Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hi. I live in Cincinnati and there is actually supposed to be a special on tonight on PBS at 9 about that. It's scary and pretty eye opening. My daughter just started Periactin and I'm told it's safe but what is 'safe' anymore? It's like weighing the benefit over the possible risk. I use inhalers for asthma, if I didn't, I'd die, plain and simple, easy choice, but others aren't so cut and dry. Is it better to medicate to help her eat or let her suffer from malnutrition? I choose to medicate and I hope it's the right choice, I stand by it for now. > > Truth About the Drug Companies > > I spent the last week searching several months of postings and I was > surprised at the amount and different types of drugs given to our > kids. Maybe I'm sensitive over this subject in light of the > recent > scandal revolving around Merck's super drug Vioxx. The company > manipulated and/or suppressed negative clinical test results that > showed this anti-inflammatory drug caused heart disease. Estimates > indicate that it may have resulted in 55,000 deaths over the past 5 > years. It would be foolish on our part to ignore the possibility of > a similar scandal involving drugs given to RSS kids. The whole > mess with Merck raises ethical questions when it comes to the > accuracy of clinical trials for testing the safety and long-term > adverse affects. Were the clinical tests on GH, Lupron, etc. > conducted in a proper manner, were the test results altered? > > After reading Marcia Angell's newly released book The Truth About > the Drug Companies, I have to question the ethical nature of the > drug companies and sadly to say that of many doctors. Angell should > know the inside story, for the past 20 years she was the editor-in- > chief of The New England Journal of Medicine and now is a member of > Harvard Medical School's Department of Social Medicine. Time > Magazine named her one of the twenty-five most influential people in > America. > > By Angell's account, the current slide toward corruption of clinical > research coincided with the passage of the Bayh-Dole Act of 1980 > when a new set of laws permitted and encouraged universities to > patent discoveries from research sponsored by the NIH. Research paid > for by the public to serve the public instantly became private, and > a product that could be sold. Unfortunately, this was the time > period when GH was first clinically tested. > > Angell tells of the high-priced junkets offered to doctors, > basically given as educational opportunities that seem to constitute > little more than bribes. She tells of doctors who tampered with > tests results and others with gross conflicts of interest that were > hidden from the public. The prognosis for reform is a grim one, > Angell indicates, due to the massive cash and lobbying efforts of > drug companies. Additionally, the FDA which is suppose to be the > watch dog for the industry, now gets " user fees " from drug > companies > which represents a substantial part of the FDA budget. In fact, > it's more than half the budget for the Center for Disease > Evaluation > and Research, which is responsible for approving new drugs. One FDA > drug safety reviewer, Dr Graham, told a Congressional panel > this past week that the federal drug regulators were " virtually > incapable of protecting America. " > > Based on Angell's analysis, the drug companies are now primarily > a > marketing machine that sells drugs of questionable benefit. This > industry uses its wealth and power to influence every institution > that might stand in its way, including the US Congress, the FDA, > academic medical centers, and the medical profession itself. The > drug companies are rigging clinical trails to make their products > better than they are and covering up any truly independent damaging > research. > > With my kid's health at stake, this fiasco makes me angry. This > is > a great way of introducing myself to the list, and now would like to > listen to other parents' perspectives. > > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hi Jill, Welcome to our group. I hope we can help you with any questions you have about children with RSS. I read your message an I agree that the drug companies are only interested in profits. They are now and always have been very good at marketing drugs. Large drug companies will take every shortcut they can to get drugs to the market, even if it means skimping on the reseach. The thing that alarms me the most is almost nonexistent research done on medications that are primarily used by children. I can only describe it as frightnening. With that said, however, the vast majority of the medications we give our children have been used for long periods of time and have shown to work more often than not. However, we must still be careful before giving anything to our children or even taking it ourselves. I'm afraid that all we can do for now is to be informed consumers, especially before we give any medication to our children and to write our senators and congressmen/congresswomen to change the laws to better protect us all. As far as Angell's book