Going to the Apollo hospital in Chennai, meeting the gastroenterologist there and then getting a fibroscan. The bad news was that I had liver cirrhosis. The good news was that I had the phone number of a distributor of generic Sovaldi
I am writing this at Melbourne Airport waiting for the flight to KL and then on to Chennai, where I hope to be able to buy cheap generic Sovaldi.
This morning I got a few emails from folk who are following my diary on the Internet. Some questions about prices of the generic Sovaldi in India which I could not answer. By Monday I expect to have a clear understanding of the prices of generic Hep C meds in India and also the procedures for buying them. As I find stuff out, I will post whatever information I discover.
I really do hope that this blog is useful to folk. Having been through all the Hepatitis C turmoil over the last nine months, and the frustration of knowing that there is a good, effective drug that would cure me available but that it’s so expensive that I cannot afford it: well it is terribly annoying and frustrating. So I hope this story helps folk to get cured themselves.
And I have to say (again) thank God for India; for India being brave enough to stand up to Big Pharma and make this drug available to its own people and all the other people of the world.
Our own politicians are too scared of the USA and the big multinationals, even when it comes to saving the lives of 250,000 Australia citizens and saving the Australian health budget billions of dollars. Our politicians will spend heaps of time and money trying to save two convicted drug smugglers on death row in Indonesia ( and I am not saying that is a bad thing) and they will bully and threaten the Indonesian government about it to save two Australian lives. But when it comes to saving hundreds of thousands of Australian lives by standing up to the big pharmaceutical companies, not a peek from our Prime Minister, not a word: does he even care?
Good on you India for caring about your people and standing up to the bullies.
On the plane…. flying over Indonesia at 11,000 meters on Malaysian Airlines: a few hours before we land in KL and then on to Chennai Airport for a midnight arrival. Yes, I’m traveling Malaysian Airlines, which had just lost two of its planes killing all on board, but I am not at all worried about a plane crash. In fact, I chose Malaysian Airlines because, statistically, it is SO unlikely that anything could happen to another one of their flights (unless you happen to believe that bad things come in threes). I also chose Malaysian because I figured that lots of people would choose not to fly with them and there might be a bit of room on the flight and I was right! The plane is half empty and I get four empty seats to stretch out on, pure luxury! So as I drift off into that airplane half-sleep I find myself wondering/worrying what will happen when I wake up tomorrow and go out to find a doctor in Chennai ???
Is there going to be some kind of red tape nightmare getting the prescription?
What if I have to see a specialist and cannot get an appointment within the time that I have?
What if they do not accept the Australian test results and want to do all their own tests?
There are so many things that might stall things. I’m only in India for seven days. Maybe I should have given myself more time?
But, of course, there is the other possibility that everything will go smooth and the first doctor I see will write me a prescription and the first chemist I go to will have the Sofosbuvir in stock.
I will hand him the prescription, he will hand me the tablets and all will be well.
I got out of the plane at Chennai Airport at about 1 a.m. I was pleasantly surprised by the cleanliness and modern layout of the airport. Even the air conditioning was working.
Walking down the long corridor from the plane to Immigration and Customs clearance I noticed all those little things that remind you that you are in India. The half-finished painting of the walls, the spilled milkshake laying in the center of the polished concrete walkway, where it will lay for hours yet as people walk around it, until the designated milkshake cleaner, from the appropriate caste comes to clean it up.
At the migration barrier, I go to the line marked out for foreigners. I was the only foreigner on board that flight of several hundred people, so I stand alone in front of the foreigner desk.
After standing there about ten minutes waiting for someone to come I start to wander around looking for someone in a uniform. I find a cluster of uniforms gathered around an office doorway chatting. I wave to them and they wave back and smile. A gentleman detaches himself from the group and comes over to me.
“Yes sir, how may I help you?” he wobbles his head and smiles a big smile. Teeth in India are so white!
I explain that I wish to enter India and need someone to stamp my passport and let me through. Another smile, he asks me to please wait and walks off. Soon another gentleman arrives and ushers me back to the foreigner desk that I had been standing at before.
