29th Sep 2017

Why World Hepatitis Day matters: The view of I’m Worth… ambassador, Brian

On 28th July every year, World Hepatitis Day (WHD) brings the world together under one banner to raise awareness of the global burden of hepatitis and spark real change. Led by the World Hepatitis Alliance, a patient led organisation looking to achieve elimination of hepatitis, the campaign calls for greater awareness and increased diagnosis to achieve elimination.

For hepatitis C, the last year saw real progress in treatment and elimination in the UK, with more patients than ever being treated for hepatitis C. However far more is needed, over 200,000 people are estimated to have hepatitis C in the UK. Globally only 1 in 5 of those infected have been tested and know their status.1 In the UK, if left untreated, 1 in 3 people with the virus will develop cirrhosis, and 1 in 20 will develop a preventable cancer.2

In the wake of World Hepatitis Day 2017, many charities and public bodies held events to highlight their support for hepatitis sufferers and their commitment to eliminating hepatitis as a public health threat. I’m Worth… ambassador, Brian, spoke to us about the activities he took part in and why it’s important to him to get involved with World Hepatitis Day.

“The day before World Hepatitis day 2017 I travelled to Cambridge to talk to Gilead’s staff about my experiences and how I use the I’m Worth… campaign to help people with Hepatitis C. It was great opportunity to share what I do as a volunteer for Inclusion’s Hampshire Hep C P2P project. Watching myself in my I’m Worth… ambassador video on the screen was a bit embarrassing and I couldn’t believe I didn’t win a prize in the staff quiz… even though I didn’t enter!

It was really nice after the talk to spend time with the staff, who were all grateful I’d come and shared my story as it gave them a patients view of living with hepatitis C. I was able to show them how far things have come in the last four years (I was treated four years ago ), as well as what still needs to change. It really showed me just how much the staff cared about the work they were doing. It was also nice to know that they care about the I’m Worth… campaign and what it is hoping to achieve.

On World Hepatitis day 2017 I went to the Hepatitis C Trust’s patient conference in London. This was an amazing chance to hear from people working with and affected by hep C from around the world about what was being done to eradicate this horrible virus. With new and ever more effective treatments coming out all the time, elimination really is a possibility!

Brian and other members of Hep C P2P Hants team after the Hep C Trust World Hepatitis Day Conference

This is one reason that World Hepatitis Day is so important, but also because it seeks to reduce the stigma by educating people about hepatitis. It is still a relatively unknown disease to most people, even to those that are most at risk from it!

It’s also important to find out about what others are doing around the country to help people access testing and treatment, as well as great chance to hold testing events and get the word out to the media that there are more treatments options out there now. Anything that can be done to get people tested then treated can only be a good thing.

Finding out that I had a virus that could kill me made look at my drug use and begin my journey to recovery. This can only happen if we talk about hepatitis C openly.

Seeing how far things have come since I was first aware I was Hepatitis C positive in 2006 is amazing and makes me really optimistic about the future, a future that could be free of this virus.”

 

Brian Stuebs, P2P Volunteer recovery worker at Hep C Hants P2P and I’m Worth… ambassador.

 

If you would like to do more to help raise the profile of hepatitis C and support the I’m Worth…campaign, you can start by:

 

  • Downloading and sharing the I’m ..… leaflet from the website
  • Watching Brian’s story here and sharing your hepatitis C story on Twitter with the hashtag, #Imworth

 

References:

1 Public Health England. Hepatitis C in the UK 2017 Report. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/632465/HCV_in_the_uk_report_2017.pdf [last accessed: September 2017]

2 NHS Choices. Complications. http://www.nhs.uk/Conditions/Hepatitis-C/Pages/Complications.aspx [last accessed: September 2017]