Much progress has been made in recent years.   Mental health has become an acceptable topic of conversation in many social circles and, among some segments of society, reaching out for help is now interpreted as a sign of strength, not weakness.  Treatment of mental illness has also improved dramatically.  Mental health care increasingly is considered part of comprehensive primary care and referrals for mental health services are much more readily available.  And the arsenal for fighting mental illness is larger than ever before.  

Definitions

The 1999 publication Mental Health: A Report of the Surgeon General provides welcomed guidance for advancing our understanding of basic mental health concepts.  This landmark publication provides the following definitions of mental health and mental illness: 

*Disability-adjusted life year (DALY) is a measure that expresses years of life lost to premature death and years lived with a disability of specified severity and duration (Murray & Lopez, 1996).

**Disease burden associated with "mental illness" includes suicide.

The Surgeon General's report makes this recommendation to the American people regarding mental health/illness: seek help if you have a mental health problem or think you have symptoms of a mental disorder. Yet, there are many barriers to putting this advice into action, including the stigmatization of those with mental health disorders, and gaps in the availability of state-of-the-art mental health services for those who seek them.  The report recommends courses of action in order to overcome these barriers.  In summary:

• Continue to build the science base;
• Overcome stigma;
• Improve public awareness of effective treatment;
• Ensure the supply of mental health services and providers;
• Ensure delivery of state-of-the-art treatments;
• Tailor treatment to age, gender, race, and culture;
• Facilitate entry into treatment; and
• Reduce financial barriers to treatment.

How Prevalent is Mental Illness Among People Living with HIV Disease?

The precise number of people living with HIV disease who suffer from mental illness is impossible to know. Disease surveillance is difficult for many reasons. Mental illness is often undiagnosed and many people are able to carry out activities of daily living despite mental health problems.  Moreover, mental illnesses are points on a vast continuum, from the mildest form of short-term depression—perhaps in reaction to an HIV diagnosis—to a lifelong struggle with schizophrenia that existed long before HIV was contracted.

Common Psychiatric Disorders Among People Living With HIV Disease

There was also agreement that the term "dementia," previously applied to subjects with a broad range of neuropsychologic functional capacity, should be reserved for only the most severe level of HIV-related cognitive impairment.

Care and Treatment of Mental Illness in Individuals Living with HIV Disease

In collaboration with other Federal agencies, HRSA has played a role in improving services to people with HIV disease who have mental health problems.  HRSA, along with the Substance Abuse and Mental Health Services Administration and the National Institutes of Health, conducted the HIV/AIDS Mental Health Services Demonstration Program, which focused on the mental health needs of people living with or affected by HIV.

Findings of this project were published in the 1999 Mental Health Care for People Living With or Affected by HIV/AIDS: A Practical Guide. The authors believe that the mental health needs of people with HIV are best addressed using the bio-psychosocial approach to care, where providers must address this population's needs on several levels:

• Social and environmental circumstances: including  poverty, access to care, family relationships, housing, financial needs, food, child care, transportation, and legal status. Such concerns may be further complicated by homelessness, incarceration, and prostitution.
   
• Psychological factors: including stress; depression;  anxiety; cognitive impairments due to HIV-associated  dementia; psychosis; mania; pre-existing serious mental illness, including schizophrenia and bipolar disorder; and poor judgment and impulsivity associated with personality disorders. Defense mechanisms, such as avoidance and denial, also may interfere with seeking and accepting treatment.
   
• Biological aspects: health issues associated with HIV include the client's medical condition; health of the immune system; symptoms and common oppor-tunistic infections (e.g., of the brain); medications prescribed both prophylactically and for symptom relief; and co-existing chronic illnesses, such as diabetes, renal and liver disease, and high blood pressure.

Further, the authors report that a key lesson learned was the importance of collaborative networks, which are vehicles to ensure that service provision systems are responsive and effective in meeting the multiple, complex needs of people with HIV/AIDS.  The networks are a series of formal or informal relationships between and among individuals and organizations. They enhance the range and accessibility of services available to clients, and allow providers and administrators to benefit from the experience of other community organizations. 