goes, I believe (my opinion) it is based on flawed research. A claim that she uses against the drug companies. I regard this as one of those books written in such a manner to frighten as many people as possible using only the most alarming facts and leaving out many of the actual benefits provide by these companies. Still she does have some merit to her claims. Hopefully, her book will stir enough people to action to change the current system. However, I fear not. Thanks for bringing such an important topic to our attention. I think this will generate quite a lively discussion. Ken M > > Truth About the Drug Companies > > I spent the last week searching several months of postings and I was > surprised at the amount and different types of drugs given to our > kids. Maybe I'm sensitive over this subject in light of the > recent > scandal revolving around Merck's super drug Vioxx. The company > manipulated and/or suppressed negative clinical test results that > showed this anti-inflammatory drug caused heart disease. Estimates > indicate that it may have resulted in 55,000 deaths over the past 5 > years. It would be foolish on our part to ignore the possibility of > a similar scandal involving drugs given to RSS kids. The whole > mess with Merck raises ethical questions when it comes to the > accuracy of clinical trials for testing the safety and long-term > adverse affects. Were the clinical tests on GH, Lupron, etc. > conducted in a proper manner, were the test results altered? > > After reading Marcia Angell's newly released book The Truth About > the Drug Companies, I have to question the ethical nature of the > drug companies and sadly to say that of many doctors. Angell should > know the inside story, for the past 20 years she was the editor-in- > chief of The New England Journal of Medicine and now is a member of > Harvard Medical School's Department of Social Medicine. Time > Magazine named her one of the twenty-five most influential people in > America. > > By Angell's account, the current slide toward corruption of clinical > research coincided with the passage of the Bayh-Dole Act of 1980 > when a new set of laws permitted and encouraged universities to > patent discoveries from research sponsored by the NIH. Research paid > for by the public to serve the public instantly became private, and > a product that could be sold. Unfortunately, this was the time > period when GH was first clinically tested. > > Angell tells of the high-priced junkets offered to doctors, > basically given as educational opportunities that seem to constitute > little more than bribes. She tells of doctors who tampered with > tests results and others with gross conflicts of interest that were > hidden from the public. The prognosis for reform is a grim one, > Angell indicates, due to the massive cash and lobbying efforts of > drug companies. Additionally, the FDA which is suppose to be the > watch dog for the industry, now gets " user fees " from drug > companies > which represents a substantial part of the FDA budget. In fact, > it's more than half the budget for the Center for Disease > Evaluation > and Research, which is responsible for approving new drugs. One FDA > drug safety reviewer, Dr Graham, told a Congressional panel > this past week that the federal drug regulators were " virtually > incapable of protecting America. " > > Based on Angell's analysis, the drug companies are now primarily > a > marketing machine that sells drugs of questionable benefit. This > industry uses its wealth and power to influence every institution > that might stand in its way, including the US Congress, the FDA, > academic medical centers, and the medical profession itself. The > drug companies are rigging clinical trails to make their products > better than they are and covering up any truly independent damaging > research. > > With my kid's health at stake, this fiasco makes me angry. This > is > a great way of introducing myself to the list, and now would like to > listen to other parents' perspectives. > > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hi Ken, Thanks for the welcome. From my personal experience it's my belief that Dr Angell is right on the mark and her credentials are unimpeachable from everything I have read about her. Always open to other points of view and I can certainly see your perspective. The primary drug used by most RSS children is GH which has been clinically tested for less than 20 years. While this may seem like a long period it really isn't since you are dealing mostly with children. Only a few who have been followed are now entering adulthood, RSS or otherwise. As they enter their late 20's and 30's the long term results, if any, will be identified even though there is some speculation currently. I will say however, the long term effects of drugs such as those used to delay puberty are well known, and in my opinion have scary side-effects. Jill > > > > Truth About the Drug Companies > > > > I spent the last week searching several months of postings and I > was > > surprised at the amount and different types of drugs given to our > > kids. Maybe I'm sensitive over this subject