Towards an Understanding of Meeting HIV-Infected Substance Users’ Needs1
Ruth Finkelstein, ScD
Rebecca Tiger, MS
Julie Netherland, MSW
The epidemics of AIDS and substance abuse have been linked in the United States since long before identification of the HIV virus. The Centers for Disease Control’s (CDC) June 1982 report that of 152 known cases of PCP, 21 percent involved drug users contributed to scientists’ suspicion that the new condition was a blood borne disease (Altman, 1986). Despite the immediate inclusion of drug users among the infected and affected, homosexual men represented the largest number of early cases, and the gay community responded the most actively. Both the epidemiology and the response of gay activists helped to shape the policy issues surrounding AIDS (Watney, 1987).
Even though 17 percent of identified AIDS cases through the end of 1985 were among injecting drug users (CDC, 1986), very little research or programmatic attention had been directed to them. The barriers that had impeded societal response to the entire epidemic affected drug users particularly acutely. Among these were lack of knowledge about the affected populations; social distance between researchers and affected populations; and legal and institutional impediments to actions, including the initial resistance of the drug treatment system to do HIV education and the federal ban on funding syringe exchange (Des Jarlais and Friedman, 1988; Turner et al., 1989).
Looking back, it is perhaps unfortunate that the first major drug abuse-related policy initiative advocated by the now mobilized “AIDS community” was syringe exchange. While of incontrovertible effectiveness in reducing the transmission of HIV and other blood borne infections among injecting drug users (see, for example, Jones and Vlahov, 1998), syringe exchange galvanized the opposition of drug treatment providers aligned with conservatives against the AIDS community. The same issue highlighted a second division—between some prominent African-American community leaders and the then predominantly white AIDS community.
This early fissure helped to allow the AIDS community to evolve into the AIDS services sector without inclusion of drug treatment providers (or, for many years, consideration of needs of drug users beyond sterile syringes). The largely abstinence-based substance abuse treatment system, in turn, found itself to be an isolated advocate for “drug treatment on demand” as an alternate approach to prevention of HIV transmission among injecting drug users. Some AIDS advocates responded hostilely to this call for enhanced drug treatment capacity as they viewed it as undermining advocacy for syringe exchange. This debate helped ossify two systems that were each already isolated from the mainstream health and social services system in opposition to one another.
While the field of HIV prevention has more explicitly addressed the prevention of transmission through injecting behaviors (though, not the integrated needs of injecting drug users for both syringe-related and sexual risk reduction), the HIV care system has remained far less responsive to the special needs of HIV-infected substance users than their prevalence would suggest. Examples abound: the first Ryan White Comprehensive AIDS Resources Emergency (CARE) Act authorized by Congress in 1990 mandated 11 categories of membership on the Title I planning councils, but did not include drug treatment providers, representatives from state substance abuse agency, or consumers who were substance users. In the 1996 reauthorization, a requirement for one representative of drug treatment providers was added. In the 2000 version, additional language was added about the need for the consumer representatives (as well as services allocations) to reflect the epidemiology in an area. As our past work has documented, Ryan White planning councils have largely not assessed, planned for, or allocated funds for the special needs of active substance users, including for substance abuse treatment, nor have they addressed particular barriers in receipt of HIV care (Finkelstein et al., 1999, 2001). As the following report will demonstrate, the conceptual divide between substance use and HIV has permeated research, data collection, planning, financing, and service delivery. Unfortunately, the place where complete integration and synthesis remains is within the estimated 360,000 individuals in the United States currently coping with both issues.
IDENTIFICATION OF THE AFFECTED POPULATION
Difference conceptualizations of the problems of HIV infection and substance abuse at the national level have resulted in no integration of data about HIV and substance use. As a result, gaining an accurate picture of the scope and nature of substance abuse among those with HIV is difficult.
Centers for Disease Control Surveillance
The national HIV surveillance system, with mode of transmission as its organizing principle, collects data on HIV related to injection drug use. As of 2002, the CDC estimates that approximately 800,000–900,000 people are living with HIV or AIDS in the United States, with 40,000 new infections occurring each year. Of these new infections, an estimated 25 percent (10,000 each year) are directly attributable to injection drug use. Of AIDS cases among women, 58 percent are related to injection drug use or sex with partners who inject drugs. Injection drug use is associated with 26 percent of all AIDS cases among African Americans, 31 percent among Hispanics, and 19 percent among whites. Overall, the CDC estimates that that injection drug use, directly and indirectly, accounts for 36 percent of AIDS cases in the United States. Because they are capturing transmission mode, CDC surveillance does not provide information on current drug use, and by focusing exclusively on injection drug use, these numbers do not reflect the extent to which non-injected substance use contributes to the spread of HIV/AIDS. As the CDC explains, “users trade sex for money or drugs, or they engage in risk behaviors when high.” The CDC’s observations have been confirmed by several studies of drug users’ sexual risk behavior (Kra et al., 1998; Neaigus et al., 2001; Tun et al., 2002). Nor, obviously, are the CDC data on mode of transmission sufficient for answering the question of how many of the people currently living with HIV/AIDS are also current active substance users.
SAMSHA Substance Abuse/Use Data
While the CDC data are limited by their focus on transmission through injection drug use, national data on substance use from Substance Abuse and Mental Health Services Administration’s (SAMSHA) National Household Survey on Drug Abuse (NHSDA) do not address HIV. The data do help illuminate the tremendous scope, variation and complexity of substance use in the United States. According to SAMSHA, an estimated 14 million Americans—6.3 percent of the population—use illicit drugs (SAMSHA, 2001a, 2001d). National data also reveal that drug use differs significantly by age, race, and gender (Office of National Drug Control
Policy, 2001; SAMSHA, 2001a) and is further complicated by overlapping issues, such as lack of access to welfare and health insurance benefits, unemployment, lack of education, and poverty (SAMSHA, 1998, 2001a, 2001b, 2001d; Tobias et al., 2002).
