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HIV Screening and Access to Care:
Exploring the Impact of Policies on
Access to and Provision of HIV Care
The Institute of Medicine (IOM), in response to a request from the
White House Office of National AIDS Policy (ONAP), convened a com-
mittee in 2009 to plan and conduct a series of three workshops and data
gathering activities to evaluate barriers to expanded HIV testing and treat-
ment programs. The committee’s first report focused on the extent to which
federal and state laws and policies, private health insurance policies, and
other factors inhibit or promote expanded HIV testing (IOM, 2010). This
second report prepared by the committee examines how federal and state
laws and policies and private health insurance policies and practices affect
entry into clinical care and the provision of continuous and sustained care
for people with HIV. The committee’s forthcoming third report will exam-
ine the current capacity of the health care system to administer a greater
number of HIV tests and to accommodate new HIV diagnoses (see Box 1).
As part of its charge for this report, the Committee was asked to con-
sider the following specific questions:
· ow can federal and state agencies provide more integrated HIV
H
care services?
· hat policies promote/inhibit clinical care services among agencies
W
at the federal level, at the state level, or between state and federal
agencies?
· hat are federal and state agency policies in funding HIV medica-
W
tion adherence programs? What HIV medication adherence pro-
grams work?
1
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2 HIV SCREENING AND ACCESS TO CARE
BOX 1
Statement of Task
1. What is the extent to which federal, state, and private health insurance poli�
cies pose a barrier to expanded HIV testing? Issues for the committee to consider
include
a. What are the current federal and state laws, private health coverage poli�
poli�
cies, or other policies that impede HIV testing?
b. What effective HIV testing methods and/or policies should be implemented
by federal, state, or local agencies, federal programs, or private insurance
companies that can be used to reach populations with a high HIV preva�
lence and/or high prevalence of undiagnosed HIV infection?
c. What has been the impact of opt�out HIV testing?
2. What federal and state policies and private insurance policies/practices
(such as pharmaceutical coverage limits) inhibit entry into clinical care for
individuals who test HIV-positive or inhibit the provision of continuous and
sustained clinical care for HIV-positive persons? Issues for the committee
to consider include
a. How can federal and state agencies provide more integrated HIV care
services?
b. What policies promote/inhibit clinical care services among agencies at the
federal level, at the state level, or between state and federal agencies?
c. What are federal and state agency policies in funding HIV medication
adherence programs? What HIV medication adherence programs work?
d. Will insurance companies and other payors pay for the treatment of an HIV�
infected person who tests positive in this theoretical new, expanded testing
program, but whose CD4+ T cell count and/or viral load does not fall within
the “official guidelines” of starting antiretroviral therapies?
e. What can be done to promote access to HIV treatment for HIV�positive
individuals with CD4+T cell counts greater than “official guidelines”?
3. What is the current capacity of the health care system to administer a greater
number of HIV tests and to accommodate new HIV diagnoses? Issues for the
committee to consider include system, workforce, and private sector issues:
a. Where do HIV�positive patients currently get care?
b. What is the HIV�related training or experience of most HIV care providers
(medical doctor, nurse practitioner, physician’s assistant, registered nurse)?
c. What manpower or training/experience improvements are needed to absorb
more newly diagnosed HIV�positives from expanded HIV testing services?
d. Is the age profile of providers compatible with sustainability of the HIV care
delivery system? That is, are younger clinicians and/or students receiving
adequate training/experience to meet future needs?
e. What are the impediments to professionals entering into, or continuing to
provide, AIDS care?
f. What policies inhibit or enhance the movement of health care professionals
into HIV/AIDS specialties?
g. Are there adequate financial or professional incentives to promote HIV/
AIDS as a specialty among the health care professions?
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3
EXPLORING THE IMPACT OF POLICIES ON HIV CARE
· ill insurance companies and other payors pay for the treatment
W
of an HIV-infected person who tests positive for HIV, but whose
CD4+ T cell count and/or viral load does not fall within the “offi-
cial guidelines” of starting antiretroviral therapies?
· hat can be done to promote access to HIV treatment for HIV-
W
positive individuals with CD4+T cell counts greater than “official
guidelines”?
The 15-member Committee on HIV Screening and Access to Care is
composed of experts in the areas of HIV testing and care policy, HIV/AIDS
ethics, epidemiology and biostatistics, HIV/AIDS clinical care, HIV/AIDS
care services research, HIV care financing, state HIV/AIDS service program-
ming and implementation, and the behavioral sciences (see Appendix A).
The committee held its second public workshop, to explore the second part
of its study charge, June 21–22, 2010, in Washington, DC. Invited experts
discussed barriers and facilitators to HIV/AIDS care during the following
five workshop sessions: (1) overview of clinical care and social service needs
of persons with HIV/AIDS; (2) entry into and sustained HIV/AIDS care: the
role of federal and state and private health insurance policies; (3) payment
for treatment of earlier stage HIV infection; (4) the role of federal and state
agencies in supporting integrated HIV care services; and (5) the impact of
housing, mental health, and immigration policies on HIV/AIDS care access
and retention (see agenda and biographical sketches of invited experts in
Appendixes B and C, respectively).