in light of the > > recent > > scandal revolving around Merck's super drug Vioxx. The company > > manipulated and/or suppressed negative clinical test results that > > showed this anti-inflammatory drug caused heart disease. Estimates > > indicate that it may have resulted in 55,000 deaths over the past 5 > > years. It would be foolish on our part to ignore the possibility > of > > a similar scandal involving drugs given to RSS kids. The whole > > mess with Merck raises ethical questions when it comes to the > > accuracy of clinical trials for testing the safety and long-term > > adverse affects. Were the clinical tests on GH, Lupron, etc. > > conducted in a proper manner, were the test results altered? > > > > After reading Marcia Angell's newly released book The Truth About > > the Drug Companies, I have to question the ethical nature of the > > drug companies and sadly to say that of many doctors. Angell > should > > know the inside story, for the past 20 years she was the editor- in- > > chief of The New England Journal of Medicine and now is a member of > > Harvard Medical School's Department of Social Medicine. Time > > Magazine named her one of the twenty-five most influential people > in > > America. > > > > By Angell's account, the current slide toward corruption of > clinical > > research coincided with the passage of the Bayh-Dole Act of 1980 > > when a new set of laws permitted and encouraged universities to > > patent discoveries from research sponsored by the NIH. Research > paid > > for by the public to serve the public instantly became private, and > > a product that could be sold. Unfortunately, this was the time > > period when GH was first clinically tested. > > > > Angell tells of the high-priced junkets offered to doctors, > > basically given as educational opportunities that seem to > constitute > > little more than bribes. She tells of doctors who tampered with > > tests results and others with gross conflicts of interest that were > > hidden from the public. The prognosis for reform is a grim one, > > Angell indicates, due to the massive cash and lobbying efforts of > > drug companies. Additionally, the FDA which is suppose to be the > > watch dog for the industry, now gets " user fees " from drug > > companies > > which represents a substantial part of the FDA budget. In fact, > > it's more than half the budget for the Center for Disease > > Evaluation > > and Research, which is responsible for approving new drugs. One > FDA > > drug safety reviewer, Dr Graham, told a Congressional panel > > this past week that the federal drug regulators were " virtually > > incapable of protecting America. " > > > > Based on Angell's analysis, the drug companies are now primarily > > a > > marketing machine that sells drugs of questionable benefit. This > > industry uses its wealth and power to influence every institution > > that might stand in its way, including the US Congress, the FDA, > > academic medical centers, and the medical profession itself. The > > drug companies are rigging clinical trails to make their products > > better than they are and covering up any truly independent damaging > > research. > > > > With my kid's health at stake, this fiasco makes me angry. This > > is > > a great way of introducing myself to the list, and now would like > to > > listen to other parents' perspectives. > > > > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hi Jill, I agree, growth hormone is a relatively new drug and its long term affects on anybody are not fully understood. One apparent side affect is that it may cause stupidity, especially in professional baseball players. Hopefully, this will investigated further. This condition may also be caused by the promise of large sums of money for doing virtually nothing at all. Anyway, thanks for the info. Ken M > > > > > > Truth About the Drug Companies > > > > > > I spent the last week searching several months of postings and I > > was > > > surprised at the amount and different types of drugs given to > our > > > kids. Maybe I'm sensitive over this subject in light of the > > > recent > > > scandal revolving around Merck's super drug Vioxx. The company > > > manipulated and/or suppressed negative clinical test results > that > > > showed this anti-inflammatory drug caused heart disease. > Estimates > > > indicate that it may have resulted in 55,000 deaths over the > past 5 > > > years. It would be foolish on our part to ignore the > possibility > > of > > > a similar scandal involving drugs given to RSS kids. The whole > > > mess with Merck raises ethical questions when it comes to the > > > accuracy of clinical trials for testing the safety and long- term > > > adverse affects. Were the clinical tests on GH, Lupron, etc. > > > conducted in a proper manner, were the test results altered? > > > > > > After reading Marcia Angell's newly released book The Truth > About > > > the Drug Companies, I have to question the ethical nature of the > > > drug companies and sadly to say that of many doctors. Angell > > should > > > know the inside story, for the past 20 years she was the editor- > in- > > > chief of The New England Journal