Bills Blog - February 2015

Greetings to you all

I’m writing to all the people who are themselves or know others, quietly living with hepatitis C and have never seriously considered being treated. Deferring treatment to later has always been an option for those who do not have liver disease or accompanying symptoms. Over the years, interferon treatment and its side-effects came to be more feared than the hepatitis virus itself. Stories abound of people suffering unmentionable side-effects that debilitate the patient both physically and mentally. The thought of having flu-like symptoms for up to a year, suffering overwhelming fatigue and breathlessness and perhaps exasperating existing mental health conditions such as depression, made the prospect of treat-ment less than inviting. The decision to wait was further reinforced by the likelihood that it might not even work.

The good news is that the era of pegylated interferon plus ribavirin was the gold standard (well the only standard) for treatment of hep C in NZ is finally looking like coming to an end. The culmination of years of global research in pharmacology has now delivered us drugs that combat the virus; without having to use our bodies as a battering ram. New medicines that are all-oral, taken for a much shorter duration to work and have relatively mild side-effects, have taken the world of hep C by storm. These are starting to trickle into New Zealand mainly under trial conditions, but eventually they should become available to those who need them. Hopefully, a similar subsidy scheme under Pharmac that currently provides Interferon to all New Zealanders with chronic hep C, will allow us access to these very expensive medicines.

During my time working with hundreds of people with hepatitis C, I have discovered another reason why many people tend to avoid seeking treatment; and risk the onset of liver disease. It has to do with their lifestyle choices and how they set their priorities in life. I’m talking about people with chronic hepatitis C who may still be using/abusing substances; alcohol and other drugs. Some of the people I meet that fit this description are found in recovery, and are attending day and residential Alcohol and other Drug programmes. These people often tell me that they have known or suspected they had hep C, but have never done anything about it because it hasn’t really affected them. Some have held on to the words of their Doctor who they may had seen in the past when there was much misunderstanding about hep C. Being told that it is ‘dormant’ or ‘in remission’ (often in reference of liver disease indicators which appear to normalise when hep C becomes chronic) led these people to believe that it was not going to be a problem.

Others, whose addictions are manageable or less problematic remain hidden in the community and are reluctant to make the first steps towards dealing with their hep C, for fear of reprimand or condemnation from their health practitioners, or else they do not consider themselves eligible or worthy of treatment. For some, having hep C reminds them of past indiscretions that they have tried to forget, and dealing with their hep C infection puts them in touch with their former self. The stigma of being a drug user and having hep C brings with it a deep sense of disempowerment that tends to disengage and isolate people from mainstream community. Health Support services that others freely access and take for granted are often less available to those who carry the label of being an illicit drug user. When a family member has struggled with addiction over many years family support systems also tend to become strained and tenuous, and has had a negative impact on family relationships.

A large percentage of people with addictions may also suffer from mental health problems such as depression or anxiety, and when interferon was first being used and still largely experimental, having a mental health problem excluded you from treatment. Gradually, through monitoring closely and using other medicines to manage these problems while on treatment, this exclusion criterion was lifted. Some of those with these problems were never followed up and had lost their motivation.

Unfortunately, I see a lot of people described above who are now entering the twilight years of their lives and through neglect of health, continued use of drugs and alcohol and years of having hepatitis C they are now facing an early demise because of advancing liver disease or liver cancer.

Finding these people, getting them tested and educated about new advancements in hep C is a complex problem and one that involves developing informal networks. This process takes time, but just the same way myths and misinformation were generated through the using community, we need to start spreading good news stories and find ‘champions’ in the community who will help us educate, find and motivate others to begin to do something about their hep C.

Having medicines on the horizon that could almost be considered a universal cure means New Zealand could conceivably become hep C-free in our lifetime; but it is critical that we target this hidden population that needs a ‘leg-up’ and be told that everyone, regardless of their lifestyle choices deserve the same opportunities to achieve health and wellness.

Good Health

Disclaimer

‘Bill’s Blog’ is an editorial written on the basis of personal experience and observation and therefore should not be seen to reflect the opinions, ideas or value position of the Hepatitis C Trust Te Waipounamu

 

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‘Hep C Info Express’ South Island Road Trip

From the South Island Road Trip with the ‘Hep C Info Express’ press release.

This year Bill Jang and Co. from the Hepatitis C Trust will travel to 10 towns/cities in the northern regions of the South Island to raise awareness, inform local people and garner support for this cause.

Be on the lookout for the house bus that will provide a ‘spectacle of exposure’ to the many things people should know about viral hepatitis, particularly hepatitis C.

From July 27th to August 7th the Hep C Info Express will travel to each town and park up for the day to speak to locals and raise awareness of hepatitis.

TOWNS:

  • Christchurch July 27th
  • Kaikoura 28th
  • Blenheim 29th
  • Motueka 30th
  • Nelson 31st
  • Westport Aug 3rd
  • Hokitika 4th
  • Greymouth 4th (12.30pm onwards)
  • Waimate 5th
  • Geraldine 6th
  • Timaru 7th

 

Bill Jang has been a Health Promoter/Educator for the Hepatitis C Trust for the last 17 years and hopes that this Health Promotion venture will get a conversation started with people who have no idea of the magnitude of this health threat and the challenges we face as a nation and globally.

 

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