REPORT ORGANIZATION
This report is structured in response to the committee’s charge and
includes a review of the evidence, where available, from policy documents
and the research literature on federal, state, and private health insurance
policies as potential barriers or facilitators to improved access to HIV/
AIDS care. The committee addresses the question of how federal and state
agencies can provide more integrated HIV care services (question 2a) fol-
lowing what it felt was the broader question about policies that promote or
inhibit clinical care services among agencies at the federal level, state level,
or between state and federal agencies (question 2b).
The committee has attempted to provide evidence supporting the
assertions made by workshop speakers, but in some instances there is no
research addressing these issues. Testimony provided by workshop speak-
ers should be interpreted as opinion by knowledgeable individuals, unless
supported by relevant studies.
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4 HIV SCREENING AND ACCESS TO CARE
BACKGROUND
HIV infection has been transformed from an unvaryingly fatal disease
into a chronic disease. In high-income countries, survival for persons with
HIV has improved in part due to improvements in therapy. For instance, the
average survival time after HIV diagnosis based on surveillance data from
25 U.S. states increased from 10.5 years to 22.5 years from 1996 to 2005
(Harrison et al., 2010).1 Among HIV-positive persons on antiretroviral
therapy (ART) in high-income countries, there have been notable declines
in mortality rates and potential years of life lost between 1996–1999 and
2003–2005 (see Table 1) (Antiretroviral Therapy Cohort Collaboration,
2008).
In many settings, the success of antiretroviral therapy in significantly
decreasing morbidity and mortality has been possible because of the pro-
vision of a comprehensive set of services to meet the particular needs of
persons with HIV disease. The care of HIV-infected patients is complex,
and subgroups of this population disproportionately face tremendous psy-
chosocial problems, substance abuse, comorbid medical conditions, and
poverty. Merrill Singer, University of Connecticut, defined a construct that
he referred to as syndemics or “the concentration and deleterious interac-
tion of two or more diseases or other health conditions in a population
especially as a consequence of social conditions that promote disease clus-
tering.” Singer emphasized the need to consider HIV/AIDS in the context
of other diseases, mental health issues, social structures and environments,
housing, and immigration status, especially for the disadvantaged and
marginalized populations disproportionately affected by HIV/AIDS. A com-
prehensive, multidisciplinary approach to HIV/AIDS services is needed due
to the complexity of issues implicated in the health of individuals with
HIV/AIDS. Despite the improvements in health for people with HIV who
are in care and on treatment, many people with HIV in the United States
enter medical care with advanced disease, have inconsistent adherence, or
discontinue therapy prematurely (Losina et al., 2010). Singer noted the
importance of using a syndemics approach to find hidden populations of
people with health and social burdens implicated in increased vulnerabil-
ity for HIV, to help facilitate linkage to and retention in care, and to help
reduce health disparities.
There is a lack of reliable, recent estimates of how many individuals
who have been diagnosed with HIV/AIDS are receiving care (e.g., have a
medical provider, are on antiretroviral therapy, or are receiving psychoso-
cial and support services). One recent study that involved meta-analyses
1 Despite improvement in survival overall, disparities in survival time after HIV diagnosis
persist. Estimated survival time after diagnosis for black males, for example, is about 20 years,
compared with 26 years for white males (Harrison et al., 2010).
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5
EXPLORING THE IMPACT OF POLICIES ON HIV CARE
TABLE 1 Health Indicators for Overall (20 years or older) Population by
Period of Follow Up
Period of therapy
initiation 1996–1999 2000–2002 2003–2005
Mortality rates (per
1,000 person-years)
Overall 16.3 (14.9-17.8) 12.4 (11.5-13.2) 10 (9.3-10.8)
Between the ages of 13.1 (11.7-14.7) 10.3 (9.4-11.2) 7.5 (6.8-8.3)
20 and 44 years
Potential years of life lost
before age 65 (per 1,000
person years)
20-64 years 365.9 260.4 189.4
Life expectancy (years;
adjusted)
At exact age 20 years 36.1 (SE 0.60) 41.2 (SE 0.52) 49.4 (SE 0.54)
At exact age 35 years 25 (SE 0.42) 30.1 (SE 0.31) 37.3 (SE 0.37)
Percent surviving 75.5% 79.5% 85.7%
from 20 to 44 years
SOURCE: Adapted from Antiretroviral Therapy Cohort Collaboration, 2008.
of 28 studies involving 53,323 individuals looked at entry into care and
retention in care (having multiple HIV medical visits) among individuals in
the United States who were diagnosed with HIV. According to the study,
69 percent of those diagnosed with HIV entered HIV medical care averaged
across the time intervals in the studies. Seventy-two percent had entered
care within 4 months of diagnosis. With regard to retention in care, 59 per-
cent had multiple HIV medical care visits during intervals from 6 months
to 5 years (Marks et al., 2010). Another study found that, in 2003, only 55
percent of HIV-infected persons age 15 to 49 in the United States who were
eligible to receive ART were in fact receiving ART (Teshale et al., 2005).
