I would be interested to know how many have signed the petition at Change.org targeting Gilead Sciences (GS-7977) to partner with Bristol-Myers (BMS-790052 daclatasvir) and to put "patients before profits". Excerpts pasted below from various searches on the internet:
"Gilead, Bristol Hep C Drug Data at EASL: 100% Cure Rate with Bristol's phase II study of daclatasvir plus Gilead's GS-7977 in patients with genotypes 1, 2, and 3: SVR4 (early cure) rate in the genotype 1 patients: 100%. In genotype 2/3 patients, the SVR4 rate was 91%."
"But the combination might not find its way to the market because one pill is owned by Gilead Sciences and the other by Bristol-Myers Squibb. The companies have not agreed to collaborate, to the chagrin of some doctors."
"Dr. Douglas J. Manion, a senior vice president for Bristol-Myers, said his company was “keen” on working with Gilead but that “thus far, they have been unwilling to engage in that collaboration.”
If you have not signed it, I am curious to know your reasons. I have been following this forum since I was diagnosed last September, and I have spent hundreds, probably thousands of hours searching for treatment without the side effects of interferon and/or ribavirin.. And now there appears to be a 100% early CURE rate for GT1s without interferon OR ribavirin, and a 91% early CURE rate for GT3s (my genotype)...with minimal side effects (nausea, headache, fatigue).
It might be an easier cure for the patient, but millions have been cured of HCV already. If you're a g4 it's not 100%. Also I'd like to see more people on it and their condition 1 year EOT. Perhaps all the studies collectively are a large number, dunno. It looks great through, and I am very happy for those who are on it, or going to be on it in the future.
NO- I have time to wait for trials that can beat the 100% cure rate they had with GS-7977 & daclatasvir WITHOUT interferon OR ribavirin (DUH)
But I didn't want to sound insulting to anyone. But people...listen up...it doesn't get any better than 100%. You need to educate yourself about the disease YOU have and the side effects of ribavirin! At any rate, as rivil inferred, SIGN the petition for those of US who know a good thing when we see it! This is the biggest success in the history of HCV treatment!!!! You will only be helping yourself in the long run! So please go to the link and sign the petition!!!
My apology to you Willbb, and I am truly sorry that you were insulted. I was just trying in perhaps a lame way to make the point that these drugs cured 100% of the GT1s (44 patients) with minimal side effects. I, myself, am GT3 and the results were 91%. (42 out of 44 patients) . Fibrosis progresses faster in GT3s, so I guess I am guilty of throwing out anything I can right now in a desperate effort to get somebody to help!
Again, my deepest apologies to you and anyone else who was hurt by my post!
It would be insulting if you were speaking solely to Will or some of the other folks here that really know Hep. C and all it entails but for the majority of us, there is no insult in what you said. You are right.
I have exhausted my list of people and they all signed. Wish I could dig up more.
I can't remember how many times I've told people to arm themselves with knowledge, start reading threads, learn about the disease and it's treatment. It's almost part of the basic template of what people get told by many members.
After 8 years it's as though I've still just scratched the surface. Every new year brings new drugs, new treatments, new facts about the virus including.....so very often..... facts that seem to fly in the face of what we thought we knew.
I didn't see the post as offensive in any way.
I *did* see some naughty remarks on the other side of the forum today though. : ) : ) : )
NO- because petitions are not the mechanism by which safe and effective drug therapies gain FDA approval and are brought to market. Besides, it seems a little premature for a lay person to decide to move Heaven and Earth (based on a study with 44 people) to tell a multi-billion dollar company employing an army of trained and well educated biochemists, PhDs, and experienced researchers what drug combinations are safe, effective, (and profitable).
LOl; it's an excellent post; but it's excellent hyperbole. : )
Heaven and Earth? C'mon. : )
The purpose of the petition isn't to part the sea, it's probably closer to asking Gilead to continue in the most direct, the straightest line, the shortest distance and least cost (since the expense is shared) to the most effective form of treatment that has yet arrived to treat HCV. (It might also be the safest too since triple therapy is very hard on cirrhotics, but too hard to extrapolate that from the numbers ......yet)
I think of the path akin to driving from Oakland to San Francisco. The path that appears that Gilead is going to take is Oakland, by way of Reno. : )
Partnering is a means of getting the most efficacious cure (have we seen a higher cure rate elsewhere?) to the people who need it in the shortest period of time.
(yes, I agree the numbers turned in are low, but the data on the two drugs is high and it appears that the ongoing trials are working well. I just read of a null responder to triple therapy clearing in the collaboration. If you think the numbers are low in the trial result, compare them to the numbers of people who have treated in any fashion w/ 7977 and 5885; how do those numbers look?)