of Medicine and now is a member > of > > > Harvard Medical School's Department of Social Medicine. Time > > > Magazine named her one of the twenty-five most influential > people > > in > > > America. > > > > > > By Angell's account, the current slide toward corruption of > > clinical > > > research coincided with the passage of the Bayh-Dole Act of 1980 > > > when a new set of laws permitted and encouraged universities to > > > patent discoveries from research sponsored by the NIH. Research > > paid > > > for by the public to serve the public instantly became private, > and > > > a product that could be sold. Unfortunately, this was the time > > > period when GH was first clinically tested. > > > > > > Angell tells of the high-priced junkets offered to doctors, > > > basically given as educational opportunities that seem to > > constitute > > > little more than bribes. She tells of doctors who tampered with > > > tests results and others with gross conflicts of interest that > were > > > hidden from the public. The prognosis for reform is a grim one, > > > Angell indicates, due to the massive cash and lobbying efforts > of > > > drug companies. Additionally, the FDA which is suppose to be > the > > > watch dog for the industry, now gets " user fees " from drug > > > companies > > > which represents a substantial part of the FDA budget. In fact, > > > it's more than half the budget for the Center for Disease > > > Evaluation > > > and Research, which is responsible for approving new drugs. One > > FDA > > > drug safety reviewer, Dr Graham, told a Congressional > panel > > > this past week that the federal drug regulators were " virtually > > > incapable of protecting America. " > > > > > > Based on Angell's analysis, the drug companies are now primarily > > > a > > > marketing machine that sells drugs of questionable benefit. > This > > > industry uses its wealth and power to influence every > institution > > > that might stand in its way, including the US Congress, the FDA, > > > academic medical centers, and the medical profession itself. > The > > > drug companies are rigging clinical trails to make their > products > > > better than they are and covering up any truly independent > damaging > > > research. > > > > > > With my kid's health at stake, this fiasco makes me angry. This > > > is > > > a great way of introducing myself to the list, and now would > like > > to > > > listen to other parents' perspectives. > > > > > > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Ken, You are very wise and perceptive...... Jill > > > > > > > > Truth About the Drug Companies > > > > > > > > I spent the last week searching several months of postings and > I > > > was > > > > surprised at the amount and different types of drugs given to > > our > > > > kids. Maybe I'm sensitive over this subject in light of the > > > > recent > > > > scandal revolving around Merck's super drug Vioxx. The company > > > > manipulated and/or suppressed negative clinical test results > > that > > > > showed this anti-inflammatory drug caused heart disease. > > Estimates > > > > indicate that it may have resulted in 55,000 deaths over the > > past 5 > > > > years. It would be foolish on our part to ignore the > > possibility > > > of > > > > a similar scandal involving drugs given to RSS kids. The > whole > > > > mess with Merck raises ethical questions when it comes to the > > > > accuracy of clinical trials for testing the safety and long- > term > > > > adverse affects. Were the clinical tests on GH, Lupron, etc. > > > > conducted in a proper manner, were the test results altered? > > > > > > > > After reading Marcia Angell's newly released book The Truth > > About > > > > the Drug Companies, I have to question the ethical nature of > the > > > > drug companies and sadly to say that of many doctors. Angell > > > should > > > > know the inside story, for the past 20 years she was the editor- > > in- > > > > chief of The New England Journal of Medicine and now is a > member > > of > > > > Harvard Medical School's Department of Social Medicine. Time > > > > Magazine named her one of the twenty-five most influential > > people > > > in > > > > America. > > > > > > > > By Angell's account, the current slide toward corruption of > > > clinical > > > > research coincided with the passage of the Bayh-Dole Act of > 1980 > > > > when a new set of laws permitted and encouraged universities to > > > > patent discoveries from research sponsored by the NIH. Research > > > paid > > > > for by the public to serve the public instantly became private, > > and > > > > a product that could be sold. Unfortunately, this was the time > > > > period when GH was first clinically tested. > > > > > > > > Angell tells of the high-priced junkets offered to doctors, > > > > basically given as educational opportunities that seem to > > > constitute > > > > little more than bribes. She tells of doctors who tampered with > > > > tests results and others with gross conflicts of interest that > > were > > > > hidden from the public. The prognosis for reform is a grim > one, > > > > Angell indicates, due to the massive cash and lobbying efforts > > of > > > > drug companies. Additionally, the FDA which is suppose to be > > the > > > > watch dog for the industry, now gets " user fees " from drug > > > > companies > > > > which represents a substantial part of the FDA budget. In > fact, > > > > it's more than half the budget for the Center for Disease > > > > Evaluation > > > > and Research, which is responsible for approving new drugs. > One > > > FDA > > > > drug safety reviewer, Dr Graham, told a Congressional > > panel > > > > this past week that the federal drug regulators were " virtually > > > > incapable of protecting America. " > > > > > > > > Based on Angell's analysis, the drug companies are now primarily > > > > a > > > > marketing machine that sells drugs of questionable benefit. > > This > > > > industry uses its wealth and power to influence every > > institution > > > > that might stand in its way, including the US Congress, the > FDA, > > > > academic medical centers, and the medical profession itself. > > The > > > > drug companies are rigging clinical trails to make their > > products > > > > better than they are and covering up any truly independent > > damaging > > > > research. > > > > > > > > With my kid's health at stake, this fiasco makes me angry. This > > > > is > > > > a great way of introducing myself to the list, and now would > > like > > > to > > > > listen to other parents' perspectives. > > > > > > > > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 , Thanks for the heads up on PBS, not sure its on in our area. I can relate with your position. Jill > > > > Truth About the Drug Companies > > > > I spent the last week searching several months of postings and I > was > > surprised at the amount and different types of drugs given to our > > kids. Maybe I'm sensitive over this subject in light of the > > recent > > scandal revolving around Merck's super drug Vioxx. The company > > manipulated and/or suppressed negative clinical test results that > > showed this anti-inflammatory drug caused heart disease. Estimates > > indicate that it may have resulted in 55,000 deaths over the past 5 > > years. It would be foolish on our part to ignore the possibility > of > > a similar scandal involving drugs given to RSS kids. The whole > > mess with Merck raises ethical questions when it comes to the > > accuracy of clinical trials for testing the safety and long-term > > adverse affects. Were the clinical tests on GH, Lupron, etc. > > conducted in a proper manner, were the test results altered? > > > > After reading Marcia Angell's newly released book The Truth About > > the Drug Companies, I have to question the ethical nature of the > > drug companies and sadly to say that of many doctors. Angell > should > > know the inside story, for the past 20 years she was the editor- in- > > chief of The New England Journal of Medicine and now is a member of > > Harvard Medical School's Department of Social Medicine. Time > > Magazine named her one of the twenty-five most influential people > in > > America. > > > > By Angell's account, the current slide toward corruption of > clinical > > research coincided with the passage of the Bayh-Dole Act of 1980 > > when a new set of laws permitted and encouraged universities to > > patent discoveries from research sponsored by the NIH. Research > paid > > for by the public to serve the public instantly became private, and > > a product that could be sold. Unfortunately, this was the time > > period when GH was first clinically tested. > > > > Angell tells of the high-priced junkets offered to doctors, > > basically given as educational opportunities that seem to > constitute > > little more than bribes. She tells of doctors who tampered with > > tests results and others with gross conflicts of interest that were > > hidden from the public. The prognosis for reform is a grim one, > > Angell indicates, due to the massive cash and lobbying efforts of > > drug companies. Additionally, the FDA which is suppose to be the > > watch dog for the industry, now gets " user fees " from drug > > companies > > which represents a substantial part of the FDA budget. In fact, > > it's more than half the budget for the Center for Disease > > Evaluation > > and Research, which is responsible for approving new drugs. One > FDA > > drug safety reviewer, Dr Graham, told a Congressional panel > > this past week that the federal drug regulators were " virtually > > incapable of protecting America. " > > > > Based on Angell's analysis, the drug companies are now primarily > > a > > marketing machine that sells drugs of questionable benefit. This > > industry uses its wealth and power to influence every institution > > that might stand in its way, including the US Congress, the FDA, > > academic medical centers, and the medical profession itself. The > > drug companies are rigging clinical trails to make their products > > better than they are and covering up any truly independent damaging > > research. > > > > With my kid's health at stake, this fiasco makes me angry. This > > is > > a great way of introducing myself to the list, and now would like > to > > listen to other