In addition to assessing how many infected individuals do not enter
care, there is a need to consider the various points along the care con-
tinuum where individuals may fall out of care and the potential barriers
and facilitators to care linkage and retention. If the goals of expanded HIV
testing are to be met, it is important to ensure the availability of, and access
to, care and treatment, as well as the continuity of care for those already
linked in.
The focus of this report is policy-related barriers to entry into and sus-
tained clinical care for individuals with HIV. A 2005 IOM report identified
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6 HIV SCREENING AND ACCESS TO CARE
BOX 2
Barriers to HIV Care in 2005 Identified by the IOM’s Committee
on the Public Financing and Delivery of HIV Care
Current public financing strategies for HIV care have provided care to and ex�
tended the lives of many low�income individuals. However, significant disparities
remain in assuring access to the standard of care for HIV across geographic and
demographic populations.
The current federal–state partnership for financing HIV care is unresponsive to the
fact that HIV/AIDS is a national epidemic with consequences that spill across state
borders. State Medicaid programs that provide a significant proportion of cover�
age for HIV care are dependent upon widely varying resources and priorities that
produce an uneven and therefore ineffective approach to managing the epidemic.
Under the current patchwork of public programs that finance HIV care, many
HIV�infected individuals have no access or limited access to the standard of
care for HIV. Fragmentation of coverage, multiple funding sources with different
eligibility requirements that cause many people to shift in and out of eligibility,
and significant variations in the type of HIV services offered in each state prevent
comprehensive and sustained access to quality HIV care.
Low provider reimbursement in Medicaid and managed care delivery systems
has the potential to discourage experienced physicians from treating patients with
HIV infection and to undermine the quality of HIV care.
SOURCE: IOM, 2005.
many policy-related barriers to access to the standard of care for HIV in
the United States (IOM, 2005) (Box 2). The IOM committee faulted the
public response to HIV and described a patchwork of public programs
offering fragmented care and health care providers inadequately reimbursed
for their services. Most of the barriers to care identified in the 2005 IOM
report are still present today.
POLICIES THAT PROMOTE OR INHIBIT CLINICAL CARE
SERVICES AMONG AGENCIES AT THE FEDERAL LEVEL, STATE
LEVEL, OR BETWEEN FEDERAL AND STATE AGENCIES
Jennifer Kates, Kaiser Family Foundation, noted that the health care
financing and delivery system in the United States has gaps in access to care
that vary by state. Problems in accessing care can be acute for the general
population, but they are particularly onerous for individuals with HIV/
AIDS who, as a group, are more likely to be poor and disadvantaged. On
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7
EXPLORING THE IMPACT OF POLICIES ON HIV CARE
March 23, 2010, President Obama signed into law the Patient Protection
and Affordable Care Act (ACA) that extensively changes the way in which
health care is financed and provided in the United States (P.L. 111-148).
This section of the report provides an overview of federal and state pro-
grams and policies that affect access to HIV/AIDS care and how these
programs may be affected by the recent health care reform.
Health Insurance Policies
Having health coverage is critical to gaining access to HIV/AIDS-
related care due to the high expense involved in medical management of
the disease. Care for people with HIV may be covered through federal
programs such as Medicaid, Medicare, the Ryan White program, and the
Department of Veterans Affairs (VA); community health centers (CHCs);
private health insurance; or a combination of programs.
There are no recent national estimates of health coverage of individu-
als with HIV. The HIV Cost and Service Utilization Study (HCSUS), for
example, the only nationally representative study of people with HIV/AIDS
in care, was conducted from 1994 to 2000.2 A recent analysis of data from
a convenience sample involving 12 medical sites located in urban cities
throughout the United States showed that the majority of patients were
covered under Medicaid (42 percent, including those dually eligible for
Medicare) and the Ryan White program (24 percent) (Table 2).3 These data
likely do not represent the national picture of health coverage of individuals
with HIV, however, such as those in non-urban areas.
Medicare, Medicaid, and the Ryan White program provide the majority
of the public funding for HIV/AIDS care (Figure 1). Of the $13.2 billion
in total federal expenditures for HIV/AIDS care in FY 2010, 75 percent
represents mandatory spending on entitlement programs (i.e., Medicare,
Medicaid, and the Federal Employee Health Benefits program) and 25
percent represents discretionary spending (e.g., Ryan White, VA, and the
Substance Abuse and Mental Health Services Administration [SAMHSA]),
which is dependent on annual congressional appropriations (KFF, 2010f).
There are many potential health coverage pathways and associated
eligibility criteria for people with HIV/AIDS. Coverage varies by payor as
well as several other factors including age, employment status, citizenship,
and health status/disability (Table 3).
2 HCSUS estimated that of the estimated 231,400 HIV-infected adults living in the contigu-
ous United States at the time, 32 percent had private health insurance, 29 percent had Medic-
aid alone, and 20 percent had no insurance. Nineteen percent of patients had Medicare with
or without other health insurance (Bozzette et al., 1998)
3 Data are from medical sites located in Baltimore, Maryland; Tampa, Florida; Dallas, Texas;
New York City, New York (3 sites); Rochester, New York; Philadelphia, Pennsylvania; Detroit,
Michigan; San Diego, California; Oakland, California; and Portland, Oregon.
