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IMPORTANT! Hep C petition again
Here is the link for the Hep C petition again. I've noticed that a lot of new people have joined recently that may not have signed yet. Please take the time to do it if you haven't already...........
http://www.thepetitionsite.com/takeaction/703119152 please paste in your browser or re-type....
**ALSO, for those of us with Hep B, too......Roche just applied to the Feds to be able to use Pegasys for both hep C AND Hep B!!! Yah! No more Interferon only for those of us w/ B!
They just applied at the end of July. I'm assuming they've already done their tests/trials.......anyone know how long it'll take before it's approved? Maybe a compassionate doctor will give it to me for both my Heps now............???
http://www.thepetitionsite.com/takeaction/703119152 please paste in your browser or re-type....
**ALSO, for those of us with Hep B, too......Roche just applied to the Feds to be able to use Pegasys for both hep C AND Hep B!!! Yah! No more Interferon only for those of us w/ B!
They just applied at the end of July. I'm assuming they've already done their tests/trials.......anyone know how long it'll take before it's approved? Maybe a compassionate doctor will give it to me for both my Heps now............???
Margaret Mead the anthropologist once said something like this;
Never believe that a small group of determined people can not make a change,in fact that is all that ever has.
Keep up the good work!
Never believe that a small group of determined people can not make a change,in fact that is all that ever has.
Keep up the good work!
AIDS Popularity Leads to Unfair Disease Funding
One heath care crisis that desperately requires attention is the biased manner in which disease research funds are being allocated by our government?s National Institutes of Health (NIH). Are you aware that AIDS is receiving the lion?s share of government research dollars, yet it doesn?t even come close to killing as many Americans as diseases like cardiovascular disease and diabetes?
In fact, there are 16 diseases that are killing millions more people in this country than AIDS annually. The fact that AIDS is receiving such a ridiculously high percentage of research dollars from the NIH in comparison to these other diseases is the reason I am bringing this to your attention today.
I am a proud member of The FAIR Foundation ? which stands for "Fair Allocations in Research." This may be the first time you have heard of this organization, but it is far from the last. Along with myself, there are thousands of others from Maine to Hawaii who are coming together through the FAIR Foundation to alert America on the need for change in the funding policies at the NIH.
FAIR?s goal is to convince the NIH that a disease?s mortality rate should be given emphasis in determining allocations, and other secondary factors should be utilized to insure diseases that cause great suffering but have low mortality rates will also receive significantly increased funding. Funds should not be allocated based on Hollywood popularity or political correctness.
The 2004 Congressional Services Report revealed shocking statistics denoting 18 billion taxpayer dollars are going to AIDS in 2004. The numbers are especially disturbing considering deaths from AIDS have plummeted 96% in California's newly infected patients and well over 80% in the entire country, while the death toll of other diseases continues to rise. That?s why it is time to redirect funding to diseases that are more deserving, and currently receiving billions less, than AIDS.
Please endorse The FAIR Foundation?s efforts to put an end to AIDS favoritism and recommend that all citizens join them in demanding NIH research funding that is fair and equitable for all diseases.
One heath care crisis that desperately requires attention is the biased manner in which disease research funds are being allocated by our government?s National Institutes of Health (NIH). Are you aware that AIDS is receiving the lion?s share of government research dollars, yet it doesn?t even come close to killing as many Americans as diseases like cardiovascular disease and diabetes?
In fact, there are 16 diseases that are killing millions more people in this country than AIDS annually. The fact that AIDS is receiving such a ridiculously high percentage of research dollars from the NIH in comparison to these other diseases is the reason I am bringing this to your attention today.
I am a proud member of The FAIR Foundation ? which stands for "Fair Allocations in Research." This may be the first time you have heard of this organization, but it is far from the last. Along with myself, there are thousands of others from Maine to Hawaii who are coming together through the FAIR Foundation to alert America on the need for change in the funding policies at the NIH.
FAIR?s goal is to convince the NIH that a disease?s mortality rate should be given emphasis in determining allocations, and other secondary factors should be utilized to insure diseases that cause great suffering but have low mortality rates will also receive significantly increased funding. Funds should not be allocated based on Hollywood popularity or political correctness.
The 2004 Congressional Services Report revealed shocking statistics denoting 18 billion taxpayer dollars are going to AIDS in 2004. The numbers are especially disturbing considering deaths from AIDS have plummeted 96% in California's newly infected patients and well over 80% in the entire country, while the death toll of other diseases continues to rise. That?s why it is time to redirect funding to diseases that are more deserving, and currently receiving billions less, than AIDS.
Please endorse The FAIR Foundation?s efforts to put an end to AIDS favoritism and recommend that all citizens join them in demanding NIH research funding that is fair and equitable for all diseases.
