Aa
a medical breakthrough of sorts
thanks to all of you for all your support of late,....
I got a great present yesterday, good news on a needful change.
We are a political family, amongst other things.
My family member is pushing a bill through the Oregon congress to make insurance companies in this state test routinely for Hep-C.
this will mean folks will get diagnosed quicker, docs cannot ignore testing anymore as it will become mandatory....and insurances will have to pay for the routines tests AND for the cures now available, before the viruses have time to get any more resistant.
Now that there is help, folks need to be diagnosed earlier and hence more will be saved.
a few years back I pushed for legal rights to litigate against university hospitals, and we then won and changed the law (before which botched and/or permanently disabled through malpractice and/or negligence patients had no recourse in our State protected hospital, even though it was the most profitable hospital in Oregon, it had total legal protection). No more.
anyway, hoping testing for HCV will mean curing, and no one being treated dismissively or left for 30-40 years with a disease they don't know is killing them.
Boy one more thing to give thanks for!!!!!!!!!
I got a great present yesterday, good news on a needful change.
We are a political family, amongst other things.
My family member is pushing a bill through the Oregon congress to make insurance companies in this state test routinely for Hep-C.
this will mean folks will get diagnosed quicker, docs cannot ignore testing anymore as it will become mandatory....and insurances will have to pay for the routines tests AND for the cures now available, before the viruses have time to get any more resistant.
Now that there is help, folks need to be diagnosed earlier and hence more will be saved.
a few years back I pushed for legal rights to litigate against university hospitals, and we then won and changed the law (before which botched and/or permanently disabled through malpractice and/or negligence patients had no recourse in our State protected hospital, even though it was the most profitable hospital in Oregon, it had total legal protection). No more.
anyway, hoping testing for HCV will mean curing, and no one being treated dismissively or left for 30-40 years with a disease they don't know is killing them.
Boy one more thing to give thanks for!!!!!!!!!
"I think the greater question is why do I feel like I'm always on the nighttime meds. : )))
LOL....just saw this ! me too really, the night time meds just make me care less about feeling that way : }
LL
one thing to consider is what's been done in England and here, all our top secret military and fortune 500 companies have moved their servers into WAY way underground missle silos...for reasons I'll leave you to figure out.
Another bottom line would be to mandate, legislate, that insurance companies that haven't been hacked already be forced to take these additional albeit wildly expensive precautions. The leak of your personal info is beyond what you want to know already. ( and as well as the CEO friend mentioned above, who has a 180 IQ, I also have a son working at Intel Corp in software for many years now, so I do know somewhat of what I speak).
Remind me to tell you the story of the Iridium spoof, if we ever do have coffee....won't start it in here or else I will get labeled whacko, but it's an interesting true story.
Another bottom line would be to mandate, legislate, that insurance companies that haven't been hacked already be forced to take these additional albeit wildly expensive precautions. The leak of your personal info is beyond what you want to know already. ( and as well as the CEO friend mentioned above, who has a 180 IQ, I also have a son working at Intel Corp in software for many years now, so I do know somewhat of what I speak).
Remind me to tell you the story of the Iridium spoof, if we ever do have coffee....won't start it in here or else I will get labeled whacko, but it's an interesting true story.
I think the greater question is why do I feel like I'm always on the nighttime meds. : )))
boy I love it when folks put their noggins together!!
My focus isn't on this threads info today (for obvious reasons i.e. mt bad news)
but I did want to address
Willy:
one thing, in Oregon at least, and I think in most states now, is prisoners are already mandatorily tested, to help stop the otherwise rampant, and we all know why) spread of HCV amonst prisoners.
The other thing though is it is also mandatory that every prisoner be given SOC and then some,
So in many ways they have better tx, more trials available for non-responders. and earlier detection than us poor shleps out here footing the bill for all their crimes and misdemeaners.
In fact, if you need treatment ASAP going to jail is one sure way to get it!!!!
Willy, if this thing were NOT treatable, I would agreed with your privacy concerns.
Except that I have one friend, who spent over 20 years in military intelligence, 20 more as CEO of a couple Blue Chip companies and owned a major computer company you would recognize if I said the name, and is still regularly shmoozing and conversing with our generals on a first name basis. Our privacy, to be blunt, is a myth.
It kind of reminds me though, of the same idea as with our phone/internet privacy issues,
at one point does the greater good, of stopping terrorism and plotting for instance, outweigh the public privacy concerns. (someone will hate this analogy, but the point is the same).
I think my big concern is the mutation and what lack of attention may mean.
Even if our continent is not "the first to go" so to speak here, as AIDS was in Africa, (and this is debateable since USA has the largest number of type 1a, the most virulent so who knows), the possibility still exists for a wildly mutant strain, especially after adapting for thousands of years, and now becoming drug resistant.
p.s (this bug is not a product of the sixties, it has been transferring around since the first man cut out the heart after battle of another man, that's my guess.) the difference is now we know it's there, which is good, but we also are throwing strong drugs at it which could make it stronger.
Just saying, we can make corn grow 3 times bigger and stronger and sweeter in just a few seasons,
we can produce insects immune to DDT or things more toxic than ever imaginable, so eventually some virus could do what the plague did and wipe out half a country...or several continents, and especially if it turns out that the way the virus spreads can also change or adapt.....and what, we will proudly go to our deaths rather allow a strong defense because we want privacy??
LAdy Lauri,
boy I'm so glad to hear you agree there. I don't think most of understand, whether we are at a Veterans hospital as was Willy's concern, or privately insured elsewhere, or whereever, we are already all in data bases somewhere, and the chances of keeping any of these things "private" for protection purposes is so far down the road to gone that we might as well be thinking in terms of next general step in the right directions.
After all, if the general public cannot be tested "on principal" but are simultaneously being asked to foot the bill for expensive treatments for others while they cannot even get routine screening covered if they want it ....and they are therefore presenting in much more latter stages of illness....then something is wrong with this equation and needs to change.
My focus isn't on this threads info today (for obvious reasons i.e. mt bad news)
but I did want to address
Willy:
one thing, in Oregon at least, and I think in most states now, is prisoners are already mandatorily tested, to help stop the otherwise rampant, and we all know why) spread of HCV amonst prisoners.
The other thing though is it is also mandatory that every prisoner be given SOC and then some,
So in many ways they have better tx, more trials available for non-responders. and earlier detection than us poor shleps out here footing the bill for all their crimes and misdemeaners.
In fact, if you need treatment ASAP going to jail is one sure way to get it!!!!
Willy, if this thing were NOT treatable, I would agreed with your privacy concerns.
Except that I have one friend, who spent over 20 years in military intelligence, 20 more as CEO of a couple Blue Chip companies and owned a major computer company you would recognize if I said the name, and is still regularly shmoozing and conversing with our generals on a first name basis. Our privacy, to be blunt, is a myth.
It kind of reminds me though, of the same idea as with our phone/internet privacy issues,
at one point does the greater good, of stopping terrorism and plotting for instance, outweigh the public privacy concerns. (someone will hate this analogy, but the point is the same).
I think my big concern is the mutation and what lack of attention may mean.
Even if our continent is not "the first to go" so to speak here, as AIDS was in Africa, (and this is debateable since USA has the largest number of type 1a, the most virulent so who knows), the possibility still exists for a wildly mutant strain, especially after adapting for thousands of years, and now becoming drug resistant.
p.s (this bug is not a product of the sixties, it has been transferring around since the first man cut out the heart after battle of another man, that's my guess.) the difference is now we know it's there, which is good, but we also are throwing strong drugs at it which could make it stronger.
