HIV Care and Treatment as Harm Reduction
"As someone who ... worked in one position or another as an advocate for the health care needs of illicit drug users for the past ten years, I was intimately aware of the incredible stigma, discrimination, and outright hostility and disgust injection drug users routinely face when attempting to seek health care services of any kind.. Suddenly, I was my own client, and all those years I'd spent advocating for other drug users ... did not prepare me for the treatment I would also receive as a heroin injector with AIDS."
The struggles to keep drug users alive and healthy in the midst of the AIDS epidemic have yielded many stories of survival and innovative models of healthcare delivery. Pioneering clinics and service agencies integrated HIV care, addiction treatment, mental health, support, and education. Current and former drug users pooled their knowledge about HIV, shared tips on coping with side effects, and became educators and adherence counselors. HIV transformed drug users and the systems entrusted with their care and welfare and challenged everyone to adapt and grow stronger. And finally, after nearly two decades of AIDS-related illness and deaths among drug users, the years 1996-7 brought new hope in the form of effective, three-drug combination treatment for HIV, or HAART (Highly Active AntiRetroviral Therapy).
But for too many drug users, the words quoted above, written on the cusp of the HAART era, still ring true today. HAART has certainly kept a lot of HIV-positive drug users alive and relatively healthy. But it is increasingly obvious -- on the street, in needle exchanges and health clinics, at conferences, and in scientific journals -- that drug users are not benefiting enough from the new treatments. People are still getting sick, and people are still dying -- fewer people, but still too many. The full gains of the HAART era have not yet trickled down to drug users living with HIV.
From Biology to SociologySeveral factors may explain why drug users fare less well on the spectrum of sickness to survival. In crude terms, explanations have fallen into two camps -- biology and sociology. According to the biology camp, mixing drugs and HIV in the same person is a recipe for disaster. Early discussions of drug use and AIDS imagined drug users' bodies as something like an anatomical state of anarchy. The presence of cocaine supposedly made HIV replicate like wildfire, preying on an immune system already weakened by both the "addict lifestyle" and the suppressive properties attributed to substances such as heroin and alcohol. This imagery quickly became entrenched in how all types of people -- healthcare professionals, substance abuse counselors, HIV educators, drug users themselves -- thought and talked about AIDS. Proponents of this view seized upon esoteric data -- "Cocaine makes HIV replicate 25 times faster!" -- derived from in vitro (laboratory) studies.
Test-tube-and-microscope-style science took on a quasi-religious authority, even though nobody knew whether the findings of lab research bore any resemblance to what goes on in actual people's bodies. Indeed, clinical data from long-term studies of drug users living with HIV contradict assumptions that drug use itself inevitably hastens or worsens the course of HIV disease. According to data from the Women and Infants Transmission Study (WITS), a large group (also called a cohort) of primarily African-American and Latina HIV-positive women in the United States, women categorized as "hard drug users" (cocaine, crack, heroin, or any injection drug), did not differ from other women with HIV in CD4 cell percentage, HIV viral load, or survival. Hard drug users did, however, experience more AIDS-defining opportunistic infections, primarily tuberculosis and recurrent pneumonia, infections common in drug users regardless of HIV status.
A smaller but similar study was published in the journal AIDS in September 2004. Fifty-one injection drug users (IDUs) in Amsterdam were followed since they became infected in the 1980s. The study found that differing rates of disease progression in this group reflected variations in immune status at the time of infection, rather than drug use itself. In fact, while the duration of drug use did not predict disease progression, those drug users who had been injecting most frequently when they became infected actually experienced slower declines in CD4 cell counts than IDUs who were injecting less often.
Yet these data do not warrant complacency for the state of HIV care for drug users. A report from Baltimore published in the Journal of AIDS in January 2004 echoed the results of the WITS study. Researchers observed that, while rates of AIDS-defining illnesses have decreased in all groups since the introduction of HAART, these declines were substantially lower among HIV-positive injection drug users. Moreover, a review of data from a large group of people with HIV followed in Switzerland found that death rates (including non-AIDS-related deaths) were substantially higher in HIV-positive injection drug users in the HAART era than in non-IDUs, perhaps related to poorer access to HIV treatment.
The sociology camp, therefore, discounts the clinical relevance of hypothetical interactions between drugs and HIV and/or the immune system. Instead, they point to common themes that determine how well HIV-positive people do in the HAART era: access to care, quality of care, and adherence. People that don't score highly on these criteria have poorer health, lower CD4 cell counts, and less likelihood of having undetectable viral loads. Ample research demonstrates that HIV-positive drug users face high barriers on all three counts, and these problems in turn reflect systemic gaps and shortfalls in broader systems of care that include a lack of housing and support for treatment of drug addiction and psychiatric problems.