HCV progresses slowly, and because individuals with HCV can remain asymptomatic for 20 years or longer, many with the disease are unaware of their condition.  Chronic liver disease is the tenth leading cause of death in the United States; 40 percent is HCV related, killing between 8,000 to 10,000 individuals each year.

The U.S. Public Health Service and the Infectious Disease Society of America have issued a set of guidelines for the prevention of opportunistic infections among patients who have HIV.1   With regard to HCV infection, the guidelines recommend the following:

1. HIV-positive persons should be screened for HCV by enzyme-linked immunosorbent assay;
2. Patients should be advised on alcohol use;
3. Patients should be screened for hepatitis A virus IgG. 
   If negative, they should be vaccinated;
4. Patients should be evaluated for liver disease and need for treatment;  and
5. Liver enzymes should be monitored after initiation of HAART.

Standard therapy for HIV/HCV is a combination of interferon alfa-2b and ribavirin: patients receive twice weekly interferon injections and daily oral doses of ribavirin for 6 to 14 months.  The majority of patients concurrently receive HAART for treatment of HIV. 

A recent study conducted by Douglas Dieterich, M.D., chief of Gastroenterology and Hepatology at Cabrini Medical Center in New York City, examined the efficacy of the standard interferon/ribavirin approach.  Forty percent of coinfected patients who received the therapy had a sustained virologic response.  The study also demonstrated that ribavirin does not interfere with the action of certain HIV medications, as had been previously thought.

In this study, the HIV/AIDS Bureau (HAB), and Cities Advocating Emergency AIDS Relief (CAEAR) Coalition sought to understand how Eligible Metropolitan Areas (EMAs) under Title I of the Ryan White CARE Act are responding to the HIV/AIDS epidemic among minorities.

Methodology

Telephone interviews were conducted with two individuals in each of four Title I EMAs to obtain information on responses to the epidemic among minorities.

Results

EMAs are implementing multi-faceted responses that address AIDS morbidity and mortality among minorities, and are improving capacity among minority providers, enhancing targeted outreach, and collaborating with com-munity-based organizations. However, many HIV-positive individuals remain out of care, and the cost and complexity of serving those who are in care is high.  As HIV disease increasingly expands into communities with high levels of poverty and comorbidity, managing the disease becomes more intensive, expensive, and complex.

Minorities living with HIV disease often have less access to care and, consequently, poorer health status.  The decline in AIDS mortality from 1996 through 1998 was less significant among African Americans (45 percent) and Latinos (53 percent) than among whites (60 percent); and the decline among females, four out of five of whom were minority, was just 43 percent, compared with 55 percent among males.

This study intended to address:

• What are the primary factors that affect access to services and disparities in outcomes for minorities with HIV disease in the case study EMAs?
• lWhat strategies have been developed that hold promise for reversing these access and disparity gaps?

The CAEAR Coalition is a national organization that advocates for sound public health policies and resources for the health care and supportive service needs of people living with HIV disease who receive services through the CARE Act, particularly through Title I and Title III.

Data released by the Centers for Disease Control and Prevention in spring 1998 highlighted a startling increase in new HIV infections and AIDS morbidity among African Americans.  African American community representatives called on the Congressional Black Caucus (CBC) and the Administration to declare a national state of emergency to address this crisis.  In October 1998, the President declared the AIDS epidemic among minorities to be a "severe and ongoing health crisis," and some months later the CBC Minority HIV/AIDS Initiative designated $156 million in additional Federal funds to combat HIV/AIDS in minority communities hardest hit by HIV disease.

Eight individuals were interviewed for not less than 30 minutes each.  Two were HIV positive. In all four EMAs, a senior official within the Title I grantee office was interviewed.  Another person, knowledgeable of HIV/AIDS service implementation and actively involved in health planning and service provision, but not employed by the grantee, was also interviewed.

