This message is a special one for me as today I took my last pill from the 12 weeks HCV treatment that I had. Somehow I've preferred to wait to reach the EOT in order to share my story, I guess mainly because of an unknown superstition that I had.
So here it is:
First of all I would like to warmly thank to my 2 Angels: Greg Jefferys
and dr. Freeman
. They both supported me with useful information about HCV generic medication, encouraged me to take the treatment (yes, I was initially afraid that generic drugs might be fake or poison
) and to get the medication (@Greg: not sure if you will ever read this, but THANK YOU VERY MUCH!!")!
Also many thanks to all of you
who posted messages on this forum! I see you as true friends and sharing your knowledge, experiences, believes and hopes helped me a lot in the medical journey that I made
1) Before HCV
I was born in Romania and I had my childhood during the communist times when children in schools were vaccinated using the same syringe (yes, one syringe used for a class having +30 pupils. Only the re-used and sterilized needles were exchanged after every child was getting the vaccine). Also in my childhood, with similar re-used syringes I was getting some rabies injection (I was bitten by a dog on the street). In the '90s, immediately after the Romanian revolution, I went for some dental works in a couple of private dental offices where I am not sure how well the instruments were sterilized.
No drugs, no blood transfusion, no risky sexual practices, no piercing, no tattoos. I was very often asked these questions, so I prefer to specify this in advance.
How did I got HCV? I do not know, but the aspects mentioned before offer some hints about the possible causes. Anyway, once you have HCV, I am not sure at what purpose does it serve to know how you got it, except for helping others know how to prevent getting HCV. And of course, for statistic purpose!
I preferred to write this piece of information having in mind that some people, many I think, still tend to put a stigma on HCV patients. They shouldn't and neither should they judge a person because of having HCV.
2) HCV diagnosis.
I was diagnosed with Hep C 13 years ago. At that time I had no idea what hepatitis C meant. I knew about hepatitis A, so... I hoped initially that hepatitis C was easier to treat because it had the letter "C", which is after the letter "A"... I was clarified asap I should not have such hopes... And so in 2003 I applied for the interferon treatment. I was told I should wait perhaps one or several years, because the waiting list was quite high, so I waited 5 years till 2008. I was never getting a clear answer about my application for the treatment, but in 2008 I was informed that my application was lost, therefore I applied again and waited "only" another 2 years. I started the interferon + ribavirin treatment in 2010. It wasn't easy, I experienced the “typical” wide range of side effects, yet I was able to finish it. I was slow responder (UND only after 6 months of treatment), and relapsed soon after EOT. I applied again, this time for the new “triple” therapy (IF+RIB+Boceprevir) and now, 5 years later, I am officially still on the waiting list. The triple therapy is no longer being provided, and I do not qualify for the newest interferon-free treatment. Officially I am in a pending status, but in my eyes, practically I've been rejected.
In all this time that I waited, I was quite “active” in finding ways on how to protect my liver: maintain my energy, balance what I eat, supplements, healthy fruits, doing sport, few alcohol (i.e. occasionally drinking 1 beer or 1 glass of wine, against my dr. recommendation...).
I still question myself today, why I was not acting differently in order to get cured sooner ? Could I have done something in order to avoid waiting so many years. For this question I usually give myself 2 answers, so I guess the right one is any of them or a mixture o both:
- I was acting and thinking like a goose, neglecting the reality around me and the medical system;
- I was having FEAR that if I will be too insistent or too demanding regarding my rights as a health insured person, I would upset some bureaucrat who might decide to not sign the paper that would allow me to get treated. And the number of people who have to sign the papers is quite significant. Perhaps it sounds silly, but remember that Romania was a former communist country, so 10-13 years ago, people were still not so much aware of having rights. And with the thousands of sick people on the waiting lists....and the stigma ….. and the “inherited” way of thinking that “the one who talks too much must be punished”... all these are answering to my question.
