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pathia
Guest
What part of “I’m at work right now” wasn’t seen? I do IT, thus I’m on the computer all day, it doesn’t take ‘hours’ to check a website.
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royal_archer
Guest
So you only post to these forums while you are at work? Not on your time?What part of “I’m at work right now” wasn’t seen? I do IT, thus I’m on the computer all day, it doesn’t take ‘hours’ to check a website.
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apromisemade
Guest
Starting a charity geared toward healthcare needs is rarely done for the reason that they are so difficult. Suggesting someone do something like that as a solution to their own health problems is rather stupid.How about with the hours spent here?
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royal_archer
Guest
HMMM, then why are there so many family based charities named after kids with a variety of ailments. Of course going it alone is much harder than trying to find others on the internet with simmilar conditions and working together to solve the problem.Starting a charity geared toward healthcare needs is rarely done for the reason that they are so difficult. Suggesting someone do something like that as a solution to their own health problems is rather stupid.
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apromisemade
Guest
Those are organizations that fund research, help people pay for treatment, raise awareness, etc. They don’t actually treat the patients of their disease last I checked. Someone who lacks the money to pay for real treatment of their illness is a different matter entirely, and starting a charity to fund other people when you are the one who is struggling to pay your own medical bills is kind of counter inuitive.HMMM, then why are there so many family based charities named after kids with a variety of ailments. Of course going it alone is much harder than trying to find others on the internet with simmilar conditions and working together to solve the problem.
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royal_archer
Guest
First you acknowledge they “help people pay for treatment” then you say “Someone who lacks the money to pay for real treatment of their illness is a different matter entirely,” was this a typo?Those are organizations that fund research, help people pay for treatment, raise awareness, etc. They don’t actually treat the patients of their disease last I checked. Someone who lacks the money to pay for real treatment of their illness is a different matter entirely, and starting a charity to fund other people when you are the one who is struggling to pay your own medical bills is kind of counter inuitive.
The founders of a charity determine where the money goes.
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pathia
Guest
Straying way off topic, but mostly yes. If I am posting at home, it’s when I’m in bed, waiting for the pain medications to kick in enough so I can try to relax. I never not hurt, but it does feel nice to have it reduced.So you only post to these forums while you are at work? Not on your time?
I’ve looked for years, I’ve found maybe 4-5people who kinda-sorta have conditions close enough to mine to be lumped together. I think I’m the only one in the US.HMMM, then why are there so many family based charities named after kids with a variety of ailments. Of course going it alone is much harder than trying to find others on the internet with simmilar conditions and working together to solve the problem.
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apromisemade
Guest
They’re not doctors, they don’t treat the illness. They can help people pay for treatment but it’s a coin flip on how much they might be able to contribute. Even the ones that do go so far as to help people pay are few and far between anyway. Most of them are intended for awareness, research, and social support. It would a rare family based charity indeed that would be able to raise enough money to pay for even a single surgery, let alone chemo or whatever for a multitude of people.First you acknowledge they “help people pay for treatment” then you say “Someone who lacks the money to pay for real treatment of their illness is a different matter entirely,” was this a typo?
The founders of a charity determine where the money goes.
And yes, this is in fact way off topic.
The point is when you consider how many people don’t have health insurance, and how much it costs to pay for even basic treatment out of pocket, there is really only so much charity can do. The system needs to be overhauled, big time, in order for lives and money to be saved. We essentially already have socialized medicine for the elderly and impoverished. Why not provide it, or at least something similar, to people who are working hard and getting by but not making so much money they can afford, say, $60,000 dollars for a simple disk replacement procedure?
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aspawloski4th
Guest
Or what ever it cost to remove my kidneystone 5 years ago. I had insurance back then, but don’t now. If I had that same problem now that I don’t have insurance that would be an interesting delemma. Loose everything or have a kidney quit. Not a very good choice. Loose everything means my wife looses it with me too, its not just me loosing. Hmm puting a disabled person out on the street good idea to some posting on this thread. In stead of worrying about the one or two pwople working the system, lets have medical do what is is suposed to do save lives and fix people up.They’re not doctors, they don’t treat the illness. They can help people pay for treatment but it’s a coin flip on how much they might be able to contribute. Even the ones that do go so far as to help people pay are few and far between anyway. Most of them are intended for awareness, research, and social support. It would a rare family based charity indeed that would be able to raise enough money to pay for even a single surgery, let alone chemo or whatever for a multitude of people.
