Hep C Discussion Forum

P. S. Let's not be reckless here.  We would all like to help but providing misinformation is worse than providing no information.  Wonderkid's friend needs to be seen and treated by a doctor.  That doctor will be in the best position to advise on the available options.

If it makes you feel any better, I have the Best Doctors in my area and I too see a nurse, She too is the Best, Yet she tells me nothing instead i find out on my own and i be-leave I know more about it than she does. The fact is you need to know your genotype, that is the most important thing to know, from that you can find out everything else from the internet.

Hello,  I live in Canada and am on the sof and sem.  All the provinces in Canada (except Quebec) share the same drug review board (CDR). The sof and sem have been approved at the Federal  Canadian Drug Review Board.  Then from there it will go to each provinces review board (CDR) to see if they can afford to give it out at the provinicial level.  But right now, it is at the Federal Level.  In Quebec, they have their own drug review board "Iness".    When it gets to the provincial level - then the person can apply for it by filling out the proper forms on a "Drug Exceptional basis", then from there,  the board will review if the person hepatitis is at a late stage.  But you will not be able to apply for "Exceptional Basis" till it is on the Provincial Drug formulatory program of that Province.

As for me, I am living in Quebec with no insurance.  But all my doctors are in Ontario.  I fought the Gouvernment and my doctors who basically did not want to help me because I live in Quebec (french thing - but I do not speak French).  I kept on fighting with them.  I am at stage 4 with cirrohosis. And found out I had cirrohosis by obtaining my medical records behind my doctors back.  She never told me.   Anyway, there is another way of trying to get the drug.  This would be by appying for the drug by "Patient Exception".  The difference between the two are:  1)  Applying by Drug Exceptional basis means the drug has went through the CDR, and now is at the Provinces Provinical Drug Formulatory Program (Quebec it is INESS).  Where the person has to apply through a doctor and fill out the forms for "Drug exception basis"".  Then it will be reviewed by the board.  They most likely will only take on Stage 3 or 4.   Drug Exception basis means you will need the drug for you will die from hep. c in the future.    The second way is  by appyling as Patient exception basis means you need the drug NOW FOR YOUR DYING.

Now, I applied by "Patient Exception" -  I need the drug immediately.  So by doing it this way, you skip all the Provincial bull.  And get the drug at the Federal level.  It is a real frustrating procedure.  I wrote letters at the provincial and federal level, fought with doctors, a doctor dropping me because I live in Quebec, and then putting me back on the list after I reported her to the Director of the Hospital,  worte letters to the Victims compensation bureau etc etc etc etc.  YOU MUST REMEMBER the drug is not on any Provincial Formulatory Program.  I do know that in June the Quebec Drug Review Board will review both sof and sem to see if they will put it on the Quebec Prov. Drug Formulatory Program. 

It sound confusing eh?  But you have to realize if the drug has been approved in Canada, it means it has been approved by the Federal level not the Provincial level.  If your friend has a good doctor (specialist), has insurance or money you can get the drug at the Federal Level.  Or you can try to do what I did, which was apply at the Federal Level on "Patient Exception". 

When I was dealing with Gilead Science most of the people who worked there did not know that Quebec had their own drug review board.  All the provinces share the same drug review board except Quebec.  But thank goodness, I found a person at Gilead who knew exactly what I was talking about.  And this person helped me apply through the Patient exception.  A matter of a fact, this person told me not to even talk to my doctor in Ontario for she was not even on the same page of what drugs were in Canada.  Then one morning, I got a letter from the Quebec Gouvernment and it was my prescription from the Gouvernment.  You can not get the drugs at a regular pharmacy - it has to be affiliated with one of the Pharmaceutical companies.  Bioscript in Montreal.

As it is now, I am on day 24.  And I have not even seen my Doctor because she is insulted that I obtained my drug.  'Rather I am seeing the Nurse who works at the Doctors office who doesn't know dick.  Plus I was told I do not have to know what my viral load is because they ran the blood work in 2003.  So I was told there is no need to run these particular tests.   How is that for stupidity.  I mentioned I am with a group (here) and these people are all talking about how their viral load is dropping.  I was told by the dam nurse, to get off this group because it was causing me anxiety.  I told her off.  If I didn't have this group, I would not even know if the side effects I am feeling are due to the medication or something else.  This may seem like a long letter, but I could write a book on the extreme poor treatment I have received from my doctor (been with her for 17 years), and all of sudden she wanted to drop me. 

Hang in there.   Contact Gilead Science.  Get a dam good doctor that takes your friend serious.  It is no fun having no energy,not doing the things you love, living in  pain, itching night and day, eating baby food etc.  Since I have been on this medication, I can actually eat solid food again.  Getting more energy every day.  Less cramping in my hands and feet. And a hell of a lot less pain on my side.   Don't give up.

Rachel

Hi Wonderkid:

I'm sorry you are experiencing this distress trying to help your friend.  You cannot lawfully obtain these drugs without a prescription and no US physician could prescribe them without a patient consultation and exam.  It is possible that a treating physician in your country could facilitate obtaining these drugs but I don't know that with any certainty.   Your friend may also qualify for some type of compassionate use dispensation in some European countries.  This is something a physician must talk with you about.  

Your friend needs medical care by medical professionals.  If he is in imminent risk of death self medicating him with HepC drugs would be a very dangerous thing to do for him and could also subject you to criminal liability.

I wish you the best.  

Hello Wonderkid, and welcome to the forum. 

I really sympathise with your concern for your friend who is so ill with Hep C, however it would not possible to buy the Ledipasvir/Sofosbuvir combination pill at the moment as it is not yet available even in the US.  And even though Sofosbuvir (Sovaldi) and Simeprevir (Olysio) have been approved and are now available in the US it would be absolutely essential for your friend to take these drugs or any other treatment drugs under proper medical supervision and on advice from his hepatologist or liver specialist. 

I hope your friend is receiving the correct medial care and getting the best advice, and I wish you both all the best of luck.  ~ Jill

(By the way - it`s not really advisable to publish your email address here as this is an open public forum, and so for your own security I would advise you to edit your post and remove it.  I can do that for you if you like. )