The issue about delaying the drug compound probably would not affect me at all, but there is the simple calculus of human mortality rate in cirrhotics. The longer the most effective treatment is kept from approval, people who need that; cirrhotics, null or non responders near the end of their rope.....some of these people will not last long enough for the launch date of what looks like what Gilead will do; team 7977 with 5885 which will take longer to gain approval, which is a longer and more uncertain path.
Read this and work the numbers;
"There were 15,106 deaths due to hepatitis C in 2007, almost 75 percent of them among people ages 45 to 64. The report appears in the Feb. 21 issue of The Annals of Internal Medicine."
My math says that in 2007.........41 people died every day due to HCV. That rate approaches almost 2 deaths per hour. It is 1233 deaths per month give or take. That was 2007 and we all know that as the population ages and the damage increases that the death rates were forecast to increase.
I think that the purpose of the petition is to tell Gilead that we are paying attention, that we know that they could do this, but seem to be taking the path of profits, the longer less direct, less certain path.
I won't invoke names of people on this board who could be cured by the best form of treatment, or people who could have been saved but have passed, but people who spend time on boards know who some of these people are. The fact is that for each day the best cure is delayed people will die, and perhaps without need.
If people didn't raise a stink about trans fats we would still be eating them. My God; they were in everything. The food industry didn't care that people died, that our health was impacted negatively; it was good business because the food products had a longer shelf life. The *human cost* was ignored. Only when enough people made it important, only when profits were threatened did the corporations respond.
In this case, it's the HCV infected cirrhotic people who have the shorter shelf life. Taking the longer path to DAA approval will cost some people their lives.
Many of the so called experts have been critical of Gilead. The stock people say that there is only so many infected people, the window is only so big, the infected numbers are finite. If you cure them once; that's the end of that. Many of us will not need the "best in class" drug treatment to get cured. There will be many coming, but this combination hold the potential of being truly best in class and first, and easiest to gain approval for.
I don't really need this combination to win approval, not for me. But I know people who could benefit from it. I have a friend with a meld score who slides in and out of ammonia control problems who lives in an area that they don't have a great shot at getting a liver. We aren't all Steve Jobs. This drug combination could save their life. I know we all have people we know who cannot wait for an unnecessary delay. My friend has recently stopped answering their phone. Sometimes things happen in days.
That is what this petition is for. People I know, people you know who can't do it themselves.
If it is a question of "moving heaven and earth", then this would be the motive.
Well, I've answered with my own hyperbole, but that is fine too I hope. Sorry about the amount of it though. : )
I know nothing about you from your profile, not even if you have Hep c. Just a hypothetical question...I couldn't help but wonder. If it were yourself or a loved one who could not afford to wait for a drug, that had a better than average chance of saving your lives... would you do everything in your power, including trying to "move heaven and earth" to help obtain it, or would you sit, wait, and do nothing? Not to say you would be successful, but wouldn't you at least try?
Personally, I feel very thankful for "the lay people" and the movers and shakers, in this world, who take the time to "at least try" to make a difference. Afterall..."Every journey begins with a single step."
@Willy50...no apologies necessary for being so sincere and passionate!
I've been undetected for over 9 years now. I've watched friends drag themselves to work while dying of ESLD to do pick and shovel jobs just so they could afford another month's worth of meds back before there were 'compassionate care' programs - before Pegasys was FDA approved. I've followed people spending small fortunes on experimental treatments who still haven't cleared after multiple attempts at tx. I've followed the developement of protease inhibitors and seen PIs with fewer overt sides than tele' or boce' pulled from testing because parallel primate testing showed they had cardio' sx that hadn't shown up yet in stage 3 trials.
I've seen a lot of people pour time, effort, and emotion into letter writing campaigns that went nowhere.
If there were a way save myself or a loved one from dying of this disease I would do whatever was necessary
I think that is what this petition is all about-no one can say it is "going nowhere" All we can do is try and I give kudos to Tanya and MDudley and any folks who are putting the effort out there to help themselves and others with this dread disease.
Did not mean to attack your opinion. I find myself a bit emotional lately, especially when it comes to this subject. That being said...I suppose you do understand. Having seen all that, would affect one's opinion. Thanks for caring enough to hang around 9 years later. Best wishes to you desrt!
"My math says that in 2007.........41 people died every day due to HCV. That rate approaches almost 2 deaths per hour. It is 1233 deaths per month give or take. That was 2007 and we all know that as the population ages and the damage increases that the death rates were forecast to increase. "
I was having a pretty good day today. I went to get my haircut and colored (first time I have felt like it in almost eight months) and then went for shiatsu massage. But after the massage was over, I found myself thinking that possibly 14 or more people had died from HCV during that time. I shed some tears because of the sadness of that fact, but then it just renewed MY RESOLVE to keep doing everything I possibly can to stop this insanity! I told my hairdresser this morning about my HCV and he was very happy to sign the petition and gave me his email adress so I could send him the link to pass on to all of his employees, friends, clients, etc. and then proceeded to tell me about a friend of his that had HCV as well. And last night I received a call from a woman I barely know and have not seen in over eight years. She had heard through one of my husband's clients about my HCV and called me to share her own story and offer her support to me, and most importantly, wanted to sign the petition and share it as well.