And yes, this is in fact way off topic.
The point is when you consider how many people don’t have health insurance, and how much it costs to pay for even basic treatment out of pocket, there is really only so much charity can do. The system needs to be overhauled, big time, in order for lives and money to be saved. We essentially already have socialized medicine for the elderly and impoverished. Why not provide it, or at least something similar, to people who are working hard and getting by but not making so much money they can afford, say, $60,000 dollars for a simple disk replacement procedure?
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fultonfish
Guest
These places exist
stjude.org/stjude/v/index.jsp?vgnextoid=daf8fa2454e70110VgnVCM1000001e0215acRCRD&vgnextchannel=fdeb13c016118010VgnVCM1000000e2015acRCRD
tennesseeencyclopedia.net/imagegallery.php?EntryID=S080
St. Jude Children’s Research Hospital.
stjude.org/stjude/v/index.jsp?vgnextoid=5fae1976d1e70110VgnVCM1000001e0215acRCRD&vgnextchannel=7dcb13c016118010VgnVCM1000000e2015acRCRD
stjude.org/stjude/v/index.jsp?vgnextoid=daf8fa2454e70110VgnVCM1000001e0215acRCRD&vgnextchannel=fdeb13c016118010VgnVCM1000000e2015acRCRD
tennesseeencyclopedia.net/imagegallery.php?EntryID=S080
St. Jude Children’s Research Hospital.
stjude.org/stjude/v/index.jsp?vgnextoid=5fae1976d1e70110VgnVCM1000001e0215acRCRD&vgnextchannel=7dcb13c016118010VgnVCM1000000e2015acRCRD
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fultonfish
Guest
These places exist and are founded and supported by people who want to help other people.
shrinershq.org/Hospitals/Main/
Another organization
shrinershq.org/Hospitals/Main/
Another organization
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fultonfish
Guest
rarediseases.org/
rarediseases.org/info/about.html
Mission Statement
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
What is A Rare Disorder?
A rare or “orphan” disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. For almost twenty years, NORD has served as the primary non-governmental clearinghouse for information on rare disorders. NORD also provides referrals support groups and other sources of assistance.
Our Sources of Funding
NORD is not a government agency. It is a non-profit, voluntary health agency that exists to serve rare-disease patients and their families. Our primary sources of funding are contributions, membership fees, and revenues from the sale of our products, such as our books and Rare Disease Database reports. Most of the money donated to NORD goes directly to programs and services. Copies of our annual report are available upon request.
Founded in 1983
NORD was established in 1983 by patients and families who worked together to get the Orphan Drug Act passed. This legislation provides financial incentives to encourage development of new treatments for rare diseases.
NORD Services and Programs
NORD provides information about diseases, referrals to patient organizations, research grants and fellowships, advocacy for the rare-disease community, and Medication Assistance Programs that help needy patients obtain certain drugs they could not otherwise afford.
rarediseases.org/info/about.html
Mission Statement
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
What is A Rare Disorder?
A rare or “orphan” disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. For almost twenty years, NORD has served as the primary non-governmental clearinghouse for information on rare disorders. NORD also provides referrals support groups and other sources of assistance.
Our Sources of Funding
NORD is not a government agency. It is a non-profit, voluntary health agency that exists to serve rare-disease patients and their families. Our primary sources of funding are contributions, membership fees, and revenues from the sale of our products, such as our books and Rare Disease Database reports. Most of the money donated to NORD goes directly to programs and services. Copies of our annual report are available upon request.
Founded in 1983
NORD was established in 1983 by patients and families who worked together to get the Orphan Drug Act passed. This legislation provides financial incentives to encourage development of new treatments for rare diseases.
NORD Services and Programs
NORD provides information about diseases, referrals to patient organizations, research grants and fellowships, advocacy for the rare-disease community, and Medication Assistance Programs that help needy patients obtain certain drugs they could not otherwise afford.
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fultonfish
Guest
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fultonfish
Guest
Seems unreasonable to destroy the healthcare system used by 85% of the American people because ONE person has a unique and terrible medical condition.
There is no reason why an organization such as Shriners or St. Jude’s or NORD cannot be formed to provide assistance to people such as Pathia with extremely rare conditions, without hurting hundreds of millions of other people.
