Back from the dead!

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Offline Poirot

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Back from the dead!
« on: March 02, 2015, 08:19:52 AM »
Hi all:

A quick update from my side:

I was diagnosed with primary liver cancer in Sept 2014r, after I visited a hepatologist to get an update on my liver condition and status of sovaldi mfg in India. Old members here would know that I have had chronic Hepatitis C since a long time. My guess is that I was infected before 1992. Anyway, after some tests, a liver MRI led to the diagnosis of HCC, with three tumours, one of which was quite large.

Meetings with various liver specialists resulted in an uniform conclusion: I needed a liver transplant. Without it, my median life expectancy was 9 months, and zero at two years.

Long story short - after running around like mad - I was extremely fortunate to receive a liver transplant from a deceased donor at Apollo hospitals, Hyderabad (I had registered with the program at Apollo, Chennai). This was in November 2014, and three months later, I can now say that I am on the path to recovery. Still a long arduous path though - doctors do not consider any liver transplant successful until 12 months post transplant. And, the immunosuppressant drugs that you have to take leave you open to infection - so you have to take a lot of care.

Interestingly enough I found that India now conducts the highest number of liver transplants in the world per year - around 1,000 or so per year, across various hospitals in Delhi, Hyderabad, Chennai, Bangalore and now Mumbai. Of this, about 850-900 are living donor transplants, while the balance are from deceased donors. I had a major difficulty with getting a living donor (only relatives allowed to donate, and you need a blood group match) and so consider myself very fortunate.

I have to really thank my elder daughter for this outcome - she insisted and insisted that I do whatever it takes to get a transplant. I was quite ambivalent about getting one given all the associated issues (it is one of three most major surgeries that you can have), including costs. My girls were nearly settled, and there was sufficient money left for the rest of their education costs - and my family had a house that was fully paid for! And, I had at least 9 months to put all my affairs in order.

And, then I have to thank my wife and my younger girl for their huge support and care during this process - when I was essentially bed ridden and needed terrific care about food, water, cleanliness and medicines. The stress and strain put on the family is huge post surgery - couldn't have done this without any of them, especially given that my younger girl is now giving her 12th grade Board exams.

And, thanks to Andy and Shilpa for all their kind wishes.

===========================

Lessons for those with Hepatitis C:

1. Please, please ensure that you get an ultrasonography of your abdomen every six months - this is a cheap, quick, painless procedure, which will tell you quite clearly if there are changes to your liver texture. One of the surgeons I met, who had relocated after practicing at Pittsburgh, PA, USA (one of the leading liver transplant centres in USA) said that he was shocked I was not on this preventive measure, given my chronic Hep C infection. If changes are detected early enough, there may be other options to deal with liver disease for you - once it becomes cancer, then you have really limited options.

2. If you can get Sovalidi and have the insurance for it, do NOT wait - get it now. This will save you a lot of grief later. New data is showing that Chronic Hep C leads to liver cancer in 25% of cases (not 5-6% as they were estimating earlier) and cirrhosis in 40-50% of cases. In US, new data is showing Hep C as the leading cause of primary liver cancer. In India, Gilead is expected to tie up soon with a couple of manufacturers to produce Sovaldi locally - this is likely to be available at equivalent of US$800 for the treatment course (1% of the US costs) - once it becomes available, make sure you get it IMMEDIATELY.

Poirot

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Offline jay

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Re: Back from the dead!
« Reply #1 on: March 02, 2015, 09:48:16 AM »
wow standing ovation to you Poirot !!
I don't know How Andy and other senior members and patient stick to this forum with so much pain when every second day if not every day new mother posts her first cry for help. I think stories like these are like knots on a rope to climb up.
I am so relived to know about Sofosbuvir (Sovaldi) that in India in January 2015 The Indian Patent Office in Mumbai declined patent protection thus opening the way for producers of generics to produce the drug for the Indian market. I mean how many in the entire world Or in entire thal community can afford $90,000 for three months of medication.

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Offline Andy Battaglia

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Re: Back from the dead!
« Reply #2 on: March 03, 2015, 03:51:56 PM »
Poirot,

It is so good to see you posting again. You were the third person with thal that I ever met and our trip from Mumbai to Pune with Ashish is permanently etched inside my memory. In many ways, that Pune conference still reigns as my favorite conference, and the camaraderie is a big part of why that time has such a special place in my heart. It has been difficult following you through this new "adventure", having told only our one mutual friend, but always keeping hope that this time things would go differently than it had with our dear friend Panos. When you told me they found a liver, I just about went through the ceiling with joy. I know that can be the hardest part of this process and it happened so quickly that it renewed hope within me. Maybe this time, my friend would make it. I know it's been an ordeal and there will be future challenges. but I am overjoyed to see you here posting. And as happy I am for you, I find myself, as a parent, to be happiest for your daughters.

