This is good, I will sign. We should also organize some big marches. People have to stop being silent about this, and we need to remove the stigma.
Lots of the big rock stars have Hep C, they should do some benefit concerts, where awareness is raised~
I remember, 12 yrs ago, right after my son was born, I sat on a float, in the Pride Parade, in S.F., holding a big Hep C Banner.
Thank you! Let's get the word out....100,000 signatures will possibly attract some attention to this. I wonder what kind of attention 4 million signatures (the number of US citizens alone with HCV) would create! Hold that banner high!
Try this one...it has a # sign at the end...not sure if that has anything to do with it. Or you can just go to change.org and 'browse' the petitions and find the one pertaining to Gilead. This may be our only chance to be heard...so please keep trying. I was reading some of the names of people I know who signed who didn't know I had HCV until yesterday...it brought tears to my eyes. I was reluctant to share with just anyone and everyone that I have HCV...but now I want the world to know it!!! And I want them to know about the new treatment that could save millions of lives including my own! Hope this link works for you! Heppers unite!
Maybe I wasn't clear. The link to the petition page worked fine. On the petition you have a link to the article "Quoting from The Street (http://alturl.com/rnh8p)..." and that link doesn't work; I tried it on two separate browsers. I have the article but just thought it best if you fixed the link.
Sorry...I was afraid that you meant it wouldn't let you sign the petition. I have no control over the site as I did not create it (but I would have if I had known how..lol). This is slow going, however, because the last time I looked only 52 people had signed thus far. But I am going to continue to put the word out in anyway I can... if anyone has any ideas I am all ears :) Best to you all!
That is great! Spread the word! We need some momentum!!! There are over 170 million of us worldwide and from what I have read, it only takes 100,000 petition signatures to bring attention to this terrible turn of events!
Well since you asked for ideas, I think it's crucial that if you're asking people to sign a petition that's based an article that people be able to access the article. Most people like to know what they're signing before they sign so I think this is a major problem.
Where did this petition come from? Is there anyway to contact Michael Labhard who created this and have him fix it? If the link worked I'd be happy to post it to all the HCV forums I know of.
I think this petition is important and if you want people to take it seriously it should be done properly. Well, just my two cents...I don't mean any disrespect.
I found this link by reading a post by 'sheepdog' under another post about Gilead/BMS. I will look back and find exactly where it was. I did copy and past the article below from the site. But I see what you mean about the alturl link.. Unfortunately, I am pretty illiterate when it comes to computers...a struggle for me just to manuever around on this site...lol! Any 'techies' reading this...hhhelppp!!! I appreciate your input, Katla...and I see your point completely! Can anyone shed any light on this?
Following copied and pasted from change.org site:
Why This Is Important
Quoting from The Street (http://alturl.com/rnh8p) "The most effective new therapy for hepatitis C -- two pills that could cure nearly every patient treated -- may never see the light of day because the developers of these new medicines, Bristol-Myers Squibb and Gilead Sciences, seem unable to work together. Apparently, profits are more important than best patient care. Best therapy combines Bristol's daclatasvir with Gilead's GS-7977. Each is a single pill administered once a day. The results from this new therapy are nothing short of spectacular -- an early cure rate of 100% for genotype 1 patients and 91% of genotype 2/3 patients, according to data from a mid-stage study announced Thursday at the European Association for the Study of Liver Disease (EASL) meeting. Amazingly, this most promising new treatment for hepatitis C patients may actually be discontinued because Bristol and Gilead can't work together. Gilead needs to justify that $11 billion and deliver profits and returns to its shareholders. Collaborating with Bristol would more than likely dilute Gilead's Hep C profits, which helps explain why Gilead isn't exactly thrilled to push ahead. Hep C patients in need of convenient and potent new cures are being hurt." Please sign this petition to urge Gilead to work with Bristol-Myers Squibb on this drug combination for the benefit of those suffering with hepatitis C.
It's awkwardly put together. It does not clearly state, what they are petitioning for although the sentence below I explains it.
I think anyone can put together a petition, and though they may have the best intentions, they seemed to have missed a crucial step.
The only thing I can think of is to get a hold of whoever wrote it.
" Please sign this petition to urge Gilead to work with Bristol-Myers Squibb on this drug combination for the benefit of those suffering with hepatitis C."
Not quite a petition is it ?
Perhaps there'd be more signers if people could see in simple clear words, what the petition states.
I went to the site through a link posted by 'sheepdoggie' on 04/23/12 in a reply to UKgirl55 posted on 04/19/2012 titled "How do we put pressure on Gilead/Bristol". I see that he/she just joined the forum and has no prior posts or other info on profile page. I was excited by what I saw as an opportunity to finally do something that I thought might be helpful for us all. I have pasted below the posting by 'sheepdoggie'...and thats how this all began. I don't know what else to say about it, but I will try and contact someone at the site tomorrow (if that is possible) and let you all know if I find out anything.
Reported Report SpamAbuseDuplicatesheepdoggie
Apr 23, 2012 .To: All.A petition was begun to encourage Gilead to do the right thing. Please sign it:
Adam Feuerstein is The Street Senior Columnist who wrote the article. The petition was based on his report. There is a link at the site to contact/email him if anyone has questions. Whether or not he will answer, IDK.
Gilead, Bristol Put Profits Ahead of Best Care for Hep C Patients
By Adam Feuerstein
An exciting new hepatitis C treatment may never reach patients because Bristol-Myers Squibb and Gilead Sciences can't work together.