I hand him my passport, he flicks through it looking for my visa, but of course, cannot find it. I explain that I have an on-line issued point of entry visa and hand him the email receipt. He is not familiar with these and heads off to find a superior who comes back, looks at the email, shows the first fellow which stamp to use, smiles at me, wobbles his head and then goes back to the conversation cluster.
Next, I must be photographed and fingerprinted by the new biometric technology. The first problem is that I am too tall for the camera; at a pinch under 6 foot 5 inches even twisted to its maximum elevation the camera will not photograph my entire face. We eventually solve this little problem by having me kneel in front of the camera. From the corner of my eye I see that the conversationalists are all watching this interesting diversion, big smiles all.
The next little problem is that my fingers are too large for the fingerprint scanner. My immigration officer tries to solve this by repeatedly wiping the glass of the scanner however this does not work. We eventually solve the problem by being satisfied with slightly imperfect scans of my fingerprints.
It is all very jolly and, once all is done, I am waved through a special pathway that bypasses all the queues of non-foreigners
In the baggage claim area, there is a money changer. I learn later that the rates there are the worst you will get anywhere. However, I need rupees so I change twenty dollars and get about half what I would get anywhere else. If you are doing this route, change a few dollars in Malaysia or Australia or anywhere else first. The exchange rates in Chennai itself are very good so you only need to have about $20 worth of rupees to get to your hotel.
Anyway I got politely ripped off at the airport money changer and then went over to wait for my baggage. However as I was waiting I felt the call of nature and, with some trepidation, went off to the public toilets. I had bad memories of public toilets from previous visits to India. The entrance to the toilet had a big sign saying “Passengers Only”. There was a reason for this and I was pleasantly surprised by the cleanliness therein.
Once relieved I returned to the baggage carousel to await the arrival of my one, very heavy bag.
And I waited. Bags slid past me and people grabbed them and dragged them away. One very small Indian, in an expensive suit, tried to grab his very large bag as it slid past him. He grabbed the bag’s handle but was unsuccessful in his attempts to pull it off the carousel. Whilst he could not move the bag, the bag could move him and, as he refused to let go of the bag, he was half dragged by it toward the end of the carousel as he shuffled along tugging at it until one of the baggage wallahs came over and helped him lift it off.
The baggage wallah stood proudly beside the rescued bag smiling waiting for a tip but the little man ignored him completely and simply grabbed his bag and rolled it towards the Customs queue.
And so I waited, watching folk collect their luggage and trundle over to the Customs queue and then out into the night. Eventually, I found myself alone at the baggage carrousel watching one lone bag, which was not mine, go around and around as a rising feeling of panic rose in my chest.
It looked as though my luggage had been lost en route. I was on the verge of freaking out when I realised I was actually waiting at the wrong baggage point and, looking across the room saw my bag all alone going around and around on the other baggage conveyor belt.
A smiling baggage wallah was standing beside the other conveyor belt. He smiled as he saw me walking over and pointed to my solitary bag and wobbled his head to indicate that there was nothing to worry about and that he had been guarding the bag for me.
I thanked him gratefully and handed him a tip, I can’t recall if it was 100 rupees or 500 rupees… things were getting a bit blurry in my head after nearly 24 hours of flying. I hope it was 500 rupees.
Walking out of the airport building into the thick, musty, almost rancid perfume of Indian air, I realised once again that some things never change
My aim was buying Hep C medicines in India – I paid 480 rupees for a taxi voucher at the government taxi booth in the airport’s exit lounge and walked into the crowd that milled around the separation barriers; thousands of dark, smiling facing waiting for the return of loved ones or important guests. A smiling man saw my voucher and pounced on me politely, leading me to his little Morris Major taxi without asking me where I was going. Once he had me and my bag safely inside his cab he inquired as to my destination.
When I told him I was going to the Taz Karma Inn at T. Nagar a puzzled look spread over his face. I said it again more slowly but of course he did not understand my Australian accented English just as I could not understand his Tamil accented English. Fortunately I had written the hotel’s name and address on a piece of paper and showed him that. Unfortunately he still did not know the hotel but did know where T. Nagar was and so we headed off into the night.