3) Getting to know about the new interferon-free drugs produced in India and Egypt
First time I heard about it was in the summer of 2015 by reading an article about the treatment costs of 1000$ in India and many many thousands of Euros in Romania. It was not specified how this wonder drugs were commercially named, so I was kind of blind. I was frustrated about this, but I could not do anything or better say, I was not knowing what I could do. The article was this one www.hotnews.ro/stiri-esential-20178127-c...uvernul-romaniei.htm
→ where in the comments area you may see a recent comment about dr. Freeman's presentation from EASL :D :whistle: . For Romanian speaking people, they will see that there were a lot of comments in May and June 2015, none about how to get the generic drugs and then nothing till Jan.2016 [1 comment] and then May 2016 [1 comment]
. Please see also the bold text where ANM (The National Agency for Medicines) says that “WE CANNOT AFFORD TO DRAW A REASONABLE CONCLUSION ABOUT THE EFFICACY OF THE NEW MOLECULES”. That really locked me. Is this is cure or not. Could I get it? That was my hope. But my hopes vanished when I was told that in Romania it is not accepted as cure and that I have to have patience... And so I entered in a passive status. And being demotivated.
From the medical system in RO I was constantly getting the same message: "there are new and effective treatments now, but you need to wait. Hopefully in 1-2 years you will access the treatment". I was hearing this same message in the last 5 years and that meant to me only one thing: waiting indefinitely.
4) Getting the HCV generic treatment
In January this year, a friend of mine talked with her doctor about my case. She was living in a developed european country and her doctor knew about the new HCV drugs like Harvoni or Viekira. This doctor proposed to my friend to tell me that I could call him. Even though I was hesitating, I made the phone call and it was one of the best phone calls I ever made. The doctor asked me to make the blood tests that we all now know it must be done for the DAA treatment: a genotype analysis, a viral load, a fibroscan and the usual blood tests. I had to pay for this with my own money, approx. 300$, which in Romania is a significant amount of money, but I had no choice, as the Romanian NHS (known as CNAS) does not provide these blood tests so easily. With the results of my blood tests (HCV genotype 1b - this seems to be the genotype that most patients from Romania have) I called back the doctor and so he let me know about Harvoni and gently "pushed" me to get the treatment NOW as my liver was still in a good shape. But HOW to get it was the main question. Nevertheless I started to search about Harvoni, because of its 1 tablet/day regimen and so I discovered the blog of Greg Jefferys and read about his trip to India.
At that time I was not sure whether I could trust Greg. In parallel, in my searches I was seeing also a lot of links pointing to fixhepc.com, which I feared initially it was a scam, because everything I was reading pointed that it was way too simple to get the treatment by compare with the bureaucracy I knew from the national healthcare system (@Dr. Freeman: perhaps if you could make the acceptance criteria in the REDEMPTION trials more complicated, maybe more patients will enroll
..... Just kidding
). I was planning also to go to India, but …. that's a big country. Where should I go to see a doctor? I started to write e-mails to several hospitals from Mumbay, New Delhi, Chennai and some online pharmacies. Some answered me, some not. In the end I decided to contact both, Greg Jefferys and to send also an e-mail to Fixhepc (asking whether they could test for me 1 pill from the drugs I was intending to order from an on-line pharmacy). From that moment further, I got quick and solid support from Greg and dr. Freeman.
So, I've learned how I could get the generic treatment from India, how easy (in terms of legislation)
it is to have it shipped to Romania, but also that it is important to have the support from my local doctor in Romania
So my next 2 challenges were to have the money and to get the receipt from my doctor. The money aspect was quite fast solved with my family's support. For the doctor's receipt, I got very useful information from dr. Freeman that I presented to my doctor and so he decided to support me an gave me the receipt for the active substances (sofosbuvir + ledipasvir).
Here is a tip that I learned: I do not see quite a good idea to just go to your doctor and ask him/her to simply write a prescription for the HCV generic medication!
Please consider the followings:
- Inform your doctor about what you know about the HCV generic medication
perhaps you might want to use this press release from ILC Barcelona 2016 ilc-congress.eu/low-cost-generic-direct-...randed-formulations/
and translated in the romanian language here fixhepc.com/media/kunena/attachments/206...lease-GenericHCV.pdf
or this article written by dr. Freeman and dr. Hill onlinelibrary.wiley.com/doi/10.1111/liv.13157/pdf
and translated in the romanian language here fixhepc.com/media/kunena/attachments/206...iC-no_ini_layout.pdf
, or various information from medical journals where the active substances are presented, etc.
- inform your doctor from where you are going to purchase the drugs.
Have in mind that not only you, but also your doctor is concerned about the supply chain from where you are going to take the medication.
- In the end, in this journey it is good to make team with your doctor
. But ... if your doctor rejects you or if the doctor is unable to propose you a clear treatment option, then seek an alternative. Other specialist perhaps (?!?). As long as a cure exist and it is affordable to you, it's your chance to get treated.