Just saying, we can make corn grow 3 times bigger and stronger and sweeter in just a few seasons,
we can produce insects immune to DDT or things more toxic than ever imaginable, so eventually some virus could do what the plague did and wipe out half a country...or several continents, and especially if it turns out that the way the virus spreads can also change or adapt.....and what, we will proudly go to our deaths rather allow a strong defense because we want privacy??
LAdy Lauri,
boy I'm so glad to hear you agree there. I don't think most of understand, whether we are at a Veterans hospital as was Willy's concern, or privately insured elsewhere, or whereever, we are already all in data bases somewhere, and the chances of keeping any of these things "private" for protection purposes is so far down the road to gone that we might as well be thinking in terms of next general step in the right directions.
After all, if the general public cannot be tested "on principal" but are simultaneously being asked to foot the bill for expensive treatments for others while they cannot even get routine screening covered if they want it ....and they are therefore presenting in much more latter stages of illness....then something is wrong with this equation and needs to change.
H*ll of a post, topic, conversation and WHY do I always see these after I have taken 'night time' meds??
While agreeing with some points on all said, I am not for mandatory anything unless it is for proper and fair health care for all!!
-------------------------------------------
Willy..........."I would like to see more attempts to educate those infected about HCV. I would also like to see more attempts to educate some of our doctors about the disease and it's treatment."
--------------------------------------------
I would add to that ...."educate those infected" ...AND John Q Public. (sure you knew that:}
MANY, MANY of us have 'walked around for 20-30 years' with this because of misdiagnosis, lack of the Dr.s knowledge to check, etc. Myself included. Had I been more ‘aware’ of Hep C, I would have asked for the test LONG ago. So those 2 things alone are huge in this, without getting into all the political aspects, questions ……(as my brain can’t do it right now!)
-----------------------------------------------------------
merrybe..............."the idea Willy is not to give insurance more power, but to remove the veto power they currently have, which makes docs even screening those who want to be screened an non-covered item."
Long over due along with many things concerning how they operate, benefits to their office, etc. but would mandatory testing force the insurance company to pay? And yes, we do need to get more vocal.
....................................................................
willy...........(I'm guessing that the SVR rate could soon be 75-80% across the board) will clear the virus. The numbers of those infected should drop-------I believe that in a matter of 3 years the virus will become 75% curable. In 10 years it might become almost completely curable.
----------------------------------------------------------------------
Along with a vaccine. And that .....I could possibly be for 'mandatory', as in adding to childs shots. In Fl. vaccines for A & B are now required in school.
Interesting post, LOT of points brought up on both sides and keep reading thru and seeing more! It does stretch far, from your points on the Vets, to the prisons to educating the DOCTORS ( one of my pet peeves) to re-hauling the entire system and on. I will have to re-read in AM , minus the sleep meds and 2 Ribas!
Good reading ! LL
While agreeing with some points on all said, I am not for mandatory anything unless it is for proper and fair health care for all!!
-------------------------------------------
Willy..........."I would like to see more attempts to educate those infected about HCV. I would also like to see more attempts to educate some of our doctors about the disease and it's treatment."
--------------------------------------------
I would add to that ...."educate those infected" ...AND John Q Public. (sure you knew that:}
MANY, MANY of us have 'walked around for 20-30 years' with this because of misdiagnosis, lack of the Dr.s knowledge to check, etc. Myself included. Had I been more ‘aware’ of Hep C, I would have asked for the test LONG ago. So those 2 things alone are huge in this, without getting into all the political aspects, questions ……(as my brain can’t do it right now!)
-----------------------------------------------------------
merrybe..............."the idea Willy is not to give insurance more power, but to remove the veto power they currently have, which makes docs even screening those who want to be screened an non-covered item."
Long over due along with many things concerning how they operate, benefits to their office, etc. but would mandatory testing force the insurance company to pay? And yes, we do need to get more vocal.
....................................................................
willy...........(I'm guessing that the SVR rate could soon be 75-80% across the board) will clear the virus. The numbers of those infected should drop-------I believe that in a matter of 3 years the virus will become 75% curable. In 10 years it might become almost completely curable.
----------------------------------------------------------------------
Along with a vaccine. And that .....I could possibly be for 'mandatory', as in adding to childs shots. In Fl. vaccines for A & B are now required in school.
Interesting post, LOT of points brought up on both sides and keep reading thru and seeing more! It does stretch far, from your points on the Vets, to the prisons to educating the DOCTORS ( one of my pet peeves) to re-hauling the entire system and on. I will have to re-read in AM , minus the sleep meds and 2 Ribas!
Good reading ! LL
Thanks for the article. I wonder if there is a way that one could provide a link to the legislation? From reading the article it would appear that I may be on the same side of the legislation. If so, I may have misinterpreted some things.
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You wrote; "My family member is pushing a bill through the Oregon congress to make insurance companies in this state test routinely for Hep-C. "
-----------------------------------------------------------------------------------------------------------------------------
I guess for me I wonder how or why the mechanism is the insurance companies and how our rights and privacy of our medical records are protected. I can't really express an opinion since I don't know what provisions were addressed in the bill. All that I can express are some concerns. I know the HIV/AIDS infected were quite concerned when mandatory testing bills were introduced. There is a function of this testing which I presume also concerns right to privacy of our medical results and so that part of the bill would be of interest to me as well.
No doubt the The Hepatitis C Caring Ambassadors Program has put a lot of energy and research into this and I'm presuming they have done a good job. I really can't agree or disagree without reading the legislation, much less from reading a relative few sentances here. Even then.... because some bills are quite long it might not be easy to read and understand.
I'd still like to understand it better and perhaps I can find something thru searches on line about the "caring ambassadors".
Since at least 2/3rds of us are still undiagnosed finding those people and getting them diagnosed and aware about HCV and it's treatments will save lives and should help prevent further transmission of the virus. Most of us are readily able to take some measures (such as to stop drinking and reduce our use of N-SAIDS) to improve our lifestyles as well as take measures to reduce transmission risk. If diagnosed this can be done at little or no cost.
I would like to see more attempts to educate those infected about HCV. I would also like to see more attempts to educate some of our doctors about the disease and it's treatment.
The issue about how to treat those infected could also be part of this bill. You are no doubt aware that even amoungst heppers we do not always agree on certain aspects of the disease and its treatment. "To treat or watch and wait" is one topic which has been debated over and over on this forum and others. I wonder how one would legislate a bill based on the dynamics of HCV treatment? One of the hot buttons I would imagine might be refusing to treat people who had previously failed. Equally "hot" might be refusing people who want to treat based on wanting them to wait for better treatments which appear to be around the corner. I might naturally decide to make that choice.... to wait..... but IF I was told by some agency that I HAD to wait I'd probably go ballistic. : )
Lots of questions.....
Thanks for bringing it to the board.
best,
Willy
---------------------------------------------------------------------------------------------------------------------------
You wrote; "My family member is pushing a bill through the Oregon congress to make insurance companies in this state test routinely for Hep-C. "
-----------------------------------------------------------------------------------------------------------------------------
I guess for me I wonder how or why the mechanism is the insurance companies and how our rights and privacy of our medical records are protected. I can't really express an opinion since I don't know what provisions were addressed in the bill. All that I can express are some concerns. I know the HIV/AIDS infected were quite concerned when mandatory testing bills were introduced. There is a function of this testing which I presume also concerns right to privacy of our medical results and so that part of the bill would be of interest to me as well.