The daily goal I have set for myself is to make at least three people aware of what is going on with Gilead and to encourage them to sign this petition and spread the word. It doesn't sound like much, but if those three get at least one or more, then it puts us that much closer to our goal of 100,000 signatures. When I see that someone I asked has signed the petition, I have been sending an email expressing my deepest gratitude and then urging them to pass the link on to others!
And, Willy50, would you mind if I used "your math" to post something on my facebook page (save me from having to try and do the math on my own...lol).
And I thought your post was so on point and portrayed the urgency of this matter so beautifully!
Tanya - Afterall..."Every journey begins with a single step." My thoughts exactly and thank you for all that you are doing!
Rivil - Thank you as well for your efforts and your encouragement!
I'll have to admit that I got pretty scared when you started talking about using my math. : )
It ends up being an approximation really, but is generally correct, I think.
I double checked today; I still can't find a calculator, I used an adding machine and .....15106 deaths divided by 12 (months) equaled 1258.8 deaths per month. So I think I may have been wrong, but at least I didn't overstate. It's understood; some months have 28 or 30 or 31 days, so it is emblematic, and not a hard and fast number, but it is closer to 2/ hour than it is to 1.5/ hour
Based on 1258.84 (deaths per month) ,
28 days =leap year- equals=44.96 deaths/day.
30 days =1258.84/30 days=41.97 deaths per day and
31 days = 1258.84/31days =40.61 deaths per day..
------You get the point.
A very easy way to remember.... just not so accurate is 1234 (deaths/ month). If you want it more accurate multiply and add it to the total (1x2x3x4=24.) 1234 +24=1258. Almost mystical. : )
I try to check my math, check my sources, but I knock these things out in one take, with no fact checker and obviously, with no editor. : )
That's a cool thing about bulletin boards, but the bad thing is every single thing we read is not always right. But I think *generally* the info I provided is correct, but the thrust of what I am writing is more about principle.
I'm really very honored. : )
Is it OK to ask to see the final form and then give approval? I am moved that you would want to use it.
They really haven't said yes or no to the idea of continuing the collaboration, but I believe I heard them state that the current ongoing (g-1 nulls) collaboration final data won't be available till the 4th quarter of this year.
That sounds like it could be a half year if they are waiting for SVR data. Response data would become available much sooner.
If they said yes or no.... this speculation would end. Perhaps they are waiting to see if anyone will complain if they back-burner the collaboration?
They continue to say nothing and that leads to a certain amount of speculation.
Not to worry, Willy, I will certainly give you the opportunity for "editorial review" :)
I will work on it this afternoon and PM you with what I am going to say BEFORE I say it.
Going to get busy today and hope to see that 1000 mark tonight!
Petition count: 793
So fellow heppers...lets get to work! Stand up, be proud, be counted! Perhaps God allowed me to get this disease for just such an opportunity as this... The possibility to change the lives of millions (in addition to my own...hopefully).
You know it would be really great if your link made it possible for all companies to work together to find the best possible treatment drugs for all of us. I have personally worked with Gilead in the past and I think they're doing all they can to cure and find ways to tx this disease to the best of their ability. I think if you dug deeper you could find situations where the manufacturer's of both Vic and Incivek have crossed similar paths that Gilead and Bristol Meyers find themselves in. I feel that all companies should work together to find a cure, vaccine et al. in the tx of this hideous disease but is it gonna happen to approach the situation with a link to vote or is it gonna require legislation? I'm just sayin'. Please educate me if I have missed something.
Why would Gilead need to search for better treatment for HCV if the results presented at EASL are correct? GS-7977 + BMS-790052 (daclatasvis) trial results were 100% CURE in GT1s with little or no side effects... 92% in GT3s (which happens to be my GT). So somebody please educate me...I am either the most naive person to ever have HCV or just plain dumb! Or perhaps both.
Petition update: 1124 and growing!
"When they feel the heat, they will see the light"! perhaps!!!
I wish this forum gave the ability to edit!! I see your point about Gilead and Bristol having the key to the drugs almighty but I question your opinion and research as far as the ability of Gilead and Bristol to come together on this tx. There's always two or more sides to every story. Besides that you missed my point about (the manufacturer's of both Vic and Incivek have crossed similar paths that Gilead and Bristol Meyers find themselves in.) But nevermind toots, I got bigger fish to fry. Good luck with your petition.
"If you have not signed it, I am curious to know your reasons."