parents' perspectives. > > > > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 jill please tell me what you know about the potential side effects of GH. I have to make the decision for my 3 year old son. Also, why are you so upset that you no longer want to be apart of the group? Did I miss something? Also how old is your child? Are they on any meds? Re: Truth About the Drug Companies > > > Hi Ken, > > Thanks for the welcome. From my personal experience it's my > belief > that Dr Angell is right on the mark and her credentials are > unimpeachable from everything I have read about her. Always open to > other points of view and I can certainly see your perspective. > > The primary drug used by most RSS children is GH which has been > clinically tested for less than 20 years. While this may seem like > a long period it really isn't since you are dealing mostly with > children. Only a few who have been followed are now entering > adulthood, RSS or otherwise. As they enter their late 20's and > 30's > the long term results, if any, will be identified even though there > is some speculation currently. I will say however, the long term > effects of drugs such as those used to delay puberty are well known, > and in my opinion have scary side-effects. > > Jill > > > > > > > > Truth About the Drug Companies > > > > > > I spent the last week searching several months of postings and I > > was > > > surprised at the amount and different types of drugs given to > our > > > kids. Maybe I'm sensitive over this subject in light of the > > > recent > > > scandal revolving around Merck's super drug Vioxx. The company > > > manipulated and/or suppressed negative clinical test results > that > > > showed this anti-inflammatory drug caused heart disease. > Estimates > > > indicate that it may have resulted in 55,000 deaths over the > past 5 > > > years. It would be foolish on our part to ignore the > possibility > > of > > > a similar scandal involving drugs given to RSS kids. The whole > > > mess with Merck raises ethical questions when it comes to the > > > accuracy of clinical trials for testing the safety and long-term > > > adverse affects. Were the clinical tests on GH, Lupron, etc. > > > conducted in a proper manner, were the test results altered? > > > > > > After reading Marcia Angell's newly released book The Truth > About > > > the Drug Companies, I have to question the ethical nature of the > > > drug companies and sadly to say that of many doctors. Angell > > should > > > know the inside story, for the past 20 years she was the editor- > in- > > > chief of The New England Journal of Medicine and now is a member > of > > > Harvard Medical School's Department of Social Medicine. Time > > > Magazine named her one of the twenty-five most influential > people > > in > > > America. > > > > > > By Angell's account, the current slide toward corruption of > > clinical > > > research coincided with the passage of the Bayh-Dole Act of 1980 > > > when a new set of laws permitted and encouraged universities to > > > patent discoveries from research sponsored by the NIH. Research > > paid > > > for by the public to serve the public instantly became private, > and > > > a product that could be sold. Unfortunately, this was the time > > > period when GH was first clinically tested. > > > > > > Angell tells of the high-priced junkets offered to doctors, > > > basically given as educational opportunities that seem to > > constitute > > > little more than bribes. She tells of doctors who tampered with > > > tests results and others with gross conflicts of interest that > were > > > hidden from the public. The prognosis for reform is a grim one, > > > Angell indicates, due to the massive cash and lobbying efforts > of > > > drug companies. Additionally, the FDA which is suppose to be > the > > > watch dog for the industry, now gets " user fees " from drug > > > companies > > > which represents a substantial part of the FDA budget. In fact, > > > it's more than half the budget for the Center for Disease > > > Evaluation > > > and Research, which is responsible for approving new drugs. One > > FDA > > > drug safety reviewer, Dr Graham, told a Congressional > panel > > > this past week that the federal drug regulators were " virtually > > > incapable of protecting America. " > > > > > > Based on Angell's analysis, the drug companies are now primarily > > > a > > > marketing machine that sells drugs of questionable benefit. > This > > > industry uses its wealth and power to influence every > institution > > > that might stand in its way, including the US Congress, the FDA, > > > academic medical centers, and the medical profession itself. > The > > > drug companies are rigging clinical trails to make their > products > > > better than they are and covering up any truly independent > damaging > > > research. > > > > > > With my kid's health at stake, this fiasco makes me angry. This > > > is > > > a great way of introducing myself to the list, and now would > like > > to > > > listen to other parents' perspectives. > > > > > > Jill > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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