National data also indicate that type and rates of drug use vary significantly by geography. For example, even though metropolitan areas have higher rates of drug use overall, heroin use rates are increasing the fastest in non-metropolitan areas. While 97 percent of injection drug admissions in the Northeast were for opiates, primary methamphetamine injection was more prevalent in the Midwest and West, and primary cocaine injection was more prevalent in the Midwest and South (SAMSHA, 2002a). The variation in these numbers points to the fact that meaningful drug use data—useful for services and planning—must be local.
Nationally Representative Sample: HCSUS Study
Despite these indications that differences in locale and demographics are important to understanding substance use within a population, there is a dearth of national data that reflect the scope and variety of drug use among people with HIV/AIDS. The one nationally representative sample of people with HIV is the HIV Cost and Services Utilization Study (HCSUS)—a survey of people in care—that found that close to 40 percent of the sample reported using an illicit drug other than marijuana and that 12 percent screened positive for drug dependence (Bing et al., 2001). This same study also found that almost 50 percent of the sample screened positive for mental health disorders and that screening positive for a psychiatric disorder was independently associated with screening positive for drug dependence (Bing et al., 2001). This study was not designed for use in planning services and its usefulness for this purpose is limited because it obscures regional variations, not only in substance-using behavior, but also in systems of HIV care that are based on local financing and service capacity.
Inferences from Non-representative Samples
Other studies on HIV-infected substance users are not drawn from representative samples, so generalizations must be made cautiously, if at all. Nonetheless, these studies do suggest that drug use among those with HIV is both widespread and varied. One study of patients presenting for substance abuse treatment in an urban setting found that, of those who were HIV positive, 63 percent injected drugs, 17 percent used crack or cocaine, and 20 percent used alcohol (Samet et al., 1999). According to data from the Women’s Interagency HIV Study, a longitudinal multi-site study, 19.7 percent of HIV positive women in the sample reported using crack within
the last six months, 15.4 percent reported using cocaine, and 8.8 percent reported using injecting drugs—rates lower than those among HIV-negative women in the sample (Wilson, Massad et al., 1999). In a population-and facility-based study of 9,735 men who have sex with men (MSM) from twelve states and metropolitan areas, Sullivan et al. found that 51 percent had used marijuana, 31 percent non-injected cocaine, and 16 percent crack cocaine in the five years proceeding the interviews (Sullivan et al., 1998). They also found that white MSM were more likely than referent (mostly Hispanic) MSM to report using hallucinogens, marijuana, nitrites, methamphetamines and diazepam, while black MSM were more likely to report using non-injected crack cocaine. In addition, use of injected stimulants was higher among MSM residing in the West than in the East. While some studies have found that HIV-positive drug users are more likely to modify drug-related risk behaviors upon receiving their HIV test results than their HIV-negative counterparts (Celentano et al., 1994), others studies found no appreciable decrease in drug use or injection behaviors among recently tested injection drug users (IDUs) (Brogly et al., 2002).
Although HCSUS provides a representative sample of HIV-infected people in care, far less is known about HIV-infected substance users not in care. According to the CDC, close to 50 percent of (or 400,000) people with HIV/AIDS are not in care. If we apply the HCSUS finding that 40 percent of those in care are currently using substances to the 400,000 who are out of care, we estimate 160,000 HIV-infected substance users are out of care. However, this is likely to be an under-estimate of the numbers of HIV-positive drug users out of care because drug users face more barriers to care than other populations (as the following section describes) and are almost certainly over-represented among those out of care. Therefore, if we conservatively estimate that 50 percent of those out of care (vs. 40 percent of those in care) use drugs, 200,000 may be a more accurate estimate of the number of HIV-infected substance users not in care. Using the CDC and HCSUS date we derive an estimate that there are 360,000 people with HIV who actively use substances (of whom an estimated 200,000 are out of care and 160,000 are in care).
HEALTH CARE NEEDS AND BARRIERS FACING HIV-INFECTED SUBSTANCE USERS
HIV-infected substance users have multiple and complex needs that require services from a variety of sources. We conceptualize the HIV-related care needs of active users in three concentric circles, with the inner circle comprising HIV/AIDS medical care, the middle circle representing the con-
tinuum of available substance use services, and the outer circle comprised of ancillary services that enhance access to both HIV care and substance use treatment.
HIV care includes
primary care in which clients are supported to adhere to care and stay in care;
specialty care for HIV, Hepatitis C, tuberculosis (TB), and mental health services; and
on-going, intensive social services and case management to support treatment adherence and staying in primary and specialty care.
Substance use treatment services include
access to detox on demand;
access to a continuum of drug treatment modalities, appropriate for clients in various circumstances; and
harm reduction and recovery readiness services that link clients to entitlements, basic survival services, and primary care.
Ancillary services include
employment readiness assistance; and
services than enhance access, including transportation, childcare, and escort services if needed.
HIV-infected substance users often face a health and social services system that stigmatizes them and erects multiple barriers to providing the care they require. As a consequence, their patterns of health care utilization and the quality and continuity of care they receive are far from optimal. In addition, public policies that penalize them because of their substance use serve as a barrier to the receipt of services that promote stability and can facilitate maintenance in substance abuse and healthcare treatment. While the following section is divided into barriers to HIV care and to substance use treatment, as will be clear, the crosscutting underlying barriers of poverty and lack of entitlements affect both.
Barriers to HIV Care
Knowing one’s HIV status, seeking HIV care early, accessing continuous care from providers and in settings with HIV expertise, and receiving
and adhering to a regimen of highly active antiretroviral therapy (HAART) all contribute to positive health outcomes for people with HIV/AIDS.