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8 HIV SCREENING AND ACCESS TO CARE
TABLE 2 Estimates of Insurance Coverage Among Patients with
HIV Attending Medical Offices Participating in HIVRN, 2010
Insurance Number of Patients (%)
Private 2,585 (13)
Medicaid 7,009 (36)
Medicare 2,348 (12)
Medicaid & Medicare 1,091 (6)
Ryan White/Uninsured 4,580 (24)
Missing 1,622 (8)
Total Number of Patients 19,235
SOURCE: Analysis of data from K. Gebo and J. Fleishman, November 2010.
(In billions)
SAMHSA $0.1
1%
FEHB $0.1
Other $0.1
1%
Veterans Affairs 1%
$0.8
6%
Medicaid (federal
Ryan White $2.3
only) $4.7
17%
36%
Medicare $5.1
38%
$13.2 billion
FIGURE 1 Federal funding for HIV/AIDS care by program, FY 2010 (in billions).
SOURCE: KFF, 2010f.
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TABLE 3 Potential Eligibility Criteria for People with HIV/AIDS, by Major Payor/Source
Private
Medicaid Medicare Employer Individual Ryan White
Must be both
low income and Low income
categorically Seniors or under Individual and uninsured
Who eligible 65 disabled Job-based market-based or underinsured
Income/asset test Yes No N/A—but costs N/A—but costs Yes
involved involved
U.S. citizen Yes Yes Not necessarily Not necessarily No
Preexisting condition No No Some limits Yes, in most states No
limit
State variation Yes No Yes Yes Yes
Capped funding No No Yes Yes Yes
HIV-specific program No No No No Yes
SOURCE: KFF, 2010e.
9
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10 HIV SCREENING AND ACCESS TO CARE
Federal and State Health Insurance Programs4
Medicaid Medicaid is the nation’s principal safety-net health insurance
program and represents the largest expenditure on health coverage for peo-
ple with HIV/AIDS when federal and state expenditures are combined. The
program is a federal-state partnership, with each state and territory operat-
ing its own Medicaid program under broad, federal guidelines. Medicaid is
a guaranteed entitlement to U.S. residents and documented immigrants, and
federal funding is provided to match state funds for those eligible for cover-
age. In 2009, 47.8 million people were covered by Medicaid (DeNavas-Walt
et al., 2010). An estimated 200,000–240,000 individuals with HIV/AIDS
receive care through the Medicaid program (KFF, 2009a). Federal spending
on Medicaid in FY 2010 is estimated at $275.4 billion,5 with an estimated
$4.7 billion going to HIV care (KFF, 2009b), and additional state spending
on HIV care is estimated at close to $4 billion (CMS, personal communica-
tion, September 2010).
Minimum eligibility requirements for Medicaid are set by federal law.
To be eligible for Medicaid, an individual must be both low income and
“categorically” eligible. There are several pathways to Medicaid coverage
(Table 4). The large majority of persons with HIV on Medicaid qualify on
the basis of being both low income and disabled, as determined by their
eligibility for Supplemental Security Income (SSI) benefits. Because states
have discretion in designing and administering Medicaid programs, there
is considerable variation by state in eligibility, benefits, and other aspects
of program. In addition to the mandatory groups that all states must cover
to receive federal matching funds, there are optional eligibility groups that
states can choose to cover and receive federal matching funds. For instance
states have the option to offer eligibility for individuals with income above
the threshold for the state (Table 4) (KFF, 2009a).
Income eligibility requirements for Medicaid vary greatly by state, and
are often very restrictive. For instance, in 34 states, low-income parents
must have incomes less than the federal poverty level (FPL) to be Medicaid
eligible; in 17 states, incomes must be less than 50 percent of the FPL (KFF,
2009c).6 Programs and benefits also vary. For example, only 33 states and
the District of Columbia have a program for individuals who are medi-
cally needy to serve people who have incomes that are too high to qualify
for Medicaid but who are otherwise eligible (this is an optional program
4 This section is based primarily on the presentations of Jennifer Kates, Deborah Parham
Hopson, Heather Hauck, and Andrea Weddle.
5See http://origin.www.gpo.gov/fdsys/pkg/BUDGET-2011-TAB/xls/BUDGET-2011-TAB-16-1.
xls.
6 The FPL is an income threshold that is used as a measure to determine eligibility for as-
sistance through several federal programs.
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11
EXPLORING THE IMPACT OF POLICIES ON HIV CARE
TABLE 4 Medicaid Eligibility Pathways for People Living with HIV/
AIDS
Category Criteria Mandatory/Optional
SSI beneficiaries Severely disabled and low Mandatory (11 “209B” states
income (standard 74% of can have more restrictive
FPL, varies by state) eligibility)
Parents, children, pregnant Low income; income Mandatory; states may offer
women and asset criteria vary by higher income thresholds
category and state
Medically needy Severely disabled and low Optional (33 states and the
income, after subtracting District of Columbia use
incurred medical expenses; this option for people with
income and asset criteria disabilities)
vary by state but generally
well below SSI levels
Workers with disabilities Severely disabled; low Optional
income; for persons
returning to workforce
Poverty-level expansion Allows for income above Optional
SSI levels up to FPL
State supplementary Allows for coverage of Optional
payment those receiving SSP
SOURCE: KFF, 2009a.
under Medicaid) (KFF, 2009b), and 19 states have prescription drug limits
(e.g., monthly or annual limits on the number of prescriptions) within their
Medicaid programs (KFF, 2008).