A standard interview protocol was used; respondents were asked to answer based on their opinions and perceptions.  Participants were urged not to repeat information provided  in their Title I grant applications or in the CBC Initiative applications. Respondents were advised that this research was not related to continuation of current grants received under the CARE Act, receipt of future grants, or any grants management or program implementation monitoring function. 

Barriers to Care in the Cleveland EMA
Both Cleveland respondents believe that transportation is the most critical barrier to care, particularly in trying to create referral networks with rural providers.  Those without access to Cleveland's public transportation system are especially vulnerable.

Poverty and lack of access to essential services such as housing is a growing problem. In Cleveland, shelters are reluctant to accept HIV-positive persons; when they do, drug policies make HIV treatment adherence complex, at best.

Stigma associated with same-sex sexual activity is strong.  Low educational attainment is a significant problem—the high school drop out rate in Cleveland is 50 percent.  Mistrust of the health care system is also widespread, and missed appointments have affected access to care: some organizations no longer collaborate with the grantee due to no-shows.

Respondents also discussed a lack of management skills among providers. In particular, they may lack the ability to present an organized service delivery concept or demonstrate the use of sound financial principles.  Providers find it difficult to learn from the experiences of other providers; with scarce resources, allocating staff time for communications with other providers is difficult, and few funds are available for professional development.

The Cleveland EMA's Response
Communities of faith are collaborating with the EMA.  Women are especially responsive to messages from faith-based organizations, but men are less receptive, especially men who have sex with men.  The region's Spanish newspaper is publishing free information about HIV disease regularly, and the local newspaper for homeless people is also providing information on prevention, counseling and testing, and HIV services. 

The EMA is strengthening relationships with substance abuse treatment providers, and building relationships with correctional institutions for the first time.  The grantee is also providing cultural sensitivity training.

The EMA is participating in a statewide effort to address lack of health care information among HIV-positive individuals: 125 people were trained on treatment updates, accessing entitlements, and emerging issues.  Trust is a significant issue, and the EMA is involving indigenous organizations in implementing solutions.

The grantee is working with the City of Cleveland to find housing solutions. In 1992, the housing waiting list was closed, and no new housing was added until 1999.

The respondents discussed additional strategic problems: treatment failure and its impact on the demand for support services; lack of access to medications not in the ADAP formulary; lack of capacity building dollars; and the challenges of "mainstreaming" individuals who are benefiting from HAART.

The auto industry draws African Americans and Latinos to Detroit, particularly African Americans from the South.  Latinos tend to be of Mexican, Cuban, or Haitian dissent.  A sizable number of Caldeans (a Christian Arab population) and migrant farm workers reside in Detroit during summer months.  Most minorities with HIV disease live at 200 percent of the Federal poverty line or less.  About 25 percent are female.

Respondents noted two crucial factors: (1) The EMA has an especially large deaf community due to hearing loss from work in automobile factories; and (2) some of the most stringent criteria for public assistance in the Nation.

Barriers to Care in the Detroit EMA
Lack of education, poor access to health information, and poor public transportation are significant.  Poor housing and lack of access to refrigeration and storage facilities were also noted.  The fear of stigma among men who have sex with men and among minority women, who fear being labeled as prostitutes, are also significant problems.  Fear of losing anonymity causes some Latinos to avoid a prominent Latino provider and to travel to other neighborhoods for care.  Deaf individuals are especially isolated from services.

Respondents cited a significant need for technical assistance among providers, and a propensity to compete rather than collaborate, the latter being an impediment to a "seamless" experience for consumers.  Staff turnover at the grantee level, the shortage of minority providers, and the lack of cultural competency were also believed to be significant.

The Detroit EMA's Response
The Detroit EMA was one of 11 sites that received from 8 to 10 weeks of special technical assistance from Federal "Crisis Response Teams" deployed by the U.S. Department of Health and Human Services.  Rapid assessment resources helped isolate the highest risk zip codes in the region, targeting two populations not in care:  African American men who have sex with men and African American injection drug users.

