Bill's Blog - June 2015

Educating a nation about viral hepatitis

This morning we woke up to the news of the world; which reports over 8000 dead from an earthquake in Nepal, last week we were told that over 600 refugees are lost at seas after their boat cap-sized while trying to reach friendly shores. Everyday there seems to be some tragic event that claims the lives of many innocent people.

These tragedies of epic proportions certainly warrant all the media coverage that they receive. If nothing else, it compels us to ponder on our place in the world and appreciate how difficult it is to survive for those living in parts of the world facing desperate times. Singular events that result in many deaths are the ones we see in the headline news bulletins and on front pages of newspapers, and are generally covered through a variety of editorial perspectives for many weeks afterwards. This is even more the case when the event (e.g. Christchurch earthquakes) is in our backyard.

However, when something is happening with similar consequences (or worse); a catastrophe ending in massive loss of life, an event that is to-tally game changing but the devastation occurs slowly and over time, we hear barely a whisper about it. Hepatitis C now kills 1.5 million people a year (29,000 people per week); this is a figure that is increasing as the affected population ages. The burden of disease rests amongst people aged between 40 and 60 years, so we will see an accelerated growth in mortality rates as time passes.

In New Zealand, we seem to be doing better than most countries at raising awareness of hepatitis and most of those who have been diagnosed are on some; albeit disjointed, pathway to getting appropriate treatment. There are many countries in the world where educating and raising awareness is an insurmountable challenge. Hindered by deeply embedded cultural beliefs (including folk medicine involving blood-letting) and the population living amidst a matrix of health and social problems, places hepatitis at quite a low priority on the country’s to-do list. The costs of rolling out a stable and comprehensive vaccination programme for hep B; or establishing a community health initiative that primarily targets people who inject drugs (PWID) is fraught with problems. These are people who generally live in inner city areas and are often homeless and destitute and these health initiatives are well down their priority list. In many countries the greater population tends to accept that the PWID group are an unfortunate urban blemish which are best kept at a distance, ignored and forgotten about.

Nevertheless, we must not drop our guard just yet at home, because there are many people who still have latent infections that they are not aware of and may unknowingly pass them along.

The provision of education on hepatitis directed to key junctions within the community, where the wider health sector (public and personal) meet patients/consumers is necessary to find this hidden population and help them to become hep C free. Providing education and widening the scope of awareness this way contributes to the effort for global eradication of hepatitis.

If I may don my patient hat, as I do from time to time in my education crusade (even though I have been hep C-free for almost 13 years) I want this secret to get out so that others don’t have to get to the point where liver disease gets to a life-threatening stage. Having felt the illness that accompanies chronic hep C infection and the social unease it causes the afflicted because of ignorance and stigma, I would not wish this on anyone. In the last 15 years we have seen impressive leaps in diagnostic and clinical technologies in the field of hep C. Finally, we can cure people without the need for a drug that tends to cause more illness than the disease itself. Interferon-free treatments are just around the corner and even though the cost of the new oral treatments will slow New Zealand’s transition to adopting them as ‘standard medicine’ it will be hard for our medicine buying agency Pharmac to deny them to those who need them. Sofosbuvir, which to date has shown to be the most effective inhibitor against HCV and first to be approved by the FDA, has now been added to the Essential Medicines List (EML) by the World Health Organisation. The EML highlights that some drugs are more important than others but it merely ‘assists’ coun-tries to compile their own lists of drugs to buy, and will not influence them of what to buy. The WHO doesn’t get involved in price setting or price negotiations, but inclusion in the EML may have some influence in lowering prices worldwide.

Currently, we are getting a taste of many of the new treatments through clinical trials run by the pharmaceutical companies who rely on human trials to find their place in the market. Having seen many of our sup-port group members finally being cured with new oral medications in a very short period of time, after numerous attempts with interferon and suffering terrible side effects; it is a ‘no-brainer’ that we should no longer persevere with interferon.

Last week I addressed a nurses conference in Christchurch held in recognition of the annual Nurses Day which was attended by over 100 nurses. Nurses play a vital role in getting the up-to-date information to patients and other health professionals through their day to day interactions within the wider health sector. I was surprised that many of the recent advancements in diagnostic and clinical technologies were still new to this group. It was obvious from the questions presented to me, that many still saw hep C as ‘incurable’ –at least not without a lot of collateral damage. And that it could be transmitted through body fluids other than blood and that it was not something to be concerned with unless you were an active PWID. There is still an ongoing need to educate the nation so we can all contribute to reducing the burden of hepatitis C in New Zealand and globally.

Bills Blog

  • Bill's Blog - June 2015

    Educating a nation about viral hepatitis This morning we woke up to the news of the world; which reports over 8000 dead from an earthquake in Nepal, last week we were told that over 600 refugees are…

  • 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…

  • Bills Blog - November 2014

    Greetings All It is the beginning of the summer in the year 2014 and the Hepatitis C Resource Centre has just entered its 17th year in existence. We have travelled an intriguing journey with hundre…

  • Bills Blog - June 2014

    Are we still relevant? In 1998, when the Hepatitis C Trust first came into being, people with hepatitis C were pretty much the neglected population. A handful of us collectively became involved in…

  • Bills Blog - February 2014

    In early January 2002, after getting on the first round of NZ’s open trials with pegylated interferon plus ribavirin I had my first negative PCR (qualitative viral load test) since being diagnosed wit…

  • Bills Blog - Summer 2013

    Simeprevir…,Sofosbuvir…,Teleprevir…,Boceprevir…,Daclatasvir. These are some of the new hep C drugs at the forefront of the drug research pipeline. It is nothing short of astounding, the way the race t…

  • Bills Blog - Autumn 2013

    I migrated to New Zealand in 1978. It wasn’t the first time I had touched down on New Zealand soil. I had taken a Cruise ship over here in 1974 when life was still a simple affair and I ended up stayi…

  • Bills Blog - Spring 2012

    As I write my piece for this issue of Dragon Watch the warmth of the day tells me we are well on our way into the long awaited summer. For me this is generally when life takes on a refreshing hue full…

  • Bills Blog - Winter 2012

    There is no doubt about it; we are living in exciting times when technological and scientific developments in finding cures for the ills of the world abound. As a person born in the fifties I can stil…

  • Bills Blog - Autumn 2012

    Greetings Everyone I have working for the Hepatitis C Trust now for the last fourteen years. I first took up the role of Service Coordinator in 1998 and when the organisation grew and began to empl…

  • Bills Blog - Spring 2011

    The Power of Support Groups From 1998 until 2008 the Christchurch Hepatitis C Support Group was meeting once a month, and despite the numbers attending diminishing in the final years of its exis- te…

  • Bills Blog - Winter 2011

    As I write this l I am sitting in our new (hopefully temporary) premises situated in Sydenham on the south side of Christchurch city. Two blocks over to the west we can see the incredible damage done…

  • Post Quake Update

    Post-Earthquake Update *** Christchurch’s Hepatitis C Resource Centre *** Gough House is OK!! When the February Earthquake struck we were in the process of filling envelopes in order to finally get…

‘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.

 

Login