Hepatitis C, Drug Use and Stigma Liz Allen

What it is Hepatitis C? Hepatitis C is a blood-borne virus Can cause serious damage to the liver First indentified in 1989 Known as non-A, non-B hepatitis Test developed in early 1990’s

What is Hepatitis C? Hepatitis C virus (HCV) is spread through exposure to infected blood Prior to 1991 transmission through blood transfusions or blood products Sharing of equipment using in injecting drug use

HCV Less common routes of infection Mother to baby transmission Unprotected sex Medical & dental treatment abroad Tattooing, ear or body piercing Sharing razors, toothbrushes and other toiletries Needle stick injuries

HCV Around % of those infected will develop chronic Hepatitis C infection Of those that become chronically infected 5 to 15% will go on to develop cirrhosis of the liver within 20 years Often referred to as the silent epidemic Most show no symptoms

HCV No vaccination for HCV Treatment for HCV Effectiveness of treatment can depend on the strain of the virus & stage of disease Treatment can last between 24 & 48 weeks Some people experience side effects

HCV in Scotland 24,419 diagnoses –12% have died 59% ( 14,397) are known to have injected drugs representing 89% of those with known risk factor ( Health Protection Scotland, 2008)

HCV in Scotland Approximately one in 240 of Scotland's population have been diagnosed HCV positive Number of undiagnosed cases exceeds the number of diagnosed cases Estimated that 1% of Scottish population are infected

HCV in Scotland Figure 1: Hepatitis C epidemiological landscape (estimates): Scotland, 2006.

HCV in Scotland Hepatitis C Action plan for Scotland Phase I: Sept Aug £4 million Phase II: May 2008-March £43 million

Action Plan Investing in the public health of Scotland Investment should over the longer term significantly reduce the problem of HCV in Scotland.

Action Plan “ improving testing, treatment, care and support services for those infected with a major emphasis being placed on increasing the numbers of people receiving treatment. The plan also recognises and addresses the social care needs and the drug addiction problems of infected persons through actions aimed at improving links between clinical, addiction and mental health services” Hepatitis C Action Plan for Scotland Phase II: May March 2011 p4

Hepatitis C and Stigma

What does the research say? The vast majority of people with HCV have a history of injecting drug use, they are frequently assumed by others to be injecting drug users, blamed for acquiring the disease and viewed as ‘irresponsible’, ‘immoral’ and ‘unworthy’.

What does the research say? HCV related stigma in health care settings arise from practitioners negative views of injecting drug use Practitioner negative attitudes toward people with HCV are the result of their lack of awareness and or information about injecting drug use

What does the research say? People that have never been an IDU frequently report that they have received inadequate and judgmental care for hospital staff because practitioners assume that they acquired the virus through Injecting drug use

What does the research say? Other factors maybe involved Illicit drug use Poverty Ethnicity, Homelessness, Prostitution Mental illness All may have an important part to play in the stigma experience by those with HCV.

HCV and stigma Stigma may cause people To avoid testing, treatment and care Not to disclose their Hep C status or injecting drug use to others.

HCV and stigma Fear of stigma Fear of how they maybe treated accessing health services Fear of how their family and friends may see them

HCV and stigma Day et al (2004) 40% of respondents reported experiencing HCV related stigma in the previous 2 years. Current IDUs were more likely to report discrimination than past IDUs or those that never injected.

HCV and stigma Zickmund et al ( 2003) 57% ( 147) of respondents reported HCV related stigma. Outcome of this stigma included anxiety, depression, decreased quality of life, feeling of loss of control and difficulty coping.

HCV and stigma Hepatitis C patient Journey Evaluation: Finding from an initial scoping exercise. The majority of participants, 80% (61/76) reported that they had not experience discrimination. Of the remaining 20%, six respondents reported negative reactions from family, friends and neighbors. Eight respondents reported discrimination when accessing hospital services or dental treatment And 2 respondents experience problems with employment.

HCV and stigma There are often institutional and structural forces with in health care systems that can result in discrimination despite the positive attitudes of staff towards those with HCV.

HCV and stigma Institutional policies such as Who is eligible for treatment Who receives treatment Types of support available Strict Appointment times Methods of referral Infection control policies

Stigma and harm reduction Stigma that is associated with drug use can hamper the harm reduction approach that is essential in helping to prevent HCV infection among injecting drug users.

Stigma and harm reduction Staff attitudes and prejudice Lack of privacy Lack of discretion Location of service Restrictive policies determined by staff

Stigma and harm reduction Recreational/ occasional users Steroid users Women with children Can experience shame/ embarrassment at accessing harm reduction services

Conclusions Stigma can arise from a lack of awareness and knowledge. The need to educate health care practitioners, But It is not a guarantee that the recipients of such education will integrate this knowledge in to clinical practice.

Conclusions There is a need for services for testing and treatment that are specifically for IDUs with Hepatitis C It is unclear if the stigma associated with injecting drug use is part or whole of the hepatitis C related stigma

Liz Allen