The grantee is changing how services are delivered.  Mobile services are offered during expanded business hours, and case managers are working in the streets to link individuals to care and assist with adherence.  Discharge planning is being improved, so that recently released individuals are not required to navigate a complex system of unfamiliar providers. 

The EMA is improving management outcomes, adopting a common data system and a higher quality needs assessment process.  Foundation funds are supporting capacity building at five minority organizations.  The grantee has changed its grants management approach from project monitoring to technical assistance, reflected in a range of initiatives, from evaluation and case management training to a new Community Primary Care Network.  The Network is credited with improving drug formularies and access to dental care.

Case management outcomes are being improved through an approach that empowers clients to manage all aspects of their lives.  "We are moving to a paradigm of partnership with the consumer," says one respondent.

Respondents credit insightful leadership from health care providers and case managers and the implementation of sound client health and social service care plans with improving outcomes among minority clients.

Barriers to Care in the Philadelphia EMA
Stigma is the most significant barrier, preventing individuals from accessing health information, and keeping them out of clinics and organizations known to be HIV providers.  A lack of stable minority providers is also a critical problem.

Housing and lack of transportation are problematic. Inadequate financial resources are the most important barrier to delivering services; some organizations can survive in a given fiscal period but cannot repay loans, and most Federal, State, and local funds can't be used to retire debt.

One respondent cited a profound dichotomy of need between suburban and inner-city communities. Using organizations with community relationships to reach HIV-positive individuals is important, but finding organizations that meet fiscal and organizational management requirements is a challenge.  Technical assistance and training helps, but implementing solutions is slow and costly.

The Philadelphia EMA's Response
The grantee is funding five new "storefront" sites in areas with high concentrations of HIV infection, substance abuse, and prostitution. Counseling and testing, referrals, and some primary medical care are available.  Funding providers that offer social services is a priority.

The grantee is funding a short-term inpatient substance abuse treatment program targeting mentally ill substance abusers at risk for homelessness; clients' basic needs are met before they are tested for HIV.  With the planning council's support, the grantee continues to encourage the funding of minority controlled service providers.

Services are being regionalized to help overcome barriers related to transportation and trust, and monitoring mechanisms are being implemented.

Consumers are very involved in planning processes, and the support of the Mayor of Philadelphia, the City's Social Services Director, and the Commissioner of Health are also crucial.

Community-based organizations need help honing their skills, defining their service lines, and coping with more stringent requirements for documented outcomes and improvements in quality of care.  The continuous quality improvement (CQI) process is one management tool, with technical assistance and capacity building as important components.

About one-half of all AIDS cases are among Latinos, almost one-quarter among African Americans, and the remainder among whites.  Men who have sex with men is the predominant risk factor for HIV transmission, but many do not identify as gay or bisexual.  The proportion of cases among women is increasing and almost all are among minorities.  Access to substance abuse treatment is a significant problem.

Barriers to Care in the San Antonio EMA
Poverty is the most significant barrier to care, exacerbated by an erosion of State programs and a lack of awareness— especially among women—that public services are available through CARE Act providers.

Stigma is a substantial problem.  Women fear being labeled as injecting drug users or prostitutes, while men fear being labeled gay or bisexual. HIV-related stigma is also a problem among potential providers.

An under-funded safety net system has resulted in poor access to HIV care.  Lack of State funds for primary health care means that a higher proportion of CARE Act resources goes to medical services. State and locally funded health care services are increasingly inaccessible; the region's public mental health treatment facility recently closed.

Organizations either focus on or are perceived to focus on one population's needs over another's.  Moreover, the service system is fragmented: "I work with 12 organizations, but they do not work with each other," noted one respondent.  A lack of professional resources is also a critical problem, as educational attainment is low and demand for skills is greater than supply.

The San Antonio EMA's Response
Funding increasingly targets African Aericans.  A weekly providers' meeting identifies potential lapses in services delivery, and a case manager or social worker works with consumers to resolve barriers.