It was somewhere between two and three in the morning and still there were traffic jams, piles of rubble, half finished eight lane highways, people sleeping on the broken pavement. So familiar, so foreign. To find the Taz Karma my taxi driver did not use a map or a GPS, he just pulled over and asked people for directions. After a few queries he soon had me at the Taz Karma where the concierge was awaiting my arrival. After the genuine welcome and the formal signing in ceremonies I was in my room. I turned the air conditioning to 18 and collapsed into a very comfortable bed.
Of course I woke a few hours later as my body clock thought it was 10 in the morning but it was only six so, as breakfast was not served until 7.30, I went for a walk around my new neighbourhood.
Early morning is the one time that Indian streets are quiet and relatively empty. The garbage collection trucks rumbling along to pick up the piles (big piles) of rubbish heaped at the end of every street; where the occasional dog foraged. I noticed that India’s rise up the affluence ladder was obvious in the rubbish heaps. There was clothing and toys and food that one would never have seen in the rubbish heaps ten years earlier. It is interesting that prosperity seems to equate to waste.
I noticed as I walked between the muddy puddles of the pot holed streets that there were a few doctors and chemists on the block near my hotel but I must wait until about 10 before anything opens. I might get a shave from a barber before I go and see a Doctor to get a script. It would be very convenient if I found a doctor five minutes from the hotel.
What a day!
First I had breakfast. I was surprised to see that the buffet breakfast included only curries, apart from some white bread for toast and jam. Breakfast was curries and the various little flat breads and rice that go with curries. They were delicious curries and lovely breads and I knew I was in a hotel that catered for Indians not Westerners. That was cool for me as I really did not want to stay in a tourist place.
The waiter immediately asked me if I would prefer an omelet for breakfast but I, the proud adventurer and experienced traveler, proudly stated “No I am in India and happy to eat curry for breakfast.” He looked impressed (However after a few days of curry for breakfast I regretted my boastful ways because my pride would stop me from asking for an omelet).
After breakfast and copious amounts of delicious tea Marsala (Chai) I walked up the street to see if the doctor was open.
The sign on the door said open 10 a.m. in the morning until 1pm and then open again at 3pm until 5pm. It was ten but it was not open so I went for a walk around the block for ten minutes.
I notice that Chennai is very Indian, very Hindu. Almost everyone had a painted spot on their foreheads, a bindii. The women all wear their beautiful and colourful saris; the men wear trousers and a collared shirt. I notice that, unlike Delhi, women are everywhere adding colour to the bustle of the streets. I walk around the block, sweat starting to build on my forehead as the heat of the day increases. Back at the doctor’s place he is still not open so I knock on the door for a while until someone opens it.
A youngish gentleman peeks through the door and listens to my request for an appointment then goes away. I hear some rapid talking in another room and the young gentleman returns to inform me that the doctor was not in. I asked him what time the doctor would be in? He went back to the other room, more talking and he returns to inform me that the doctor would not be in for several days as he was at a meeting. I got the distinct impression that the doctor was actually in the other room and was not inclined to see me.
So I went back to my hotel room to check my emails and found an unexpected email from G. who runs a Hep C support group in Thailand. He told me he had been reading my blog and that I should get in contact with a guy he knew in Chennai who was currently being treated for Hep C with one of the generic Sofosbuvir brands. This was exciting and unexpected news.
So I phoned S who told me to come around and see him quickly because his treating doctor was about to go on holidays for two weeks and I would need to see him this afternoon if I wanted to get a script. Once I had the prescription S said it would only take an hour for him to organise the Sofosbuvir.
So I got his address and went downstairs, two khaki clad policemen were resting on the lounge of the hotel’s air conditioned foyer. It was about 11.30 and the day outside was warming up; the predicted temperature was “an unseasonably cool 38 degrees” said the weather forcaster on the television.
I showed the address of S to the concierge and asked him how much that would cost in an auto-rickshaw; he wobbled his head and thought and suggested about 250 rupees but then told me that the auto would have a meter that would make it exact. Then one of the policeman stood up and sidled over to the desk and asked to see the note. He studied it, thought for a moment and then said, “This should be a maximum of 250 but if you take the bus it will only be 50 rupees, a big saving sir.” I smiled and thanked the officer very much for his advice but explained that I was in a bit of a hurry and would probably (certainly) get lost on the bus. The officer smiled and politely explained that Chennai’s bus system was very simple to use before he retreated back to the lounge.