Related Topics: Biotech | Drugs | Health Care
If Adam Feuerstein has his facts straight and knows what he is talking about, it's a sad story. Bristol holds one half of the winning combination to cure HCv and Gilead holds the other half. Bristol claims Gilead refuses to work together; the author says it's because it would dilute Gilead's profits which they cannot afford to do since Gilead just paid Pharmasset $11 Billion to gain control of GS-7977 and Gilead needs to justify that $11 billion and deliver profits and returns to its shareholders. Gilead denies that is the reason they won't collaborate with Bristol. According to the story, rather than work with Bristol's product Gilead is choosing to go it alone and come up with their own drug that will be as effective as Bristol's....but, it's going to take a long time.
Sounds like another American greed story? Maybe the original author could write something to post on Medhelp and explain in more detail? I'm going to send him an email and see what happens.
1. NBC and CBS - Stop allowing jokes about people with Hepatitis C
2. Edward Cox, Director of FDA antimicrobial products: Hepatitis C, look again at the drug companies research and other treatments
3. Gilead Sciences: A phase III collaboration for the treatment of hepatitis C.
4. Show Business in General: Stop using the Hepatitis C virus as a punch line
Will the person who started the petition make sure that the signed version gets forwarded to the correct party at Gilead?
You don't have to share your information. Tell the people who are afraid to sign it that they ca really put down any address, and check the box that says that they want to sign it anonymously. Grow some balls, folks!
It is my understanding that Gilead is looking at a number of other drugs to pair with 7977, not just their own drug. Wouldn't they be foolish to jeopardize 7977's record and not pair it with the drug that works best? I'm not sure a march or a petition is the best way to go abut making our feelings clear. I'm sorry to say that hepatitis C patients haven't been particularly proactive in the past. Maybe it is because we are all so darn tired. And, I'm not sure that one article accusing Gilead putting profit above patients is not just one person's thoughts. I think we need more information. Perhaps sending a letter to the person at Gilead who is in charge of patient advocacy and/or patient relations, make be better. A couple of dozen letters on oneperson's desk makes a bigger impact than a petition. But you must make sure you have the facts straight.
"I'm sorry to say that hepatitis C patients haven't been particularly proactive in the past"
Seriously? What have they had to be proactive about? For the last how many years we've only had the option of SOC with a possible 30% chance of clearing the virus and undergoing hellatious tx for a year or two, that has left some people disabled. Umm....I wasn't anxious to get in line for that one. It wasn't until Hep C was global and spiraling out of control, that the pharma's saw the potential money to be had and stepped up the research! Now they have a cure in the making, it's still about how much they can pad their pockets. I think we finally have something to be proactive about.
I hear what you're saying about getting the facts straight, but on this one I think it's pretty clear. Now if Gilead will step up to the mic and tell us some more good news, or what the future plans are going forward, that would be a good step in aleviating some concerns, instead of leaving people hanging.
My point is that we had lots to be proactive about....better research, better surveillance, better patient assistance programs, better medications, visiting the HIll and asking for these things.You said it yourself, we had nothing but SOC. So, I think we are actually agreeing on that point.
Back in the early 90's there were hepatitis walks planned in many places. I remember traveling to Washington DC to participate in a walk to the Hill, led by one of the early advocates, Thelma Thiel of Hepatitis International. Only 25 people showed up. Some of us participated in World Hepatitis Day in DC two years ago. There were advocates from both Hep B and Hep C there. But again, there weren't that many people considering it was a global day set aside and lots and lots of media coverage. It starts with awareness.
I'm not putting anyone down and I appreciate anything any patient can do for the rest of us. I was just sharing what I have seen and learned during the last 18 years that I have been involved with the hep C community.
i just have to say that this is a great thread. i read the info on the site mentioned and i have to say that these pharma co's are for-profit businesses and have to respond to market pressure. as billy shakespere said " there in lies the rub". they have to compete to be profitable. maybe gilead has a business strategy that doesn't require BMS. i think the original article was from an investor website. wall st is all about speculation and hedging; that's what they do. so i can understand the why they are concerned about these two major players in the HCV world not playing nice together.
but all of us have an obligation to educate people about this disease and stop the bashing and jokes...thanks again for a great thread.
" For the last how many years we've only had the option of SOC with a possible 30% chance of clearing the virus and undergoing hellatious tx for a year or two...."
Ten years with a 50% chance of clearing with 24 or 48 weeks tx. Engrossment does little for our credibility.
Wish I could be more optimistic, but I can think of 11 billion reasons ($) why 4 million or 40 million signatures will carry little weight. All the lobbying to fast track teleprevir and boceprevir met with little but polite response letters from the manufacturers. In the end it was the fact that the drugs could be marketed in such a way that doctors would Rx them to all geno 1s despite the fact that only 25% of geno 1s actually need them to clear. 25% still don't clear even with triple and 50% would clear without them. [Admitttedly some are able to shorten their exposure to IFN (a good thing) - though even the manufacturers have admitted the added side effects have almost doubled the number of patients who've had to discontinue tx altogether.]
In the end market share and patent rights will determine what becomes available to us.
I wish those of us in the Hep B community could get the same kind of critical mass you all are getting in the Hep C community. It doesn't seem like anyone wants to speak up for HBV :o( I feel all alone!