No doubt the The Hepatitis C Caring Ambassadors Program has put a lot of energy and research into this and I'm presuming they have done a good job. I really can't agree or disagree without reading the legislation, much less from reading a relative few sentances here. Even then.... because some bills are quite long it might not be easy to read and understand.
I'd still like to understand it better and perhaps I can find something thru searches on line about the "caring ambassadors".
Since at least 2/3rds of us are still undiagnosed finding those people and getting them diagnosed and aware about HCV and it's treatments will save lives and should help prevent further transmission of the virus. Most of us are readily able to take some measures (such as to stop drinking and reduce our use of N-SAIDS) to improve our lifestyles as well as take measures to reduce transmission risk. If diagnosed this can be done at little or no cost.
I would like to see more attempts to educate those infected about HCV. I would also like to see more attempts to educate some of our doctors about the disease and it's treatment.
The issue about how to treat those infected could also be part of this bill. You are no doubt aware that even amoungst heppers we do not always agree on certain aspects of the disease and its treatment. "To treat or watch and wait" is one topic which has been debated over and over on this forum and others. I wonder how one would legislate a bill based on the dynamics of HCV treatment? One of the hot buttons I would imagine might be refusing to treat people who had previously failed. Equally "hot" might be refusing people who want to treat based on wanting them to wait for better treatments which appear to be around the corner. I might naturally decide to make that choice.... to wait..... but IF I was told by some agency that I HAD to wait I'd probably go ballistic. : )
Lots of questions.....
Thanks for bringing it to the board.
best,
Willy
this thread will get passed along to the powers that be so all thinking is welcome here.
the idea Willy is not to give insurance more power, but to remove the veto power they currently have, which makes docs even screening those who want to be screened an non-covered item.
but rest assures, insurance doesn't want changes either...as this next article proves.
Our "former DOCTOR" now govenor TED KILL-ungosky here has fought all attempt to help test or treat.
One who supposely wanted the poor to get health care, does not want them to get THiS health care.
I leave it to others to figure out why.
Hepatitis C Caring Ambassadors Program Dismayed by Oregon Governor Ted Kulongoski's Veto of Hepatitis C Legislation
OREGON CITY, Ore.--(BUSINESS WIRE)--July 20, 2005--The Hepatitis C Caring Ambassadors Program (HCCAP) announced that they had received notification on July 19th from the office of Oregon Governor Ted Kulongoski that he had vetoed hepatitis C legislation overwhelmingly passed by both the Oregon House and Senate. The legislation, HB 2480, would have prevented the Oregon Department of Human Services from restricting the drugs available to patients with hepatitis C covered by the Oregon Health Plan's fee-for service program. The bill was introduced in February 2005 at the request of the Hepatitis C Caring Ambassadors Program, a national nonprofit hepatitis C education and advocacy organization based in Oregon City, Oregon. Existing statutory limitations are already in place to prevent the Oregon Department of Human Services from restricting patient access to potentially life-saving drugs used to treat other life-threatening diseases including cancer, HIV/AIDS, and mental illnesses. Governor Kulongoski's veto of HB 2480 is particularly remarkable given the overwhelming support for the bill in the Oregon legislature. HB 2480 was approved with 41 ayes to 15 nays in the House, and 27 ayes to 1 nay in the Senate, demonstrating the strong bipartisan support for the bill. Governor Kulongoski reportedly began talk of vetoing HB 2480 in early February 2005, long before the bill reached the floor of the House or the Senate.
Hepatitis C is the most common chronic, blood-borne viral infection in the United States. Hepatitis C is the leading cause of chronic liver disease in the U.S., which now ranks among the top ten killers of adults over the age of 25 years. An estimated 3.9 to 4.5 million Americans have been infected with the hepatitis C virus including at least 64,000 Oregonians. The current methamphetamine crisis is likely to fuel an expanding hepatitis C epidemic in Oregon, a startling backdrop to Governor Kulongoski's veto of HB 2480.
Hepatitis C Caring Ambassadors Program Manager Lorren Sandt stated, "We are deeply distressed by Governor Kulongoski's use of his executive power to exercise his minority opposition to HB 2480. Like cancer and HIV/AIDS, chronic hepatitis C is a life-threatening illness. Medical treatment decisions to optimize care for illnesses that threaten both individual lives and the overall health and safety of the public should be made on a case-by-case basis by treating physicians, not a political bureaucracy. The Governor's veto of HB 2480 has dealt a blow to all Oregonians, not just those currently infected with hepatitis C. All people with hepatitis C should have access to the drugs that are most likely to be effective, regardless of the source of payment. But with the Governor's veto of HB 2480, hepatitis C patients receiving care under the Oregon Health Plan's fee-for-service program are now in a position to have to take whatever drugs the state deems they can have access to."
The Hepatitis C Caring Ambassadors Program will continue efforts to inform state and national policy-makers about the urgent personal and public health threats posed by the hepatitis C epidemic. Hepatitis C Caring Ambassadors Program Medical Director, Dr. Tina M. St. John, stated, "While we must respectfully agree to disagree with Governor Kulongoski on his veto of HB 2480, we will continue to work with the governor, the state legislature, and the Oregon Department of Human Service to ensure optimized care for all Oregonians with chronic hepatitis C, and to fully implement effective hepatitis C control and prevention."
there's newer legislation in congress now, but we still have the same "compassionate democrat".
rolleyes.....figure this one out and I'll give you a prize!!!!!
the idea Willy is not to give insurance more power, but to remove the veto power they currently have, which makes docs even screening those who want to be screened an non-covered item.
but rest assures, insurance doesn't want changes either...as this next article proves.
Our "former DOCTOR" now govenor TED KILL-ungosky here has fought all attempt to help test or treat.
One who supposely wanted the poor to get health care, does not want them to get THiS health care.
I leave it to others to figure out why.
Hepatitis C Caring Ambassadors Program Dismayed by Oregon Governor Ted Kulongoski's Veto of Hepatitis C Legislation
OREGON CITY, Ore.--(BUSINESS WIRE)--July 20, 2005--The Hepatitis C Caring Ambassadors Program (HCCAP) announced that they had received notification on July 19th from the office of Oregon Governor Ted Kulongoski that he had vetoed hepatitis C legislation overwhelmingly passed by both the Oregon House and Senate. The legislation, HB 2480, would have prevented the Oregon Department of Human Services from restricting the drugs available to patients with hepatitis C covered by the Oregon Health Plan's fee-for service program. The bill was introduced in February 2005 at the request of the Hepatitis C Caring Ambassadors Program, a national nonprofit hepatitis C education and advocacy organization based in Oregon City, Oregon. Existing statutory limitations are already in place to prevent the Oregon Department of Human Services from restricting patient access to potentially life-saving drugs used to treat other life-threatening diseases including cancer, HIV/AIDS, and mental illnesses. Governor Kulongoski's veto of HB 2480 is particularly remarkable given the overwhelming support for the bill in the Oregon legislature. HB 2480 was approved with 41 ayes to 15 nays in the House, and 27 ayes to 1 nay in the Senate, demonstrating the strong bipartisan support for the bill. Governor Kulongoski reportedly began talk of vetoing HB 2480 in early February 2005, long before the bill reached the floor of the House or the Senate.