I haven't signed your petition yet because I gotta make sure it's legit and not something some nut job put together. Usually if someone wants you to sign their link they give more information and they're usually very nice to people. All you do is try to tear somebody apart if they don't agree with you, what's that about? Has Gilead promised you anything if you get together your hundred thousand signatures?
Today I spoke to a doctor that would know anything and everything about this fiasco with Gilead holding up a "sure fire tx regime" and I found out that you are absolutely correct. I am sorry, I was wrong. Anyone and everyone should sign the petition no matter if anything happens or not! Either way it will send a message.
Just to clarify this is the way I heard it. I heard alot of people are mad at Gilead because they won't use the drug that BMS provided for the trial where they had extremely high success rates. Gilead provided their drug and Bristol (BMS) provided theirs. The results of the two drugs together blew the roof off the place. Everyone was astounded!! Instead Gilead says they have their own drug that can do the same thing as BMS's drug but it's simply not true. I guess Gilead don't want to lose money that they've spent on their drug so they have pulled out of the whole idea of working with BMS entirely. That's the pitts!! I am shocked that they would pull away in such a blatant manner but they did. So much for Gilead being on the top of my list of the best HepC companies!!! Sign the petition people!!!!!!!!!!!!!!!!!!!!!!!!
Yes, you have to enter your name and address and email. I was apprehensive as well cause I don't let just anybody have my information but in this case I made an exception and I feel everyone should. If you just cut the link below and slap it onto google, the link info comes right up. Lets get to signin' people!! bump it up.
I just haven't signed it because after 7 or 8 years now and thousands of petitions and letter writing campaigns - I no longer have a 'psuedo' ID and cannot use my work email for things like this any longer.
However; I do hope it gets somewhere. It'd be nice to win one for a change.
Fretboard...I am so darn grateful to you! Yes...let's get the word out! I refuse to miss an opportunity to get someone to sign this petition. I got my acupunturist, hairdresser, massage therapist, Time Warner cable service guys (on a service call at my house), and many others to sign. I told both of my daughters that for Mother's day all I wanted was signatures on this petition (they got 35 of them :). I have made up fliers and left them at the post office, ATM, etc. and I post unrelentingly on FB. I have written the newspaper, one of our US Senators...anything and everything I can think of! And tomorrow my husband (he finally got permission) is putting out an office email to over 1500 employees!!! The word is starting to get out there...I have seen people's names from all over the world! We need 100,000 signatures by July 20th in order to present this petition to Gilead.
Although you are required to enter your email & address this information is not shared anywhere. As of a few minutes ago, we have 1150...hoping to see that number rise significantally in the next few days. Michael Labhard is the person who started this petition because he has a friend who had a liver transplant and desperately needs these TWO drugs just as we ALL DO! So heppers UNITE! There is a CURE for Hepatitis C and Gilead Sciences holds the KEY...we will make them OPEN the DOOR!
"So heppers UNITE! There is a CURE for Hepatitis C and Gilead Sciences holds the KEY...we will make them OPEN the DOOR!"
Rah rah sis boom bah go team go!! Let's get them signatures going people and if you can't sign up for one reason or another then send out the link to friends and family to go to that link and sign up. Actually I feel if you have a facebook account you have more to worry about than change.org but that's jmho. bump bump!!
We had over 502 signatures today for a grand toal of 1654! This is the biggest day yet and I think it is going to grow tremendously in the next few weeks.
Please sign and share this petition via emails, twitter, facebook, etc.! I believe we can do this. I believe we can pressure Gilead into collaboration with BMS...all it takes is enough signatures. So appeal to everyone you know!
Well I signed it. I am apreciative of the efforts of Mdudley and athers for taking the initiative.
Among those with a need for a new drug are transplant patients. There are many of them who have failed Peg/Riba and cannot take Telaprevir or Bocep because of serious interaction with the toxic immune inhibitors they must take.
Since HEPC is the #1 reason for liver transplantation in the US, and genotype 1 is the most common genotype, I imagine that there is a great number of people currently in dire need for an effective therapy with or without interferon.
GS-7977with Daclatasvir looks like the best hope right now.
A big thanks to all on the forum for the good posts here!
Please help to have Gilead answer up on what they're gonna do about this mess. If you do nothing we get nothing! If we sign or at minimum have friends and family sign then we have a chance to change something here. check out the links!!! Please...
Bump this sucker up top!! C'mon people, if you haven't already promoted that your friends and family sign the link then please do so. I know, I don't like giving out my information either but there are websites like facebook that know more about you than the link is asking for. We have to stand united on this issue. If you're sick and tired of the stigma and negative publicity that HepC gets here's your opportunity to do something about it. Sure the link won't change the stigma but it will show that we have somekind of movement and we are united on something. Read through all the posts in this thread then sign or send the link to your friends and family. Thank you very much!! bump, bump!!
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