Heather Hauck, Maryland Department of Health and Mental Hygiene,
discussed how some but not all states have Medicaid expansion programs
allowing coverage for non-disabled individuals. In addition, there is limited
coverage for nonmedical services, such as case management and housing,
under Medicaid. Medicaid data system limitations may restrict the ability
of administrators to assess who is in care and the appropriateness and out-
comes associated with that care.
Other barriers to access to Medicaid coverage include the onerous
application process in some states; a restrictive definition of disability that
excludes persons with HIV who do not have an AIDS diagnosis and who
are capable of engaging in “substantial gainful activity” (although this will
be alleviated with changes to categorical eligibility criteria that will no
longer require an AIDS diagnosis/disability under the ACA); and limited
beneficiary autonomy in choosing a care provider (Rawlings and Hopson,
2009).
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54 HIV SCREENING AND ACCESS TO CARE
According to 2008 data from SF, an estimated 15 to 20 percent of HIV-
infected individuals in SF do not know their infection status. Among those
who have been identified as HIV positive, 88 percent are engaged in care
and 72 percent have virologic suppression (Das et al., 2010). This later sta-
tistic can be attributed to the availability of simpler and more potent medi-
cations and more aggressive management on the part of providers. SF has
adopted the “test-and-treat” model. Even before the new guidelines were
implemented in 2009, close to half of persons living with HIV (non AIDS)
with CD4 counts above 500 were on ART. Approximately 90 percent of
persons living with AIDS and 70 percent of people living with non-AIDS
HIV are on ART (Das et al., 2010).34
A “Fast Team” links individuals with care. Routine testing has been
implemented in the emergency department of SF General Hospital. A team
member links those who are HIV positive to care. According to Colfax,
their linkage rate is 96 percent. Targeted testing is also taking place in clin-
ics serving MSM.
Colfax described methods used to monitor the “test-and-treat” pro-
gram. An electronic medical record captures medication prescribing, medi-
cation switches, and laboratory response to treatment (CD4 and viral load).
In addition, an annual patient satisfaction survey is conducted. Monitoring
takes place to identify patients lost to follow up or who have dropped out
of care. Some individuals are referred to the outreach team for support and
engagement. There is active surveillance for resistance in collaboration with
the University of California, SF virology lab.
There are almost 4,500 individuals in SF who are enrolled in ADAP
with an average annual expenditure of about $7,820 per client (Personal
communication between Grant Colfax and California State Office of AIDS,
June 14, 2010).35 Colfax estimated that additional funding will be needed
to support availability of ART for HIV-infected individuals in SF with full
implementation of the “test-and-treat” program. The city is currently facing
a fiscal deficit and the public health clinic is laying off staff, so implementa-
tion may be difficult until the economy recovers.
Colfax described the need for changing provider behavior in terms of
adherence to the new guidelines, but acknowledged the difficulties in doing
so. There has been general community support of the new guidelines; how-
ever, there has been some misunderstanding regarding the primary intent
of the program (i.e., treatment vs. prevention). Colfax indicated that a
“test-and-treat” strategy alone will not eliminate the HIV/AIDS epidemic.
He emphasized the importance of public health approaches that address
the many important nonmedical determinants of health and prevention.
34 These statistics refer to individuals who have been reported to the health department.
35 This estimate does not include the rebate (an average of 46 percent).
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55
EXPLORING THE IMPACT OF POLICIES ON HIV CARE
Although the vast majority of SF’s HIV-infected population are MSM, the
city’s program applies to all HIV-infected individuals and is a model that
could be duplicated in other cities or regions with different demographics.
CONCLUSIONS
Advances in treatment have led to significant improvements in survival
and quality of life for HIV-infected individuals who are identified early
and linked to care. In part due to insurer and federal and state policies and
practices, the benefits of early intervention and linkage to care, however,
have not reached a sizable group of those who are HIV infected.
Policies That Promote or Inhibit Clinical Care Services Among Agencies
at the Federal Level, State Level, or Between Federal and State Agencies
Status of Health Care Coverage
Fragmentation of coverage and multiple funding sources with different
eligibility requirements cause many people to shift in and out of eligibility
for care. Furthermore, there are substantial regional variations in the avail-
ability of coverage. Medicaid, in particular, is characterized by wide varia-
tion by state, in terms of eligibility and benefit coverage. The Ryan White
program has been a lifeline with regard to paying for medications and other
services, filling in the gaps left by other funding sources. It also is credited
with allowing providers to create “medical homes” for their HIV/AIDS
patients. At the same time, unlike Medicaid, the Ryan White program is a
discretionary grant program that depends on annual appropriations from
Congress, and its funding does not necessarily match the need for or the
costs of care, creating gaps in access in several states and cities.