Hepatitis C is the most common chronic, blood-borne viral infection in the United States. Hepatitis C is the leading cause of chronic liver disease in the U.S., which now ranks among the top ten killers of adults over the age of 25 years. An estimated 3.9 to 4.5 million Americans have been infected with the hepatitis C virus including at least 64,000 Oregonians. The current methamphetamine crisis is likely to fuel an expanding hepatitis C epidemic in Oregon, a startling backdrop to Governor Kulongoski's veto of HB 2480.
Hepatitis C Caring Ambassadors Program Manager Lorren Sandt stated, "We are deeply distressed by Governor Kulongoski's use of his executive power to exercise his minority opposition to HB 2480. Like cancer and HIV/AIDS, chronic hepatitis C is a life-threatening illness. Medical treatment decisions to optimize care for illnesses that threaten both individual lives and the overall health and safety of the public should be made on a case-by-case basis by treating physicians, not a political bureaucracy. The Governor's veto of HB 2480 has dealt a blow to all Oregonians, not just those currently infected with hepatitis C. All people with hepatitis C should have access to the drugs that are most likely to be effective, regardless of the source of payment. But with the Governor's veto of HB 2480, hepatitis C patients receiving care under the Oregon Health Plan's fee-for-service program are now in a position to have to take whatever drugs the state deems they can have access to."
The Hepatitis C Caring Ambassadors Program will continue efforts to inform state and national policy-makers about the urgent personal and public health threats posed by the hepatitis C epidemic. Hepatitis C Caring Ambassadors Program Medical Director, Dr. Tina M. St. John, stated, "While we must respectfully agree to disagree with Governor Kulongoski on his veto of HB 2480, we will continue to work with the governor, the state legislature, and the Oregon Department of Human Service to ensure optimized care for all Oregonians with chronic hepatitis C, and to fully implement effective hepatitis C control and prevention."
there's newer legislation in congress now, but we still have the same "compassionate democrat".
rolleyes.....figure this one out and I'll give you a prize!!!!!
Talk about political, Mandatory Testing? No way, Jose`
There is enough fascism taking over the country without forcing people to get stuck with needles.
I would support free testing and better ads to encourage people to do so.
How about educating doctors? I saw a dermotoligist several times about my red spot, spider thingy. They always said it was from too much sun. Nobody suggested it could be my liver.
There is enough fascism taking over the country without forcing people to get stuck with needles.
I would support free testing and better ads to encourage people to do so.
How about educating doctors? I saw a dermotoligist several times about my red spot, spider thingy. They always said it was from too much sun. Nobody suggested it could be my liver.
A few more points and I'll step off the soapbox.
I agree that we need to mobilize like the HIV movement did. We outnumber them at least 2 to 1 in the United States and yet we only recieve a fraction of the funding that HIV gets.
While you mention the risk of the virus mutating and spreading everywhere in a kind of Michael Crichtonesque manner....I think this could happen theoretically...or in a petrie dish but for many of us the virus is self limiting. I am not in much risk of transmitting the virus. I will soon treat when the new improved compounds are approved and myself and many others (I'm guessing that the SVR rate could soon be 75-80% across the board) will clear the virus. The numbers of those infected should drop. Your information about the ultrasonic cleaning is very interesting and to me sounds like a potential means of transmission. IF so.....I also believe that it will be determined quite quickly. I think HR's point about the virus is that we must treat it as we would something akin to some of the disease resistant forms of TB. We want to get a solid cure before frittering our many chances on ineffective treatments which could build up resistant forms that you are alluding to. IF so..... then it would stand to reason that we should perhaps wait to treat many people instead of pushing geno 1's through a treatment which is only today about 40% effective.
Instead of creating a new pool of people who will treat with this less effective treatment perhaps we should push for better insurance coverage, better education of our doctors on the subject of HCV, and approve a bit more funding for the VA and government agencies which commonly disallow treatments and disability for those who are diagnosed and need treatment right now.
Anyone who has been to a large city can always notice the biggest and tallest buildings. Quite often they are insurance companies. I don't quite follow why we are going to cut them in on this, much less trust them. These are people which gigantic salaries. The people on the bottom need the money...... not the people on the top of the food chain. I don't trust Halliburton to take care of judicious spending in Iraq. I don't trust the insurance companies to mete out justice to infected (spelled insurance liabilities) folks like you and me. Just what is the argument for using them instead of other methods? Now......if I were a lobbist for the insurance agencies I might try to get such legislation passed so as to increase the power of the insurance companies. I see this as making an already powerful lobby even more powerful. Our politicians are already funded by the lobbies. Would you not see this as increasing the clout and reach of insurance companies?
This is just stuff off the top of my head. I really don't know much about the subject but obviously I am interested and even opinionated. I may not be right however.
best,
Willy
Ok...... I'm off the soapbox and OFF to WORK.
I agree that we need to mobilize like the HIV movement did. We outnumber them at least 2 to 1 in the United States and yet we only recieve a fraction of the funding that HIV gets.
While you mention the risk of the virus mutating and spreading everywhere in a kind of Michael Crichtonesque manner....I think this could happen theoretically...or in a petrie dish but for many of us the virus is self limiting. I am not in much risk of transmitting the virus. I will soon treat when the new improved compounds are approved and myself and many others (I'm guessing that the SVR rate could soon be 75-80% across the board) will clear the virus. The numbers of those infected should drop. Your information about the ultrasonic cleaning is very interesting and to me sounds like a potential means of transmission. IF so.....I also believe that it will be determined quite quickly. I think HR's point about the virus is that we must treat it as we would something akin to some of the disease resistant forms of TB. We want to get a solid cure before frittering our many chances on ineffective treatments which could build up resistant forms that you are alluding to. IF so..... then it would stand to reason that we should perhaps wait to treat many people instead of pushing geno 1's through a treatment which is only today about 40% effective.
Instead of creating a new pool of people who will treat with this less effective treatment perhaps we should push for better insurance coverage, better education of our doctors on the subject of HCV, and approve a bit more funding for the VA and government agencies which commonly disallow treatments and disability for those who are diagnosed and need treatment right now.
Anyone who has been to a large city can always notice the biggest and tallest buildings. Quite often they are insurance companies. I don't quite follow why we are going to cut them in on this, much less trust them. These are people which gigantic salaries. The people on the bottom need the money...... not the people on the top of the food chain. I don't trust Halliburton to take care of judicious spending in Iraq. I don't trust the insurance companies to mete out justice to infected (spelled insurance liabilities) folks like you and me. Just what is the argument for using them instead of other methods? Now......if I were a lobbist for the insurance agencies I might try to get such legislation passed so as to increase the power of the insurance companies. I see this as making an already powerful lobby even more powerful. Our politicians are already funded by the lobbies. Would you not see this as increasing the clout and reach of insurance companies?
This is just stuff off the top of my head. I really don't know much about the subject but obviously I am interested and even opinionated. I may not be right however.
best,
Willy
Ok...... I'm off the soapbox and OFF to WORK.
Yup, I agree that there is a lot to think about, a lot that can be done. I guess that this issue for some people is 1) whether it needs to be legislated and 2) if legislated, how it shall be done?
As mentioned..... and to keep it out of the world wide community...it may be best to talk about the demographic of the USA and how it is best dealt with here since really that is what we may know the most about and ulimately have the most control over.