Treat now before it is too late.
Going back to me, receiving the medication was more a question of waiting ~5 days to have it delivered. The most "difficult" thing was to wait those days as I was no longer having patience.
5) Getting treated
- one tablet a day, 12 weeks. Simple, I really do not have much to say about it.
I used the alarm clock from my phone to ring every day at 10:00 o'clock in the evening to remind me to take my pill. I also used a small calendar sheet where I marked with a cross every day when I took the pill. It proved to be a good practice for me as there were days when I was forgetting that I have to take the pill, so my "phone friend" reminded me every time.
In the first 3 weeks I had some headaches and insomnia, but now, looking back, I tend to believe there was a dependency relation between my headaches and my emotional status, having still some doubts and being worried if the drugs really work. After 3 weeks and 5 days I had a VL blood test made and the result was UND. I hope it will stay like this forever. The last 8 weeks went without any other side effect.
How i feel now? In one word, I feel as being cured! And with all benefits that being cured brings, yet feeling like a normal person. Months / years ago I thought that being cured must feel like having a kind of superhuman powers (a kind of Superman, Spiderman, Captain America), but now I see that I did not gain such powers.... I found my peace, I am more calm, I sleep better, I can work more, my mind is clear, I eat slightly more and I enjoy sitting and talking with my friends (which I did also in the past, but required some efforts from my side). And... I no longer feel this pressure that my clock is ticking.
I am heading now to SVR12 and I hope to reach it !!!
6) A word about activism
I remind here again that I am living in a former communist country where until ~25 years ago freedom of speech was a dream and having your own ideas was very often "rewarded" in a negative way. Sometimes I believe we still have a long way to go until we will really be able to talk freely.
Until starting the treatment, all I knew very few about activism. I was not understanding why some people would put a plate in front of their chest with some text written on it or why some others are always in a continuous battle.
Now I have a different and better view. And although activism occurs under various forms and at different levels, I think we can agree that in large, there is violent and non-violent forms of activism. My belief goes for the non-violent one. The simple message to spread about HCV treatment, and here I quote dr. Freeman, is "Generic works" (see here at 9min30sec
) . Starting from this message, other information can be added, so it is up to to each person to decide how, where, when and to whom this simple message will be communicated.
In the last 12 weeks I noticed a pattern regarding the behavior of the people getting treated with generics (I hope I am not wrong – but if I am wrong, please correct me):
- at the beginning there is the "anger" because of the barriers that were faced when trying to get treated through the NHS system;
- then this anger combined with the new knowledge about generics leads to activism in order to help other people. It is this activism that boosts the process of spreading the news about the effective treatment with generics.
- by getting closer to the EOT or after EOT, the activism turns into a kind of wisdom, wisdom about how to better help others. At this stage, some might say that people, who got already cured, no longer care about HCV patients and become passive. I would really question this. A former patient who got cured will always be an activist and will always tell to others how he/she got cured via generics. And although one person can become limited in his/her activism actions (in the end, human beings are limited beings), activism can increase with the contribution of each one of you. So have in mind that whenever you spread such news there will be, sooner or later, someone on this planet who will benefit from your information and so you will have saved one or more lives. If one stays passive, the only life that will be saved will be the own life....
I end this post with couple of points I learned
in this journey:
- Fear is normal.
The fear made me search for information, made me behave cautious, made me get in contact with people I did not knew and get useful information. Without fear I would have probably remained untreated and..... perhaps a “goose” being sick.
- Having doubts and worries is also normal
- I had many, but they are not to be mentioned in this post, perhaps it makes sense to make a separate thread or to simply leave them as they are. Some worries and doubts are gone (the problem was solved), but some are still present (is there any virus hidden somewhere....??) and some new worries came in. It is funny to think that once a worry is gone, another one takes its place. Isn't life beautiful (just kidding)? In fact what I learned is that it is reasonable and normal to have worries. I also learned (again) to not give up just because I have doubts
, rather it pushed me to search for more information. My mood, during the searches I made, oscillated very much between extremely negative to extremely positive, back to negative, then back to positive, and so on...But all this swinging had a good outcome, it helped me to make my choice based on the information I collected and analyzed.
It was THE CHOICE!
So, that's my story...
I wish you all the best, safe journey to SVR12 for those who will start it or are currently on route to get cured and hopefully we will all meet after the SVR12 line.