Yes! I will sign, but can't access petition to sign it!!! It is definately WRONG what Gilead is doing. They are so greety and care more about the $$$ then Hep C treatment. I read where BMS offered to initiate a phase 3 trial
with gilead, but gilead turned them down!! SO we need as many people as possible to sign petition. Let me know
how i can do that.
Please KEEP trying at Change.org Our window of opportunity may close quickly if we don't start acting now by getting as MANY PEOPLE as possible to sign. I have had 20 family and friends, and people who just plain don't think it is right,sign the petition. A few did have some problems at first but kept trying until they succeeded. Two drugs together that have CURED HCV! WE WANT the cure and WE want it NOW! Please keep asking all the people that you can reach to sign this petition and lets try to get Gilead to 'see the light' before millions of us reach the point where even a cure is too late. Come on people....fellow HEPPERS put an L in there and lets be heLppers! Are we going to sit by because we are "too fatigued by our disease"??? Heppers UNITE!!!
Thank you for not giving up and spreading the word! We can make a difference in the world and we REFUSE to sit idly by when there is a CURE to be had! We want the CURE and we want it NOW!!! Gilead needs to realize that they could begin recouping that 11 billion now rather than spending hundreds of millions developing a new drug that may prove to be not as effective as the results with BMS 790052 (daclatasvir). Come on Gilead..."don't throw the baby out with the bathwater". Heppers Unite!
I checked change.org this morning and thus far there are 254 signatures. Just 99,746 more petition letters to Gilead and we might get them to see how determined we are to be CURED of this dreadful disease. So please keep getting the word out about this petition. If we are not successful, I think we will have no one to blame but ourselves! Do we want the CURE? YES! When do we WANT it? NOW!!! Fellow Heppers Unite! Sign the petition at the link below. If you encounter a problem KEEP TRYING...it sometimes takes more than once. God bless Michael Labhard MD for starting this petition!
I wonder how we could get this on Oprah? We need some momentum. Last checked only 431...where is everybody??? If we could get enough numbers, we could get someone's attention. Thanks for putting it back to the top can-do-man!
469 signatures this morning...feeling more optimistic! I sent a letter to the '***@****' last night. Will let you all know if I get any response. I did communicate via email with Michael Labhard and the reason he started the petition is because he has a friend with HCV who has had a liver transplant and is in dire need of these drugs! As we all are! So, if you haven't done so yet, please sign the petition. If you tried already and didn't succeed, please try again. Let's start helping ourselves and then perhaps others will help us as well. My best to all of you!
I don't want to throw cold water on the efforts, but just for fun, google; "gilead petition". You will find that there are more than this one issue which has inflamed people and who decided to retaliate and give voice to their concerns through petition. This issue with the idea that Gilead puts profits first seems to be a recurring theme.
Here is a little bit further reading from Adam;
"Gilead Sciences'(GILD_) new corporate slogan: "Profits Over Patients."
On its first-quarter conference call Thursday, Gilead executives basically gave the middle finger to hepatitis C patients by offering all manner of lame excuses for not collaborating with Bristol-Myers Squibb(BMY_) to advance the highly promising combination of daclatasvir and GS-7977 into phase III studies.
John Martin and his Foster City gang paid $11 billion for Pharmasset and damn it if they're going to give away the biggest slice of Hep C pie. If patients suffer, well, that's too bad.
Of course, this is the Biotech "Stock" Mailbag, so Gilead's piggish behavior is great news for shareholders. Let's all high five!
Gilead may actually have the superior hepatitis C regimen in GS-7977 and GS-5885. I certain wouldn't begrudge the company from moving forward with this combination therapy as quickly as possible. But c'mon, there is nothing stopping Gilead from combining GS-7977 with Bristol's daclatasvir at the same time.
Except naked greed.
Some hepatitis C patients have started an online petition seeking to pressure/shame Gilead into doing the right thing. You can view and sign the petition here. (contains hyperlink to petition-willy)
516 and counting! Slow but sure. No cold water...just fuel to the fire! I think it is great that Adam has a link to the petition and thank you for sharing the link as I probably would have missed it. I did write a letter to one of our U.S. senators this morning, Kay Bailey Hutchinson, and will be writing Senator John Cornyn as well. While it may do no good whatsoever, it makes me feel as if I am at least "having my say".
I still am 'baffled' as to WHY Gilead partnered with BMS to begin with??? I mean you can't get better results than a 100%. Can you or anyone else out there tell me just what I am missing? I was just diagnosed last September so I only have about six months 'experience' with this...so I am still trying to make some sort of sense out of it.
But in the mean time, I am still encouraging all who read this to SIGN THE PETITION at the link below. It can't hurt...and who knows - the life you save may be your own :)
What seems apparent to me is that if the partnership is dropped, then according to FDA rules (or as I thought I understood them), you need to re-prove safety, efficacy, dosing, formulate trial arms and prove this works to the FDA., with the different new compound in combination with 7977.
No one yet is able to say, or willing to say how much of a delay this will be.
"A combination of two pills proved extremely effective in treating hepatitis C in a small trial, raising hopes among researchers that the disease will be curable without an injected drug that has debilitating side effects.
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.
“The only appropriate motivation should be what is the best and fastest way to get cures, not what is best for the shareholders,” said Dr. Scott Friedman, chief of liver diseases at the Mount Sinai School of Medicine in New York, who was not involved in the trial."
