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Thanks for posting this. High volume, low cost generics are what is required.
YMMV
If you are well with low fibrosis it would be sensible to wait and see.
These meds will get onto the PBS eventually and hopefully everyone who wants access will be able to get access.
I wish it was there now because for people at F4 time who have been refused compassionate access the clock is ticking.
It’s there when it’s there and dealing with the demand will be a problem but I’m told GPs may be allowed to help which will be required to handle the numbers if the tap gets turned on.
At the moment this is the best that can be done for those who need treatment now rather than later.
YMMV
Can I say “Twinvir is in the building!” – with due homage to the king.
Which naturally segues into….
[video]https://www.youtube.com/watch?v=SBmAPYkPeYU[/video]
YMMV
Your priority is more about starting than choice because fibrosis is progressive but regresses in the face of reduced or zero viral load. The more fibrosis you have the harder it will be to get to cure.
There is not perfect choice. Take the Sof+Dac tomorrow. Continue to think about the other options while you get better.
You’ve heard from someone who has had Sim. I have no idea, never used it. Could be bad luck could be common.
YMMV
- It isn’t
- It can and it can
Yes, keep it clean, dry and not too hot.
You need the correct dose taken daily. The capsules are optional.
My first patient to reach VL 0 weighed it out daily and swallowed with water.
Capsules are convenient.
Capsules are not cure.
All you need is to swallow enough of the correct meds daily.
YMMV
I see patients online and make Australian prescriptions for Hep C medications to a Hep C patients.
Seems like the right thing to do to me.
You might, for example, choose to use that script to import medication into Australia under our personal importation guidelines which don’t seem to specify that personal importation relates to the precise geographic location at the time of the person making the import at the time it crosses our border.
Nobody in Australia can legally export Sof/Led to the USA because that would breach Gilead’s patent which gives them the right to control import/manufacture/export here. It is important that the rules be obeyed to the letter.
If, for example, you happened to be passing through Australia I could see you online while you were in Australia, thus keeping my medico legal insurance happy I was not consulting with patient in the USA because I would not be.
If it also happened that you had imported Hep C medication into Australia that would be a happy coincidence.
I could not then see any reason medication you might have previously chosen to import should not be shipped to your Australian address while you enjoy a holiday in our beautiful country, after all, that clearly that is not export.
And I guess you could take your Australian prescribed medication back home accompanied by your Australian prescription like many tourists do, but I’m a doctor not a lawyer.
It’s hard to see it being a misdemeanor or a felony to carry life saving medication with no addiction or abuse potential across a border, but I’m a doctor not a lawyer.
I’m told the “It’s for personal use” excuse does not work, but I’m a doctor not a lawyer.
YMMV
Yes, you’re right, but we will fight to create a balance between patient rights and patent rights.
The only difference between patient and patent is the missing ‘i’. That ‘i’ is you.
While this site may be shut down we keep regular backups so in that event I expect it might just pop up, missing a few hours data somewhere else. Any pentest experts, threat analysts and general server admin types with a view to keeping things active speak now or…..
On that note anyone who would like to set up a FixHepC Buyers Club node in their location should drop us a line. The more nodes the harder it will be to stop. Chop off a leg here, and we just grow another one there.
Could be it goes like this….
[video]https://www.youtube.com/watch?v=pJAYsKjJtM4[/video]
YMMV
Hello Vicki,
If you are < F3 then 12 weeks Sof + Dac should do. If F4 then 24 weeks Sof + Dac +/- Riba F3/F4 is grey. Fibrosis is a spectrum. F0 vs F4 is easy. At the upper middle....
YMMV
As a rule of thumb any medication should be kept:
- below 25-30C
- not frozen
- out of the light
- dry
The US army has shown the typical 2 year expiry date on medications does not mean they are inactive. In fact they have a thing called the SLEP (Shelf Life Expiry Program) which in effect says don’t throw stockpiled medications out when they pass their expiry date.
Please note that the US Army keeps their medications in environmentally controlled conditions, rather like wine buffs. Cool, dry and out of the light.
This article is interesting:
Be aware that tetracycline (for example) is an antibiotic medication that really does “goes off”. I have not looked up the reference but you can.
The fact is that these new meds have not been around long enough to really know.
A typical shelf life cool, dry and out of the light is 2 years so 2-3 months will not matter.
YMMV
At the moment, in Australia a private prescription would be the only way to access the medications, although as far as I know nobody has any stock.
The proposed and pending PBS listing is and S100 listing.
S100 is not a – do the S100 course and you can prescribe S100 medications.
It is a do the S100 HIV prescriber course and you can prescribe S100 HIV medications (but not any other S100 medications).