The Affordable Care Act will address several shortcomings in the
current financing and delivery systems, with millions of low-income indi-
viduals, including people with HIV/AIDS, gaining access to Medicaid and
benefiting from the removal of current barriers to accessing private insur-
ance, but there are concerns that not all of the benefits that are currently
available through the Ryan White program (e.g., medications, adherence
support, case management) will continue to be supported. An integrated
approach to HIV/AIDS care may depend on the continuation of the Ryan
White program. Furthermore, services provided through the Ryan White
program are, and will continue to be, essential for groups of individuals,
such as undocumented immigrants, who will remain without access to
Medicaid under the ACA.
Several policies could be considered to reduce financial barriers to care,
including
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56 HIV SCREENING AND ACCESS TO CARE
· ringing eligibility criteria for public and private coverage into line
b
with HHS guidelines for initiating ART;
· rovision of cost sharing assistance or subsidies for lower income
p
populations (as in Medicare Part D);
· mposition of monthly and annual capitations on overall out-of-
i
pocket expenses;
· isallowing the practice of denying coverage for failure to pay for
d
services; and
· limination of annual or lifetime coverage limits (as proposed in
e
the ACA).
Access to HIV/AIDS Expertise
Current reimbursement policies, particularly under Medicaid, restrict
access to providers with HIV/AIDS expertise. Even under the ACA, infec-
tious disease physicians who provide primary care to HIV/AIDS patients
may not be able to benefit from advantageous primary care provider reim-
bursement policies under Medicaid. Federal and/or state policies or other
programs could be enacted
· o require health plans to include HIV/AIDS medical providers in
t
their provider networks;
· o change reimbursement policies that restrict access to HIV
t
providers;
· o ensure that infectious disease providers who provide primary
t
care to HIV/AIDS patients will be reimbursed in a manner compa-
rable to other primary care providers; and
· o offer appropriate training and incentives to encourage providers
t
to practice HIV medicine or to become competent to provide HIV
care within their primary care practices.
Access to Medications
Restrictive eligibility criteria and cost-sharing requirements for health
coverage limit access to medications for many individuals with HIV/AIDS.
Federal support for antiretroviral and other essential medications through
the Ryan White ADAP program is essential to HIV/AIDS patients, but
several states are experiencing waiting lists, and others are exercising other
cost containment strategies. Some state ADAP formularies do not cover all
antiretroviral drugs and some are missing critical classes of drugs. States
facing funding shortfalls must triage care, treating those with the lowest
CD4 counts or those who are symptomatic. The lack of programs in several
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57
EXPLORING THE IMPACT OF POLICIES ON HIV CARE
states to serve individuals who are disabled (but have incomes too high to
be eligible for Medicaid), as well as the existence of prescription drug limits
in some states, also pose barriers to receipt of care for individuals with HIV/
AIDS who are in need of treatment.
To help ensure that all HIV-positive individuals have access to needed
medications, consideration might be given to
· roviding sufficient Ryan White funding to eliminate ADAP wait-
p
ing lists and other cost containment and triage strategies;
· xtending ADAP coverage to all antiretroviral and other classes of
e
drugs, for example, for mental health, cardiovascular, and gastro-
intestinal conditions;
· roviding programs in all states to serve individuals who are medi-
p
cally needy but have incomes too high to be eligible for Medicaid;
and
· eliminating prescription drug limits in all states.
Unstable Housing and Associated Polices
Homelessness is a risk factor for HIV infection and poorer outcomes
among HIV-infected individuals. The provision of stable housing is associ-
ated with a reduction of risk behaviors, increased health care and social
service use, adherence to ART medications, and improvement in the sur-
vival and health status of HIV-infected individuals. More longitudinal clini-
cal trials are needed to determine whether, in which areas, and the extent
to which housing status is causally related to a decrease in risk behaviors
and improvements in health care and health outcomes for HIV-infected
individuals. “Housing First” and “one-stop” service housing models have
proven cost effective in linking vulnerable individuals into care and improv-
ing health outcomes by addressing housing needs first while making service
needs easily accessible. Currently, the demand for the Housing Opportunity
for People with AIDS program administered by the Department of Housing
and Urban Development is much greater than can be met. It is important
to ensure adequate, stable housing for HIV-infected individuals through
sufficient funding for HOPWA and other programs that support housing.
Policies Affecting Immigrants
Immigrants, and especially undocumented immigrants, face numer-
ous barriers to HIV/AIDS care including a general lack of access to health
insurance, the absence of linguistically and culturally appropriate care,
stigma, unstable housing, and lack of family support. The ACA, although
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58 HIV SCREENING AND ACCESS TO CARE
beneficial to many, does not include coverage of undocumented immigrants
under Medicaid. The Ryan White program, as a federal program that does
not make exclusions on the basis of immigration status, continues to be an
essential source of care for immigrants with HIV/AIDS.
Possible means to reduce/remove the barriers to care faced by immi-
grants, and especially undocumented immigrants, include
· roviding access to linguistically and culturally appropriate care;
p
and
· reservation of the Ryan White program to provide coverage to
p
individuals regardless of their immigration status.
