Hepatitis C: The shame of the hidden disease of the marginalized and vulnerable

Injection of a drug in a vein

In 2004, the Scottish Government recognised that “Hepatitis C is one of the most serious and significant public health risks of our generation”, and The Lancet stated in their article this year called “Only just the beginning of the end of hepatitis C” that “Hepatitis C infection continues to be a major global health problem”

So why when twice as many people are infected with it in the UK than HIV, and it kills as many people each year as AIDS has no one really heard of it. And for those that have – do they understand the difference between Hepatitis B, and C – or for that matter, A, D, and E?

What is even more disturbing is the terrible stigma attached to Hepatitis C, even amongst health care professionals!

I discussed the issue of Hepatitis in Derby with the small team at the Royal Derby Hospital (RDH)and was surprised by what I was told. The team’s valiant attempts to make progress with the prevention and treatment of Hepatitis C is severely hampered by the stigma attached to it, the poor “Public Relations” it has, lack of funding, and prejudice brought about by the primary method of transmission and the demographic of the persons who typically have it.

Hepatitis C is prevalent in intravenous drug users (IDU) who whilst they may be diligent in not sharing needles, they are less so when it comes to the other paraphernalia associated with drug taking. As the virus is resilient outside of the body, even in dried blood, remnants of material on spoons, filters etc can still find their way into the body days later.

Although to the lay person the distinction between Hepatitis B and C may seem like technicalities they are different viruses and there are some crucial differences:

– There is a vaccination for B, but not C
– B is endemic in Africa, SE Asia and parts of East Europe and is transmitted Mother-Baby. In the UK, 96% of the chronic cases (long-term)of B are from overseas
– Most adult Hepatitis B infections are Acute (short –term) which can often be dealt with, naturally, by the body. Hepatitis C infections tend to be chronic and act silently, destroying the liver.
– There are limited treatments for B. C can be treated, although it’s very expensive.
– B can be transmitted more easily through sexual intercourse. C only in limited high risk ways.

One might observe that the risky behaviours prevalent in Hepatitis C patients are not that dissimilar to those who contract HIV so why is there is a massive difference in its position in the public consciousness. I asked this of the team at the RDH. Their observation was incisive if not entirely comfortable and comes down to who is predominantly affected by each disease.

In the Western world, gay men have been most affected by HIV/AIDS; as a group they are a successful lobby and have worked collectively for civil rights for many years. Gay men in the Arts and Media have been more open with their homosexuality and have built on that successful lobby. Publicly, they have “owned” the disease and been instrumental in promoting financial support. The public awareness of HIV is of the “patient as a victim” to the disease rather than it being contracted through lifestyle choices – which is not entirely accurate.

The majority of the people who have Hepatitis C are IDU’s. They tend to be from the marginalized and vulnerable sections of society and have no collective lobby. Where anyone has a negative perception of a Hepatitis C patient this will be generally judgmental, based on a view that “they have brought it upon themselves” by their negligent drug use.

The paradox is, on an individual level, the stigma of HIV is more evident due to the significant publicity on it whereas for Hepatitis C, few people probably understand the social subtleties between the different types of virus.

The position for England is summarized by the Hepatitis C Trust in their report “The Uncomfortable Truth”

There must be no more excuses for the rising tide of deaths from hepatitis C. Hepatitis C is a preventable and curable virus. The fact that deaths from the virus have nearly quadrupled since 1996 is a scandal. It is absolutely unacceptable that half of those living with hepatitis C are still undiagnosed and a mere 3% of those infected are treated each year. This report reveals plainly the link between hepatitis C and deprivation. Almost half of patients with hepatitis C who go to hospital are from the poorest fifth of society. It begs the question: has hepatitis C been overlooked for all these years, resulting in spiralling hospital admissions and deaths, because of the people it impacts? Has it been ignored and under-prioritised because most of the people living with, and dying from, the virus are from the most marginalized, vulnerable, deprived groups of society?

One thing is certain: if the health service is to reduce health inequalities and “improve the health of the poorest, fastest”, hepatitis C must be addressed.

The irony is that Scotland’s approach to Hepatitis C is recognised as an exemplar approach. In their Phase II Action plan it was reported:

A significant strand of the plan is about improving testing, treatment, care and support services for those infected, with a major emphasis being placed on increasing the number of people receiving treatment. The plan also recognises and addresses the social care needs and drug addiction problems of infected persons through actions aimed at improving links between clinical, addiction and mental health services.
The importance of prevention is acknowledged through several actions, particularly those designed to reduce the sharing of needles/syringes and other injecting equipment by injecting drug users.
And most significantly

In all, the Hepatitis C Phase II Action Plan amounts to intervention on an industrial scale; an investment in the public health of Scotland that should, over the longer term, significantly reduce the problem of Hepatitis C in Scotland.

It is shameful that a part of our Union is addressing this problem with great vigour “on an industrial scale” whereas, in England, it is left lingering as a low priority. Is it because it does not attract votes from those most affected?

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