Update.....618 people have signed the petition! I urge everyone to sign this petition at the link below if you WANT the CURE and you want it NOW! Come on...don't just sit there! Gilead has the cure...GS 7977 partnered with BMS 790052. Stand up, sign up, be HEARD! I have told virtual strangers about this...not to mention family and friends...and they have become downright indignant about Gilead's refusal to work with Bristol-Myers. WHERE is your indignation??? Get it out...get MAD...do SOMETHING by signing this petition to let Gilead know we refuse to just stand by and DIE from this dreadful disease! When you do sign up, be sure and read the reasons why other people have signed....it is HEART BREAKING to say the least!
I just joined another hcvsupport group yesterday...but I have not figured my way around it yet to be able to post. I am technically 'challenged' it seems :) But I am not giving up...just may take a bit. As to this forum, I think there are still a lot of people here who are unaware of what is taking place with Gilead...and the fact that Gilead holds the KEY to a CURE (GS-7977) but refuses to unlock the door! So once again, I urge everyone to SIGN the petition at the link below.! It is a matter of LIFE or DEATH for us all. People save yourselves!
In answer to your bafflement about why Gilead partnered with BMS in the first place, the answer is that 7977 was developed by a small research company in Princeton called Pharmasset. They were the ones to undertake the joint trial with Bristol Myers Squibb about a year ago when researchers were beginning to take seriously the potential for all oral DAA combos without ribavirin or interferon.
Gilead then bought Pharmasset for over 11 billion dollars. They currently dominate the HIV drug market with about 75% of the business, but apparently their patents are expiring. They wanted 7977 so they could do the same thing with HCV and keep their shareholders happy. Now they don't want to share the future wealth with BMS despite the best trial results imaginable for Geno 1's.
I think it may be worth using Avaaz, a global online petitioning site to put pressure on Gilead. If Hep C patients worldwide can participate in this, the numbers could take off. All we're asking for is for Gilead and BMS to work out a win/win arrangement that works for the financial and ethical interests of their shareholders, and of course for the 170 million people with HCV. We may also be able to work with Gilead shareholder pressure groups that demand social responsibility. There may be union or church pension funds etc who are substantial Gilead shareholders and would advocate for an ethical solution. This requires research. But of course we're dealing with Big Pharma here, a branch of capitalism as notorious as Big Oil, and it's unlikely to be easy. Still, anything's possible. Who would have guessed we'd have a probable cure for Hep C a few years ago?
A further thought: we need to find out the estimated time frame for Gilead to bring its counterpart to BMS 790052 to market. How many years of trials will this take, even assuming that it combines as well with 7977 as Daclatasvir? How many people will have died of Hep C worldwide during that period? How much unnecessary suffering could be avoided? These facts can be used to pressure Gilead.
Some doctors will support our initiative, such as the doc from Mt Sinai Hospital in New York quoted by Adam Feuerstein. Doctors, patients and ethical shareholders need to combine their efforts, it seems to me. It's May Day after all.... Hepsters of the World Unite!!! We have nothing to lose but our viruses!
You are most welcome! And thank you as well for keeping this going. Michael Labhart (who started the petition) has fixed the embedded link at the petition site so that you can use it to see the entire article.
He also told me that once there were enough signatures that Change.org would make the petition available to be sent to Gilead. Last count we had 696 signatures! Woohoooo! Not nearly enough but certainly a start!
Update on petition: 926 have signed! I reached out to eight more people this weekend and they signed. I keep my ipad with me and look for every opportunity to tell people what its going on with Gilead Science and once I have their attention, I hand them my ipad and ask them to please sign this petition because we we need this CURE NOW!. I could probably do more if I didn't feel so darn tired all the time and the pain in my back is sometimes more than I can bear. But the hardest of all to bear is to think that there are 2 drugs out there that could help me and millions of others without the often debilitating sx of of interferon and ribavirin. I pray often that God will "open the world's eyes"!
Update: 940 people have signed this petition...please keep getting the word out there and ask EVERY PERSON you know to please sign "our" petition and share via Facebook, Twitter, etc. I got three new signature this morning and by hook or by crook I am going to get at least three more before the day is out. That is my PLEDGE to my fellow heppers...so help me GOD! May is National Hepatitis Awareness so lets make the most of it!
"The most effective new therapy for hepatitis C -- two pills that could cure nearly every patient treated -- may never see the light of day because the developers of these new medicines, Bristol-Myers Squibb and Gilead Sciences, seem unable to work together.
999 people have signed a petition to pressure Gilead to collaborate with BMS to take these trials to phase III....so if you haven't signed it, please do so...and then ask everyone you know to do the same. Link to petition:
Update on petition - 1654 signatures....502 of them TODAY! The word is getting out. So keep getting anyone and everyone you know to sign. If nothing else, we will be educating a lot of folks during Hepatits Awareness Month! But I truly think we can win this victory against Gilead if we bust our butts to get this petition out there!
Update: 1797 people have signed (over 500 in one day). I have been reaching out and connecting with people from all over the place...LA, NC, CA, AL, CO even France and Italy...some of their stories are truly heart breaking. One Italian gentleman told me he would sign (and he did), but he could not reach out to others because his boss does not know he has HCV. An author from Paris, who wrote a book about her long but unsuccessful (unfortunately) HCV treatment, says that HCV is truly a taboo subject there because so many people got HCV due to the government's failure to screen blood supply. So HEPPERS UNITE...an estimated 3% of the world's population has HCV...so 100,000 signatures should be a "piece of cake" :).