I'll mention again that I don't know where I sit on the issue but it would probably hinge on how this were effected. I'm really only throwing some rebuttal just to show you where you may hit some opposition.
To make it mandatory without some sort of parachute for people who end up testing positive could be a problem. Some people might prefer to think; "I'm afraid I am at risk due to military service, past drug experimentation, or past medical history..... but I don't feel that bad. IF I AM diagnosed I could lose my job, don't have insurance and therefore....I don't want to know, but even moreso...... I don't want ANYONE else to know".
I think that to make this work you might have to have some education....and you might need some sort of mechanisms to protect peoples anonymity...... and some sort of "carrot" so that if they are diagnosed positive...... they have some hope for a positive effect.
That positive effect for some may be a few years off. IF we truely want to help people in addition to simply diagnosing them we need to have in effect some sort of protection and treatment plan for them once they are diagnosed. I think that the diagnosis will be an easier "sell" once the SVR rate starts coming up.
I also think that the "sell" would be easier if there were actually some benefit for the people once diagosed they could get triaged into various programs for helping them get treatment.
I believe that not all vets have yet been diagnosed. The standard of treatment for Vets could quite also possibly be improved. It seems to me that as a group they have a much lower SVR rate than in the private sector. There are a variety of reasons for this but my point is that there may be room ....substantial room for improvement in their treatments. The only problem here...... is that we don't want to spend the money to provide better detection and treatment. We are spending lots of money on the front end....waging wars..... but precious little trickles down for those who have already served. VA's have faced budget reductions there have been a few (and finally) well publicised items in the news about this issue.
Many people who are positive for HCV and also spreading the virus are in prisons. Since this is a group of people who have reduced basic rights (having lost some of them due to breaking the law) they would seem to be a captive group that one could test. Once again....what will we do once we diagnose them?
This is a group that we really don't want to spend money on since we already are spending lots of money to incarcerate them we are reluctant to spend any more on them. We may even feel that maybe if they catch HCV or HIV from a tattoo needle in the pen that they may die...and decrease their surplus population. OF course, they end up infecting others whom they are housed with and of course...... their medical burden becomes the burden of the state.
What is the answer then? No one wants to hear it let alone reach into the wallets but it might be education programs, detection programs, needle exchange programs and treatment programs. My sense is that once again...... no one wants to spend the money. Mere detection is not enough.
Well then...... what of the population that we may care the most about then; the middle class? Many of us are still without basic insurance.. Many of us are denied continued coverage in the middle of treatments. Often insurance companies will not "pony up" for rescue drugs that we may need to successfully finish a treatment. They may not approve an extended treatment. The average person in the USA simply cannot afford a catastrophic medical event even when they have insurance. Over time..... their finances get whittled down, they get saddled with additional expenses (like not having their procrit or neupogen approved by the insurance company or HMO) until they end up losing their house or insurance or possibly having their dosage reduced and thereby an ineffective treatment.
I know people who have lost their jobs due to HCV disclosure. I know people who have been denied disability even though they are very ill with HCV symptoms. I know people who have lost their house while on treatment. My point is that simple detection is but a small part of the solution. I agree with you that it is important but it is simply a part of the solution.
I think I'll close this before I have to make it in two posts. I still throw a part of my support to the solution but as you can see there are areas that we must address if we are to get people diagnosed.
I am deliberately being a little cynical about the solution. There is no question that without overhauling the entire system that some people can have some benefit from detection. You and I agree on many points. My problem is that I want it all. : )
We have to find some sort of middle ground solution ...a starting point since an overhaul of the VA, the penal system, or socialized medicine is not in the near and foreseeable future. I think that is the real challenge here; how to wring out the most protection and treatment for people for the least amount of money.....because that is what I know we will want to spend.
best,
willy
As mentioned..... and to keep it out of the world wide community...it may be best to talk about the demographic of the USA and how it is best dealt with here since really that is what we may know the most about and ulimately have the most control over.
I'll mention again that I don't know where I sit on the issue but it would probably hinge on how this were effected. I'm really only throwing some rebuttal just to show you where you may hit some opposition.
To make it mandatory without some sort of parachute for people who end up testing positive could be a problem. Some people might prefer to think; "I'm afraid I am at risk due to military service, past drug experimentation, or past medical history..... but I don't feel that bad. IF I AM diagnosed I could lose my job, don't have insurance and therefore....I don't want to know, but even moreso...... I don't want ANYONE else to know".
I think that to make this work you might have to have some education....and you might need some sort of mechanisms to protect peoples anonymity...... and some sort of "carrot" so that if they are diagnosed positive...... they have some hope for a positive effect.
That positive effect for some may be a few years off. IF we truely want to help people in addition to simply diagnosing them we need to have in effect some sort of protection and treatment plan for them once they are diagnosed. I think that the diagnosis will be an easier "sell" once the SVR rate starts coming up.
I also think that the "sell" would be easier if there were actually some benefit for the people once diagosed they could get triaged into various programs for helping them get treatment.
I believe that not all vets have yet been diagnosed. The standard of treatment for Vets could quite also possibly be improved. It seems to me that as a group they have a much lower SVR rate than in the private sector. There are a variety of reasons for this but my point is that there may be room ....substantial room for improvement in their treatments. The only problem here...... is that we don't want to spend the money to provide better detection and treatment. We are spending lots of money on the front end....waging wars..... but precious little trickles down for those who have already served. VA's have faced budget reductions there have been a few (and finally) well publicised items in the news about this issue.
Many people who are positive for HCV and also spreading the virus are in prisons. Since this is a group of people who have reduced basic rights (having lost some of them due to breaking the law) they would seem to be a captive group that one could test. Once again....what will we do once we diagnose them?
This is a group that we really don't want to spend money on since we already are spending lots of money to incarcerate them we are reluctant to spend any more on them. We may even feel that maybe if they catch HCV or HIV from a tattoo needle in the pen that they may die...and decrease their surplus population. OF course, they end up infecting others whom they are housed with and of course...... their medical burden becomes the burden of the state.
What is the answer then? No one wants to hear it let alone reach into the wallets but it might be education programs, detection programs, needle exchange programs and treatment programs. My sense is that once again...... no one wants to spend the money. Mere detection is not enough.
Well then...... what of the population that we may care the most about then; the middle class? Many of us are still without basic insurance.. Many of us are denied continued coverage in the middle of treatments. Often insurance companies will not "pony up" for rescue drugs that we may need to successfully finish a treatment. They may not approve an extended treatment. The average person in the USA simply cannot afford a catastrophic medical event even when they have insurance. Over time..... their finances get whittled down, they get saddled with additional expenses (like not having their procrit or neupogen approved by the insurance company or HMO) until they end up losing their house or insurance or possibly having their dosage reduced and thereby an ineffective treatment.
I know people who have lost their jobs due to HCV disclosure. I know people who have been denied disability even though they are very ill with HCV symptoms. I know people who have lost their house while on treatment. My point is that simple detection is but a small part of the solution. I agree with you that it is important but it is simply a part of the solution.
I think I'll close this before I have to make it in two posts. I still throw a part of my support to the solution but as you can see there are areas that we must address if we are to get people diagnosed.