Delayed entry into HIV care
While access to HIV care enhances one’s chances of survival, many people neither know their HIV status nor seek medical care when they do know their status. As discussed earlier, substance users are likely overrepresented in the estimated 50 percent of people with HIV/AIDS who are not in care. Substance use has a demonstrated association with delayed HIV care seeking. One study of an urban population found that the average duration between acquiring HIV and seeking primary HIV health care was 8.1 years (Samet et al., 2001). Another study of outpatient visits in two urban hospitals found that 39 percent of patients delayed care seeking for one year, 32 percent for more than two years, and 18 percent for more than five years (Samet et al., 1998). In these studies, injection drug use was associated with delayed care seeking. One study of HIV-positive crack cocaine smokers found that one-third of the study population had not seen a provider for HIV-related care in the past year (Metsch et al., 2001). Delayed care seeking could be prevented by increasing the availability of outreach services to substance users not in HIV, mental health, or substance abuse treatment (Raveis et al., 1998).
When substance users do access care, studies have shown that they are more likely to do so sporadically and in emergency rooms (ERs). Chronic drug users are less likely to have a regular source of health care and are more likely than non-drug users to utilize emergency room and inpatient care (Markson et al., 1998; Laine et al., 2001; Welch and Morse, 2001). Emphasizing the importance of setting for health outcomes, a recent longitudinal study of CDC data found that HIV-infected individuals who received a greater proportion of their care in the ER had a worse survival prognosis than those who received more of their healthcare in an outpatient clinic setting (Montgomery et al., 2002). Long waiting times and waiting lists for appointments are common in facilities where substance users receive care (Weissman et al., 1995; Weiss et al., 2000).
In these settings, substance users are less likely to encounter providers with HIV expertise, which has been shown to enhance health outcomes (Kitahata et al., 1996; Markson et al., 1998). Furthermore, provider inexperience poses a real problem to addressing substance users’ needs and affects substance users’ willingness to further seek health care. Overworked and under-trained physicians are often unable to give substance users the
time that would be required to address their substance use, mental health, and health care needs (Weiss, Kluger et al., 2000).
Receipt of standard of care
The association of HAART with decreased morbidity and increased survival is clear. However, studies have shown that substance users are less likely to receive HAART than non-users (Solomon et al., 1998; Celentano et al., 2001; Metsch et al., 2001; Turner et al., 2001)—a clear marker that HIV-infected substance users are not getting the same level of care as their non-using counterparts. One such study found that only 34 percent of HIV-positive crack cocaine smokers in care received HAART (Metsch et al., 2001). ALIVE—a longitudinal study of the natural history of HIV infection in Baltimore—found that consistent drug use was associated with a 58 percent decrease in the probability of initiating HAART (Celentano et al., 2001).
One reason fewer substance users receive HAART is that many providers believe that substance users are less likely than non-users to appropriately adhere to medication regimes (Bamberger, Unick et al., 2000; Bogart, Kelly et al., 2000; Bogart, Catz et al., 2001; Ramos and Tiger, 2001). They may also be concerned about the interactions between HIV medication, illicit drugs, methadone, and psychotropic medications. While it is true that some HIV medications can increase the metabolism of methadone, causing opiate withdrawal symptoms (Munsiff, 2002), this issue can be addressed by adjusting dosages. However, medical care providers’ fears about these interactions and uncertainty about how to address them often prevent them from prescribing HIV medication in the first place (Ramos and Tiger, 2001).
Substance use and adherence
Despite providers’ concerns about substance users, the data on substance use and adherence point to a more refined approach than simply refusing HAART to all substance users. Some studies have, indeed, found an association between active substance use (particularly crack cocaine use) or heavy alcohol abuse and lower adherence (Cook et al., 2001; Hinkin et al., 2002; Mannheimer et al., 2002). Of note, however, substance abuse may also be associated with depression or other affective disorders that can affect adherence (Ekstrand et al., 2002; Mannheimer et al., 2002; Perry et al., 2002). This association may in turn further complicate adherence, while substance abuse symptoms may mask symptoms of depression or vice versa.
When discussing adherence, distinguishing between active and former substance use is important. While a few studies have shown a relationship
between substance abuse history and adherence, most fail to demonstrate an association. (Many studies fail to distinguish between current and past substance use at all—e.g., those that employ “route of transmission” as a variable.) Importantly, substance abuse is often not a static phenomenon—on the contrary, many patients cycle between periods of heavy use and moderate use, or between use and no use. Among 685 patients in an inner-city HIV clinic followed over 30 months, 64 percent of those who reported heroin, cocaine, or heavy alcohol use at any semi-annual survey changed their substance use status (from use to non-use or vice versa) at least once during the study period. Moreover, such changes were temporarily associated with antiretroviral use, adherence, viral suppression, and CD4 counts (Lucas et al., 2002).
As Andrews and Friedland note, however, even with respect to current substance use, it is not merely its presence or absence but its severity that appears to be associated with adherence (Andrews and Friedland, 2000). Depending on individual patient dynamics, even current substance abuse does not preclude good adherence. With appropriate support, many substance users are perfectly capable of achieving high levels of adherence (Conway et al., 2002).
