3rd September 2015
A lot has happened since I last had time to write anything as the flood of emails has not abated and that consumes most of my computer time. Some very good things are happening but I want to start off with a theme I have discussed previously. The desperation of people with Hep C.
I would like to start of with a metaphoric story:
A person is in the desert dying of thirst, they struggle on searching for water until one day they come upon a man with a water cart. What relief! Water and plenty of it... the suffering is over.
“Please give me water,” the dying person begs.
“You must pay me for it first,” replies the water man, “This is my business and I need to make a profit.”
“ I am happy to pay,” replies the thirsty, dying person, “I need about two days of water to get out of this desert. How much would that cost?”
“That would be $120,000,” answered the water man.
Dismay and anguish swept across the dying person’s face.
“But that is impossible, I do not have that amount of money. I am dying of thirst, surely you can spare me enough water to save me? I will give you all the money I have!”
“No,” answered the water man, “This is business, you must pay my price or you must die, it is your choice.”
The thirsty, dying person begged and pleaded but the water man refused.
“Buy or die,” was his only response.
Eventually the dying person died. The water man covered the body with some sand so it would not offend other potential customers and, pouring himself a large glass of cool water, he returned to waiting for someone who would pay his price.
And so it is. Every day I get emails from anguished and desperate who are dying of a disease that they know can be easily and simply cured, who are dying because they do not have enough money to pay the water man’s price.
Every week I get at least two emails from people who tell me that they have been contemplating suicide because of the overwhelming burden of the Hepatitis C virus. The social and personal stigma of it, the debilitating hopelessness of it.
I am pleased and humbled to be able to offer some hope to these people, the cure is there and it is accessible and affordable. There is light at the end of the tunnel. There is hope. There are other water men.
The New Medicines Are Now Available
There are essentially four available non-Interferon based treatments that effectively treat all Hep C genotypes. There are other treatment options but these one are all available as some form of generic now. They are:
- Sofosbuvir + Daclatasvir
- Sofosbuvir + Ledipisvir (Harvoni)
- Sofosbuvir + Simeprevir
- Sofosbuvir + Ribavirin
According to the 2015 EASL Report Hep C treatment summary these combinations, or mixes of them, will give a cure rate of above 95% on all Hep C genotypes. The duration of the treatment and exact combo will vary according to the individual’s liver condition as cirrhosis will extend the time of treatment and may require the addition of Ribavirin.
But the fact is that these are all available now.
Sofosbuvir and Ribavirin are available as tablets from India now.
Ledipisvir, Daclatasvir and Simeprevir are all available as API concentrates from Mesochem in China.
If you live in Australia Simeprevir is also available on the PBS and can be purchased from the chemist with a prescription from your doctor.
Please use the link below to reach this simple but accurate diagnostic tool;
Hepatitis Australia and the Issue of Drug Companies Sponsoring Advocacy Groups
You may have noticed that I have been grinding an axe about the issue of Hep C advocacy groups taking sponsorship from the big Drug Companies. I use Hepatitis Australia as an example because they are the peak Hep Advocacy group in Australia and because I know that they get about $240,000 p.a. in “sponsorship” from the drug companies and I believe that this large amount of money greatly influences their policy decisions. It might not but it appears to me that it does.
Here is an example in an email I received today from a leading Australian Liver Specialist.
I was just curious about how you felt about Hepatitis Australia.... I wrote a tiny article for that site (that I had contributed to with advice fairly extensively over the years) suggesting that generic DAAs may become more generally available (and was quite specific and deliberate about NOT mentioning any methods of obtaining them or who might be supporting the acquisition of the DAAs or the patients who elected to take them) and very promptly got “you are permanently banned from using this site” in reply.
Given the desperate positions of some of the people reporting their situations on the site I thought it a little odd.
Now what does that suggest about where Hepatitis Australia’s loyalties lay?
Another angle on the same theme. Why do half the Liver Clinics in Australia support patients who choose to use Indian generics to treat their Hep C and why do some liver clinics refuse to support their patients.
I was told by one person who went to a liver clinic in southern Queensland that when she asked for a prescription for Indian generics from the specialist there the specialist sneered and said “If you want to use Indian drugs go to India and get treatment there.” Nice doctor that one! Charming, full of compassion (not).
Here is another email from a person who brought in Chinese APIs, Sofosbuvir and Ledipasvir to make an Harvoni equivalent.
I have had great results after only 8 days of using the meds.
All my liver functions are now back to normal.
I have not done the viral load yet, next week I’m due for another blood test so might ask the nurse to include that test.
St. ###### Hospital (Sydney) have been really horrible so I moved to Prince of Wales under the care of the Head Nurse ##### who is really wonderful.
She mentioned she had been in contact with you.
I have been quite active on MedHelp website under the name ####### espousing the virtues of Mesochem.
I have not referenced your blog, or you by name, so was wondering is it OK for me to reference you and your blog.
I have found it dumbfounding that some medical people are actually deterring people from seeking help.
Makes me wonder who they truly are?
Why would you tell people who might have months to live, or scheduled for liver transplant, to wait for 6 months or more when the cure is available now? Dumbfounding!
The pharmacist ####### made the meds into separate capsules; one of Sofosbuvir, the other with Ledipasvir. So I take the 2 capsules daily.
Thanks once again for pointing me to Mesochem, and hopefully SVR.
So we have some clinics and doctors giving fantastic support to their patients and the patients getting fantastic results and getting cured and then we have doctors and clinics refusing to support patients, refusing them life saving treatment.
What if going on here????
Are these people so lost in their prejudices and egos that they no longer care about the health of, the lives of, their patients?
What are they thinking?
One last thing..... my email account is now secure.