Outside I found an auto-rickshaw and gave the driver the address and asked him if he knew the street. Of course he did and so, full of confidence, off we drove. I noticed that the meter was not turned on; rather it was making an unhappy beeping sound. I pointed this out to the driver who wobbled his head and with a very serious, slightly sad expression explained, “Oh sir the meter is broken.”
Of course, it was (not).
So we drove through the heat, the traffic and the dust occasionally stopping to ask directions from pedestrians or other auto-drivers. Auto drivers and taxi drivers always know, and do not know, where your destination is, if they do not know it they will not admit it but they will ask everyone until they find out where they are going, no matter how long it takes. Ah India!
Sitting in the back of the auto, watching in astonishment as we weave our way through the endless, bumper to bumper traffic without a crash or bump; through the dust and heat and crowds, listening to the beeping of the meter that does not work (just for me). I start worrying about the upcoming meeting with S. I worry along these lines.
“Right this is almost certainly a scam, the classic setup. Put time pressure on so I have to rush my decisions and then sell me a few bottles of fake tablets.”
So I start planning my strategy. I won’t be rushed. I will be respectful and explain that I have been ripped off in India a few times in the past (true) and I will want a couple of days to do ‘due diligence’ before I part with any cash.
Finally, we find Harrington Street, it took longer than one would have thought to find the street and longer to find the actual house… but we do.
It is a two-story house with a paved front yard and high steel gate with a large “Beware of Dog” sign riveted to the gate. I start to open the gate and my driver grabs my arm and points to the sign. “No sir, there is the dog inside.” I shrug, I’ve come too far to worry about dogs and dogs usually don’t bite me so I enter as my driver retreats to the safety of his auto. I have arrived at the home of S mentally prepared to haggle and weave my way through an elaborate dance of politeness and lies that is common enough in Indian business. Now I ready myself to befriend an unfriendly guard dog.
But, of course there is no dog.
A voice calls me from the upstairs veranda, a hand waves, “Around the back stairs please.”
S has the upstairs section of the house although I cannot clearly see him because he is seated.
I climb the stairs and S is waiting for me in the doorway. I remove my shoes at the door and enter.
I am affectionately welcomed; we are fellow sufferers under the yoke of a common foe, hepatitis C, almost brothers in arms.
As we shake hands and as S guides me through his house to the veranda I see that he is exhausted, wasted. He explains that he has had a relapse a few months back after been given a clean bill of health after an Interferon treatment several years earlier. His viral count was now way up and, because of the genotype and some other factors I did not quite understand S was having to use the Sofosbuvir in conjunction with Interferon and something else.
S is probably in his late forties or early fifties. Like me he contracted Hep C from shooting up when he was in his early 20’s. He had a successful career and, when he found out he had Hepatitis C, he had told his boss the truth. His boss was understanding and has stood by him. S said he probably missed out on a couple of promotions because of the Hep C but he was happy that he kept his job.
He explained that the doctor he was seeing was a gastroenterologist with one of the large hospitals in Chennai, the Appolo and that he was going on holidays for two weeks and today was his last day. S wrote me a letter of introduction and told me just to front up at the hospital and bluff my way into the queue of people waiting to see the doctor. He told me once I had the prescription then there would be no problem getting the Sofosbuvir either as one of the generic brands or in the form of GILEAD’s actual Sovaldi.
I felt very comfortable with S and forgot about all my worrying about rip offs and scams.
S’s wife typed out a letter of introduction for the doctor and S signed it and attached his business card.
S’s wife was very charming and, like S, she spoke English perfectly, havig lived ten years in Canada. We had a (non-alcoholic) drink together and then I went down and got my driver to drive me back to the hotel where I picked up all my medical reports and then onto the hospital. Of course my driver’s meter was still ‘not working’ and beeped all the way to the hotel and back to the hospital. Of course my driver knew where the hospital was and after a lot of asking and driving around he did eventually find it.
Here the driver and I came to a crisis point in our blossoming relationship, I wanted him to wait for me so I did not have to go through all the trouble of finding a driver to take me back to the hotel. For some reason my driver did not wish to wait for me, which I found rather annoying but that was that. I changed my mind about how much I would pay him and handed him a one thousand rupee note. It looked at the note without taking from my hand.
