Systemic barriers, stigma and discrimination preventing people living with viral hepatitis or HIV accessing care

Barriers to care

The Aus­trali­an Gov­ern­ment and all jur­is­dic­tions have adop­ted Nation­al Strategies [1] to help com­bat HIV, hep­at­it­is B and hep­at­it­is C. This suite of strategies also includes a sexu­ally trans­miss­ible infec­tions (STI) strategy [2] and Abori­gin­al and Torres Strait Islander Blood Borne Vir­uses and STI Strategy. [3] Stigma and dis­crim­in­a­tion were iden­ti­fied as lead­ing causes for missed dia­gnoses of HIV and vir­al hep­at­it­is and for the fail­ure of people liv­ing with these con­di­tions to engage with the health sys­tem and seek­ing timely care.

“About 40% of people referred into (the ter­tiary hos­pit­al) from com­munity based clin­ics, AMS, and com­munity health, fail to attend their hos­pit­al appoint­ment. This is for a host of factors includ­ing struc­tur­al issues like the cost and time to travel, park­ing fees and pre­vi­ous neg­at­ive and stig­mat­ising exper­i­ences in hospitals.”

Ter­tiary con­sult­ant phys­i­cian, Aus­tralasi­an Vir­al Hep­at­it­is Con­fer­ence 2016

HIV and vir­al hep­at­it­is are about sex and drugs. It is all too easy for value judge­ments to com­prom­ise the fun­da­ment­al Hip­po­crat­ic prin­ciples of qual­ity, com­pas­sion­ate and unbiased health care.

The dis­crim­in­a­tion can take many forms, includ­ing deni­al of care, inferi­or care, unjust bar­ri­ers to ser­vice pro­vi­sion and lack of respect. It might be as simple as the ter­min­o­logy used on patient doc­u­ment­a­tion, or the lan­guage used when com­mu­nic­at­ing with colleagues.

The impact is con­sid­er­able, not just for the indi­vidu­al involved, but to efforts to reduce dis­ease prevalence.

Hepatitis C

In Aus­tralia, hep­at­it­is C is most com­monly trans­mit­ted by inject­ing drug use, an area where stigma is pro­found. Once in the health sys­tem people who are viewed as “drug-users” can exper­i­ence sub­op­tim­al treat­ment, or be viewed as untrust­worthy or even crim­in­al. There are also estab­lished beliefs that all inject­ing drug use are asso­ci­ated with chaot­ic beha­viour ren­der­ing people who inject drugs unre­li­able, and con­sequently unable to meet dos­ing treat­ment sched­ules. In cases where med­ic­a­tion is costly – as it is with hep­at­it­is C – people have argued that it is a waste to treat people who are likely to become rein­fec­ted. But these views are old fash­ioned and stereotyped.

The intro­duc­tion of new, dir­ect act­ing anti­vir­als to the PBS has res­ul­ted in tens of thou­sands of Aus­trali­ans being cured of hep­at­it­is C in the space of a few short months. The evid­ence shows us that people who inject drugs com­ply with dos­ing treat­ment sched­ules and have out­comes com­par­able to non-inject­ing drug users. [4] In addi­tion to the bene­fits to the indi­vidu­al there is also a strong pub­lic health argu­ment in favour of treat­ing this pop­u­la­tion to reduce the amount of cir­cu­lat­ing HCV in the com­munity. [5]

Hepatitis B

Hep­at­it­is B is endem­ic in a num­ber of regions and com­munit­ies around the world6, includ­ing Indi­gen­ous Aus­trali­ans [7], and in many Asi­an coun­tries with sig­ni­fic­ant migra­tion to Aus­tralia such as Viet­nam. Vac­cin­a­tion is the most effect­ive way to reduce chron­ic HBV, but that needs to be done at birth and so the impact is delayed. In the mean­time, many people car­ry­ing the dis­ease require health care. In Aus­tralia, it is estim­ated that 220,000 people have chron­ic HBV, yet although these num­bers are increas­ing, 50 per cent of people with the dis­ease remain undia­gnosed. [8] And amongst those dia­gnosed, many are not in care.