In addition to concerns about adherence, physicians hold other beliefs about substance users that may impact their quality of care. For example, studies have shown that inexperienced physicians commonly under-utilize pain medication for substance users despite its necessity for HIV-related conditions fearing that they will exacerbate their patient’s drug dependence and/or attributing their patient’s pain symptoms to drug-seeking behavior (Breitbart et al., 1999; Breitbart and Dibiase, 2002). Provider suspicion of “manipulative behavior” on the part of their substance using patients often affects both the level of trust between the provider and patient and the quality of care the patient receives (Munsiff, 2002). Perhaps the most telling indicators of provider bias is pervasive ignorance about the medical needs of substance users and/or an unwillingness to treat substance users (Ramos and Tiger, 2001). In recently-conducted interviews with primary care providers serving active substance users in New York City, one provider explained, “They [providers] are not used to the population and they have prejudices” (Ramos and Tiger, 2001).
Substance users’ attitudes
Like providers’ attitudes about substance users, substance users’ attitudes about health care providers and the health care system may also
impact the quality of their care. For example, some HIV-positive substance users, responding to long-standing community distrust of health care providers and/or individual negative experiences, may refuse prescriptions for HIV medications or modify the prescription regimen recommended by their primary care provider (Mantell and Cassidy, 2001). Negative experiences with the social service system also affect the level of trust and communication between healthcare providers and substance users. Fearing disapproval or even the loss of public assistance such as housing and income support, users are often unwilling to disclose their substance use to their providers (Weiss et al., 2000; Tiger and Finkelstein, 2002).
The attitudes and fears of substance users seeking care are grounded in the reality of systemic barriers. The 1996 welfare reform law allows the denial of benefits (including Medicaid) to recipients convicted of drug felonies; public housing is denied to convicted drug felons and their family members; and even liberal states, like New York, have enacted provisions where refusal of a referral to substance abuse treatment or unsuccessful completion of that treatment can result in loss of income support and Medicaid coverage. System level barriers play a significant role in preventing HIV-infected substance users from accessing, maintaining, and receiving optimal care. Even after substance users access care, barriers within the service system frustrate the efforts of even the most knowledgeable and well-intentioned providers. For example, providers’ efforts to refer their substance using patients to additional sources of care are often met with institutional resistance from other health and social service providers (Stanton et al., 2000; Ramos and Tiger, 2001).
Barriers to Substance Abuse Treatment
The lack of supportive services in substance abuse treatment deters many of the populations most in need of treatment. For example, 75 percent of treatment facilities do not offer childcare—a factor which can have particularly troubling consequences for women mandated into treatment through the criminal justice system whose parental rights may be terminated if they are unable to care for their children (Tiger and Finkelstein, 2002). In addition, few programs offer services for pregnant women (Grella, 1997). This lack of supportive services is especially acute for HIV-positive clients, whose access to treatment is also restricted because of the dearth of treatment facilities equipped to address their medical needs (SAMSHA, 1999).
Funding constraints often prevent programs from focusing on substance
users’ multiple needs. Moreover, it is difficult to find staff who are knowledgeable about substance use, HIV, and mental health (Tobias et al., 2002). These barriers are especially acute in rural areas where long travel distances to medical facilities, a shortage of trained staff, transportation barriers, and community stigma toward HIV and substance abuse are common (Heckman et al., 1996; Heckman et al., 1998; Whetten-Goldstein et al., 2001). Furthermore, low-threshold harm reduction programs which can help link substance users to outpatient care and drug treatment are relatively scarce (Strathdee et al., 1999).
EXISTING SUBSTANCE ABUSE TREATMENT AND HIV CARE SYSTEMS: DO THEY MEET THE NEEDS?
Two key systems with which many HIV-positive substance users interact—the substance abuse treatment system and the HIV care system—are described below. In addition to being fragmented from one another, each has severe internal limitations in addressing the needs of this population.
Substance Abuse Treatment System
The substance abuse treatment system in the United States—a complex mix of services, settings, providers, and funding streams—has developed over the past 30 years in relative isolation from the health and social systems. Furthermore, deep divisions within the substance use treatment system, reflected in different paradigmatic approaches and program modalities, have resulted in fragmentation and little communication among the variety of programs and facilities serving substance users. A review of the data on the need for treatment and the system’s capacity highlights the inadequacy of existing resources to meet HIV-infected substance users’ substance abuse treatment needs.
Funding of Substance Abuse Services
To meet the need for substance abuse services, a complicated system of public funding has developed. In fact, many treatment programs are designed around the requirements and limitations of various funders (SAMSHA, 2000). Approximately $12.6 billion is spent per year on substance abuse treatment and prevention, $7.3 billion of which is publicly funded (SAMSHA, 2000). Overall, $3.6 billion of public funds are spent on substance abuse treatment (Office of National Drug Control Policy, 2002). The amount of substance abuse treatment covered by public funds has been steadily increasing since the 1980s, currently accounting for two-thirds of all treatment expenditures (Mark et al., 2000). In 1997, state substance
abuse agencies paid for 31 percent and SAMSHA substance abuse block grants paid for 29 percent of treatment services. Other state agencies contributed 5 percent, county and local agencies 9 percent, other sources 18 percent, and other federal government agencies 7 percent, including Medicaid, Medicare, the Department of Veterans Administration, and the Department of Justice (NASADAD, 1999).
Most funding for substance abuse treatment come from SAMSHA and is overseen by the Center for Substance Abuse Treatment (CSAT). In fiscal year 2002, close to $2 billion of SAMSHA’s $3.1 million budget was spent on Substance Abuse and Prevention (SAPT) block grants to states, which are formula awards based on population size and augmented with matching funds. States may use up to 35 percent of their block grants for prevention and treatment of alcohol, 35 percent for the prevention and treatment of other drugs, and 20 percent for primary prevention activities. States must also use their block grants to serve pregnant injection drug users, pregnant substance users, and IDUs (National Alliance of State and Territorial AIDS Directors, n.d.). Beyond these stipulations, states have considerable discretion over how this money is spent. This discretion has resulted in wide variations in the substance abuse treatment systems among states.