“Oh no sir, that is not enough! I have driven you many places, it should be two thousand.”
Of course because his meter was ‘broken’ this was a very subjective judgement on price and it might have worked had I not checked with the hotel staff first. They had told me about 250 rupee for the one way trip. We had done three trips of about the same length so 750 was about the right price. Had he waited for me in the shade of a spreading tree I would happily have paid him the two thousand once he had returned me to my hotel but now I was in no mood to haggle. I gave him the 1000 rupee note and walked off with him walking beside me haggling and demanding more money. Of course he could not leave his auto so he soon gave up the chase and returned to where ever it was he wanted to be.
Navigation in the hospital was an interesting process, not a scary as trying to find the correct train at an Indian railway station but still an interesting and challenging affair.
The Apollo Hospital was a grand modern and vast structure situated in the centre of an affluent suburb of treed avenues and large homes.
The road entering the hospital’s precinct ran under a massive whitewashed stone arch with cars and people moving effortlessly together sharing the road and ‘footpath’ with equality. Entering the foyer of the first building I came to I asked a security guard for directions to the Gastroenterology Department. The guard smiled, wobbled his head and point over the heads of a thousand people and said,
“Use the elevators please sir.”
I smiled in return, thanked him and headed off in the direction that his finger pointed.
The main foyer of the Apollo contained perhaps 2,000 or more people, women and men and children and grandmothers and grandfathers. No animals allowed.
The women all dressed in the spectacular saris and the men all dressed in trousers and collared shirts apart from a few grandfathers who still clung to wearing the infinitely more comfortable traditional dhoti.
Weaving through the crowd I eventually reached the elevators, there were two elevators, with two uniformed guards guarding the doors and keeping the two or three hundred people waiting in the elevator queue from overcrowding the elevators.
I saw a sign stating that the Gastroenterology Department was on the second floor and noticed a wide, empty stairway going up beside the elevators. Of course in India, where power failure is a regular and expected event there must be large stairways in such buildings.
I was on the ground floor the Gastro department on the second floor. There were about 200 people waiting to get into the elevator. The unused stairway beckoned and two minutes later I was on the second floor where, in every direction, corridors ran away out of sight.
I will not describe the process of getting to the Doctor’s waiting room other than to say that asking Indians for directions through a labyrinth of hospital corridors always gets the same response, a smile and friendly wobble of the head, a finger pointing and:
“Oh yes straight down there sir.”
Which actually means “Turn left at the first, right at the second, straight ahead until you come to the end and then take a left.” Indian folk will not usually give you complicated directions because they understand that you will not be able to remember them so, rather than cause you the distress of forgetting the directions they just say: “Straight down there.”
That said the hospital staff, when I eventually found myself standing in front of the correct counter, were very professional, efficient and generally very helpful.
Unfortunately when I presented the letter that S had given me and explained the situation to the Gastro’s receptionist she smiled and asked,
“But are you registered at the Hospital sir?”
“Well then you need to register on the ground floor at the reception area for foreigners.”
So I walked back through the labyrinth down the stair and back into the main foyer. There I saw an office with Foreigner Registrations written above the door, several Africans and an Arab stood in a short queue at the door. I joined them and waited. About ten minutes later I sat at a desk before a friendly young man who was particularly interested in sharing jokes with the young woman working behind the other desk.
He glanced at me then stretched out one hand and asked ,
“Your registration papers please.”
“I thought that this was where I registered?”
“No this is where you register as a foreigner, first you must register as a patient of the hospital and then you must register as a foreign patient. Please go to the registration desk first register there and then return here.”
He smiled and pointed out the door and then returned to chatting and joking.
So I joined the queue at the new patient registration desk after a few minutes I reached the front of the queue and stepped across to the counter. As I stepped to the counter the person behind the counter, carefully avoiding eye contact with me stood up, turned around and walked away without a backward glance. I looked at the other people working behind the counter but none of them glanced at me. I turned around and noticed the queue in which I had been standing had disappeared as people quickly melted into other queues.
With a sign a joined another queue, eventually stood before one of the registrars.
