TOPIC:

While it saddens me that doctors remain skeptical about generics this is not unexpected, nor is it necessarily a global conspiracy of Big Pharma bribes and kick backs. Conservatism in medicine is normal, and on the whole protects patients for embarking on new treatments before they have been reasonably proven. Fear of making a mistake and being sued for it is also an ever present concern - their are probably no doctors who are not at least aware of colleagues being sued by patients (rightly or wrongly). At the last medical dinner I went to fully 50% of the doctors there, all highly respected, had a current medicolegal complaint they were dealing with.....

Ok, so that's enough background the current reality is that only a tiny minority of doctors will willingly participate in generic treatment. A larger minority will monitor patients on the basis of duty of care, and not being the prescriber the risk of not monitoring is higher than monitoring.

So here is an approach that was successfully by a number of patients last year, when generics were very fresh and out on the bleeding edge.

It plays to simple psychology, and while it might be viewed by some as deceptive conduct, and indeed I am not suggesting you do anything like this, it did conclude with useful outcomes.

A perfectly reasonable story is that you want to get treated and can get the money (borrow, mortgage, inherited whatever) for treatment. Do not mention generics.

On this basis ask for the baseline tests (bloods, genotype, viral load, fibrosis) to see if you need to treat now. Then you are set. Maybe your doc will even write the script. Of course have a crack at free insurance treatment if it's available.

Now go and source the generics using a service like FixHepC and doctors from GP2U or Monkmed to script it. You have your baseline so this is easy.

Then next visit, when you have the generics and have taken for a month revisit the original doctor and spin a tale about a friend who told you about generics because they are SVR12. Even if you don't have such a friend it will only take a day on the forum here to find one.

Then say you've been taking this generic medicine (show box) for a month and feel fantastic. You will probably be asked for the box so make sure it's empty.

Then ask for tests to monitor your progress.

Most doctors are curious, and even if totally anti-generic will almost certainly test (to prove they don't work) and then when the results come in they will go I see it but I don't believe it and probably call you in for a retest.

The key thing at this point is that you are like somebody who say arrives at ER/DEM with a heroin overdose. While I would not prescribe morphine to them in clinic, I would attend to the problem at hand because I have a duty of care to do so irrespective of causation.

This is not actually fiction. I know dozens of patients who did exactly this last year and the first person evidence they provided slowly changed the status quo.

As each (not unreasonably) skeptical doctor saw the results of medicine they knew existed but could not access each generic rebel patient tilted the balance..... In the bigger clinics the volume of patients turning up undetected and clearly not unwell made a compelling case for generics in a way that no scientific paper can.

In medicine we are taught "Primum non nocere" which is Latin for "first do no harm". You the patient, can personally prove the no harm, opening the door to this part of the Hippocratic Oath

I will use treatment to help the sick according to my ability and judgment, but never with a view to injury and wrong-doing

I have relied on human curiosity and was fine.

In 2010 I was diagnosed with hepatitis C and F0/F1. I waited two years, until 2012, the treatment with interferon. And I refused the interferon! My decision was easier to take because of a great GI doctor, at the end of the career (70 years). He encouraged me that soon there will be other less invasive options than interferon + ribavirin.

The GI doctor whom I refused the interferon indication was not happy but accepted my decision and I just made annual bloods and tests echography / fibroscan.

In 2015 I explained my GI doctor that I want to treat my HCV but not with interferon. The treatment with DAA was and is still available only for F4. So I said I want / can buy HARVONI. Of course he was surprised and asked me if I knew how much it costs 44 000 Euro = 50 000 USD. My response was that I am trying to get the money.
So I asked him if it is possible to give me the prescription for HARVONI, to monitor me during / after treatment and what other bloods / tests to do. I did the bloods / tests. When I received the prescription, I remembered once again, that the active substances must be specified, SOFOSBUVIR and LEDIPASVIR, like any prescription. I translated the prescription in English at an authorized translator. With this prescription I was in Bangladesh, at Incepta factory, and got medication for 12 weeks, according to medical indication. It was the end of November 2015, and India was still not selling generic medication for HCV.

The doctor said YES!

My GI doctor told me to come to him before the start of the treatment. So I immediately began the treatment.
On the visit I made to the GI doctor, I informed him that I had money only for TWINVIR, generic Harvoni and that I have already begun the treatment and I feel very good. I gave him the link to FixHepC. He saw that a doctor in Australia have tested the medicine and is identical to the original and all your success stories with generics!

From now on our collaboration worked well, within the limitations of NHS in my country! Although he was not happy with my decisions and I forced his patience, the curiosity won.

When I had clear results, the GI doctor asked me details. I was the first patient treated with generic medication for hepatitis C in that clinic. I gave the link to all patients / doctors / nurses who wanted to know more. I spoke with everybody who contacted me for more details.

From my point of view, in my country, Romania, the patient must have the initiative if is not F4 and don't want interferon treatment. He must be determined. There are good GI doctors that are willing to help you!

But in order to be determined you must have access to information, basically the internet and English language.
This was my advice if the person is not used with the internet nor with English language. Everybody have a child or a brother or a nephew or a friend or an acquaintance that can give you the information you need to be determined.

I wish you good health and good luck to all sufferers, including those with hepatitis C!

My experience in getting the prescription started with the research I was making about generic the HCV generic drugs, collecting trustable information about these generics (press releases, european journal of hepatology, information about the REDEMPTION trials available on clinicaltrials.gov, list of the manufacturers who produce the HCV generic drugs).
It is also to be mentioned the support I got from dr. Freeman - to make me trust in the generic drugs and to advice me to ask my Romanian doctor's support which, after having showing the documentation I collected, gave me the RO prescription for Sofosbuvir and Ledipasvir.

Couple of additional points from my experience:
- when I discussed with my RO doctor, I let my dr know I am decided to go on the generic path and that I assume this decision. I let my dr also know, that I will not go on this path only if the substances from the drugs would have been wrong for me (which was not the case, but you never know.....that's why you need a doctor to make sure you do not take the wrong treatment).
- in one of the posts I placed on this forum, I made the remark that a patient needs to make team with his/her doctor in getting treated, especially in the case of generics. Let your doctor know what information you have about hcv generics and ..... do not put unnecessary pressure on him/her. Have in view that in your country there might be laws or rules of the healthcare system which might restrict/limit him or her in initiating the discussion about the hcv generics. But when the patients starts the discussion and is prepared for this, that's a completely different story. And also have in mind that your doctor has a variety of patients, some being more open, while others being very questionable or having critics related to the generic drugs, so ... do not be surprised if your doctor is somehow not so talkative about such subject.

- in a world full of doubts, where people around are asking "how can you be sure about these generic drugs", it can become very difficult to resist the "temptation" to give up. Well, this is the key point where I had to decide (yes/no) to generics, so have in view that it is up to the patient to take such a decision!


@isaing4: I agree completely what you wrote above, especially the part related to the access to information of RO patients. On the fixhepc platform there exist useful information, partially translated in RO language and available as bilingual PDF files (RO+EN), to support those who are not able to understand English. It would be great if one day, some relatives or friends would have the possibility to print some of these pdf files and give it to the patients.

Cheers,
RHF