I am deliberately being a little cynical about the solution. There is no question that without overhauling the entire system that some people can have some benefit from detection. You and I agree on many points. My problem is that I want it all. : )
We have to find some sort of middle ground solution ...a starting point since an overhaul of the VA, the penal system, or socialized medicine is not in the near and foreseeable future. I think that is the real challenge here; how to wring out the most protection and treatment for people for the least amount of money.....because that is what I know we will want to spend.
best,
willy
the whole point is not to ask them to do it, it is to tell them to do it. to put it into the law!!!!
and now to protect our medical records simulataneously. But to test, and be willing to offer treatment to those wanting ir now.
the point is the cat is guarding the mice now....it has to change, you are more likely to get tested if you tell them you have had transfusuion prior to 92 and/or drug abuse....but why should one have to lie, exagerate etc just to get tested. Plus, then that goes down in records and effects your transplant chances, look, one in 20 is anemic, they test us for this....but one in 5 may have Hep, and they don't...whats wrong withthis picky dicture>
and now to protect our medical records simulataneously. But to test, and be willing to offer treatment to those wanting ir now.
the point is the cat is guarding the mice now....it has to change, you are more likely to get tested if you tell them you have had transfusuion prior to 92 and/or drug abuse....but why should one have to lie, exagerate etc just to get tested. Plus, then that goes down in records and effects your transplant chances, look, one in 20 is anemic, they test us for this....but one in 5 may have Hep, and they don't...whats wrong withthis picky dicture>
>>>>>>>>>yes that's obvious about the cure rate but I still know people who have lost jobs due to disclosing. Many people...many infected people may not wish to disclose or have testing mandated.
True Willy, the point is for the state to mandate testing across the board, and record privacy as well, in order to deal with an epidemic that could go either way,
It could phase out as all the transfused and/or other wise exposed before much was known die out, or it could outstrip every other virus and not go away but become more contagious…and again, as HR pointed out it is a retro/mutating virus so how long of a window we even have to treat and slam/stamp this out is debatable.
We have currently a couple thousand cold virus mutations, non curable, and we can only vaccinate for small amounts of flu strains….if HCV reaches those proportions you have a very different problem however because colds and flus pass in a few days, they don’t set about destroying vital organs and the entire immune system
So again, the need for more urgent attention is very much there.
You are correct, anonymity and returning to the main stream sound very great in theory, but that’s assuming a lot of variables in your best case scenario will actually happen. That may not prove out. More on this later.
Your numbers correction is duly noted. I’ve had this disease 6 months (that I’ve known of) 30-40 years probably, but in the 6 months since I’ve known, I’ve read a different ever escalating number each month new stats come out. Whether it is 170, 190, 0r 200 worldwide known cases does not change the fact that the cases unknown could be staggeringly more myriad.
Especially when you factor in the state of hospital/clinic sanitation in the 2/3 impoverish nations, the degree of shared needles there, and all the dental exposure now as well.
As to dental, the sound waves used to disrupt the plaque heat/vaporize the substances, which include both plaque, saliva and blood from each tooth cleaned. Similar to a microwave it heats up the products slightly while it burst molecules into smaller droplets, and this causes a steam, and that little burning smell you may have noticed when your teeth are scaled with the machine is the smell of the heated molecules.
Heating them also miniaturizes and as it creates this smoke, but there’s not enough heat to actually cook or kill the virus. Ergo, just repeating what my dentist told me, the concern now is, since every possible precaution has been taken for 20-30 years, since mid 80’s with the HIV news first and then HCV, why is it so many who are religious with their gloves, masks, goggles etc. etc why. are they still ending up with it, even those not knowingly treating any effected patients. Answer: because transmission is occurring.
Ergo the transmission via the miniaturized molecules was looked into and it is now protocol to reduce their risk of exposure by hand planning the teeth of all who are infected. Mind you this guy does not mind doing it…he was just grateful I told him, because that’s one less unnessessary risk to him and his staff. They will use the safer albeit more labor intensive process.
I’m assuming he would not be telling me this unless the research had been done to prove small inhaled exposure of blood could occur. Obviously we had a rather in depth conversation because I was concerned about spreading it, and so he took time to fill me in on the current thinking.
Yes, I have also experienced pre existing discrimination, the point is to stop that as well, and make no medical info available to employers in advance of hiring, just qualifications for the job, period.
The point needs to be the risk pool can be spread through legislation to all insurances and all the state health care systems, VA’s also; so that cost is built into the rates for everyone, much the way the risk of cancer, which kills a third of us eventually is already built in and factored in to what everyone ends up paying.
I think the main idea here is, if we are going to remain privatetized presumably because many smaller companies can be competitive and yet make a profit, and not get bogged down in the government behemoth bureaucracy that central government would create, that is no reason to say to insurance companies you do not have to cover or include certain types of sick people. They all need some regulation, just like banks/brokers/any company that will otherwise discriminate and/or bilk the public.
You are right about the stigma, but as the truth get’s out, that this may be as much the effect of unknowingly exposing folks medically or dentally as it is likely to be from some aberrant behavior I think that will slowly change.
After all, almost all hemophiliacs became positive for HIV or HCV, before testing. That means vast numbers of both caregivers and patients have been exposed, albeit perhaps the level of exposure being so small may help explain those 15% clearers we hear so much about. The body is more likely to develop enough antibody to a small exposure, like cleaning up some/blood or blood laced vomit than if one is exposed through factor K, plasma or whole blood transfusions.
The issue is, though we’ve cut back on transfusion exposure nobly, we have not addressed well sexual transmission or minor exposures. For instance, I did hospice care on several cancer patients in the 70’s. Projectile events are very hard to avoid entirely in these and nursing/hospice care situations. Add to that the things we haven’t yet learned, or are only just noticing, like the dental…then multiply these exposures world wide…along with yes increased sexual activity and drug experimentation,,,,,,and you can easily see how things could, just could, get out of hand and not decompress.
Why do you think they are testing right now a 90 day supply implant…would this be for the third world, where needles and refrigerated items will never be done soon enough to save a generation?
Ok you can wax Reganite with me anytime, I’ll be your huckleberry.
Of course profit motives will play a part.
I just see this whole idea as a head em off at the pass kind of stop gap in case a vaccine is 30 years away. I mean, how long have they been working on an AIDS vaccine, and they are not much closer. These little bugs are far more complex than 99% of us realize.
Who was it said, “rage, rage, against the dying of the light”. Well, maybe the HCV community needs to get a little vocal like the HIV community did!!!!
As to privacy, well heck, if everyone stays in the closet who will ever solitic change in proplrs thinking???
However I got this disease, be it when I tried drugs as a kid (right after my mom/granma did a murder suicide, and my dad dies of cancer, all in 2 years, I tried drugs a few times….it was the 60’s and I was very depressed by my whole family being wiped out……but all that stopped and I went on to do health care/hospice/and physical therapy….and then got plasma for surgical repairs…
In the end, it doesn’t matter nor should we have to apologise.
However I got it, however anybody got it…whether a mistake, or an exposure, I think the grace of God is wonderful in that we are all allowed mistakes in life. No one yet, thank God, says to medicine, don’t treat a guy who drinks, or a woman who smokes. We still try to treat their condition, bring relief, even a cure if possible. So to stigmatize one group, only because it’s the first group it was noticed in, (the needle freaks) makes little sense.
Ton’s who never did any such thing still have this disease.
Hopefully education will eventually address all this.
Lots of random thought huh Willy??
Lot’s to consider.
Mary
Sonar arosol droplets: Is that a demonstrated transmission vector? I've never heard of it.
