29th December 2015
As the year comes to a close I feel a great satisfaction of how things have turned out in Australia, the result of the work of many people.
I particularly think of the nurses at the Hepatitis Clinic in the Royal Hobart Hospital who were so supportive of people treating themselves with generics. I think that the Hobart Hepatitis Clinic was the first to openly assist people who came to them with the generic treatment option and then organised BMS compassionate Daclatasvir to go with the Indian generic Sofosbuvir.
The Royal Hobart Liver Clinic was very soon followed by the Cairns Base Hospital in North Queensland and, when it was almost impossible for people in Queensland to get a prescription for generic Hep C meds, the doctors in the Cairns Hospital were writing them for every person with Hepatitis C who came to them.
Slowly this spread through most of the hospitals in Australia until the only one that was not prescribing and supporting Hep C patients using generics was Princess Alexander Hospital in Brisbane.
So it has been a good year in Australia, but in other countries the news has not been so good. In the USA, where the FDA has discretionary powers about which drugs they will allow into the country, the situation is very bad. The FDA continues to block access to affordable Hepatitis C treatment for US citizens. Personally I would consider that the FDA is directly responsible for the deaths of thousands of US citizens every year because of this. And this not even taking into account the terrible suffering that the FDA inflicts upon more than one million US citizens with Hep C endure because they can not access treatment for their Hep C.
But there is hope because I and others are sending generic Hepatitis C treatments to the USA and also helping people from the USA access the meds themselves by travelling either to India or Australia.
Below is an email I received today from a US citizen who travelled to Australia to pick up her generic Hep C meds.
I’ve been home from Australia for a week now. I was denied treatment for Hep C here in the USA. I saw your blog and right away trusted you... something told me you were genuine and really cared about humanity. Your empathy for all of us out there with hepc going through the whole circus act of applying for drugs with our doctors only to waste time and be denied the life saving drugs we need really impressed me. I knew you were a voice that would change my world, and as of today you have.
My Doctor called to tell me there’s been a miracle . My blood work came back with zero viral load, he couldn’t believe it because I had not told him I was taking the generics. Then I told him I’ve been taking generic meds from Australia for 3 weeks now. He was amazed!
But I already knew the drugs were working . After 19 days on the generic meds I got when I visited Australia a few weeks ago I woke up and did quite a list of things before I even had my tea, I sat at the end of my bed and started to cry.These were tears of JOY . I HAVE NOT FELT THIS GOOD IN YEARS!!!
I DIDN’T take 3 hrs to get up out of bed.
I wasn’t in pain & exhausted .
I felt like I was 20 yr old again.
I felt alive!! Not like I was dying.
It is an outrage the greed of these people who run the drug companies are wanting to make a profit out of dying people.
It is unacceptable that they have the right to play god, to say who can live and who can die.
Would they wipe out the human race playing this game? Holding governments hostage to pay these ransoms? Only giving the drug to those who ahve the money to pay.
If the polio vaccine was withheld for untouchable costs there would be no more people.This is a human rights issue and all involved should be tried as criminals . The worst kind. CRIMES AGAINST HUMANITY ! !!!! And the USA’s FDA is complicate by preventing US citizens getting these life saving meds.
I’m reading your blogs and articles and if I could get the courage to get the news involved I will. I’m wondering if it’s OK that I tell my doctor to refer people with the same problem to me so I can give your information to them so they will live. Is that OK with you? I am so very grateful to you words can’t say. I’ve been thinking about you all week because I knew meds were working . The world needs to have many more courageous , ethically correct humane men like yourself, it would lead to a wonderful world. You’ve made a difference that’s what it’s all about.i will never be able to thank you enough.
Anything that I could do for you please ask, I owe you and Dr freeman my life.
I never thought I’d be crying tears of joy.
Thank you from the bottom of my heart.
Another interesting thing that has arisen from talking to folks doing generic Hep C treatment is the connection between Hepatitis C and other chronic health problems. This keeps coming up again and again from people who have been suffering from some apparently unrelated health problems and then when they start their Hepatitis C treatment and the Hep C virus is gone from their system, suddenly the other health problems clear up.
I certainly had this experience and here is one of a number of emails I have received on this subject.
I know that i wrote many an email to you discussing the negative side effects i experienced at the beginning of my treatment.
I thought i would take this opportunity to mention a couple of GOOD side effects from Twinvir.
I have had severe Psoriasis ( a skin disorder) for about 30 years... i had treatments varying from UVB, to pills to creams... and while it has gotten better since my retirement, it still persisted on my elbows, knees and shins.
Since taking Twinvir, the degree of irritated skin (my plaque psoriasis) has diminished greatly as well as the daily itching. The last is very important as it is itching while i am asleep and the subsequent scratching (while asleep) that has been a constant source of re-injuring the skin.
Secondly.. since my retirement i have had various “bowel” issues. Mainly bouts of diarrhea then constipation. I tried taking anti-parasite meds and sometimes it would clear up for a month or two... but inevitably, the condition would return. I just accepted it as a part of daily life, as it was not a big inconvenience, really. (Isn’t it amazing what we can adjust to and call “the new normal”)
anyways... since the start of my Hep C treatment, this too has gone completely away. My bowel movements are regular and normal! Hooray hooray.
So... don’t know if you ever hear much about positive side effects.. but thought i would put that out there.
Week 6 (out of 24) and moving on.
thanks again for all your support.