“So you have an appointment with Dr Muragan?” he asked when I explained what I was doing there.
“He is expecting me,” I answered.
“So you have an appointment?”
“Yes,” I lied.
“But how can you have an appointment if you are not registered?”
“Oh a friend of mine is a good friend of Dr Muragan so he arranged it for me.”
That seemed fair and it worked. A head wobble, a shrug of the shoulders and I got my form, paid my 200 rupee registration and took the receipt and my patient number to the foreign patients registration office and rejoined that queue, eventually paid my 800 rupee registration fee and was handed a folder with my details in it and walked back up the stairs and through the corridors to the Gastroenterology department where I handed in my form and paid another 200 rupees to register with that department and another 200 rupees for Dr Muragan’s fee and then watched at my folder was slid under a huge pile of other folders.
“Please find a seat and be waiting please sir,” the receptionist smiled indicating the waiting room.
The waiting room had many chairs and plenty of standing room so there I waited with about 40 other folk who found the fact that I was both white and very tall and did not speak their language an excellent diversion from the monotony of waiting for their appointment with the doctor.
All very good natured of course. I got several handshakes, offers of food and numerous “Where are you from sir?” On the discovery that I was from Australia cricket and all things and people associated with cricket became the topic of conversation; short friendships are made by the discovery of common interests.
I became the waiting room’s “white height” guy. As I say all very good natured in a happy head wobbling way.
Several more hours passed and I had engaged in so many conversations about cricket and how to be getting “ a visa for my son to Australia” that I was on the verge of learning to speak Tamil when one of the nurses handed me my folder and told me I was the next one in to see the doctor.
The doctor was a fellow about my age, maybe a bit younger. His specific interest was livers and when I explained my situation he told me that he could not just write a prescription for Sofosbuvir because the hospital had certain procedures that had to be followed first. Certain tests needed to be done and they could not be done this afternoon and, as he would not be back from holidays until after I was gone back to Australia, then it was all very unfortunate and he was most sincerely sorry.
Oh dear, my worst nightmare, I had not given myself enough time.
But he was a compassionate man. I explained to him my situation in detail. I then showed him all the recent tests and the historical ones that I had brought with me for exactly this purpose. Fortunately I had a great wad of paper containing all the results of all the tests that I had done over the preceding months. I had sorted through and organised these during the long hours in the waiting room.
As it turned out I had everything he needed in the test results department except one, the Fibro Scan. Now I had actually had a Fibroscan at the Royal Hobart and it had showed no issues with my liver however for some reason I did not have a copy of the results.
Again the Doctor was very kind and told me that he would write the script for the Sofosbuvir and Ribavirin provided I promised to have a fibroscan the next day. I made the promise and he wrote the script. He also said that I was lucky having genotype 2 because it was the easiest one to treat and it would be killed off with only a 12 week course of Sofosbuvir (one tablet per day) in combination with a course of Ribavirin (3 tablets twice a day).
That said I recall that my mate K had genotype 1 and during the trials he was involved in back in Sydney his virus was cleaned up in 12 weeks also. Of course I did not know exactly which drug, or drugs, he had used.
Anyway we had an interesting discussion about how the Hep C > Sofosbuvir thing was being handled in Australia and other first world countries. He was interested to hear how the government was only using Sofosbuvir to treat the very sick. He said that in India they had started that way in the earlier days with the Interferon based treatments but soon realised it was false economy and that it was much more cost effective to treat people before they sustained serious liver damage. This also seems very obvious to everyone I speak to on the subject!
We then discussed a little of our personal histories. He explained to me that he had done his medical degree in Edinburgh in Scotland and his MA in London where he had worked as a Gastroenterologist for about 12 years before deciding to return to his home in Chennai. He was going to the Greek Islands with his family for a two week holiday. It was a good time to leave Chennai with the temperatures regularly in the mid 40’s.
He then gave me the business card of the Mylan ‘distributor’ and suggested I phone him to arrange the delivery of the Sofosbuvir.
So tomorrow I will go off for a fibroscan, that will cost me about 8,000 rupees ($150) and I do not know what the tablets will cost yet. I will phone or email the supplier tomorrow and find out. I am expecting the three month treatment to cost me about $1,000 or so, which means that with the cost of the hotel, the airfares, food and other expenses the whole thing will have cost me a bit over $3,000.