Keep in mind that the nationalized healthcare will ration care so that people with major medical expenses will be denied care; mostly old people, but also people with rare diseases.
There is no reason why an organization such as Shriners or St. Jude’s or NORD cannot be formed to provide assistance to people such as Pathia with extremely rare conditions, without hurting hundreds of millions of other people.
Keep in mind that the nationalized healthcare will ration care so that people with major medical expenses will be denied care; mostly old people, but also people with rare diseases.
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fultonfish
Guest
Anyone whose medical expenses are too high will be denied medical help.
I have already posted the link, but apparently you all have declined to click on it.
So, with reluctance and requesting forbearance from the moderators, here is the text:
The Senate Finance Committee have offered two amendments designed to eliminate the rationing components of the Baucus health care bill. The concern revolves around one provision that penalizes Medicare doctors who provide higher levels of medical treatment to senior citizens.
“This provision creates a cruel death spiral. By financially penalizing Medicare providers, the Baucus bill sets up the cruelest and most effective way to ensure that doctors are forced to ration care for their senior citizen patients,” says David O’Steen, the executive director of the National Right to Life Committee.
“Instead of bureaucrats directly specifying the treatment denials that will mean death and poorer health care for older people, it compels individual doctors to do the dirty work," he said.
Senator Jon Kyl, a pro-life Arizona Republican and Senator Pat Roberts, a pro-life Kansas Republican, are behind amendments.
They would remove the provision that establishes that, for at least five years, Medicare physicians who authorize treatments for their patients that wind up in the top 10% of per capita cost for a year will lose 5% of their total Medicare reimbursements for that year.
NRLC says the provision means that all doctors treating older people will constantly be driven to try to order the least expensive tests and treatments for fear that they will be caught in that top 10%.
The pro-life group says this feature operates independently of any considerations of quality, efficiency, or waste and that, “if you authorize enough treatment for your patients, however necessary and appropriate it may be, you are in danger of being one of the 1 in 10 doctors who will be penalized each year.”
The provision creates a “moving target,” the pro-life group explains, because by definition, there will always be a top 10%, no matter how far down the total amount of money spent on Medicare is driven.
“It’s like a game of musical chairs, in which there is always one chair less than the number of players – so no matter how fast the contestants run, someone will always be the loser when the music stops,” O’Steen added.
O’Steen says the incentive the provision creates is purely cost-driven, without any balancing of benefit and that it will create a constant sense of uncertainty in doctors, since none can know in advance precisely what the cutoff for a given year will be – resulting in still more pressure to limit treatment and diagnostic tests to the bare minimum.
Burke Balch, an attorney who is the director of NRLC’s Powell Center for Medical Ethics, said the bill is “creating a financial penalty for doctors who seek to provide their patients with the best, and therefore more costly, treatment available, is a scary way to cut costs.”
**
I have already posted the link, but apparently you all have declined to click on it.
So, with reluctance and requesting forbearance from the moderators, here is the text:
The Senate Finance Committee have offered two amendments designed to eliminate the rationing components of the Baucus health care bill. The concern revolves around one provision that penalizes Medicare doctors who provide higher levels of medical treatment to senior citizens.
“This provision creates a cruel death spiral. By financially penalizing Medicare providers, the Baucus bill sets up the cruelest and most effective way to ensure that doctors are forced to ration care for their senior citizen patients,” says David O’Steen, the executive director of the National Right to Life Committee.
“Instead of bureaucrats directly specifying the treatment denials that will mean death and poorer health care for older people, it compels individual doctors to do the dirty work," he said.
Senator Jon Kyl, a pro-life Arizona Republican and Senator Pat Roberts, a pro-life Kansas Republican, are behind amendments.
They would remove the provision that establishes that, for at least five years, Medicare physicians who authorize treatments for their patients that wind up in the top 10% of per capita cost for a year will lose 5% of their total Medicare reimbursements for that year.
NRLC says the provision means that all doctors treating older people will constantly be driven to try to order the least expensive tests and treatments for fear that they will be caught in that top 10%.
The pro-life group says this feature operates independently of any considerations of quality, efficiency, or waste and that, “if you authorize enough treatment for your patients, however necessary and appropriate it may be, you are in danger of being one of the 1 in 10 doctors who will be penalized each year.”