Gracias Amiga,
I read the about the report. Muy interasante. That certainly explains it. Thank you. Hey! What about them boots. Thought I forgot huh? Nunca, hamas! Digame pronto por favor.
Luis
HEY! How are you holding up nowadays? How is your husband? still in ICU? I hope your sides are on vacation or pernanent leave.
be well
be well
I'm not great with quotes but it's something to the effect -- even if the source is dirty money, the out come is for something good
I actually just read today that Hep B is 5 times more infectious than HIV...........yikes! I know that most people here have Hep C, but this is a Hep forum, and some of us also have B.
Your posting about Gates's liver near cracked me up! Thanks for a point of light in an otherwise very dark day. Couch
unico, the idea of you wishing and trying to do good and mobilize to donate blood was absolutely admirable....however, maybe i can explain why it was so strongly oppossed...
the 'Krever Inquiry' (judge krever)that was held several years back in canada, and was ongoing for years, found that Health Canada, along with a montreal 'blood broker' as well as one in toronto, were purchasing contaminated blood products from prisioners in an Arkansas Prison for many years, this later was found to be a substaintially high level of contaminated blood, (including HIV and HEP C,) that was being transfused to hemophiliacs in canada....this was a huge scandal and the inquiry still has Canadian Health officals reeling.....so i am thinking that while your idea was definately a noble one...it was at that time right at the height of the inquiry between goverments, so was probably a very touchy subject....
you can read more about this by doing any google search of canada, and 'tainted blood' or 'Krever Inquiry', sorry i don't know how to do links
kimmy
the 'Krever Inquiry' (judge krever)that was held several years back in canada, and was ongoing for years, found that Health Canada, along with a montreal 'blood broker' as well as one in toronto, were purchasing contaminated blood products from prisioners in an Arkansas Prison for many years, this later was found to be a substaintially high level of contaminated blood, (including HIV and HEP C,) that was being transfused to hemophiliacs in canada....this was a huge scandal and the inquiry still has Canadian Health officals reeling.....so i am thinking that while your idea was definately a noble one...it was at that time right at the height of the inquiry between goverments, so was probably a very touchy subject....
you can read more about this by doing any google search of canada, and 'tainted blood' or 'Krever Inquiry', sorry i don't know how to do links
kimmy
I missread it Hep Competition. So i signed 5000 times. Thought i was gonna win Mr Gates liver. I do get confused these days.
SH
SH
I have pondered this petition question since being diagnosed. Unfortunately it is my nature to rise up make a stink about something I believe is wrong. I was in prison during 9/11. Afterwards, I went to the authorities because I wanted start a blood drive for the victims. I was told under no uncertain terms to drop it. If I had pushed it bad things would happen. The resistance to my request was too strong, too vehement. I knew then there was a more sinister reason. I was sure of it. I began to research why prisoners were not allowed to donate blood. It was purposely a dead end. Now I know 30% or more of the prison population is hepc positive. If this fact was widely known inside, and it is not, the powers to be within the prison community would cause problems. They are many who are very organized, and formidable. I tell this story because I do not trust the Government, not even a tiny, winy bit. The extent of the HEPC crisis is being covered up and suppress. I do not think anyone would disagree with that. So when someone suggests to write a Gov
Tom, it is great to see you here. Yes, we got lucky here as we have for a long, long time. It can't last forever, but I sure do appreciate each time we escape. This one got so close I realized that even though I thought I was prepared for hurricane season (for those who don't know, hurricane season is from June 1 - Nov 30) there are things I want do do differently. For instance, I bought a generator today.
I remember when you posted the Bill Gates petition some time back. I didn't make a comment then but felt I wanted to do so this time. Yes, it is everyone's responsibility to help those less fortunate, but as you pointed out, Gates has done much for others. If I am not mistaken, he is the largest single philanthropist in the country. We need to get heard in DC, however, not Redmond.
I have written to several government officials, including Surgeon General Richard Carmona, and Doctor Julie Gerberding, director of the CDC. Until we get this on the national and international radar we will continue to get squat. Unfortunately, we can probably never get the attention that AIDS gets, primarily because HCV is not as deadly when untreated (please don't anyone feel like they have to send me statistics. I am aware of them. Fact is, 80% of those with HCV will not ever become ill enough to die from it) and by the time any symptoms appear, the infected person has had the disease for 20 to 30 years. It is also nowhere nearly as infectious. The vast majority of current cases are old ones. The blood supply is much safer, the military no longer uses the old type of injectables, etc. We aren't a danger to the population at large, ergo no need to pay attention to us.