Mandatory Testing: Should not be a function of Insurance IMHO. Doctors and patients should decide - insurance should pay. If testing is to be mandated - which I don't agree with - why use 'privately insured' as your selection criterion?
Pre-existing exclusions: Only apply to the previously uninsured, and only last a few months. No treatment for the condition during the wait period lifts the exclusion.
Mandatory Testing: Should not be a function of Insurance IMHO. Doctors and patients should decide - insurance should pay. If testing is to be mandated - which I don't agree with - why use 'privately insured' as your selection criterion?
Pre-existing exclusions: Only apply to the previously uninsured, and only last a few months. No treatment for the condition during the wait period lifts the exclusion.
I guess that I question making insurance companies the testing agency. Seems like they have the most to lose or gain thru this. I wouldn't ask the cat to guard the mice. Nor would I ask a company that has a finacial stake in this to do the testing.
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I'm in agreement. The public is becoming educated fast enough. I think the energy could be spent on educating doctors and not educating insurance companies.
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I'm in agreement. The public is becoming educated fast enough. I think the energy could be spent on educating doctors and not educating insurance companies.
First paragraph.... yes that's obvious about the cure rate but I still know people who have lost jobs due to disclosing. Many people...many infected people may not wish to disclose or have testing mandated.
Yes..... I agree that many lives could be saved. I generally see 160-190 million worldwide used in estimates as the world wide number of infected. Your credibility will be enhanced if you go with reliable and even conservative numbers when you convey stats.
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You wrote; "Right now the insurance companies have in place a "don't ask don't tell" policy which basically means, we won't test you, and so not knowing, we won't have to offer you a cure either...la la la….how nice for them!!
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I think that they don't have to pay now either. You've heard of pre-existing exclusions I presume. I guess that I question making insurance companies the testing agency. Seems like they have the most to lose or gain thru this. I wouldn't ask the cat to guard the mice. Nor would I ask a company that has a finacial stake in this to do the testing.
There are a number of vets who have HCV who still have not been tested. Could we start there? They also have guarenteed medical from the VA. The information would remain secure.
Likening this to infected children sounds a little like an emotional "sell" to me. First of all in the Estados Unidos most HCV infected are middle aged adults. Many of us even had an active hand in aquiring our infection. Further..... in just a few years I would assume that many of us will simply get treated and cured as new treatments are appoved. Our demographic will change quite rapidly in the next 5-10 years. I believe that in a matter of 3 years the virus will become 75% curable. In 10 years it might become almost completely curable. Many of us might prefer to simply drop back into the mainstream.
As a class of people the stigma might last longer than the actual virus.
Many people who are concerned with civil rights may also see this as a means that once instituted will be used to expand the testing of all sorts of other diseases or infirmities. I've got a feeling that the general populace will be all in favor of testing their neighbor...... but will bristle at the thought of anyone testing them or their kids. I think you may find that the HIV infected population may also not see this type of legislation as favorable to them.
At the risk of seeming like a Reganite...... economics may take care of this without government intervention. As soon as there is a better cure there will be "money to be made" in testing ones patients. That is....I'm talking about doctors diagnosing their patients so they can treat them. I think that testing will become routine without government or insurance company mandatory testing legislation. (OK...here comes the "set up" for the "don't test my patience" punchline)
These are just random thoughts I'm having and I'm just throwing them out there for you to ponder. I know very little about the issues, about insurance or about the legislation you are proposing. I'm just kind of playing devils advocate.
best,
willy
Yes..... I agree that many lives could be saved. I generally see 160-190 million worldwide used in estimates as the world wide number of infected. Your credibility will be enhanced if you go with reliable and even conservative numbers when you convey stats.
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You wrote; "Right now the insurance companies have in place a "don't ask don't tell" policy which basically means, we won't test you, and so not knowing, we won't have to offer you a cure either...la la la….how nice for them!!
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I think that they don't have to pay now either. You've heard of pre-existing exclusions I presume. I guess that I question making insurance companies the testing agency. Seems like they have the most to lose or gain thru this. I wouldn't ask the cat to guard the mice. Nor would I ask a company that has a finacial stake in this to do the testing.
There are a number of vets who have HCV who still have not been tested. Could we start there? They also have guarenteed medical from the VA. The information would remain secure.
Likening this to infected children sounds a little like an emotional "sell" to me. First of all in the Estados Unidos most HCV infected are middle aged adults. Many of us even had an active hand in aquiring our infection. Further..... in just a few years I would assume that many of us will simply get treated and cured as new treatments are appoved. Our demographic will change quite rapidly in the next 5-10 years. I believe that in a matter of 3 years the virus will become 75% curable. In 10 years it might become almost completely curable. Many of us might prefer to simply drop back into the mainstream.
As a class of people the stigma might last longer than the actual virus.
Many people who are concerned with civil rights may also see this as a means that once instituted will be used to expand the testing of all sorts of other diseases or infirmities. I've got a feeling that the general populace will be all in favor of testing their neighbor...... but will bristle at the thought of anyone testing them or their kids. I think you may find that the HIV infected population may also not see this type of legislation as favorable to them.
At the risk of seeming like a Reganite...... economics may take care of this without government intervention. As soon as there is a better cure there will be "money to be made" in testing ones patients. That is....I'm talking about doctors diagnosing their patients so they can treat them. I think that testing will become routine without government or insurance company mandatory testing legislation. (OK...here comes the "set up" for the "don't test my patience" punchline)
These are just random thoughts I'm having and I'm just throwing them out there for you to ponder. I know very little about the issues, about insurance or about the legislation you are proposing. I'm just kind of playing devils advocate.
best,
willy
Yes you are right about the dilemma,
It’s the same as for HIV except that the cure rate is 90% for some genotypes, 50 % for some others. HIV is still not considered curable however, despite all the attention and research it has received people are still looking at dozens of years on maintenance drugs not a year and in many cases you are done. This is a major distinction.
Still the lives that can potentially be saved here, not to mention the productivity that's currently being lost just when many folks are at the height of their expertise and experience, don’t they need consideration both??
I guess it'd be almost akin to leaving polio alone, had they had a test to screen and/or treat/cure, and instead chosen to leave families to deal with lifelong crippling, what would we have said to that.
Right now the insurance companies have in place a "don't ask don't tell" policy which basically means, we won't test you, and so not knowing, we won't have to offer you a cure either...la la la….how nice for them!!
But, since unlike HIV there are now people walking around 7 years post TX that are still UND...the time to call SOC unreliable experimental or not viable has come and gone. Anytime the success rate goes to 50% or better people deserve a shot at that!!!!!!
That’s still half the death rate, right?
It’s basically no different than say...... testing children for leukemia when many of those blood diseases are now 90% curable. If we knew one in five children would have it, would we not then test all children??
My best guesstimate, since we are at 200,000 million worldwide and counting, without having tested the general populace, only those who present symptomatically.... is there could be as many as 5 times that, or a billion world wide cases, maybe even more ,
(considering how many 3rd world counties have no testing and how this spreads by blood as HIV who really knows)
Once they do test, the same countries with 70% infected with HIV may have staggering rates of HCV as well. Anyway, whether it’s one fifth or one tenth the worlds populace, that’s still HUGE!!!!!!
How deep the rabbit hole goes Willy, and how to more than Band-Aid this serious tragedy is the real question. Anyway the numbers do make the disease the largest epidemic in the recorded world history. So something needs to give.