Few local resources are available in San Antonio.  Educating key decision-makers about HIV disease and unmet need is critical. While advocacy has helped, adequate resources are still lacking.

The EMA is grappling with caring for its incarcerated population, who have minimal services.  The Internet is helping relay information to correctional caregivers.

The EMA is increasing access to medical care, but without improvements in access to Medicaid, progress will be difficult. 

• EMAs must cope with the erosion of the public social service safety net. Due to changes in State eligibility criteria, HIV-positive adults have uneven access to Medicaid, housing, and food, and the epidemic is spreading most rapidly among poor people with multiple diagonses.
• Community-based health care systems must cope with an explosion of co-morbidity—substance abuse, mental illness, and hepatitis C—while access to treatment is not keeping pace with need.
• EMAs battle long-held distrust of the medical establishment by populations that need care.
• EMAs must address these challenges despite rising health costs and a lack of resources for basic services.

Cost and Complexity of HIV Care
The costs of responding to the AIDS epidemic reflect the significant effort required to reach the most vulnerable people. Responding to an epidemic is generally least expensive among motivated individuals who have access to information, and no barriers to using it.  When barriers exist, costs are higher.  And where significant behavioral change is required, costs are still higher.  When disease and behaviors are associated with stigma or addiction,  they rise still higher.

A Multifaceted Response
EMAs are implementing activities on several fronts to respond to the epidemic among minorities: 

• Linking with communities of faith;
• Increasing the number of providers in underserved communities;
• Enhancing capacity building, technical assistance, and training;  and
• Being attentive to outcomes.

Activities that address barriers to care are labor and time intensive, and grantees face difficult choices about what to fund.  Moreover, determinants of success are not always in the grantees' control. For example, partnering with communities of faith can improve outreach outcomes, but churches may not want to be involved.  Grantees face difficulties in locating community-based providers to serve HIV-positive individuals.  Ensuring that services meet quality standards and that reporting data and fiscal controls are in place is equally challenging.

Barriers to HIV Care
EMAs reported that transportation, stigma, poverty, and lack of trust are significant problems.  How consumers will get to a service provider remains paramount 20 years after the onset of the epidemic and 10 years after passage of the CARE  Act.  Its resolution will directly influence reduction in AIDS mortality and comorbidity, improvements in quality of life and well-being, and total costs of care.

Stigma, particularly among men who have sex with men who do not identify as gay or bisexual, received substantial attention. Societal homophobia and internalized homophobia are critical issues because they result in self-loathing, denial, and fear. EMAs face a monumental communications challenge: they must overcome vociferous messages from society-at-large that can increase risk-taking, estrangement from health care, and premature death.

Poverty is stressing the CARE  Act-funded network, and it is exacerbated by an eroding public health and social service  safety net and rising HIV treatment costs.  Every respondent observed the vast difference between affected populations 10 years ago and today.  The potential for meaningful HIV therapy has increased while co-morbidity and the need for support services has skyrocketed.

What of the hundreds of thousands of individuals who remain outside the health care system?  The learned response is that community organizations should endeavor to meet all needs simultaneously.  The reality is that EMAs do not have the resources.

Challenges for the Future
EMAs are managing their resources with increasing efficiency and implementing new approaches with promise for reaching vulnerable populations. Each respondent discussed the importance of improving management capabilities, efficiency, and outcomes. Each discussed increasing capacity in indigenous minority organizations.  But financial resources are limited and EMAs must make increasingly difficult choices in an increasingly demanding environment.

Greater awareness of the needs and perceptions of those not in care and among those receiving services intermittently is critical.  Increased financial resources are important, but other barriers to care associated with stigma and behavioral change require more than money.  While progress is being made, many with HIV remain out of care and 40,000 new HIV infections occur in the United States every year. The AIDS crisis among minorities demands adequate resources for a comprehensive approach that includes communication and collaboration with those in need.