Policies Affecting Individuals Within the Correctional System
Individuals who are incarcerated in jails and prisons are eligible for
health care, but too often HIV/AIDS care is absent, incomplete, or not
coordinated with care that the inmate received prior to admission to the
correctional system or that is available upon release. Sources of health care
coverage are discontinued or suspended upon entry into jail or prison.
Model federal and state programs have shown that individuals can be
routinely tested for HIV at entry into the correctional system, cared for
during incarceration, and linked to follow-up care following release. To
succeed in providing comprehensive care, bureaucratic obstacles must be
overcome and collaboration must be forged between the correctional and
community-based care systems. Provision and continuity of care for incar-
cerated individuals can be promoted through
· mplementation and sufficient funding of programs that provide
i
routine HIV testing to individuals at entry into the correctional
system, care for HIV-infected individuals during incarceration, and
linkage to follow-up care after release;
· emoval of bureaucratic obstacles to such programs; and
r
· ncreased collaboration between the correctional and community-
i
based care systems.
Considerations of confidentiality and nondiscrimination are important
to protect the well-being of individuals diagnosed or treated in correctional
facilities. Establishment of an effective program for testing and treating the
groups of individuals who pass through the correctional system is a monu-
mental task but would help to extend interventions to otherwise difficult
to reach populations.
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EXPLORING THE IMPACT OF POLICIES ON HIV CARE
Policies Affecting Mentally Ill Individuals and Substance Abusers
Many people living with HIV/AIDS experience mental illness and would
benefit from mental health services to help them cope with the emotional
and cognitive impact of their condition. In addition, a substantial number
of individuals with HIV/AIDS are dependent on substances of abuse. There
are large gaps in coverage for mental health and substance abuse treatment
for persons with HIV/AIDS. When available, private and public mental
health and substance abuse treatment coverage is generally inadequate.
Implementation of the Mental Health Parity and Addiction Equity Act
of 2008 (P.L. 110-343, Subtitle B, § 511-512) and the ACA will improve
coverage. These services will be essential benefits for plans operating in the
state-based exchanges in 2014.
How Federal and State Agencies Can Provide
More Integrated HIV Care Services
Systems Integration for HIV/AIDS Care
As infection with HIV has evolved into a chronic condition with the
advent of HAART, the clinical and social needs of those infected have
changed, and questions have arisen about how best to structure programs
to meet those needs. Various levels of systems integration for HIV/AIDS
services may help individuals receive comprehensive care, optimize their
health outcomes, and reduce HIV transmission to others. Federal and
state agencies might facilitate integration of HIV care with closely related
infectious conditions including STIs, viral hepatitis, and tuberculosis; inte-
gration with case management, mental health and substance abuse treat-
ment, transportation, translation services, and dental care; integration with
“upstream” services that impact social determinants of health, such as
housing, education, job training, legal services, and refugee and immigrant
services; and integration into mainstream health care, in particular, the
chronic care model.
Filling Gaps Created by Categorical Funding
After the ACA is implemented and more clients are covered by Medic-
aid, a portion of the Ryan White funds currently dedicated to core medical
services may be available for support services (e.g., outreach, medical trans-
portation, referrals for health care and other support, language services,
respite care for individuals caring for persons with HIV). To overcome
the problems associated with categorical funding, consideration could be
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60 HIV SCREENING AND ACCESS TO CARE
given to having explicit language in notices of grant awards that allows and
encourages flexibility in use of the support.
Increasing the Role of Community Health Centers
One provision of the current plan for health care reform under the ACA
is increased funding for CHCs to augment the nation’s capacity to meet
the health care needs of individuals who are under- and uninsured. It is of
concern that not all CHCs are providing HIV testing and HIV/AIDS care.
A Policy Information Notice from HRSA could provide guidance to these
CHCs to expand access to HIV/AIDS care services. In high HIV incidence
areas, comprehensive HIV testing and care could be provided by CHCs in
coordination with state HIV/AIDS programs.
Reducing Reporting Burdens
Improved data collection and coordination and reduced reporting bur-
den on the part of clients, clinics, health departments, and community-
based organizations could be facilitated by
· treamlining the disparate and redundant data collection and dis-
s
semination requirements across agencies; and
· armonizing reporting requirements across federal agencies (e.g.,
h
HRSA, CDC, SAMHSA).
Clinician Training
Educating clinicians about the role of state health departments in iden-
tifying individuals with HIV/AIDS and linking them to care can help bridge
communication gaps that may exist between clinical and public health
providers. It is important to ensure the continuation of federally sponsored
and other professional training programs, including AETCs and others at
HRSA, SAMHSA, and CDC, to further providers’ understanding of health
department programs, such as community-based health education and pre-
vention activities, surveillance, and HIV-related infectious disease programs
(e.g., STIs, hepatitis, tuberculosis).
HIV Medication Adherence Programs
Policies in Funding HIV Medication Adherence Programs
The federal Ryan White program, in addition to paying for antiretrovi-
ral therapy through the ADAP program, supports adherence interventions.
