SUE
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oday I live a good, healthy and productive life and do not take drugs of any sort. I contracted hep C (genotype 1a) from my adventurous youth and my fear of enlisting for treatment was due to watching good friends go through the old Interferon treatment. I saw it knock people down like some terrible chemotherapy treatment and it was an emotional and physical roller coaster for most. Plus, my fellow genotype 1a sufferers were not cured even after all that. I have a great Liver specialist based at Tamworth Hospital who I have been seeing for a few years. He was understanding as to why I did not want to go on the Interferon treatment and never once made me feel bad for being fearful. He did however monitor my liver health on a regular basis and told me about a different treatment coming out which sounded very hopeful and much more successful for my genotype. So here I am. I have been approved for the new treatment. I was told the side effects - headaches, nausea and lethargy - were only experienced by 5% of patients. In trusting my doctor, I have finally surrendered to thinking that such side effects are not a big price to pay to add more years onto my good life. And besides, having hep C, I often suffer with headaches and tiredness anyway.
MY FEARS
n Will the treatment interfere in my busy career? The Doc says “no”.
n Am I going to get violently ill? The Doc says “no”. n Does this medicine send me along an emotional roller-coaster? The Doc says “no”, trusting that I am normally of good emotional wellbeing. n Am I going to lose my appetite? The Doc says “no”. I must admit this is a bit disappointing as I could do with some weight loss! n Will I lose my hair? The Doc says “no”.
MY TREATMENT
I have started Harvoni treatment and do not feel different in any way. I have not had any headaches, I do not feel tired or nauseated. The worry I had put myself through seems unnecessary.
PRESCRIPTION TIP
Give your pharmacy notice each time you need a script filled - at this early introduction stage, it may not be filled instantly. My course is for 12 weeks and the script is repeated each month. The clinic hand delivered my prescription to a pharmacy of my choice. I called into the pharmacy to get the script but because it is a new thing, the pharmacy hadn’t ordered my tablets, it only took them a couple of days. My liver specialist tells me that it is vital not to miss one day of the course but if I do I should let him know immediately.
current batch of DAAs are, for the most part, genotype specific. Genotypes 1, 2 and 3 are now more easily treated and, while 1 and 3 are the most common genotypes across Australia, there are still a significant number of people in the country living with genotypes 4, 5 or 6. There are next generation pan-genotypic drugs (able to treat across the spectrum of genotypes) in development but it may be some time before they arrive in Australia. At the time of writing the drug combination Zepatier, for the treatment of genotypes 1, 4 and 6, was being considered by the Pharmaceutical Benefits Advisory Committee (PBAC) for possible recommendation to the Health Minister for PBS listing status (see page 24 for further information).
SIDE-EFFECT FREE?
There is a lot of buzz about the lack of side-effects associated with the new treatments. And this is understandable, as opposed to the experience of treatment by Peg-Interferon & Ribavirin the nature of DAA side-effects seem, on paper, to be mild or negligible by comparison. Some of the common side effects reported from usage of Harvoni or Sovaldi & Daklinza have been fatigue, headache, nausea, diarrhoea and/or insomnia. Anecdotally, the extent to which someone may
8 Hep Review #91 | July-November 2016
experience any of those side effects is largely dependent on the individual and may range from extremely mild to, in some few cases, possibly severe. Furthermore, initial figures suggest that the longer someone was on the treatment the possibility of experiencing side effects could also increase. Concerns were raised in Melbourne at the Hepatitis Health Conference (May 2016) that patients that might experience severe side effects could have their concerns and discomfort dismissed due to the “no side effects” perception associated with the DAAs. Where people were once fully supported through the arduous Peg-Interferon regimen, the issue of support during treatment with the new DAAs, especially where a person is struggling with side effects, still needs to be considered.
SUPPLY & DEMAND?
In the first four to six weeks following the listing of hepatitis C DAAs on the PBS, the Hepatitis Infoline received a significant number of calls from people stating they had been unable to get their scripts filled at their community pharmacy. The issue was not an isolated one either, with calls from across Sydney and the state. A health care worker from the Broken Hill area advised they had clients with scripts for the hep C treatment who