Personally, I am not a committed activist to our cause. Most of us aren't, I think. I am somewhat ashamed of that but that does not change my nature. However, I will and do donate to the cause and will show up if someone will organize a march on Washington. I promise.
I remember when you posted the Bill Gates petition some time back. I didn't make a comment then but felt I wanted to do so this time. Yes, it is everyone's responsibility to help those less fortunate, but as you pointed out, Gates has done much for others. If I am not mistaken, he is the largest single philanthropist in the country. We need to get heard in DC, however, not Redmond.
I have written to several government officials, including Surgeon General Richard Carmona, and Doctor Julie Gerberding, director of the CDC. Until we get this on the national and international radar we will continue to get squat. Unfortunately, we can probably never get the attention that AIDS gets, primarily because HCV is not as deadly when untreated (please don't anyone feel like they have to send me statistics. I am aware of them. Fact is, 80% of those with HCV will not ever become ill enough to die from it) and by the time any symptoms appear, the infected person has had the disease for 20 to 30 years. It is also nowhere nearly as infectious. The vast majority of current cases are old ones. The blood supply is much safer, the military no longer uses the old type of injectables, etc. We aren't a danger to the population at large, ergo no need to pay attention to us.
Personally, I am not a committed activist to our cause. Most of us aren't, I think. I am somewhat ashamed of that but that does not change my nature. However, I will and do donate to the cause and will show up if someone will organize a march on Washington. I promise.
Whoops....that link is: <a href="http://www.hepfi.org/good/mission.htm">Hepatitis Foundation International</a>
Hava a great day!
Hava a great day!
Galen:
Though I posted that link here originally a while back, I tend to agree with you on one hand. If the petition could be directed to lawmakers, researchers, in position to allocate funds to research then that could perhaps be more effective. But seems as though somebody set up the petition out out of frustration. It might just be a huge waste of time and a naive attempt at trying to get some attention to this disease. Just one person trying to make a difference. Not everyone is expected to sign it, or is being pressured, since we all have our own ideas of what is effective or not, or might question the true nature of a web based petition (which was addressed in a previous post by beffuddled, if I remember correctly). If the petition really gets to him, then who knows what might happen. Or not.
On other hand, Bill Gates has donated billions to charities and AIDS research on an international basis. His own foundation, for example, donated millions towards vaccinating children agains hep B. Wether he needs the writeoffs, is stroking his ego, or genuinely cards is up for debate.
In any case, there are several organizations trying to make a differece. <a href="tp://www.hepfi.org/good/mission.htm">Hepatitis Foundation International</a> is a solid organization involved in Hep C research (I like the fact that they are an international organazation, sicne Hep C has no boundaries.) Guess if we want to help on an individual basis, we could donate to this organization, or on of may others involved in HEP C advocacy. There are several of them. We all know the U.S. government in any case, is not putting much attention to Hep C research. Can't say for sure what other countries are doing.
Other than that, Galen, glad you survived the hurricane, and got away unscathed. What a mess!
Though I posted that link here originally a while back, I tend to agree with you on one hand. If the petition could be directed to lawmakers, researchers, in position to allocate funds to research then that could perhaps be more effective. But seems as though somebody set up the petition out out of frustration. It might just be a huge waste of time and a naive attempt at trying to get some attention to this disease. Just one person trying to make a difference. Not everyone is expected to sign it, or is being pressured, since we all have our own ideas of what is effective or not, or might question the true nature of a web based petition (which was addressed in a previous post by beffuddled, if I remember correctly). If the petition really gets to him, then who knows what might happen. Or not.
On other hand, Bill Gates has donated billions to charities and AIDS research on an international basis. His own foundation, for example, donated millions towards vaccinating children agains hep B. Wether he needs the writeoffs, is stroking his ego, or genuinely cards is up for debate.
In any case, there are several organizations trying to make a differece. <a href="tp://www.hepfi.org/good/mission.htm">Hepatitis Foundation International</a> is a solid organization involved in Hep C research (I like the fact that they are an international organazation, sicne Hep C has no boundaries.) Guess if we want to help on an individual basis, we could donate to this organization, or on of may others involved in HEP C advocacy. There are several of them. We all know the U.S. government in any case, is not putting much attention to Hep C research. Can't say for sure what other countries are doing.
Other than that, Galen, glad you survived the hurricane, and got away unscathed. What a mess!
You're wrong. It is his responsibility. It is all of our moral responsibility to help those who are less fortunate. If people who are better off don't help those who are, I don't even want to exist in this world. Besides, you don't get what you don't ask for. And, he helps out other causes, maybe he just doesn't know about our plight. And, if you really mean what you said, anyone can go to thepetitionsite to create a petition for free. Why don't you create one for the president? That would be fabulous!
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