Marian Donnelly lived with hepatitis C for 42 years, before she was cleared of the virus in June 2016.
Nine months later, in March 2017, a Fibroscan® showed her liver is on the mend.
Marian had lived with hep C since she was 18, but was unaware of this until she was diagnosed in 2012.
“I had been feeling unwell on and off for some time, but hepatitis C was never suspected and not included in the many tests I had over the years. It was only when I became sick while attending a conference overseas that I knew something was seriously wrong,” Marian said.
By this time, her liver had developed cirrhosis (scarring) to stage F4, an advanced stage of fibrosis (hardening) as a result of the damage the hepatitis C virus had caused.
This put Marian at very high risk of liver cancer or liver failure.
Despite the condition of her liver, and how it was affecting her overall health, she continued to work two part-time jobs, play competitive tennis, and travelled to Canberra with Hepatitis Australia to promote the book Together We Can: See our Future.
Together We Can: See our Future is a collection of stories, including Marian’s, from people with hepatitis C about their experiences of treating and living with hepatitis C.
“I became involved with Hepatitis Queensland and Hepatitis Australia, and helped lobby our federal government to list these medications on the PBS to make them affordable for me and the other 226,000 Australians living with hep C,” she said.
The book launch (https://youtu.be/AjgtD_A6Uo0) at Parliament House, Canberra aimed to break the stigma around having hepatitis, and called for the new hepatitis C treatments to become available on the Pharmaceutical Benefits Scheme (PBS) for all Australians living with hepatitis C.
Marian had attempted one of the interferon-based treatments in 2013, but it was unsuccessful.
“After five weeks, I had a serious adverse reaction to this treatment, resulting in an emergency hospital admission. Six months of treatment was unsuccessful, the side-effects were horrendous,” Marian said.
The new direct acting antiviral medications had been released commercially in 2014, but were prohibitively expensive, making them inaccessible to the people who needed them most.
At the end of 2015, Marian’s health was deteriorating. She could no longer wait for the government to make the new hepatitis C treatments easily available.
“My hep C was worsening. I had debilitating fatigue. I had fallen asleep driving on a number of occasions. The PBS listing had still not happened,” she said.
Marian imported three months of Harvoni® from China to begin her treatment. By the time this supply was ending, Harvoni® had become available on the PBS on 1 March 2016.
Due to her liver cirrhosis, Marian continued another three months of treatment with Harvoni®, accessed through the PBS.
After six months of treatment, Marian was cleared of hepatitis C and she could feel the difference.
“The only side-effects during treatment were occasional mild headaches. After six months of treatment, the hep C was gone. The fatigue was gone,” she said.
Nine months later, In March 2017, Marian had a Fibroscan® to assess the condition of her liver, post-treatment.
“The Fibroscan® showed no cirrhosis, just moderate fibrosis (F2). I am no longer at high risk of liver failure or liver cancer. I am very grateful,” she said.
Now, thanks to people like Marian, those treatments cost less than $40 per prescription , and 30,000 Australians accessed the new treatments in 2016 (https://kirby.unsw.edu.au/news/latest-research-shows-australia-track-cure-hep-c).
“All hep C positive people in Australia now have the chance to be free of hep C.”
Thank you Marian Donnelly and Hepatitis Queensland for sharing this article.