Forum Replies Created
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Hi CL,
My experience with generic Harvoni was that I had some headaches during the first 3 weeks and I also do recall having slept a little bit more than I usually do. After the 3 weeks of tx I felt well, with energy, no foggy brain, etc.
My advice would be to use the time and rest enough if you feel you need it, especially if you do not have other side effects to bother you. Also doing some exercises (walking, easy jogging) helps. Also drinking water helps too.
It is great that you started the tx, I wish you an easy trip till EOT and afterwards towards SVR12
Cheers,
RHF
Hi Sven,
your post made me reflect on the following 2 questions:
– what could I tell to a soldier who just finished a war and returned home to live “the normal life”;
– what could I tell to a victim who survived an attack of an agressor?
Trying to answer to these questions made me realize I could not tell too much, it would make me feel compasionate about him/her and the only good advice I think I will be able to tell would be to try to not waste the chance to live well for the rest of the life and to try to support those about whom he/she thinks might need help based on their own experiences.
Related to HCV, I have here in mind that not all people with HCV have to fight it in the same way, only the enemy (HCV) is (almost) the same.
The memories of HCV will remain, I doubt it will be forgotten and this is kind of sad, but what we all get / have got here with these generics is in fact a chance to live a better life and it is up to each of us to decide how to make the best use of it.To you Sven: do your best and do live a better life
, better than the last 10 years!Cheers,
RHF
Hi Gaj & Beaches,
yes, you are right about the ridiculous price of 11 000 Euro shown there – even though this is the price of a nice 1 week vacation in India + medication. Last year, when I was searching ways to get treated, the price of this medical tourism agency was 12 000 Euro
. For a Romanian person 11 or 12 thousands Euro is a huge amount of money. However, there are several BUTs. 1) Before getting to know about Fixhepc or Greg Jefferys, in my searches of how to get treated, I was often seeing this medical tourism package and the “lower” price by compare with the price for the branded medication pushed me to search further about how I could get the generic medication. So …. in the end, it was “pretty good” to me to see the information that the drugs from India are effective.
2) There exist in Romania a support group for patients having all types of hepatitis, however I’ve never heard this group talking openly / honestly about the generic medication for HCV. What I see very often from the president of this support group is a constant demand addressed to the government for more money in order to treat more people and at the same time the president declares often that the patients proceed with desperate actions and risk their lives by ordering the medication over the internet. Personally, I do not like how this president it doing such talking because instead of pushing forward the idea that more people could get treated for less money with the generic medication, the only thing she does is to scare people in not proceeding with the generic medication and many are perhaps convinced to stay ill and wait.
3) In the past year, I was looking at the various news on TV in Romania about hepatitis C and nobody (till recently) was talking about medication from Asia / India. It was like people (especially doctors) were some kind of puppets talking about the treatment of hepatitis C in general and struggled to not speak about the solution coming from Asia. As far as I know, this video would be the first one (maybe I am wrong, but I doubt) being shown on a public television talking about HCV drugs made in Asia.
Overall, I am not too happy about the content of the video, but for the moment I prefer to see the “full half” of the glass: on a Romanian public television it was mentioned that HCV medication from Asia can be used to treat HCV.
Cheers,
RHF
Hi RSF,
you opened a very good thread
.
In brief my own experience:
– no emotional ups and downs until I finished the interferon+ribavirin treatment
– the hell started one week after I finished the interferon treatment. It lasted quite long. Words cannot describe how it is to feel that way, but “feel like hell” is a pretty good description. Strange is that in all this hell situation, the eagerness to live became stronger and stronger.Cheers,
RHF
Hi Sven,
that’s just AN EXCELLENT NEWS !
We were expecting you to reach this milestone in order to tell you: Welcome to the SVR12 club!
Quite a nice journey, ha?
Cheers,
RHF
A recent update: the healthcare system from Romania has just resumed
….. the negotiations for treating ~10 000 HCV patients. F3+F4 patients will be included and some of the F2 patients having certain complications. (https://www.agerpres.ro/sanatate/2016/12/05/cnas-anunta-reluarea-procesului-de-negociere-pentru-tratamentul-pacientilor-cu-hepatita-c-15-12-16 )10 000 patients out of >600 000, this means ~ less than 2% of the sick people will be treated in the next …. (12 months maybe?).
For sure, for those who will enter into the treatment program, this is a very good news, for the rest of ~98% which will remain outside the treatment program I would bet this is NO good news. The only good news to share is that “GENERIC HCV drugs work!”.
Cheers,
RHF
”James-Freeman-facebook” wrote:Back in February 2015 I met a patient with Hepatitis C who was looking to access Harvoni.
What followed was a journey of exploration looking first the India, then to the Middle East, and then to China.
The goal was pretty simple – find a reliable legal way to get the right medications to the right patients.
While on the surface it might seem as simple as doctor writes script, patient gets medication, and 12 weeks later they are cured, it’s not quite that simple. I won’t attempt to speak for any other doctors but my personal concerns included
- Is this legal? (YES)
- Am I allowed? (YES and NO)
- Are there any risks? (YES a truck load)
- What happens if something goes wrong? (SHTF)
- Can I just ignore it and make it someone else’s problem?
Looking at each of these in turn.
In terms of simple legality I can as a GP write a script for just about anything (provided there is a valid medical reason). There is no doubt there is a valid reason to prescribe these medications – they work. A patient can legally import 12 weeks supply of a medication, provided it’s not on the prohibited imports list (these medications are not), and provided they have a valid prescription a patient can possess these medications (like any other S4 or S8 medication – these are S4).
So now we move to the subject of being allowed. The first part of this is really the question “Will the medical board strike me off the register for doing it?” The answer to this is probably closer to maybe than yes or no. Doing it with due care and informed patient consent it should be a no. Done without due care and we definitely get into a grey area. The second part is that to order a Hep C viral load, or a genotype (and have it bulk billed under Medicare) a specialist has to authorise that testing. This is a pretty big deal given each test costs $200. Fortunately I have consultant colleagues willing to authorise the testing.
Now we get to the risks. These include things like:
- Do I know enough about these medications and their side effects to safely prescribe them? (Yes, I can look that up)
- How do I know the patient will actually get the right medications? (It’s not like I’m sending them to a trusted pharmacy down the road)
- What if the patient does not reach SVR?
- Where does my implicit duty to treat end and my responsibility to do no harm begin?
Although I’ve only treated a small group of patients to date the expected side effects and complications are already evident – headaches, anaemia, and treatment failure. I expected to see them all and they are being managed on a case by case basis.
And then we get to the last question can I just ignore it? For me the answer was no, I would not be able to sleep at night knowing I could help, but chose not to….. Although for me the answer was no, I could not ignore it, I would not think any the less of a doctor who declined to be involved.
This site is not the work of any one person. It represents the combined efforts of a group of interested people to help make accessing these life saving medications possible.Hello Dr. Freeman,
I am very happy and thankful you did not ignore it! (I marked the text from your post
)
And this is not just because I got cured, but also because the knowledge you and all other forum members shared here on Fixhepc is crucial in the efforts being made to eradicate HCV.
From my perspective, as former patient, I can say that HCV was a scary ghost not only because it was affecting my health, but also because of the fear “what if someone else, close to me, will become infected”. This is a constant fear that almost all or many HCV patients have, like a parent living with the fear that the own child might get sick or someone fearing that the living partner or friends might get sick.
Now we have the knowledge how to get treated with generics and this knowledge may be used and shared with others.Many thanks for all your efforts!
Cheers,
RHF