Little information exists on the internal planning processes states use to determine how the block grant funding is allocated. In their annual plan submitted to SAMHSA, states are required to detail how they will spend their block grant funding. The federal government requires states to conduct an annual needs assessment and to report treatment need based on age, race, sex, and ethnicity. How the needs assessment is conducted and how it is used to develop the plan for spending the block grant funds is left to the discretion of individual states.
While SAMSHA has several funding streams dedicated to special populations, two in particular are related to HIV/AIDS. In 1992, SAMSHA initiated an HIV set-aside, requiring states with AIDS case rates of 10 per 100,000 to allocate 2–5 percent of their SAPT block grants to support HIV Early Intervention Services, including HIV counseling and testing for substance users and their partners in geographic areas with the greatest need (National Alliance of State and Territorial AIDS Directors, n.d.). Despite the potential of this set-aside to address injection drug use and HIV, a 1999 survey found that less than 50 percent of state AIDS directors knew about the set-aside and only 29 percent knew how the set-aside was being used in their particular states (National Alliance of State and Territorial AIDS Directors, n.d.).
Federal Medicaid dollars cover only 7 percent of substance abuse treatment expenditures. There are no substance abuse treatment services included in the federally mandated Medicaid benefit package, and while states may opt to add significantly to that, (expensive) residential drug treatment in drug treatment facilities is not covered. To fully understand Medicaid’s role in financing substance abuse treatment services requires a separate analysis of each state’s Medicaid eligibility requirements and benefits package (with corresponding amount, duration, and scope specification). This picture is further complicated by the widespread use of behavioral health managed care plans to deliver the substance abuse and mental health benefits, even in states without other Medicaid managed care. Such an analysis is beyond the scope of this paper, but can be found in C. Lubinski’s paper (unpublished), which provides a picture of the categories of services covered as well as a detailed analysis of the variation among five example states in terms of services covered.
Medicaid is problematic as a source of substance abuse treatment for people with HIV because of eligibility requirements, restrictions on the types of services covered, and low reimbursement rates. To quality for Medicaid, individuals must meet financial and categorical requirements. Categories covered include beneficiaries of Supplemental Security Income (SSI), low-income parents and children, low-income pregnant women, the Medicare eligible who meet Medicaid income guidelines, and “medically needy” people who meet a categorical requirement but exceed the financial eligibility. Individuals in this latter category qualify by spending down their income on medical costs to levels set by the 35 states offering such programs. The numbers of people with HIV who qualify for SSI have decreased with the successes of the medical management of HIV (Westmoreland, 1999). In addition, SSI eligibility for individuals whose drug and alcohol addiction was the material factor for the determination of their disability ended in 1997 (Tiger and Finkelstein, 2002). Thus, many low-income substance users with HIV are ineligible for SSI, and, if not parents, are not included based on other Medicaid eligibility categories and are not, therefore, eligible for Medicaid no matter how poor they are. Despite the availability of “medically needy” eligibility, many substance users with HIV do not meet the necessary categorical requirements (Westmoreland, 1999).
The low reimbursement rates associated with Medicaid can affect a state’s substance abuse treatment system by discouraging qualified providers from delivering services (American Academy of Pediatrics, 2001). These rates have contributed to the scarcity of Medicaid-funded treatment slots. The low reimbursement rates are especially problematic when providers must address their patients’ need for a complex array of services
including HIV care, substance abuse treatment, and mental health services (Gourevitch, 1996).
Variations in reimbursement rates, eligibility requirements, and funded services lead to differences between states (as to the Medicaid covered substance abuse services offered and for whom). As C. Lubinski’s paper (unpublished) details, geography plays an important role in access to substance abuse treatment for people with HIV as demonstrated by differences in eligibility and covered services between the states she examined: Florida, Georgia, Illinois, New York, and Texas. For example, to qualify as medically needy an individual must spend her/his income down to 27 percent of the federal poverty level in Florida, 31 percent in Georgia, 42 percent in Illinois, and 87 percent in New York. Texas does not offer coverage under this category. Medicaid does not reimburse inpatient substance abuse treatment services in Georgia, outpatient treatment in Texas, and residential treatment in any of the five states. In all five states, Medicaid reimburses for clinic visits, day treatment, evaluation and testing, individual and family therapy, group therapy, and detoxification services. However, the scope and duration of these services differs considerably among states.
Lacking System Capacity
According to SAMSHA, there are an estimated 13 million substance abusers in the United States, 10 million of whom do not receive any treatment for their substance use (SAMSHA, 2000). The substance use treatment shortage is especially acute for people in prisons and jails, where only 15 percent of inmates receive treatment but where 30 percent of inmates in federal prisons and 70 percent in state prisons need such treatment (Schneider Institute for Health Policy, 2001). Close to half of existing treatment slots are filled by people referred through the criminal justice system, which is the largest single source of referrals to substance abuse treatment (SAMSHA, 2002c). Significantly, very few people are referred to treatment either through their health or mental health provider (9.4 percent), or through a welfare or social service agency (7.2 percent) (SAMSHA, 2000).
Because substance abuse treatment systems vary greatly from state to state, the gap between treatment availability and the need for treatment also varies. While waiting lists and treatment shortage are common, the dearth of services is particularly acute in rural and non-metropolitan areas where people may have to travel long distances for substance abuse treatment (SAMSHA, 2000; Whetten-Goldstein et al., 2001). The hours of treatment, as well as supportive services such as transportation, may be severely limited. The availability of methadone maintenance, widely considered an effective treatment for opiate addiction, varies considerably as does the availability of low threshold harm reduction services.