There are a num­ber of com­pet­ing factors respons­ible for this. New migrants and refugees often have com­pet­ing health demands and are deal­ing with adjust­ment to a new coun­try. Pre­vi­ous neg­at­ive exper­i­ences in seek­ing health care and/or fear of dis­clos­ure also con­trib­ute to poor uptake. Pro­gress­ive HBV dis­ease is largely asymp­to­mat­ic, and can lack a sense of urgency, but the health impact is severe: sig­ni­fic­ant liv­er dam­age, includ­ing liv­er can­cer poten­tially lead­ing to death or highly costly pro­ced­ures such as liv­er trans­plants. Struc­tur­al facil­it­at­ors as well as the remov­al of dis­crim­in­at­ory prac­tices and redress­ing con­cerns around dis­clos­ure are required.

HIV 

HIV stigma has been fuelled from the first iden­ti­fic­a­tion the Acquired Immune Defi­ciency Syn­drome (AIDS) [9] and the ini­tial term­ing of the con­di­tion Gay Related Immune Defi­ciency Syn­drome (GRID). [10] This set the pre­con­di­tion for dis­crim­in­a­tion against a sub-pop­u­la­tion of the com­munity that was already stig­mat­ised, namely gay men. The Grim Reap­er Cam­paign of the 1980’s was fuel on the fire, and fear per­meated the health sys­tem, schools [11] and oth­er ser­vices. This still has a resid­ual impact today, with people liv­ing with HIV afraid that dis­clos­ure will res­ult in dis­crim­in­a­tion or exclusion.

The real­ity is that glob­ally, more women than men are liv­ing with HIV [12] and while infec­tion pat­terns dif­fer around the globe, HIV is trans­mit­ted by risk beha­viours, not risk-groups.

Attempts to pro­tect people liv­ing with HIV from dis­crim­in­a­tion have res­ul­ted in pro­cesses and sys­tems in some jur­is­dic­tions which keep HIV off the health record or which require data about HIV to be coded. While these may have been neces­sary when HIV was first being iden­ti­fied in the 1980s con­tem­por­ary pri­vacy arrange­ments should provide adequate pro­tec­tion. Today, these pro­cesses can res­ult in a more com­plex ser­vice deliv­ery sys­tem and mean that clini­cians can­not access data and inform­a­tion which might con­trib­ute to decisions about care. So con­versely, these meas­ures intro­duced to pro­tect, can actu­ally be a bar­ri­er to care.

What ASHM is doing

ASHM is work­ing with Col­leges, Pro­fes­sion­al Soci­et­ies and Asso­ci­ations on a two-year pro­ject to address stigma, dis­crim­in­a­tion and struc­tur­al bar­ri­ers to access­ing health care and pre­ven­tion ser­vices. The res­ult­ing train­ing pro­grams and policies will be designed to be taken up across dif­fer­ent health ser­vices and set­tings and will provide clini­cians in train­ing with the skills to identi­fy and address stigma and dis­crim­in­a­tion in their own prac­tices and in the sys­tems in which they work. At present, the focus is on gen­er­al prac­ti­tion­ers, sexu­al health ser­vices, ter­tiary hos­pit­als and com­munity clin­ics. This will allow ASHM to pilot inter­ven­tions in dif­fer­ent set­tings to make sure that they are hit­ting the mark.

While the pro­ject focuses on the health sys­tem, it is com­monly recog­nised that stigma in the com­munity also impacts neg­at­ively on people’s health seek­ing beha­viour. Effort will be devoted to provid­ing front-line staff with strategies and resources to encour­age resi­li­ence in their patients and ser­vice users and to encour­age an open envir­on­ment for con­sumer feed­back about services.

Bar­ri­ers to care, stem­ming from stigma and dis­crim­in­a­tion must end. It is incum­bent on juni­or doc­tors to make sure that patients are not denied care because of the dis­crim­in­at­ory prac­tices of their insti­tu­tions. Instead, as you enter your careers in the digit­al age, you can take advant­age of easy-to-access inform­a­tion, tools and emer­ging tech­niques that will enable you to per­son­al­ise and tail­or patient man­age­ment. By treat­ing your patients as indi­vidu­als, and offer­ing them respect and qual­ity care, you can have a sig­ni­fic­ant impact not only on their health, but on the health of the population.