So when the PBS listing happens it will be under S100 – well at least that’s what the PBAC suggested. At that moment Infectious Disease Physicians and Gastroenterologist will probably be “grandfathered” ie given S100 rights because of experience/qualifications.
GPs will need to do a specific course, pass an exam, and then (probably) spend X days/consults with an approved S100 prescriber to get their ticket.
This process is exactly what was required for me to be able to prescribe methadone. A 2 day course at Sydney University. An exam. And then to actually get the ticket you have to sit in with someone and see some patients.
Only after doing all that can a GP get their ticket to prescribe.
It’s a good process that makes sure people prescribing know what they are doing, but it is also a barrier.
Hep C patients are unusual in that as a group they are very, very well informed about the best treatment, but with things like Daclatasvir that have a lot of interactions to consider it’s a little more complicated than meets the eye.
I’ve been fortunate to have experts offer me personal advice. For example one expert pointed me to
http://www.hep-druginteractions.org/checker
Which is a great tool for checking drug interactions. At his unit they use it all the time and file it in the notes.
Now I know about it I use it all the time, but it was important need to know stuff that when I met patient zero I simply did not know.
YMMV
As you note the data is currently inadequate to be definitive. With 15 kPA on your fibroscan you are F4 and with that the cirrhosis sub groups are the ones most applicable to you. 24 weeks of treatment will be required.
On first principles we observe with HIV there has been a progression from 1 to 2 to 3 (or more) medications and HAART – Highly Active Anti Retroviral Therapy. Given HIV and Hep C are similar there are probably useful lessons but it is still experimental.
Looking to mechanisms:
- Sofosbuvir is a pan genotypic RNA polymerase inhibitor
- Daclatasvir is a pan genotypic NS5A inhibitor
- Ledipasvir is an NS5A inhibitor
- Simeprevir is an NS3/4A inhibitor
- Ribavirin is a guanosine analog (fake RNA component)
Failure to clear represents the selection of resistance. The way I explain it to patients is like this:
- You have 1000 soldiers and you shoot them all with a machine gun
- 100 were wearing bullet proof vest so you walk along with a sword and chop their heads off
- 10 “idiots” put their vests on wrong, covering their necks so you drop rocks on their heads
- 1 “idiot” put the armour plate meant for the front of the vest on his head….
Each drug has what is known as a log kill. A log kill of 1 kills 9:10, 2 kills 99:100
Log kill reflects the fact that for any one drug there are typically some survivors and the next drug’s job it to “take them out”. It makes sense that the next drug should use a different mechanism to taking Ledipasvir + Daclatasvir would not make much sense because either one can inhibit NS5A for GT1b.
If all of Sofosbuvir + Daclatasvir + Simeprevir were available it’s hard to argue that would not be gold class.
If you want to go totally experimental Ribavirin has been shown to provide impressive results in cirrhotics with Sof + Dac so HAART in Hep C might end up as: Sof+Dac+Sim+Riba.
The fundamental problem with small trials is the margin of error. At n=100 this is +/-10% so the 96.6% you might read should really be 96.6% +/- 10%. In other words the confidence intervals of the various options overlap making it impossible to be definitive.
Your priority is more about starting than choice because fibrosis is progressive but regresses in the face of reduced or zero viral load. The more fibrosis you have the harder it will be to get to cure.
YMMV
The bit “actually containing the right active ingredient” way the fundamental issue I had to solve to get involved. This is not normally my problem, but in this context it becomes my problem.
I suspect if we can provision robust confidence in overseas source medications that the medical establishment’s attitude.
The buyers club should also have an independent testers club so that patients can source medication from anywhere then send a sample for testing to provision confidence the supply chain used.
This won’t convert all doctors, but it may well convert enough.
YMMV
Bangladesh is on holiday at the moment.
Eid ul-Adha in Bangladesh
Eid al-Adha is an Islamic festival to commemorate the willingness of Ibrahim (also known as Abraham) to follow Allah’s (God’s) command to sacrifice his son Ishmael. Muslims around the world observe this event.
YMMV
It takes time for your liver to recover and also time for the numbers to return to normal.
If I was you I would be grinning from ear to ear!
The odds are 20:1 in your favour about getting to SVR.
Have you noticed a difference in how you, as in your body feels?
I have one patient, a bricklayer, who said “I used to have to take a nanna nap after lunch, but now I’m back on the tools all day. The boys are all wondering what’s come over me!”
YMMV
Some of the “please click here to confirm your registration” emails seem to get lost so unless your account is from abcdefghijk@spammail.org (the bot links look a lot like this) accounts get approved by the admin people each morning. Anyone posting spam gets banned and deleted within a short time.
YMMV
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