To me that’s a small price to pay for avoiding cirrhosis or liver cancer. Not to mention getting rid of an evil virus that basically screws up your whole life from your brain to your toes.
Well it’s looking pretty good. I will post exact figures on costs tomorrow. Next week I will also investigate other options such as not going through a hospital and just getting a prescription from a normal GP. My plan is to examine all the options for acquiring generic Sofosbuvir and publish them on the internet.
It’s five in the morning. I woke up about an hour ago with my body clock still on Australian time and thoughts and doubts swirling through my head.
What if it is still some kind of scam?
Why am I buying the Sofosbuvir from some guy who is the ‘distributor’ and not just picking it up from the pharmacy?
I wonder if the Doctor is really going on holidays?
How did I get to see the specialist just by hanging around in the waiting room?
All that kind of stuff that spins through your mind when you are laying in bed in the dark wishing you were asleep. But I remind myself that this is India and things run differently here.
And as you see I could not get back to sleep so I switched the light on and checked my emails.
A few folks have been reading these posts and emailing me. Strangely the first email I read said:
I had read your today’s notes. What a trip! 🙂
But I’m still unclear about one thing: are you planning on buying original Sovaldi (sofosbuvir 400mg) or generic sofosbuvir 400mg, like MyHep or Hepcinat or others? Is it possible to buy that cheap original Sovaldi? And why do you have to go through a distributor? Why can’t you just go to the pharmacy, with your prescription?
Thank you kindly for your reply.
Good luck tomorrow!
That was weird because it was just what I had been laying in the dark thinking about. I have not replied to B. because I’m still thinking about it. I will contact the distributor guy today and see what the story is: and what the price is.
Another email read:
What do you think of this email I received?
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Yes, You can buy Hepcinat 400mg from us.
you can buy online by Register in our website. Here you can place the order directly.
You can also place the order manually here. We will provide you our Company Bank Remittance details, As soon as we receive the payment confirmation will send your package same day by REGISTERED EMS speed Post.
Best Price : 418.70 USD / BOTTLE (including shipping)
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Please write us.
I replied to this email because it is almost certainly a scam:
Thanks for the email. I would be cautious because all my advice is that it illegal to export any of the generic Sofosbuvir brands from India without a prescription from a medical doctor. Further, it is illegal to import them in many countries without a prescription. Thirdly there are certainly a lot of scams selling fake Sofosbuvir. That all said I know nothing about this company but I would be very cautious
Anyway, these are the issues, the things that are going through my head this morning. In a way it is a summary of doing business in India, there are many very good and honest people, most are, however the dishonest ones are usually very proactive and give the good folk a bad name. I am going to try to get back to sleep now. I will post the results of how things work out today when I get back this evening.
Exhausted… that’s the only word I can think of at the moment. I need a shower and a little laydown but I will push on and write something before I collapse.
Today I did my first tourist thing and went and visited Fort Saint George where the British Honourable East India Company had their main base in Madras for the couple of hundred years that they ruled here. It was at Fort Saint George and in the surrounding settlements that the family of Hugh Macintosh, the main man in my book about that period, lived.
Anyway, after the Fort I went to the hospital for my Fibroscan, that’s after my driver, Raj, informed me that police are the most corrupt, then government officials and then doctors. Just what I did not need to hear.
So I waited around for a couple of hours and renewed my acquaintance with two families from Bangladesh who I had been waiting around with at the hospital the previous day. We were bonded by having consulted the same doctor and were now bonded by waiting to have the same scans. Well, I was better off because I was only having a Fibroscan whereas both of the other gentlemen were getting colonoscopies as well.
Well I had my Fibroscan today. It’s “a lay on the bed, roll up your shirt, hands behind your head ” and then the doctor presses this probe thing firmly against the space between my ribs on the side over my liver. A little hammer in the probe thumps the flesh and a sensor reads the vibration that is set up in the liver. Liver elasticity test is
another word for it. I did have one at the Hep Clinic in Hobart but this Chennai test was much more detailed, about 15 minutes of little rib thumps.