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EXPLORING THE IMPACT OF POLICIES ON HIV CARE
Some ADAP support can be used to increase access to medication, improve
adherence, and monitor progress on therapy. Certain requirements must be
met, however, in order to use ADAP support for these purposes. Adher-
ence support through ADAPs is limited by a federal policy that stipulates
that no more than 5 percent of a state’s ADAP funding can be used for
services related to adherence. Furthermore, in order for states to be able to
use ADAP funding for adherence purposes, they must have no client wait-
ing list or limits on enrollment and no restrictions or limitations on HIV
medications. States with waiting lists and other restrictions on the program
have had to prioritize providing basic access to medications instead of using
limited resources for adherence programs.
Improving Adherence
Ensuring that patients adhere to their treatment regimens is necessary
to maximize their health outcomes. Interventions to improve adherence
to HIV/AIDS medication regimens can be cost effective. They have been
shown to both improve adherence and prevent a decline in adherence.
Means to improve patient adherence include
· nsuring that the federal rules and funding for Ryan White pro-
e
grams maximize the ability of states to use the funds to support
adherence interventions;
· tructuring state ADAP programs to maximize the provision
s
adherence services through co-location of HIV/AIDS clinics and
pharmacies, client-centered pharmacies (e.g., mail order filling of
prescriptions), and electronic record systems to track patient adher-
ence and alert providers of episodes of noncompliance;
· inimizing structures that contribute to adherence problems, such
m
as delays in communication between health departments and phar-
macies (necessitating that a client potentially make multiple trips
to a pharmacy to get a prescription filled) and rules that may limit
who within a state can perform duties related to medication moni-
toring; and
· mplementing adherence interventions that have been demonstrated
i
to be the most effective, such as those involving the use of devices
(e.g., pillboxes, bubble packs) that can help to remind patients
of when to take their medications, and those that are interac-
tive, open-ended, and multidisciplinary and that include multi-
ple sessions, use behavioral skill development, target motivation/
cognition/expectations, and provide periodic reminders.
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62 HIV SCREENING AND ACCESS TO CARE
Access to Treatment of Earlier Stage HIV Infection
The San Francisco “test-and-treat” program that emphasizes detection
(through routine and targeted testing programs) and early treatment of
HIV-infected individuals might serve as a model for increasing access to
treatment in other jurisdictions. Expanded testing, as discussed in the com-
mittee’s first report (IOM, 2010), will help to increase the number of indi-
viduals diagnosed with HIV, and identification is the first step in increasing
individuals’ access to care at earlier stages of infection. The second step is
linking newly diagnosed individuals to care and then retaining them in care
once linked. The means by which newly diagnosed individuals are linked to
care varies depending on the venue where the testing takes place. In general
terms, newly diagnosed individuals receive at least basic information and
counseling, as well as concrete provisions for follow-up care and treat-
ment. Various methods for improving treatment adherence and retaining
individuals in care already have been outlined. Following diagnosis, one of
the primary factors affecting access to care specifically for individuals with
CD4 counts greater than 500 is treatment coverage.
Decisions by insurers regarding services to cover are often informed by
clinical guidelines. Although there is general agreement among professional
organizations and government bodies about initiating antiretroviral therapy
when the CD4 count is below 500, there is less certainty regarding treat-
ment at CD4 counts above 500. Evidence is mounting to support earlier
treatment. Early intervention has been associated with improved clinical
outcomes (e.g., reduction in inflammation), reduced viral loads, and lower
rates of transmission. Although newer treatments have lesser short-term
adverse effects, there is concern that longer-term treatment could have
adverse impacts on health, such as accelerated aging.
Insurers may allow clinicians some discretion in making treatment
decisions and may pay claims for HIV/AIDS treatments irrespective of CD4
count. However, specialist care may not be covered and so the expertise of
clinicians providing care may be at issue. Eligibility for coverage for people
with HIV/AIDS under Medicaid and Medicare often requires meeting cri-
teria for disability, which tend to be suggestive of more advanced disease,
although under the ACA, persons with HIV who meet the new income
threshold will no longer have to qualify on the basis of disability.
Provision of maximal (early) care for HIV-infected individuals with
CD4 counts and viral loads that do not fall within the current clinical
guidelines may be promoted by
· nsurers considering coverage of claims for HIV/AIDS treatments,
i
irrespective of CD4 count;
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63
EXPLORING THE IMPACT OF POLICIES ON HIV CARE
· edicaid and Medicare providing coverage for all persons with
M
HIV who meet the income threshold, without requiring them to
qualify on the basis of disability, as intended under the ACA;
· unding of ADAP and other programs at levels sufficient to elimi-
f
nate the need for programs or providers to prioritize provision of
treatment based on, for example, CD4 counts;
· the organizations that issue clinical guidelines making their pur-
poses clear and their methodology transparent, so that policy mak-
ers can better understand the source of any discrepancies; and
· he federal agencies and professional societies that issue guidelines
t
keeping them updated to reflect the latest scientific evidence, as
HHS does on a regular basis.
Taken collectively, improvements in these areas will help to promote both
early treatment, with minimal interruption, and the provision of psycho-
social and support services for HIV-infected individuals, leading to better
health outcomes.
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