To our members, this is a time to celebrate life. A life that has had great influence on me and many others. I thought this most unfair that a man like Poirot, who has long ago put thalassemia in its place and gone on to have a great career and build a beautiful family, could be afflicted with cancer, after being such a model patient who has been an example to so many, but now again I see that Poirot has once again been a model of how to deal with the worst of the worst and overcome it.

Poirot, I salute your strength and will. It's been a long time since I dared have hope. Thank you for once again opening that door for me and thank you for remaining among us.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Back from the dead!
« Reply #3 on: March 04, 2015, 12:54:09 PM »
Dear Poirot :hugfriend
Well Done :thumbsup Bravo

I am shocked as well as happy after reading your post.
You are so lucky that you have such a caring and determined daughter. You have shown a path to other thals to fight with Thalassaemia.

Wish u speedy recovery !!

Dharmesh
Start listening your body, it always gives signs

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Offline zahra

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Re: Back from the dead!
« Reply #4 on: March 04, 2015, 01:32:31 PM »
Congratulations to you and your family. We are proud of you. Thank you for being such an inspiration.
Zahra

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Offline Poirot

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Re: Back from the dead!
« Reply #5 on: March 10, 2015, 05:48:49 AM »
Thanks much, Jay, Dharmesh and Zahra, for your kind words! Really appreciated and thank you for the support.

Jay - the Sovaldi case is now in front of the Delhi HC - Gilead has challenged the Patent office decision, saying it was biased and they did not apply their minds. This is actually a bit of a setback because Gilead was all set to licence the drug to 3-4 generic manufacturers in India, with a "india pricing" level - much like what they have done in Egypt. It was all set to be done in Feb, but the Patent office decision and the subsequent challenge means we now don't know when we can expect a decision, either way.

Poirot

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Offline Poirot

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Re: Back from the dead!
« Reply #6 on: March 10, 2015, 06:07:29 AM »
Hi Andy,

Thanks much for your kind words and support during the ordeal. You would know that Lisa's case, and more recently Panos', were uppermost in my mind as I evaluated all the pros and cons of getting the transplant. Having gone through the procedure, I can now say that it was worth all the pain I suffered and probably my family feels the same way about the stress and strain that they went through! But, I do know what you mean as a parent - from my perspective, I am more happy for my daughters, than for myself, really - getting this chance to see them for many more years - absolutely priceless.

I remember the Pune trip vividly - I was very glad to have made the trip, as I met our mutual friend in Pune after years, and the time that I spent with Ashish on that trip was the longest time we had spent together over a single period. I was really glad of that, especially in hindsight. Getting to know you during that trip was an absolute pleasure and it has fostered a life long bond for me.

The amount of time, effort and money that you have spent on the cause of Thalassemia is just beyond any kind of praise or words that we can bestow on you, Andy. Very few people make a real and valued difference to the lives of hundreds and thousands of others - you are one of those few. We have all benefited from your research and the collective wisdom embodied by this group. In Lisa's absence, I am quite sure that this group would have just meandered away, without the consistent efforts put in by you. You have made a huge difference to Thal.

Warmest regards and lots of love,

Poirot

Poirot,

It is so good to see you posting again. You were the third person with thal that I ever met and our trip from Mumbai to Pune with Ashish is permanently etched inside my memory. In many ways, that Pune conference still reigns as my favorite conference, and the camaraderie is a big part of why that time has such a special place in my heart. It has been difficult following you through this new "adventure", having told only our one mutual friend, but always keeping hope that this time things would go differently than it had with our dear friend Panos. When you told me they found a liver, I just about went through the ceiling with joy. I know that can be the hardest part of this process and it happened so quickly that it renewed hope within me. Maybe this time, my friend would make it. I know it's been an ordeal and there will be future challenges. but I am overjoyed to see you here posting. And as happy I am for you, I find myself, as a parent, to be happiest for your daughters.

To our members, this is a time to celebrate life. A life that has had great influence on me and many others. I thought this most unfair that a man like Poirot, who has long ago put thalassemia in its place and gone on to have a great career and build a beautiful family, could be afflicted with cancer, after being such a model patient who has been an example to so many, but now again I see that Poirot has once again been a model of how to deal with the worst of the worst and overcome it.

Poirot, I salute your strength and will. It's been a long time since I dared have hope. Thank you for once again opening that door for me and thank you for remaining among us.

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Offline jay

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Re: Back from the dead!
« Reply #7 on: March 11, 2015, 12:24:48 AM »
Hi Poirot,
What does it make Gilead to hold back from going ahead and manufature it in colaboration with country pharma?
:)  :huh

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Offline Poirot

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Re: Back from the dead!
« Reply #8 on: March 11, 2015, 02:13:00 PM »
Jay -

I don't know all the details, but it seems this activist group was either not aware of Gilead's plans for contract mfg in india or they were funded by some rival pharma group - and they submitted all kinds of petitions to the patent office saying that this salt (sofosbuvir) is neither new nor unique and hence the patent for Gilead should be rejected in India.