I'm not convinced socializing medicine will solve or treat all these cases, it may cause as more problems than it solves ...but there may need to be a concerted nation wide effort I think, as there was with AIDS, to not just accelerate research but also to mandate insurance to accept a certain percentile of the ill into their "pool" simultaneously just as they did mandate car insurance companies do years ago, before they allowed "the records" to influence the rates. This would temporally escalate rates overall true enough, yet we must weigh the benefit.
Benefit's like: it would also allow a recovery of an average of 60-65 percent of the HCV work force that we currently will otherwise all pay for as they deteriorate to catastrophic stages of disease. Some will lose 20 plus productive years otherwise.
And, Either way, whether people are insured or not, most will end up in a system, be it state/university or private health care, that we all end up paying for in the end anyway.
So the benefit long term to test and treat while this is still curable, while this virus hasn't mutated beyond all hope....as HR has intimated it might one day do.....well this far outweighs the hurdles we will have to pass in the process of fighting it.
Although you are correct there are many hurdles yet to get over.
I'm just grateful that this will set a precedent for the states to each take a good hard look at this.
Now, here’s a good one:
I just learned from my dentist the other day that the dental profession has the highest rates now of HCV. I told my dentist as Soon as I knew I had it...but most, they told me, do not tell them; and of course no one can tell them what they do not know.
The trouble there is that, if you do not tell them, they clean your teeth with sonar and that basically turns blood into an aerosol...and so they end up breathing minute HCV or HIV particles. (knowing this makes me wonder why they don’t just junk the sonar, but the old hand cleaning is more labor intensive hard on wrists. Still, I would junk it.
Something, bottom-line, has to change as it is unfair to health care professional to make them risk their lives unnecessarily. I mean, everyone wants blood to be tested before they are transfused with it right? Same basic idea.
Why should those who work on our bodies not be afforded the most information about our state of health so they can use all precaution? Just one more example in a long list of why much, very much, needs to change.
Thanks for your comments.
Mary B
It’s the same as for HIV except that the cure rate is 90% for some genotypes, 50 % for some others. HIV is still not considered curable however, despite all the attention and research it has received people are still looking at dozens of years on maintenance drugs not a year and in many cases you are done. This is a major distinction.
Still the lives that can potentially be saved here, not to mention the productivity that's currently being lost just when many folks are at the height of their expertise and experience, don’t they need consideration both??
I guess it'd be almost akin to leaving polio alone, had they had a test to screen and/or treat/cure, and instead chosen to leave families to deal with lifelong crippling, what would we have said to that.
Right now the insurance companies have in place a "don't ask don't tell" policy which basically means, we won't test you, and so not knowing, we won't have to offer you a cure either...la la la….how nice for them!!
But, since unlike HIV there are now people walking around 7 years post TX that are still UND...the time to call SOC unreliable experimental or not viable has come and gone. Anytime the success rate goes to 50% or better people deserve a shot at that!!!!!!
That’s still half the death rate, right?
It’s basically no different than say...... testing children for leukemia when many of those blood diseases are now 90% curable. If we knew one in five children would have it, would we not then test all children??
My best guesstimate, since we are at 200,000 million worldwide and counting, without having tested the general populace, only those who present symptomatically.... is there could be as many as 5 times that, or a billion world wide cases, maybe even more ,
(considering how many 3rd world counties have no testing and how this spreads by blood as HIV who really knows)
Once they do test, the same countries with 70% infected with HIV may have staggering rates of HCV as well. Anyway, whether it’s one fifth or one tenth the worlds populace, that’s still HUGE!!!!!!
How deep the rabbit hole goes Willy, and how to more than Band-Aid this serious tragedy is the real question. Anyway the numbers do make the disease the largest epidemic in the recorded world history. So something needs to give.
I'm not convinced socializing medicine will solve or treat all these cases, it may cause as more problems than it solves ...but there may need to be a concerted nation wide effort I think, as there was with AIDS, to not just accelerate research but also to mandate insurance to accept a certain percentile of the ill into their "pool" simultaneously just as they did mandate car insurance companies do years ago, before they allowed "the records" to influence the rates. This would temporally escalate rates overall true enough, yet we must weigh the benefit.
Benefit's like: it would also allow a recovery of an average of 60-65 percent of the HCV work force that we currently will otherwise all pay for as they deteriorate to catastrophic stages of disease. Some will lose 20 plus productive years otherwise.
And, Either way, whether people are insured or not, most will end up in a system, be it state/university or private health care, that we all end up paying for in the end anyway.
So the benefit long term to test and treat while this is still curable, while this virus hasn't mutated beyond all hope....as HR has intimated it might one day do.....well this far outweighs the hurdles we will have to pass in the process of fighting it.
Although you are correct there are many hurdles yet to get over.
I'm just grateful that this will set a precedent for the states to each take a good hard look at this.
Now, here’s a good one:
I just learned from my dentist the other day that the dental profession has the highest rates now of HCV. I told my dentist as Soon as I knew I had it...but most, they told me, do not tell them; and of course no one can tell them what they do not know.
The trouble there is that, if you do not tell them, they clean your teeth with sonar and that basically turns blood into an aerosol...and so they end up breathing minute HCV or HIV particles. (knowing this makes me wonder why they don’t just junk the sonar, but the old hand cleaning is more labor intensive hard on wrists. Still, I would junk it.
Something, bottom-line, has to change as it is unfair to health care professional to make them risk their lives unnecessarily. I mean, everyone wants blood to be tested before they are transfused with it right? Same basic idea.
Why should those who work on our bodies not be afforded the most information about our state of health so they can use all precaution? Just one more example in a long list of why much, very much, needs to change.
Thanks for your comments.
Mary B
I'd love to see discussion on this so I can better understand both sides. I know if we were talking about HIV you would see some disagreement.
IF I understand the premise there HIV infected individuals might be less inclined to have that law since it would end up "labeling" them and possibly leaving them open to discrimination, job loss, refusal of insurance, etc.
I was origionally not refused but rather refused insurance at a quoted rate when my liver enzymes were high. I paid the new higher price but I got the insurance. I'm concerned that some people might end up with no insurance if diagnosis were enforced. I rather think that I would have been refused insurance if I had been diagnosed with HCV by the insurance company.
I am totally in agreement with you that somehow we must find the other at least 2/3'rds of us that are yet undiagnosed with this virus.
Good topic and one that I have no real opinion on yet but am looking for arguments and information both pro and con.
By the way.....I wholeheartedly agree that we need to be able to sue for bad medical treatment whether private or state owned.
Thanks,
Willy
IF I understand the premise there HIV infected individuals might be less inclined to have that law since it would end up "labeling" them and possibly leaving them open to discrimination, job loss, refusal of insurance, etc.
I was origionally not refused but rather refused insurance at a quoted rate when my liver enzymes were high. I paid the new higher price but I got the insurance. I'm concerned that some people might end up with no insurance if diagnosis were enforced. I rather think that I would have been refused insurance if I had been diagnosed with HCV by the insurance company.
I am totally in agreement with you that somehow we must find the other at least 2/3'rds of us that are yet undiagnosed with this virus.
Good topic and one that I have no real opinion on yet but am looking for arguments and information both pro and con.
By the way.....I wholeheartedly agree that we need to be able to sue for bad medical treatment whether private or state owned.
Thanks,
Willy
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