Too Little, Too Late?Roughly half the people with HIV in New York City have been classified as "delayers" -- people who test positive for HIV within a year of an AIDS diagnosis and/or enter HIV care late in the course of HIV disease. Not surprisingly, the primary factors associated with delayed testing and care are the interlocking issues of substance use, mental illness, and homelessness. While even "delayers" can respond well to HAART, they may have more difficulty tolerating side effects due to advanced HIV disease, while remaining vulnerable to opportunistic infections until returning to higher CD4 cell levels.
Illicit drug users are, by definition, a class of outlaws -- the drugs they use are illegal, and drug users face a range of sanctions from moral disapproval to police harassment, from losing jobs, custody of children, and homes, to ostracism and imprisonment. The healthcare profession both challenges and reinforces the marginalization of drug users. On the one hand, the medicalization of addiction effectively counters claims that drug use reflects moral weakness by viewing addiction as a disease that requires treatment. But treatment requires bringing drug users under the supervision of qualified experts capable of diagnosing the "truth" of addiction and prescribing the appropriate remedy. In its most extreme, least humanistic forms, the medical model of addiction too often presumes that all illicit drug users live in thrall to their disease, incapable of exercising their wills towards any goal but inherently self-destructive drug-seeking behavior. Thus, even today, the pervasive legacies of stigma and discrimination still keep people away from even the most enlightened, non-judgmental medical providers.
Moreover, simply characterizing HIV-positive drug users as in or out of care fails to capture the fluid dynamics of many drug users' lives, which could be better described as in and out of drug treatment, in and out of jail, in and out of stable housing and employment, and in and out of chaotic patterns of drug use -- sometimes within the space of a single year. As these trajectories bring drug users into contact with disparate systems and services, few programs are equipped to maintain on-going contact with people, much less offer continuity in HIV care. Adequate and appropriate substance use counseling and treatment, mental health care, and permanent housing can provide a crucial foundation of stability and enable further support. Yet these cornerstones of care are precisely those services that are in short supply.
The impact of delayed testing and treatment may have particularly detrimental consequences for drug users. A recent study reopened the question of when to begin HIV treatment, which federal guidelines recommend starting when CD4 cell counts fall below 350. A review of clinical data from a large group of primarily African-American injection drug users in Baltimore -- the AIDS Linked to the Intravenous Experience (ALIVE) cohort -- compared survival rates of HIV-positive and HIV-negative IDUs. In general, HIV-positive drug users had poorer survival rates than the HIV-negative group, as would be expected. However, HIV-positive IDUs who began HAART when their CD4 cell count exceeded 350 had survival rates comparable to HIV-negative drug users. Notably, the gains in survival from beginning HAART at higher CD4 cell levels were most pronounced in a reduction in non-AIDS-related causes of death, including drug overdose as well as viral or bacterial infections such as endocarditis and sepsis associated with injection drug use but not HIV. The study authors suggest that drug users may gain from beginning HIV treatment at a higher CD4 cell level than current guidelines recommend. By implication, earlier HAART may indirectly reduce other health risks associated with drug use, perhaps by strengthening engagement in medical care and other forms of support.
The Baltimore study raises interesting questions when compared to another large cohort of HIV-positive veterans, primarily African-American men, receiving care at the Atlanta Veteran Affairs Medical Center. The Atlanta study, published in the journal Clinical Infectious Diseases in November 2004, compared survival rates according to hepatitis C (HCV) infection, a blood-borne virus found in up to 90% of people who became infected with HIV through injection drug use. The full effects of hepatitis C co-infection on HIV disease progression and response to HAART remain controversial. Yet ample research indicates that HIV infection can accelerate progression of hepatitis C, and hepatitis C-related liver disease has become a leading cause of death in people with HIV. The Atlanta cohort found that people co-infected with HCV had poorer survival rates than those with HIV alone. Survival differences couldn't be explained solely by the increased risk of death from liver disease in the co-infected group. The co-infected group, overwhelmingly comprised of African-Americans with histories of injection drug use, was less likely to receive HAART. However, those who were on HAART responded to treatment as well as those with HIV alone.
Together, these analyses reinforce the argument that HIV-positive drug users aren't receiving adequate HIV care and treatment and strengthen the call for more aggressive efforts to engage IDUs in appropriate HIV care (see box). Activists and advocates must focus on fundamental issues of equity and structural change in order to increase access to care and quality of care.
Daniel Raymond is the Hepatitis C Policy Analyst for the Harm Reduction Coalition.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.