Gilead obviously does not to share its manufacturing process and research data with any indian company unless it is protected by some kind of licence and copyright agreement.

Thx


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Offline Bostonian_04

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Re: Back from the dead!
« Reply #9 on: March 24, 2015, 08:22:49 PM »
After reading your posts, I sincerely salute you and your family for courage, strength and determination. Wishing you speedy recovery and many many years of health, wealth and happiness!!!!

Thank you for sharing your story....
Quis custodiet ipsos custodes ? - Plato

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Offline Poirot

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Re: Back from the dead!
« Reply #10 on: March 31, 2015, 06:56:54 AM »
Thanks, Bostonian!

Jay - I just posted on a separate thread - Gilead has signed up three companies in India - Cipla, Natco, Zydus - to manufacture and sell Sofusbuvir in India. It is already available in some hospitals in Mumbai and Chennai (from direct knowledge) and is expected to be in chemists soon! So, that is some good news.

Further, Natco has been licenced to sell the drug in 21 other countries - pricing is still not clear, but should follow the Egypt and India model, ie significantly lower than the price in USA.



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Offline Waleed

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Re: Back from the dead!
« Reply #11 on: April 30, 2015, 06:30:27 PM »
Dear Poirot,

I am really pleased to know how you fought and won the battle with liver cancer. You are a leading example to be followed by thals and I am finding no words to praise your courage and determination.

I am not equipped with much on this topic so I would like to ask you to provide us a checklist, that is in your opinion a must to follow, for all thals that have Hep C whether inactive or chronic. I have Hep C but PCR never showed positive ever and my LFTs are usually normal as well. Reading your story makes me feel that I need to get some tests done.
Waleed

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Offline Poirot

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Re: Back from the dead!
« Reply #12 on: May 04, 2015, 02:48:38 PM »
Dear Waleed,

Yes, if you have Hep-C, then some additional care needs to be taken.

But, first, you say that you have Hep-C but PCR did not show it - I am not sure what exactly do you mean? Do you have Hep-C antibodies but PCR-RNA Qualitative test for Hep C came back negative? In that case, you are very lucky - you got infected, but your immune system fought off the Hep-C infection!!!

It would be useful from your perspective to repeat the PCR RNA Qualitative test at a reputed lab to be 100% sure.

If this test comes back negative, then you don't need to do much - just keep watching the LFT every six months.

By any chance, if the PCR RNA test comes back positive, then you need to do an USG of your abdomen every six months, and monitor for any changes to your liver.

And, you need to get the new treatment for Hep C ASAP. There is absolutely NO point in delaying treatment, now that we know that Sovaldi works so well for Hep C.


Cheers

Poirot

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Offline Andy Battaglia

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Re: Back from the dead!
« Reply #13 on: May 06, 2015, 03:09:48 AM »
Gilead is using Mylan as its Indian distributor. In the US market, Gilead has also introduced Harvoni (combination of ledipasvir and sofosbuvir). These drugs boast a higher than 90% cure rate.

http://hepatitiscnewdrugs.blogspot.com/2015/05/mylan-launches-hepatitis-c-sovaldi.html
Quote
Mylan launches hepatitis-C Sovaldi tablets in India
HYDERABAD: Pharma giant Mylan NV today said its subsidiary Mylan Pharmaceuticals has launched Gilead Sciences' Sovaldi (sofosbuvir 400mg tablets) in the country.

Sovaldi is used for the treatment of chronic hepatitis-C infection as a component of a combination anti-viral treatment.

It is estimated that around 12 million people are chronically infected with hepatitis-C in India, Mylan said in a release.

In February this year, Gilead appointed Mylan as its exclusive distributor of Sovaldi in India.

Mylan president Rajiv Malik said they have a history of partnering with Gilead to tackle key public health issues in India and around the world, beginning with expanding access to high quality and affordable HIV/AIDS anti-retrovirals.

"We are proud to continue our work together with the launch of Sovaldi as it supports our joint committment to meeting the unmet medical needs of patients in India," Malik said.

Gregg Alton, Executive Vice-President, Corporate and Medical Affairs, Gilead Sciences said it makes an important milestone in the company's ongoing effort to make its hepatitis-C medicines accessible to as many patients, in as many places, as quickly as possible.

Sovaldi is sold by Mylan's dedicated sales force as part of its Hepato Care segment.
Andy

All we are saying is give thals a chance.

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Offline Poirot

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Re: Back from the dead!
« Reply #14 on: May 06, 2015, 07:07:21 AM »
Gilead has already licenced multiple Indian pharma companies to make Sofusbuvir in India - including Cipla, Natco Pharma, Dr Reddy's, etc

And, this drug is now available through local distributors and hospitals in all major cities.

 

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