It is mind-boggling at the number of people who have responded to the email my husband put out to employees at his work , because either they, a loved one, a relative, friend, etc. have HCV. It just really took my husband and I both aback at the numbers...had no idea that we knew so many others who were dealing with this disease, too.. It has just motivated me that much more to continue until we reach our goal! So please continue to help get the word out about this petition.
HEPPERS UNITE - There is a cure for HCV without INF/RIB and we won't stop until it is made available to us!
In 2008 over 250,000 veterans in the VA's care were diagnosed with Hepatitis C. In observance of this Memorial Day...please sign petition urging Gilead Sciences to go forward with trials that resulted in a 100% CURE RATE without interferon OR ribavirin. Show our veterans that we care and let Gilead Sciences know WE WANT THE CURE FOR THIS DISEASE AND WE WANT IT NOW! Hepatitis C now kills more people each year than AIDS..help put a stop to this ****SIGN & SHARE***
Hope you all had a wonderful Memorial Day weekend! Our petition is gaining momentum slowly but surely. Did any of you see the Canadian news clip about Mike MacDonald (comedian) talking about his HCV and need for a living liver donor. It was very honest and brave of him to do this...and I hope he finds the perfect match for him. I made contact with an old friend from Nova Scotia because of this video and she put the word out in her part of the country and Canadians are getting on board with the petition. Be sure you are still spreading the word in your part of the country!
Petition update: 2278 people have signed! HEPPERS UNITE! We can fight this virus by "going viral"....fight fire with fire!
HEPPERS UNITE! We have to fight FIRE with FIRE! We can fight the HCV virus by making this petition go VIRAL! There is a CURE FOR HEPATITIS C and GILEAD SCIENCES holds THE KEY. If you have signed already...GREAT...did you SHARE? AND SHARE AND SHARE AND SHARE???? We can't do this without your help! These drugs cured 100% of genotype 1 without interferon OR ribavirin...they cured 91% of genotype 3...with MINIMAL OR NO SIDE EFFECTS! You need to be posting this continuously...there are over 170 million people with this disease...PUT an L in HEPPER and become heLppers! Don't just sit there and give in to this damn virus. Let Gilead Sciences know we will not just sit by while they pull the same stuff they have with Tamiflu (google it and Donald Brumsfeld). This is YOUR call to ACTION! ***SIGN***SHARE***
Petition Update: 2343 have signed. We need 100,000+
C'mon gang! Let's stand united on this issue! If the collector of these signatures comes up short then we all look lame and uncaring of our disease. If we don't care, then you better believe nobody else will either.
What's worse is we will all look like a bunch of dope fiends too busy chasing the dragon to care about our future. Remember, if you can't sign it then pass out the link to your friends and family and have them sign it. Lastly, if you have any doubts about Gilead and their short comings then go to google and do a little research. Or better yet, go to your nearest clinical trial site and ask them about all the anger towards Gilead over this fiasco!!!!!!!!!!!!!!!! bump, this sucker up top!!!!
I just read an article saying only 2% of the HCV population opts for treatment. And who can blame them given what the treatment options & side effects are! That is why it is of the utmost importance to "convince" Gilead Sciences to go forward in these trials. These two drugs CURED WITHOUT INTERFERON OR RIBAVIRIN! Sign & share if you want these drugs made available ASAP! If we can obtain enough signatures, we can show Gilead that they can make plenty of money by just treating the KNOWN cases of HCV.
So how's it going with your signature gathering? Have you thought of any ideas to get the word out? It's a shame that some of us have to be so secretive about having this disease otherwise I think it would be alot easier to get signatures. Hope you're doing well, bump, bump bump!! sign people sign!! Please sign and distribute the link. Kind regards, ~fret
Bristol-Myers Chief Executive Lamberto Andreotti, speaking on Thursday at the Sanford Bernstein Strategic Decisions Conference in New York, said patients and both drugmakers stand to benefit if combined Phase III trials of the two medicines are pursued.
"We have a different point of view about whether to enter Phase III (trials) with that combination," Andreotti said. "We believe, for both patients and companies, it is better to move forward" in the short term.
Come on people...we need to make Gilead understand that we want this CURE and we want it NOW.
Hey....I connected with Brother Dan Palmer (musician) who has HCV and is on transplant list. Google his song "Lactulose is my Friend"...it wouldn't have meant anything to me eight months ago...lol!. He also has a great blog that he has been writing for over two years now about his "journey" with HCV. I will post it here later. He signed and shared the petition yesterday and is going to continue to help get the word out.
Petition update: 2590 (sure would like to see some zeros on the end :)
Keep signing & sharing if you WANT THE CURE NOW without INF/RIB!
Although I think it's good to bump this post up, every now and then, the truth is to get a lot more votes, this message needs to spread.
Have you guys posted it on facebook ? Emailed it to friends? I have.
Everyone needs to be encouraged.
Greg Allman is a Hep-C survivor, I am sure he would play at any benefit. LETS GO!
I was in the music business for many years and I am sure I can find out pretty easily who has it.
I know David Crosby has/had it and a Liver transplant.
This could be a heck of a concert and open alot of eyes.
That would be awesome if he would help. I had a run in with his ex-wife (not Cher...but the one he left to marry Cher) in a club way back when in Corpus Christi TX (Lonesome Coyote Saloon). She was pretty lit and accused me of taking her seat (which I had not) and asked me if I wanted to "take it outside"..which I didn't (LOL) and then she proceeded to break down balling telling us that her ex-hubby had just married Cher. We thought she was full of it...but sure enough...she was telling the truth! I told her it wasn't all bad...at least he didn't leave her for someone ugly ;)
Petition update: 2603 have signed. This is like "pulling teeth"...just need to find the right connection :).