Urban areas also struggle with treatment shortages. For example, in New York traditional drug treatment serves only approximately 42,000 of the state’s estimated 555,000 substance users. In addition, 30,000 of these treatment slots are for methadone maintenance, despite the fact that the majority of (non-marijuana) drug users in New York City are addicted to cocaine or a combination of drugs (Finkelstein and Vogel, 2000).
Further compounding the scarcity of appropriate treatment slots is the chronic, relapsing nature of substance abuse. In 1998, 58 percent of substance abuse treatment admissions had at least one prior treatment episode (SAMSHA, 2002b), and 13 percent were for people who had been in treatment five or more times previously (SAMSHA, 2002c). Therefore, simple comparisons between the numbers of active users in need of treatment and the number of treatment slots fail to account for the frequency of multiple drug treatment admissions.
Lack of Appropriate Capacity
Even when treatment slots are available, the treatment slot might not be appropriate for the person seeking treatment. Despite the existence of several treatment modalities, the bulk of state funds are used on outpatient treatment, which is provided in two-thirds of all publicly funded substance abuse treatment facilities. Residential rehabilitation is offered in 25 percent of facilities, partial hospitalization in 19 percent, and outpatient detoxification in 13 percent (SAMSHA, 1999). Since the 1980s, there has been a shift away from hospital-based services provided by medical professionals.
Furthermore, specialized services for people with mental illness and with HIV are limited, despite clear evidence that substance use, mental illness, and HIV commonly co-occur. According to SAMSHA’s Uniform Facility Data Set, only 45 percent of programs surveyed indicated that they offered facilities for individuals dually diagnosed with a co-occurring mental illness, and only 22 percent said they offered programs for people with HIV/AIDS (SAMSHA, 1999). The majority of drug treatment programs for people with HIV/AIDS were offered in Veterans Administration facilities, reaching a small and circumscribed group of people with HIV/AIDS (Kates and Sorian, 2000).
Obtaining information about resources expended for substance abuse treatment is difficult. Nonetheless, an examination of the available estimates points clearly to the need for augmented funds. CSAT estimates that the average cost per episode of outpatient treatment (excluding methadone) is $2,051 and $4,160 for short-term hospital treatment (Lundenberg, 1999).
Overall, an estimated $12.6 billion is spent on substance abuse treatment from public and private sources (SAMSHA, 2000). A crude calculation shows that just under $1,000 is available per person for treatment, less than half the cost of one outpatient treatment episode and less than a quarter needed for one inpatient episode. While in actuality most active users receive no treatment, this calculation illustrates the inadequacy of current resources.
HIV Care System
The HIV treatment system has developed independently from the substance abuse treatment system, despite the role that substance abuse has played in the epidemic. Like the substance abuse treatment system, HIV care is internally fragmented due to limited coordination among the various funding sources (Kates and Sorian, 2000). This internal fragmentation complicates the ability to plan for services across the HIV and substance abuse treatment systems.
Public funding for HIV care is provided predominately through Medicaid, Medicare, the Ryan White CARE Act, and the Veterans Administration. Medicaid is the largest single payer of HIV services, supporting care for the 40 percent of people living with HIV/AIDS who receive care. In 2000, Medicaid’s HIV/AIDS expenditures exceeded $2 billion and were matched by states with another $1.7 billion. Medicaid funds a range of base services that states can augment, leading to widespread differences in the scope and availability of HIV services between states (Levi et al., 2000). While prescription drugs are not mandatorily covered, all states provide some sort of drug coverage for Medicaid recipients, although this coverage differs considerably between states. Medicare, serving 28 percent of people with HIV/AIDS and providing 23 percent of all governmental funding spent on AIDS care, funds hospital and outpatient care for some people with disabilities (after a 29-month wait) and the elderly (Alagiri et al., 2002).
Ryan White CARE Act
The Ryan White CARE Act is the third largest payer of HIV/AIDS services and the largest federal program geared solely towards HIV/AIDS in the United States. The total funding for the CARE Act has grown from $220,553,000 in its first year, 1991, to $1,910,587,000 in 2002, serving an estimated 533,000 people.
Despite the increase in funding, few Ryan White resources have been devoted to substance abuse treatment or to services targeted explicitly for substance users. An examination of funding allocations of Titles I and II to meet the needs of substance users with HIV shows the extent to which
substance abuse has remained a relatively low priority for Ryan White funds despite its centrality to the epidemic.
The goal of the CARE Act’s Title I—intended to provide “emergency relief” to eligible metropolitan areas (EMAs) hardest hit by HIV/AIDS—is to facilitate access to HIV/AIDS care by filling gaps in covered services, covering ineligible populations, and funding HIV-related support services. Funding allocation for Title I funds are determined on the local level by a community planning council comprised of consumers and providers of HIV and related services. The planning council prioritizes the EMA’s service needs and allocates percentages of the EMA’s Title I award toward these service categories. The local control afforded by Title I’s structure gives planning councils the latitude to determine and prioritize the components of appropriate care for substance users and to address barriers to care. Title I’s gap-filling function and the discretion afforded by local level control make it particularly suited to respond to the needs of substance users with HIV and to address gaps in the EMA’s substance abuse treatment system.
Within Title II, the majority of the funds go towards supporting HIV medication through the AIDS Drugs Assistance Plan (ADAP), but Title II also funds home and community-based health care, health insurance continuation, and medical and support services. Medical and support services can be allocated by the state directly and/or through HIV care consortia that plan and deliver services. Services for substance users, when funded, come from this pool of money. The HIV care consortia, comprised of health and social service providers, are responsible for assessing needs and organizing, contracting, and delivering HIV services. Unlike Title I, a formalized planning mandate does not accompany Title II funding. However, both the state and/or the consortia must conduct needs assessments and develop plans for allocating funding based on this and other data.
