I wrote this on my Facebook in an effort to own up a dialogue about this silent epidemic by sharing my dad's story. I thought it appropriate to share it here seeing as this site is where we found hope one again. Please see below.
And so this is Christmas! This week the Federal Government finally announced that they will loosen the purse strings in an effort to begin saving thousands of Australians living with Hepatitis C. This has been a long time coming and for thousands and for many years it looked like a dark tunnel without end.
My dad was diagnosed with the Hep C virus 15 years ago, Genotype 1b, one of the most common. Since his diagnosis he has only ever been offered Interferon based treatments which involve daily injections and side effects such as vomiting, hair loss, irregular heartbeat, blurred vision, fevers, insomnia, seizures, depression and the list goes on. These side effects and the very low chance of this type of treatment resulting in a cure for my dad's genotype were the reason my dad and many others hesitate to undergo the treatment because if it doesn't cure you, chances are it can leave you worse off.
So we waited and waited. Year after year. For an affordable alternative. For some advice. . . blood test after blood test. Dad began considering participating in new studies in the hopes that something would be better than nothing...yes, we were at that point.
In March, I accompanied my dad to his Specialist appointment because I had noticed his health deteriorate. It was here that we were told he had cirrhosis of the liver. The Hep C virus had attacked my dad's liver for so many years that it has scarred and toughened his liver to the point of it becoming cirrhotic. We were offered a new alternative treatment that cost $89,000 for a 12wk dosage but seeing as dad's liver was now cirrhotic we needed 24 weeks...so an impossible $ 178,000 but at least the chances of a cure were getting close to the 70% mark. What were we to do? Was this it? No real or attainable solution? I didn't want to watch my dad slowly shut down in this most horrible way or watch it turn into eventual liver cancer. I asked myself, how does the Health Minister sleep at night knowing that hundreds of Australians are dying every year of this disease in a first world country while in countries like India, Egypt, and China treatments which when combined into tablets ( no need for injections ) were proving to give a 97% to 99% chance of eradicating this virus ( for about $1 a tablet )? Why were these drugs refused year after year in meeting after meeting when proposed as being listed on the PBS for the thousands of Australians waiting in the wings? How is a 72 year old pensioner expected to pay hundreds of thousands of dollars on a 70% chance of a cure?
I was appalled, furious and incredibly sad but never hopeless.
I took months off work and everyday I woke up to look for an answer. I contacted several doctors in Australia and overseas. Finally, one day, I heard something different to "no, this is the only way". A liver specialist from Chile, put me in touch with a PhD student in Australia who had cured himself from Hep C by importing the right combination of medications. In my research I found that a 3 month treatment could be legally imported if accompanied by a legitimate prescription. I was offered help by a PhD student in another State who had helped many others access the required medications we all knew existed in an effort to save their own lives. However it was crucial to understand that these drugs were not in any way regulated and so we'd be taking an incredible chance...but like many before us, we were willing to do anything. I started to contact compound chemists who might be willing to put the imported medication into tablet form and also doctors who'd be willing to monitor dad's bloods while on this treatment. I had a lot of doors shut on my face as despite a patient's desire for doctors to do their due diligence with regards to saving lives they are also tied down by the fear of legal ramifications despite what I would hope would be their own willingness to help.
I continued to knock on doors and call numbers and then one morning my husband sent me an article on the HepC Buyers or FixHepC...a doctor in Tasmania standing tall above all others in Australia who was helping Australians access their own cure. The treatment that was 97% effective against dad's genotype was within reach. He was able to facilitate the checking of the imported medication and delivery of the oral treatment ( in tablet form ) as well as offered to help monitor my dad's bloods throughout the 24 week period. I spoke to him face to face and he confirmed everything I had read...it was incredible. The 24 week treatment cost us $5,700 ( versus $178,000 ) and we put all our savings together and in good faith sent the form through to begin the process of importation, validation and encapsulation. The treatment took weeks to arrive and as each week passed we wondered even if we had thrown that money away it was the closest we'd ever been and so it would all have been worth it.
And it was.
My dad is currently in his 6th week of treatment and the virus is non detectable. He is in the initial stages and he is responding as well as could be expected. His levels are normalising with each week of treatment. He needs to maintain these results for 6 months before we start using the word cure. But we are hopeful. As always.
I decided to write this tonight in the hope that if this is the first story you've read about the harrowing road some have travelled to access an already existent cure, I hope that it will also be the last. Because if mine is the last story you read then that will mean that today's news about the Federal Government spending $1 billion to subsidise Harvoni, Sovaldi, Daklinza and Ibavyr; drugs that were previously $100,000 will, in March 2016, cost pensioners $6.10 for a 12 week treatment, drugs that have over a 90% cure rate will be accessible to the 230,000 Australians living with Hepatitis C, that we can finally, once and for all get rid of this virus and hopefully along with it will also go the stigma and ignorance that surrounds it, as it doesn't only happen to intravenous drug users or those judged for promiscuity, it also happens to everyday individuals like our parents or grandparents from a visit to the dentist or the hospital at a time when needles were sterilised and reused instead of thrown out.
As I type this tonight, I sit in hope for a better future for those of us that have for so many years wondered when that tunnel would end, for those of us that have watched our loved ones deteriorate and for those that have regretfully lost someone dear to them while all we could do was wait. As I wipe away tears of joy and uncertainty from my face, I hope that for all of us that tunnel is now ending in a promise that will be kept...for all our sakes and come to fruition March 2016. I hope for all of us that we have waited long enough. And I hope this is the beginning of the end of this silent epidemic and of the stigma attached to it. This is my hope. This is my dad's hope.
Thank you all for reading this today and thanks to those of who wish to SHARE it far and wide in an effort to keep the government accountable...we wait once more until March next year.
I felt very moved reading you and your fathers story. Thank you for sharing it to the world of Facebook and educating people who may be unaware of this virus. And for helping to keep the Government accountable.
I wish you and your father a wonderful year ahead and for him a healthy 2016.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
...and so this is Christmas....
7 years 9 months ago #6338
Beautiful. You are an amazing daughter. I have two amazing daughters who are so proud of me for ordering my generic via this amazing site which has liberated so many of us who have been ravaged yes ravaged by interferon and other meds. thanks for your brave poignant post, love from the little mermaid here.
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
Aww Dafne, you are an amazing daughter! Best wishes to your dad, I think we may have had a discussion earlier in the piece? This is a miracle and your dad can now live and love in better health. Happy New Year xo Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.