Maybe I have been out in the sun too long, but I was sure you had a new thread about the petition that I replied to. I stated that I had re posted the link on my FB page with a personal note about my having Hep. C, hoping to encourage those folks who hadn't bothered with it the first time.
I usually ignore posts and polls that come to me from FB friends unless I feel that person really wants/needs me to pay attention.
I hope it helps and that the word spreads.
I had also thanked you (and to mdudley too) for not giving up on this.
This will have to go viral to succeed. Mdud -cudos for your passion and hard work. Tiredofhepc- thank you for your utilization of your contacts.
What can we do that is unique and will spark interest? Time to brainstorm everyone, all the great talent and minds here should be able to come up with some plausible ideas. Remember the first rule of brainstorming is no idea is a dumb idea.
Our goal is to get Gilead to listen to the masses, that is politics and if we can accomplish this phase - gt their attention- then they will be more likely to respond in a socially responsible manner. Social irresponsibility is an intangible asset that all corporations crave. inexpensive goodwill. We have to make them want to be the hero in this fight not the villain.
Lets start posting ideas on how to get to the next step, formulate plan, strategize, implement and execute. We have the knowledge, talent and power. LETS GO START THE BRAINSTORM. Emergent leaders, lets unite!!
I saw this today, just to provide a little more current info. It appears that BMS is still trying to further the collaboration;
(visit the above link for the compete story-willy)
"By Ransdell Pierson
Thu May 31, 2012
(Reuters) - Bristol-Myers Squibb Co renewed calls for biotechnology company Gilead Sciences Inc to test one of its hepatitis C drugs in late-stage trials alongside Bristol's own promising medicine, following impressive results from a mid-stage trial that combined the experimental products.
Bristol's daclatasvir is from a new class of drugs known as NS5A inhibitors. Gilead's GS-7977 is a nucleotide polymerase inhibitor. Both are designed to block enzymes essential to replication of the hepatitis C virus.
Bristol-Myers Chief Executive Lamberto Andreotti, speaking on Thursday at the Sanford Bernstein Strategic Decisions Conference in New York, said patients and both drugmakers stand to benefit if combined Phase III trials of the two medicines are pursued.
"We have a different point of view about whether to enter Phase III (trials) with that combination," Andreotti said. "We believe, for both patients and companies, it is better to move forward" in the short term.
But Andreotti said Gilead instead seemed intent on looking "in-house" -- focusing on combinations of its own products. Gilead officials could not immediately be reached to comment."
You'll note that this thread is about 8 weeks old and there is still no word on starting any sort of trial. It is possible that if Gilead had intended to continue the collaboration that they could have started a phase 3 trial 2-3- or even 4 months ago.
Every month that goes by without a trial in progress may be equated with unnecessary mortality, since this combination of drugs seems to be effective on more advanced cirrhotics than triple therapy, may provide a safer treatment, a more effective treatment, and a treatment which appears to work on close to virtually all who have participated so far.
Oh yeah I dont care how many time people see the post to sign the petition its up to us to make it HAPPEN were not only victims were the CURE and HOPE for other people in the future lets make this worth it people! I am not this sick for nothing--- good is going to come out of it. when I am well I am interviewing some of you if you want and making a true video for You Tube it will be our stories what we went through it will get heard I promise you that.
Check out my FB page dedicated to this cause.
http://www.facebook.com/HepatitisCCanBeCured and I would appreciate any feedback, suggestions, articles, etc. that I could add to make our point even clearer. Please "friend" me there...and let me know what you think.
Hope you all are doing well and keep on getting this out there! We CAN DO this and we WILL DO this! Too many people counting on this treatment!
GREAT NEWS!!! The local news station is going to interview me next week and I need to make sure that I make the most of this opportunity to get this information out to the world. Our lives may very well depend on this. Unfortunately, I have been having some very rough days and sometimes it is hard to put two words together...so if you have any information that would help to make it clear about how important this treatment is, then please message me or email me. I would especially welcome input from those of you who have treated and obtained SVR on GS-7977 and daclatasvir only...and any side effects you may have experienced and how this treatment has impacted your quality of life. I know that everyone won't see this post, so please communicate with them and ask them to contact me. This is a MAJOR OPPORTUNITY! and I don't want to blow it! So please help ME to help US!
We need to really keep up the momentum with this petition. If a petition targeting Dominoes Pizza to "Stop Pigs from Suffering" can get over 100,000 signatures, I know that we can, too! I have now "officially" taken over the petition site (OMG..!!!) and am working in every way that I can think of to get more people to sign. I have even managed to get a local TV news interview next Thursday on KENS TV (San Antonio), so wish me luck (again..OMG!!!) The most success it seems thus far in getting people to sign has been through Facebook and emails...so keep it up. This, again, is our opportunity to help each other so keep on keeping on! Link to petition:
Yep, let's get more signatures it's crunch time fellow heppers and supporters!!. Please open and sign the link and then send it off to all your friends and or family to do the same!!. Thank you, bump bump!!