Funding substance abuse treatment
Despite the local level control afforded by Title I and the regular assessment of need required by Titles I and II, both have been slow to respond to the needs of substance users. Title I planning councils often allocate funding with an incomplete understanding of substance users’ needs or the substance abuse treatment system’s capacity (Finkelstein et al., 1999; Finkelstein et al., 2001). Likewise, because of Title II’s loose assessment and prioritization process, states and care consortia are not necessarily responsive to the changing epidemic (Levi et al., 2000). Based on 2001 allocation data compiled by HRSA, 6.9 percent of Title I funds and 1.5 percent of Title II’s medical and support services funds are allocated to the “substance
abuse treatment and counseling” category, which includes substance abuse treatment as well as supportive services. These numbers, however, do not reflect spending on services used by substance users that fall under other prioritized categories (e.g., mental health, case management, or primary medical care).
While a recent survey of Title I EMAs indicated that 88 percent allocated funding for some sort of substance abuse treatment, the type of services and amount of funds allocated to treatment vary considerably by EMA (Tobias and Drainoni, 2001a). The most common treatment funded is outpatient counseling followed by residential treatment and methadone maintenance. When allocated to substance abuse treatment, Title I funds are usually used to purchase existing treatment slots for targeted populations (e.g., African Americans, women, Latinos) (Tobias and Drainoni, 2001a). Few EMAs, however, use Title I funds to develop HIV-specific treatment programs, incorporate substance abuse treatment into primary care settings, or fund HIV primary care in substance abuse settings. Overall far fewer Title II funded programs (only 38 percent of those surveyed) provide any substance abuse treatment through Title II (Tobias and Drainoni, 2001b).
To explain the lack of funding allocated to substance abuse treatment, states cite systematic barriers (e.g., lack of capacity) and programmatic barriers (e.g., lack of services for women with children) as the major obstacles. While many Title I grantees are able to identify barriers to care for substance users, few direct Title I funds to address these barriers (Tobias and Drainoni, 2001a). For example, 58 percent of grantees identified lack of residential treatment as a problem, but only 35 percent used Title I funds to augment this treatment (Tobias and Drainoni, 2001a).
In a 1999 study of five EMAs, reasons offered by grantees, planning council staff, and members for not funding more substance abuse treatment, despite its consistent identification as the biggest unmet need for active substance users, included that substance abuse treatment is (a) the responsibility of another funder; (b) subject to the “payor of last resort” rule, thus ineligible for Ryan White funding; (c) an expensive service without a guaranteed outcome; (d) like a bottomless pit that will drain all available funds; and (e) incorporated or accomplished by other services, such as harm reduction (Finkelstein et al., 1999). The same study suggested that outreach efforts to substance users were impeded by the perception that clients must have documented their HIV status before they are eligible for Ryan White funded services. As a result, the 2000 reauthorization of the Act explicitly allowed funds to be used for targeted outreach and case
finding. However, less than 8 percent of the EMAs targeted Title I funds for such outreach to substance users in their 2003 applications.
In planning services, most EMAs rely heavily on local epidemiological data, which are helpful in illuminating the connection between injection drug use and HIV. However, these data do not provide information on the substance abuse services needs of drug users with HIV or how these services can be incorporated into a continuum of HIV care. Many Planning Councils rely almost exclusively on the perspectives of the substance abuse providers and consumers with a history of substance use on the Planning Council. While important, these perspectives often reflect one individual’s experience or one programmatic perspective rather than the range of perspectives needed to create a continuum of HIV-related substance abuse treatment services. Moreover, planning councils rarely utilize information on models of integrated HIV and substance abuse treatment that have been shown to be effective in maintaining individuals in both substance abuse treatment and primary care.
The ability of both Title I and Title II to address substance use is limited by a specific locality’s treatment infrastructure. Surveys of Title I EMAs and Title II programs found that lack of capacity was regularly cited as a systemic barrier to treating substance users (Tobias and Drainoni, 2001a; Tobias and Drainoni, 2001b). Programmatic barriers identified included few services for women with children, dearth of harm reduction services, lack of substance abuse providers with HIV training, lack of screening in primary care settings, and few linkages between social services, HIV medical care, and substance abuse treatment. Strikingly, despite their ability to identify these barriers, Title I and Title II planning bodies have not used the funds under their control to address them.
MODELS OF CARE
Barriers to meeting the needs of HIV-positive substance users exist on multiple levels. Systemic fragmentation in the HIV and substance abuse treatment systems often prevents the coordination of services. The capacity of the substance abuse treatment system is inadequate to meet the substance users’ treatment needs. Barriers at the provider and client level impede substance users’ receipt of optimal health care. Current planning for the substance abuse and HIV treatment systems do not, generally, address these issues.
While systemic level barriers are difficult to overcome, thoughtful, complex, and localized planning can address programmatic barriers and
their implications for HIV-positive substance users. Ideally, this level of planning facilitates an in-depth examination of substance users’ needs, barriers to care and the capacity of the local health care, substance abuse treatment, and social services infrastructure and allows planners to adopt programmatic models to address these needs and barriers.
Characteristics of Effective Programs
Existing research demonstrates that co-located health and substance abuse treatment are effective at maintaining substance users in care (O’Connor et al., 1992; Selwyn et al., 1993; Rompalo et al., 2001; Friedmann et al., 2001b). Flexible program hours and scheduling, services such as case management, and a multidisciplinary program staff are effective at meeting HIV-positive substance users’ multiple needs (Weissman et al., 1995; Markson et al., 1998; Newschaffer et al., 1998; Tobias et al., 2002). Comprehensive models focus on integrating HIV and substance abuse treatment and have flexible approaches to meeting substance users’ needs. They also contain program elements, such as housing, transportation services, case management, services for women with children, legal assistance, and benefits advocacy that help substance users to better access the health care system and to avoid penalties for their substance use. Broad models also focus on outreach to substance users at risk for HIV to engage them into care. In addition, models for skillfully blending the various funding sources available for health, substance abuse, and mental health services demonstrate the efficacy of and necessity for combining resources to address the gaps in allowable services from any single funding source.
