no resources to respond to the emergency created by debilitating
illness and its economic results: loss of employment, loss of health insurance,
and loss of the capacity to meet even basic subsistence needs like food
and housing.
The scenario is quite different today, but the word “emergency” still
applies. With treatment, many people are able to work and support themselves
and their families. But infection rates have climbed among people who were
at disproportionate risk for poverty before becoming infected. It is a
fact reflected in the demographics of CARE Act clients. In 2002
- at least one of every two lived below the Federal Poverty Level
- fewer than 1 in 10 had any private health insurance; and
- only 27.9 percent were enrolled in Medicaid.
CARE Act program success in ensuring that breakthroughs in treatment reach
the underserved is due in large part to the capacity to reach people whom
many providers in America’s health care system do not serve.
Jackie Thompson, Chicago, IL
CARE Act clients
CARE Act clients are “underserved” and “un/underinsured.” (see
charts, page 17.) but those words belie the resiliency and courage of people
who often overcome incredible odds to counter the physical and social effects
of HIV/AIDS.
CARE Act clients are involved in their own care. Many play active roles in
service planning at the State, community, and provider levels. Many are leaders
in research,
advocacy, and service delivery. And many, like those whose pictures fill
the pages of this report, have much to teach us about HIV/AIDS.
Like Mary Swinton from Wichita, Kansas, who says, “the same thing can happen
to any other woman in my church.”
Or like Dave Bergquist, who lives in Sturgeon Lake, Minnesota. “Around
here,” he says, “they think it can’t exist because there are
no gay people. That makes them ill-informed on two counts. I know three people
within 10 miles of me who have HIV. One is straight, one is a little girl, and
one is a gay man.”
Expanding service capacity in underserved communities
CARE Act providers increasingly reflect the underserved communities they
exist to serve. In more than 1 in 3 CARE Act–
funded providers, a majority of professional staff members are racial and
ethnic minorities.
Through capacity building and planning grants, the CARE Act expands service
delivery capacity in historically underserved, often minority communities.
In 2002, for example, 60 planning grants and 59 capacity-building grants
helped providers prepare to provide services where, in many cases, no other
providers existed.
We can’t address AIDS without health care. And we can’t provide
health care without providers in communities that need it. Continuing to invest
service resources in under-resourced communities is a must if we are to reach
those not in care.
Doing more with less - and always making the CARE Act the payer of last resort
Doing more with less is a familiar concept to CARE Act–funded organizations.
Most are either public agencies or nonprofits well accustomed to fluctuations
in charitable giving and public and private funding. They understand that
the Nation is facing new challenges. And they realize that they must work
harder than ever to make sure that the CARE Act is always the payer of last
resort.
Individuals outside the CARE Act community sometimes believe that CARE
Act programs are entitlements like Social Security and Medicare. Unlike
those programs, however, which guarantee certain benefits to individuals
who meet eligibility requirements, CARE Act funding is discretionary.
This is a critical distinction, and it means that resources are not unlimited.
To ensure that CARE Act resources are there when needed, it is essential
that they be used only to serve people who have nowhere else to turn.
Antonio Hernandez, New York, NY (deceased)
Vigilance in a time of distraction
Responding to AIDS is about more than responding to an infectious disease.
It is about dealing with the perception that antiretroviral therapy has stopped
AIDS. And it is about dealing with poor access to health information and health
care—both of which have fueled the epidemic since its inception.
The CARE Act community must remain vigilant in its efforts to stem the effects
of HIV/AIDS at a time when the epidemic seems to take up a smaller place in the
American consciousness. Findings from a 1987 Gallup poll indicated that 68 percent
of Americans believed HIV/AIDS was the nation’s moSt urgent health problem,
a number that had fallen to just 17 percent in 2002, according to a follow-up
study. The number of news stories on domestic AIDS has also declined over the
period, and organizations relying on volunteers and private donations report
drops in giving.1
Prioritizing delivery of primary care
More than two-thirds of all CARE Act funds were used for primary care and
treatment in 2002. Almost 3 times more clients used primary care than used
the most often used support service. (See charts, pages 14, 20, and 21.)
Access to some support services is associated with increased utilization of
primary care, and those services must continue to be funded where essential.