Whew...just finished the interview with KENS-TV in San Antonio. The segment will air at 4pm today on Channel 5 (for those of you in the viewing area). I was so nervous...I stuttered and completely lost my train of thought a couple of times (as only a hepper can do). I will post the link to the interview here and on the petition site when I get it. I want you all to know that I could not and would not have done this, if it wasn't for your invaluable support and suggestions...(OH, fretboard, tiredofhepc...just to mention a few). If a petition through Change.org can influence Bank of America to drop fees & the USDA to take "pink slime" out of our childrens' lunches, then I am confident that public pressure will be enough to urge Gilead Sciences forward with this cure for Hepatitis C. So please keep sharing the petition!
Congratulations! You did brilliantly. I was tweeted the link to the interview by HCVResearch. I think it's a great tool to spread the word. I thought the tv station did a very good job. Let's hope it goes viral!
Perhaps if you email the interview link to your local news stations, they will pick it up & run it. Worth a shot! Maybe add something about your own circumstances dealing with this disease. Let me know if I can offer any additional information and/or assistance. My email address is posted on the petition page. We are going "viral" on Hep C "virus :)))))
Greetings all! Just wanted to give you an update...we are making progress.
Petition Update: 3495 have signed
I urge you all to sign and/or share this petition. Tell everyone about the success of these two drugs, GS-7977 + daclatasvir (100% cure rate in GT1 without interferon or ribavirin!!!) and ask them to sign and share it as well.
HCV Sufferer & Advocate for The CURE
MeWithC, thanks for supporting this. And, to anyone who doesn't wish to sign...for whatever reason... you are giving this "silent killer" more opportunity to continue growing and devastating more lives AND you are allowing Gilead Sciences to withhold this treatment that in trials CURED 100% of GT 1s WITHOUT INTERFERON OR RIBAVIRIN!
Be silent no more - Sign it, share it, and share it again! We did NOT ask for this disease, and we want the CURE and we want it NOW!
This has been a "banner" week for us. Thanks to everyone who continues to get the word out there. There is an article coming out this Saturday (hopefully) in the Express News, and one in the S.A. Business Journal slated to be published July 27th - the eve of World Hepatitis Day! I will post them here when they do. Also, someone brought the following to my attention today (can't believe I missed it..lol):
I encourage each of you to reach out to the press in your local areas and implore them to do a piece on this URGENT MATTER! We need to put "public pressure" on these two companies if we are to succeed!
In the meanwhile, please continue to ask people to SIGN & SHARE (over & over) our petition at:
Watch the part @30:00+ minutes into video. If this doesn't spell it out, I don't know what does!!!
-Talked with Cornyn's staff member...in a nutsell...we have the right as consituents to "lobby and/or petition" for these drugs. ( Really???) And they will look into it but can't force two companies to work together...
-Express-News came for photo's today. Later e-mail from reporter:
"I am glad that you and Billy (he is the photographer and a truly awesome man) got along. Thanks for welcoming him in to your home.
The article will run next week because the Hepatitis C expert at Texas Biomedical is on vacation until Monday.
I’ll let you know a more exact date soon."
-And, save the date - July 28th World Hepatitis Day as I will (after all) be having an event at The Cove here in San Antonio (hope my wristbands arrive by then!!!) from 4pm till 7pm, free chips & salsa, and everything you ever wanted to know about Hep C and THE CURE! "They are both closer than YOU think". (Formal announcement to follow soon)
I will be there with wristbands, flyers, posters, laptops, etc. & hope to have some media attention. So any and all of you are needed & welcomed (expect to see ALL of you S.A. people there...and I know who you are...lol) & come up and introduce yourselves ;)
Petition update: 4887 have signed.
Keep spreading the word and I will do the same.
HCV Sufferer & Advocate for The Cure
Things are getting pretty exciting around here! If I wasn't so darn tired, I would be having a good ole time :). I can't wait until we all can get treated with GS-7977 + daclatasvir (WITHOUT interferon or ribavirin)...we are going to have one HUGE PART-EE!
But until that time comes, we must keep fighting for VICTORY! There is a CURE for Hepatitis C & Gilead Sciences HOLDS the KEY. Sign and share our petition to make them OPEN the DOOR! NOW!
Hi Margaret, thanks for all your hard work and support. Since I was just turned down by Gilead for a chance in their trial, I am going to invest in one of their competitors. The more competition the better for all of us. Have a great day.
The results are IN - 24 weeks AFTER End of Treatment!
Daclatasvir and GS-7977
By Sean R. Hosein
From Canadian AIDS Treatment Information Exchange
Daclatasvir was the first oral HCV NS5A inhibitor to be developed. GS-7977 is a nuke with activity against NS5B. Both drugs have powerful anti-HCV activity when used separately. In study AI444-040, researchers in the U.S. studied different combinations of both drugs in a randomized clinical trial with HCV-positive people infected with the following genotypes:
•genotype 1a, 1b, 2, and 3
Researchers recruited participants and assigned them to the following six groups:
•15 participants with genotypes 1a and 1b: all received GS-7977 monotherapy for seven days after which daclatasvir was added; dual therapy continued for 23 weeks
•16 participants with genotypes 2 and 3: all received GS-7977 monotherapy for seven days after which daclatasvir 60 mg once daily was added; dual therapy continued for 23 weeks
•14 participants with genotypes 1a and 1b: all received immediate dual therapy with daclatasvir and GS-7977, both for 24 weeks
•14 participants with genotypes 2 and 3: all received immediate dual therapy with daclatasvir and GS-7977, both for 24 weeks
•15 participants with genotypes 1a and 1b: all received triple therapy with daclatasvir, GS-7977 and ribavirin (dosed between 1,000 and 1,200 mg/day), all for 24 weeks
•14 participants with genotypes 2 and 3: all received triple therapy with daclatasvir, GS-7977 and ribavirin at 800 mg/day, all for 24 weeks
All participants were monitored for an additional 24 weeks once they stopped experimental therapy.