Despite the proven effectiveness of these program features, comparatively few HIV-specific resources have been directed toward developing such broadly-focused programs for substance users. While many programs contain some of the elements proven successful, the ones highlighted below are noteworthy because they combine most, if not all, of the program features that have demonstrated efficacy at addressing HIV-positive substance users’ needs.
Examples of Effective Programs
PROTOTYPES, Center for Innovation in Health, Mental Health and Social Services, located in California, serves over 10,000 women and children each year and provides a variety of integrated services for substance-using women with HIV/AIDS and their children. The services provided include residential, outpatient, and day treatment with specialized components for women with HIV/AIDS; residential and transitional services for women recovering from substance abuse; integrated substance abuse and
mental health services; HIV/AIDS medical and social services; counseling and support groups; drop-in centers for homeless women; and job training. In addition, PROTOTYPES has extensive street outreach and intervention programs targeted to women at risk for HIV/AIDS and their children and partners. Through its outreach component, PROTOTYPES links with communities at high risk for HIV and links substance-using individuals to a broad range of health, substance abuse, and mental health care and necessary social services. By focusing specifically on providing services to women and their children, PROTOTYPES is able to eradicate one of the major barriers to care for this population.
Two programs located in areas of high prevalence of both drug use and HIV in the Bronx have developed to address the complex needs of their client population. Montefiore Substance Abuse Treatment Center provides primary medical care within its substance abuse treatment center. The drug treatment component focuses on multiple modalities, including methadone maintenance, individual counseling, group therapy, and 12-step programs. They are also in the process of establishing linkages with two local harm reduction programs and with pharmacies participating in the Expanded Syringe Access Demonstration Program (ESAP). HIV primary care is provided on-site, as are mental health and social support services. Reflecting the depth of service integration, center decisions are made jointly by providers from the substance abuse treatment and medical care components. VIP Community Services provides a broad range of services from street and community outreach programs that stress a low-threshold, harm reduction approach to drug use, methadone, outpatient day treatment, and residential treatment for women and men. VIP provides HIV primary medical care to substance users in the treatment programs as well as people not in treatment. VIP also provides HIV counseling and testing, case management, housing services, and specialized supportive services for women. They, too, have structured referrals to ESAP pharmacies for their injection drug using clients.
The Adult Day Health Program at Bailey Boushay House, located in Seattle, Washington, provides an array of services for people with HIV/AIDS including substance abuse and mental health treatment. The multidisciplinary staff, including nurses, social workers, substance abuse counselors and psychiatrists provides services seven days a week. Through funds from Housing Opportunities for Persons With AIDS (HOPWA), Bailey Boushay also has a housing program that helps its clients find and maintain housing in the community. Funding for Bailey Boushay comes from a broad range of private and public sources, including HRSA, Department of Housing and Urban Development (HUD), state, city, and county funds.
PROTOTYPES, VIP, Montefiore Medical Center, and Bailey Boushay House all utilize a broad range of services including health, substance abuse
treatment, and harm reduction and are actively focused on providing care in communities of high need. By developing programs around a core set of medical and substance abuse treatment services, they are able to address substance abuse and HIV in one setting from a multidisciplinary perspective. Because of the lack of coordinated funding to provide this scope of services, these programs all piece together funding from disparate sources to provide comprehensive care.
A very different model of care entails integrating residential long-term HIV care with methadone maintenance, intensive mental health services, and harm reduction. New York State’s HIV long-term care facilities include both inpatient (skilled nursing facility) and outpatient (AIDS day treatment) institutions. The inpatient facilities all offer HIV medical care as well as skilled nursing care and mental health services. Several, including Highbridge Woodycrest in the Bronx and Rivington House in Lower Manhattan, also offer onsite methadone maintenance. Similarly, in addition to ongoing HIV primary medical care, case management, and adherence support, several of the AIDS day treatment facilities offer additional services targeted especially for substance users ranging from methadone maintenance to on-site syringe exchange (at Housing Works) to 12-step meetings at several of the sites. These facilities also piece together their funding from multiple sources, anchored by enhanced Medicaid reimbursement for the HIV medical care provided. The inpatient facilities do not, of course, receive Ryan White funds.
Integration of funding streams at the systemic level is even rarer than comprehensive models of HIV and substance abuse treatment. Yet, it is at precisely this level that the combination of resources can have its most far-reaching effect. In an effort to achieve this integration, the state of Texas recently initiated NorthSTAR Behavioral Health Pilot Program, combining resources from the Texas Department of Mental Health and Mental Retardation, the Texas Commission on Alcohol and Drug Abuse, the Texas Department of Health, and the Texas Health and Human Services Commission. The funding was blended to provide integrated mental health and substance abuse treatment. While no HIV-specific resources have yet been allocated to this program, the inclusion of Ryan White funding could help develop a comprehensive system of substance abuse, mental health, and HIV treatment at the systemic, rather than programmatic, level.
Comprehensive, integrated services are required to fully address HIV-positive substance users’ many needs. The flexibility of Ryan White funding, combined with its local-level distribution, makes it a potentially important vehicle for achieving this integration. Ryan White funding can be used to build new services for substance users with HIV and to enhance the infrastructure of existing substance abuse treatment and HIV programs to meet the needs of their HIV-infected substance using population. Moreover, the
role of Ryan White funding could be expanded to help bridge gaps in integrating funding at the systemic level to facilitate cross-system programmatic integration.
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