But primary care and treatment dollars harness the power of today’s
science from the laboratory into the lives of people the CARE Act was created
to serve. Without these funds, reductions in perinatal transmission and AIDS mortality
could never have been achieved. Nor could we address the health issues faced
by an aging HIV- positive population.
Continuing prioritization of primary care is about more than allocating as
many CARE Act resources as possible to providing care and treatment. With
growing treatment costs, the aging of the HIV-positive population, and growing
HIV prevalence, CARE Act providers can never meet total need for primary care
services—and they were never intended to.
Building a growing coalition
CARE Act providers use case managers, counselors, and advocates to link HIV-positive
individuals to non–CARE Act programs for essential services. For example,
eligible individuals are referred to Medicaid, which frees CARE Act resources
to assist those who are not Medicaid eligible. (27.9 percent of clients were
enrolled in Medicaid at the end of 2002.) Providers also link clients to charitable
and publicly supported organizations, such as departments of health and federally
funded community and migrant health centers.
Yet, too often, CARE Act–funded providers are called on to deliver
care that could be—and should be—provided by others in the community.
Only by building a broader coalition of organizations that address HIV/AIDS
in local communities can the Nation reach everyone not in care and ensure
the availability of CARE Act–funded services in cases where there are
no other options.
Identifying existing infections and preventing new ones through care
True primary care includes a disease prevention component. Lack of access
to such care represents a lost opportunity to prevent all kinds of diseases
and adverse conditions. And it is one reason that millions of people living
with a range of diseases—and hundreds of thousands of HIV-positive individuals—have
never been diagnosed. By directing as many CARE Act and non–CARE
Act resources as possible to primary care, the United States can reduce the
number of undiagnosed HIV infections, reduce the number of HIV-positive people
not in care, and reduce new HIV infections.
People unaware and unsuspecting of their serostatus are less likely to incorporate
prevention behaviors into their lifestyles than are those who have been diagnosed
and are in care. Innovative programs and new tools like rapid testing offer
real potential for reaching even larger numbers of people previously unaware
of their serostatus. Linking newly diagnosed people with care and then helping
them adopt preventive behaviors represent major opportunities for stemming
the tide of AIDS in the United States.
Kenny Bell, St. Louis, MO
Responding To An International Crisis
The Nation’s commitment to addressing AIDS in resource-constrained settings
is reflected in the President’s Emergency Plan for AIDS Relief. through
this ambitious plan, the United States is providing much-needed support in
the 15 African, Caribbean, and southeast asian nations most affected by hiv/aids.
the health resources and services administration (HRSA) is responsible for
implementing the CARE Act, the largest U.S. program specifically for people
living with HIV/AIDS. It also is playing a crucial role in implementing the
President’s Emergency Plan. The HRSA approach has four components: care
and treatment; education, training, and human-capacity building; technical
assistance; and fostering of partnerships. Through activities in each area,
the agency brings expertise and assistance to settings that face enormous challenges.
Expanding access to treatments at the best price
The CARE Act community scored a critical victory in 2003 by ensuring access
to the drug Norvir at a price almost four times lower than on the open market.
Agreements like this one, and cost-cutting mechanisms at State AIDS Drug Assistance
Programs (ADAPs) (see page 36), and discount programs provide access to medications
for many who could not afford even one month of antiretroviral therapy. Providing
access to appropriate treatment is the whole point of patient-centered primary
care. CARE Act grantees must continue to work to get the best possible price
for medications.
Being accountable
In recent years the CARE Act community has made great strides in focusing
on quantifiable, measurable outcomes data. All programs have strong evaluation
components and are working to increase their capacity to measure success.
CARE Act providers exist to serve clients, but they could not achieve their mission
without Federal support. By focusing on core primary care and essential support
services, and by providing clear, concise outcomes data, providers in the
CARE Act community become better stewards of the resources entrusted to them
every year. And by becoming better stewards, CARE Act providers increase their
productivity and their ability to reach those still not receiving appropriate
care.
Rising health care costs, limited resources, and many other problems facing
the CARE Act community are not new. But they must be approached with a renewed
sense of mission. The health and quality of life of hundreds of thousands
of people living with HIV disease depend on how well today’s challenges
are met.