Of course the fact that I was too long for the bed caused the doctor and nurse some amusement as they chatted with me about my family and why I did not get the scan done in Australia. It was too complicated to explain so I just said it was part of another treatment I was getting in Chennai.
Once the thumping was done the doctor told me to come back in a couple of hours to pick up the results and take them back to the specialist centre.
Here I have to confess something.
When I picked up the results I did not take them back to the specialist centre but took them to photocopy and then back to my hotel room for a bit of a session with Doctor Google. Heck! My specialist was not there so it did not matter if I took the results back on Monday.
Now for a little shock.
As I mentioned earlier I had been given Ultrasound and CT scans of my liver and they both showed no signs of cirrhosis or tumors. That was a relief.
Now I discovered, thanks to Dr Google, that the Fibroscan results showed my liver at the bad end of the Fibroscan waveband, that’s F4 in Fibro language. It means I have fibrosis that had become cirrhosis. I had Hepatitis C induced liver cirrhosis. Not good news at all. Liver cirrhosis leads to liver cancer and liver failure.
Which in turn explains why I have not been feeling too well of late.
Which in turn makes me glad that I bit the bullet and came to India because if I sat around back in Australia waiting to get sick enough to get treated, well according to Fibroscan by next year I would be very sick. Advanced Fibrosis can turn quickly to cirrhosis, then maybe even into liver cancer. However if I start my treatment next week I should be able to kill off the Hep C virus before the liver damage gets worse and give my liver a chance to repair itself (which I hear livers can do very well if given the chance.)
This brings me back to the point of who thought up the great idea of waiting until we Hep C sufferers get REALLY sick before giving us access to treatment????
How dumb is that? What happened to early detection and intervention? Are we being treated differently because some of us (certainly not all) got Hep C from using drugs decades ago?
(At this point I am strongly resisting the urge to write swear words in capital letters and underlined directed at self righteous politicians and health bureaucrats )
Anyway, that’s part of my news for the day, the rest is as follows.
Today I sent an email to the ‘distributor’ whose card the doctor gave me. The email bounced back.
This was worrying. I checked that I had spelled the email address correctly and I had. It seemed strange to me that a pharmaceutical distributor’s email address on his card would be wrong. It’s worrying but I will phone him on the phone number on the card tomorrow and see what happens. Perhaps there is a simple explanation? Everything is done differently in India and people seem to use their mobile phones rather than email.
But, as B asked, why was I buying the Sofosbuvir off a distributor and not from the pharmacy?
Because I have put this little diary out on the Internet I have been getting a few emails, mainly from people who found out about my journey from Hep C forums. Some of these folk have asked me questions and some have offered me detailed advice about prices of the various generic brands of Sofosbuvir and other stuff.
One very kind Indian gentleman also emailed me with an excellent explanation of how the distribution system of some types of drugs in India works. Now there are pharmacies in India, I have seen them, but there also distributors from whom one can buy direct; if one has a prescription. This Indian gentleman suggested that to get the best price for my Sofosbuvir I should Google the Chennai distributors of Cipla , Natco , Mylan , Zydus and Cadila and then call them and tell them my situation and then ask for prices. Good advice, which I will follow up on Monday.
Another email received regarding prices:
….. Chennai is bit more expensive than other Indian cities.
You will see- the printed price on the bottle will be 19900 INR (apprx 330 USD) a bottle. the lowest you can go is 12000 INR (apprx 193 USD) a bottle. If you cannot get that low the highest you would pay is 16000 INR a bottle (apprx 250 USD) a bottle. This is because the MRP printed is inclusive of all profits for stockiest, distributor and retailer. You will be buying from the company guys so that’s why you will pay cheaper. Have a good evening.
That was really helpful and the first time I have been given a clear explanation of why there is such a wide range of prices mentioned in the various forums etc I have read.
Of course I have to test all this out on Monday. I really do hope it’s all correct and that I will have a three months supply of some form of Sofosbuvir in my hot little hands by Monday evening.
This is the first chapter of a 187 page Hepatitis C Survivor’s story. The complete story is available on Kindle, please click here to see the entire story
(Guarantee is provided if you take the recommended treatment for your Hepatitis C based on accepted international standards)