The average profile of participants upon entering the study was as follows:
•age -- 53 years
•50% men, 50% women
•HCV viral load -- 4 million IU/ml
The decline in HCV levels was faster among participants who received combination therapy immediately rather than delaying combination therapy. Viral suppression was similar in groups C, D, E and F.
Adding ribavirin did not accelerate the decline of HCV viral load.
After four weeks of experimental therapy, 100% of genotype 1 participants had undetectable levels of HCV. The equivalent figure for genotype 2 and3 participants was 91%.
Two participants stopped returning to the study clinic for unknown reason(s). Their last blood samples at weeks 12 and 24 respectively were undetectable.
One participant had his HCV levels rise after first suppressing them.
Another participant (in group B) had his HCV levels rise but doctors enhanced his therapy with interferon + ribavirin and his viral load returned to suppressed levels.
No deaths occurred.
Two participants left the study because of adverse events: one case of stroke (group C) and one case of fibromyalgia (group F). Researchers considered both incidents to be unrelated to the study.
Serious adverse events occurred in 10 patients, but only three cases were judged to be related to the study medicines and all occurred when patients accidentally took extra doses of daclastavir or GS-7977.
Adverse events in the study that were not related to the experimental treatments were as follows:
The most common laboratory abnormality was anemia and this occurred in participants who received ribavirin.
In summary, the all-oral regimen of two new drugs without ribavirin cured 100% of genotype 1 participants and at least 90% of genotype 2 and 3 participants.
These very promising findings require confirmation in a larger study.
Sulkowski M, Gardiner D, Lawitz E, et al. Potent viral suppression with the all oral combination of daclatasvir (NS5A inhibitor) and GS-7977 (nucleotide NS5B inhibitor), +/- ribavirin, in treatment-naive patients with chronic HCV genotype 1,2 or 3. In: Program and abstracts of the 47th annual meeting of the European Association for the Study of the Liver, 18-22 April 2012, Barcelona, Spain
"These very promising findings require confirmation in a larger study"...
This "larger study" is NOT going to happen UNLESS we take ACTION!!!
Well the results do sound very good, but this part makes me a little nervous.......... "Serious adverse events occurred in 10 patients, but only three cases were judged to be related to the study medicines and all occurred when patients accidentally took extra doses of daclastavir or GS-7977."
Now if my math is good there was only 88 people total? And though they say only 3 out of the 10 were judged to be caused by the meds that is still almost 4% of the people that had SERIOUS adverse events... Thats a high number that one should not overlook........ Just my honest opinion
Just to save myself some time (sick of googling...lol) how many are usually in phase II trials? There were just 88 in this trial, and I think we "know" a lot of them. Do most phase II trials have hundreds, thousands, or what is the usual average amount?
And can-do-man...not upset...more like frustrated. And neither was directed at you. My CAPS were more to emphasize my points.. and my questions... and I have always welcomed your opinions on any and all posts I make.
I agree with can do, statistically small sample but if representative then 4% is 4%. I think I may have doubled up on riba twice in 11 weeks. I need to change my methodology and practice more diligent recording.
I want to see next test and improvements. This is good news and now some problems have been identified and can be addressed. That is one reason they package the incivek in separate pia blister packs. That is why they preload syringes for peg.. All issues that can be addressed. This is a good thing.
If you have already signed, you can visit petition site for continued "updates & news links". We welcome any and all suggestions any of you might offer to assist in this effort.
Our latest communications have been with the World Hepatitis Alliance, as well as Dr. Scott Friedman who is the Director of both the Fibrosis Research Center and the Mount Sinai Alcoholic Liver Disease Research Center. We have also reached out to Dr. Nancy Reau, the Public Policy Chairman for the AASLD and are awaiting a response.
In the meanwhile, we encourage each of you to continue asking everyone you know to sign our petition. There are over 170 million people with HCV and if they know about this effort, they and their families will support it. Our job is to make sure they know about this.
I actually took a day off yesterday (for a bit) to celebrate hubby's 65th birthday. But am back today and still hard at work to pressure Gilead Sciences to move now with these trials. The CDC final recommendations that ALL "baby boomers" be tested for hepatitis C have created more interest in our efforts. I urge you all to continue looking for ways to capture national attention on this urgent situation and please keep asking everyone you know to sign and share our petition.
Met with doctor who participated in these trials and he said that all 88 people still remain UND!
Labor Day is an American federal holiday observed on the first Monday in September (September 3 in 2012) that celebrates the economic and social contributions of workers. The holiday is often regarded as a day of rest and parties.
However, this weekend I am asking each of you to “labor” by getting five more signatures for our petition. We currently have over 6500 signatures, but if each of you get five more that would put us over the 30,000 mark and we will be even closer to getting the cure for this disease. Then perhaps next Labor Day we can celebrate our victory over this disease with our family and friends. And, oh what a celebration that will be!
I have placed the link to the petition below so that you can either forward this to five more people, or copy and paste it on your Facebook page.
I wish each of you a safe and happy Labor Day weekend and want you all to know that we will not stop until we have VICTORY!