May 26, 2010
by Tara Thom Burnett
The ANKORS needle exchange program has been operating in several communities within the Kootenay Boundary since 1998. During this time period, ANKORS has collected a surplus of anecdotal information pertaining to the challenges and barriers for clients accessing health care and social services. This information indicates that persons who use intravenous or inhalation drugs and are also living with HCV or HIV experience many difficulties when attempting to access health care services.
Most research evaluating barriers to health care has been conducted in larger centres. Reporting of data from smaller communities is nearly non-existent. Nevertheless, this literary review aims to examine the current research with the purpose of outlining the main issues and barriers to accessing health care for inhalation or injection drug users with HCV and/or HIV.
The literature suggests that the reluctance of physicians to treat HCV or HIV while their patients are actively using illicit drugs contributes greatly to the inaccessibility of health care services. For example, many intravenous drug users (IDUs) with HCV are “deemed ineligible for treatment” because of ongoing substance abuse (Grebely, Genoway, Raffa & Dhadwal, 2008a, p. 28). In a 2007 Vancouver study that examined barriers to the treatment of HCV among illicit drug users it was found that “factors associated with decreased uptake of treatment for HCV infection included current heroin use and HIV/HCV co-infection”. Specifically, “concerns about patient motivation and adherence, medical and psychiatric co-morbidity, re-infection due to recurrent risk behaviours and the lack of infrastructure to ensure long-term access to care have all been raised as obstacles to the implementation of systematic HCV treatment programs in patients with a history of recreational drug use” (Grebely et al., 2008a, p. 26).
Motivation and Adherence
A common belief among physicians is that patients with HCV and/or HIV infection who are also currently using illicit drugs will not be motivated to adhere to treatment plans. Still, reports have confirmed that “many IDUs are motivated to receive treatment” (Grebely et al., 2008a, p. 26) and that “physicians’ assumptions about patient adherence are often incorrect” (Taylor, 2005, p S356).
Furthermore, adherence to treatment appears to be higher when specific patient needs are taken into consideration: Embedding HCV treatment into other comprehensive programs of social, health, addiction or treatment services that drug users trust, need and frequent regularly (e.g., methadone treatment or needle-exchange program) may facilitate treatment acceptance and adherence; individualized therapy plans and reward systems (e.g., the possibility of methadone “take-homes”) may reinforce desired effects. HCV treatment demonstration projects for illicit drug users in Europe and the United states using a combination of the above strategies have shown positive initial results, with adherence rates of 80% and more (Fischer, Haydon, Rehm, Krajden & Reimer, 2004, p. 437).
In regards to IDUs with HIV infection, it has been shown that “patients who receive support services, whether case management, mental health services, substance abuse treatment or transportation, are more likely to remain in care” (Kresina, Bruce, Cargill & Cheever, 2005, p. S85).
Fear of Re-Infection
Another apparent assumption within the medical community is that current drug users who have previously cleared the HCV virus are likely to re-expose themselves to the virus and therefore, remain at high-risk for re-infection. However, “fears about re-infection with HCV are understandable, but this is not common. There are few confirmed cases of patients having re-infected themselves by drug injection after successful treatment for HCV infection” (Taylor, 2005, p. S356). Likewise, a Vancouver study found that “individuals with previous HCV infection and viral clearance were 4 times less likely to develop infection than those infected for the first time” (Grebely et. al, 2008a, p.31). As Curtis L. Cooper, M.D. points out: Post treatment re-infection is often cited as justification to withhold HCV antiviral treatment from those with ongoing injection drug use. This concern is not trivial but is a rare occurrence. HCV exposures usually occur shortly after beginning injection drug use as a result of inexperience and inadequate knowledge regarding safe injecting techniques (2008, p. 62).
Lack of Infrastructure
Many people who use inhalation and/or injection drugs who require treatment for HIV and/or HCV infection face complex socioeconomic challenges. Poverty and homelessness are common. Plus, as one doctor points out, “stable housing, affordable transportation and refrigeration to store HCV medication are essential to successful treatment” (Cooper, 2008, p. 64). The lack of stable housing, poverty, and a lack of access to proper health and social care all contribute to the systemic marginalization of IDUs and represent a powerful barrier barring IDUs from effective prevention and treatment in the Canadian context (Fischer et al., 2004, p. 439).
High prevalence of mental illness among IDUs with HCV or HIV infection appears to be an important concern among physicians. Consequently, mental illness is regarded as a barrier to receiving health care. It has been noted that “stable psychiatric health is key to the safe and effective initiation of HCV antiviral therapy” (Cooper, 2008, p. 64). Persons with HCV or HIV that have concurrent addictions are “at increased risk for mental illness”, which has been considered a contraindication to interferon therapy (IFN) (Taylor, 2005, p. S356). Among IDUs with HCV and HIV, major depression, anxiety disorders, posttraumatic stress disorder and bipolar disorder are common. Additionally, the treatments for HCV can lead to depression symptoms and may complicate pre-existing psychiatric illnesses (Ficher et al., 2004).
Conversely, research shows that the presence of mental illness in patients is not an impediment to the treatment of HIV or HCV infection. In fact, “studies of patients with depression or other psychiatric diagnoses taking IFN demonstrate that many can be successfully treated, some with adjunctive therapy, including selective serotonin reuptake inhibitors and supportive care” (Taylor, 2005, S356). Furthermore, some studies have shown that HCV treatment offered in conjunction with a psychiatric co-morbidity is “possible, safe and acceptable for such patients when properly monitored” and that “antiviral treatment does not per se lead to increased risk of psychiatric side effects” (Ficher et al., 2004, p.438).
Another barrier to accessing health care among injection and inhalation drug users is stigmatization. In reality, “many (especially non-specialist) physicians are not inclined or do not feel comfortable to provide HCV treatment care, especially to perceived “difficult” patients such as active substance user populations” (Grebely et al., 2008b, pp. 143-145).
Drug-using patients seeking treatment for HIV or HCV infection may be misunderstood or disregarded by health-care providers due to a lack of understanding of patient needs or circumstances:
The stigma of drug use in conjunction with unrealistic expectations and judgmental attitudes leads to frustration and resentment for both physician and patient. HCV-infected patients commonly report communication problems with their providers. IDUs may fail to follow their physicians’ advice, fail to fully and truthfully disclose their lifestyles and behaviours, and/or fail to keep their appointments. Physicians caring for drug users often experience this behaviour as frustrating and may respond with aversion, malice or neglect. Consequently, most physicians defer to addiction specialists or a drug treatment facility, thus avoiding caring for IDUs (Kresina et al., 2005, p. S87).
Within the medical community, there appears to be a tendency to place judgment on patients rather than recognizing that substance dependence is a treatable disorder. Consequently, patients are less likely to seek treatment:
One of the main barriers to providing adequate health care is the social stigma attached to the illegal opioid user, characterizing them as “weak willed and morally unsound people incapable of controlling their deviant behaviour”. As a result, illegal opioid users consult with primary health care less often than the general population, and often seek treatment only when medical conditions are advanced and symptoms are severe (Popova, Rehm & Fischer, 2006, p. 321).
Furthermore, an attitude exists that continues to perpetuate the idea that drug users are unworthy of expensive medical treatment:
In ethical, medical and general social circles, strong resistance has been expressed against providing drug users with treatment, especially for a disease they were seen as having brought on themselves through their “immoral” drug use behaviour. Specifically, the categorical exclusion of illicit drug users from HCV treatment, as it was proclaimed and practiced until recently, seems neither medically tenable nor necessary; thus, a process of innovative education and acculturation in professional and societal arenas must begin and be translated into everyday attitudes and practice. An interdisciplinary focus is required to share expertise from numerous areas, including hepatology, addiction medicine, and social services (Fischer et al., 2004, p. 439).
Building better client-physician relationships greatly contributes to the successful treatment of patients with HIV and HCV infection. Explicitly, “a trusting relationship with a member of the health care team who can help patients anticipate, plan for, and endure the difficulties that arise in the medical management of HIV and HCV infection is fundamental for IDUs as they seek care. A patient-provider relationship that will encourage a dialogue in which both parties are able to communicate openly about their expectations and frustrations is critical” (Kresina et al, 2005, p. S84). Furthermore, “successful programs have a respectful approach to substance users, understand the medical and behavioral sequelae of addiction, refrain from moralistic judgments, and use a multidisciplinary team” (Kresina et al, 2005, p. S84).
The BC Centre for Disease Control offers information about preventing the stigmatization of active drug users with HCV infection:
- Use standard universal precautions with everyone and no one will feel pressured to disclose to protect others
- · Avoid the question of how people acquired HCV so people won’t fear poor treatment because of associations with drug use
- · Follow policies of confidentiality & assist people to determine who needs to know about their HCV diagnosis
- · Acknowledge the expectations of active drug users about problems in obtaining pain relief to begin a discussion about an appropriate dose for them
- Establish a trusting relationship by:
- · Using non-judgmental language about substance use; avoid terms lik addict & drug abuser
- Providing information on transmission risks, the social, psychological and physical effects of drug use as well as the effectiveness of & access to treatment
(BC Centre for Disease Control, 2009)
The information presented in this review gives an accurate depiction of the barriers to treatment for inhalation and injection drug users with HIV and/or HCV in Canadian urban areas. These barriers have consequently led to the development of strategies that will facilitate the effective treatment of these patients. Although these urban studies may give us an overall idea of these barriers and strategies, they do not fully illustrate the experience of persons living in other places. Further studies are needed in order to identify the barriers for people living in rural areas.