The provision creates a “moving target,” the pro-life group explains, because by definition, there will always be a top 10%, no matter how far down the total amount of money spent on Medicare is driven.
“It’s like a game of musical chairs, in which there is always one chair less than the number of players – so no matter how fast the contestants run, someone will always be the loser when the music stops,” O’Steen added.
O’Steen says the incentive the provision creates is purely cost-driven, without any balancing of benefit and that it will create a constant sense of uncertainty in doctors, since none can know in advance precisely what the cutoff for a given year will be – resulting in still more pressure to limit treatment and diagnostic tests to the bare minimum.
Burke Balch, an attorney who is the director of NRLC’s Powell Center for Medical Ethics, said the bill is “creating a financial penalty for doctors who seek to provide their patients with the best, and therefore more costly, treatment available, is a scary way to cut costs.”
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fultonfish
Guest
Here is a list of things that would satisfy me as stated by me and by others on numerous posts here at CAF:
The alternatives are [currently] forbidden by government: free competition across state lines [HSA and MSA types of insurance coverage & catastrophic policies]; elimination of mandates; full deductibility of all health care and medical insurance costs; rigorous audit and prosecution of Medicaid fraud; charitable contribution tax treatment for voluntary donations to funds for medical insurance for uninsurable people with chronic medical issues; tort reform. Tax credits / deductions for all medical expenses including allowing people to pay for the health costs of non-family members [like me paying my mother’s expenses][or Pathia’s]. And including medical malpractice insurance premiums.
The medical insurance issue really only affects 5% or so of the population, but that is a large number of people. However, those people could get coverage easily if the government would allow for innovative private sector, free market, voluntary charitable approaches.
The Catholic Church used to operate an extensive network of hospitals. There still are networks of charitable hosptial institutions, such as the Shriners. By favorable tax and regulatory treatment, they could be encouraged to expand.
As long as the government fixes prices through Medicare and HCFA who? What is HCFA??? Never heard of it!!! ], the medical profession and health care will suffer.
BHO has stated he is in favor of a single payer / government controlled system. He has repeatedly stated that even if it takes a few years, he wants the free market system gone.
The free market approach is directly opposed by the single payer / government controlled system.
But if he supported the free market approach, that would be excellent. And there are innovative ways to make the system work for everyone.
The alternatives are [currently] forbidden by government: free competition across state lines [HSA and MSA types of insurance coverage & catastrophic policies]; elimination of mandates; full deductibility of all health care and medical insurance costs; rigorous audit and prosecution of Medicaid fraud; charitable contribution tax treatment for voluntary donations to funds for medical insurance for uninsurable people with chronic medical issues; tort reform. Tax credits / deductions for all medical expenses including allowing people to pay for the health costs of non-family members [like me paying my mother’s expenses][or Pathia’s]. And including medical malpractice insurance premiums.
The medical insurance issue really only affects 5% or so of the population, but that is a large number of people. However, those people could get coverage easily if the government would allow for innovative private sector, free market, voluntary charitable approaches.
The Catholic Church used to operate an extensive network of hospitals. There still are networks of charitable hosptial institutions, such as the Shriners. By favorable tax and regulatory treatment, they could be encouraged to expand.
As long as the government fixes prices through Medicare and HCFA who? What is HCFA??? Never heard of it!!! ], the medical profession and health care will suffer.
BHO has stated he is in favor of a single payer / government controlled system. He has repeatedly stated that even if it takes a few years, he wants the free market system gone.
The free market approach is directly opposed by the single payer / government controlled system.
But if he supported the free market approach, that would be excellent. And there are innovative ways to make the system work for everyone.
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apromisemade
Guest
I never said they didn’t exist, I said they are few and far between in proportion to the staggering number of people who would need them.These places exist and are founded and supported by people who want to help other people.
shrinershq.org/Hospitals/Main/
Another organization
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royal_archer
Guest
It is on topic in that it is a way to provide the desired end with out using an improper means.Straying way off topic, but mostly yes. If I am posting at home, it’s when I’m in bed, waiting for the pain medications to kick in enough so I can try to relax. I never not hurt, but it does feel nice to have it reduced.
I’ve looked for years, I’ve found maybe 4-5people who kinda-sorta have conditions close enough to mine to be lumped together. I think I’m the only one in the US.
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royal_archer
Guest
You must have missed the start of the discussion. I was not talking about any current charity but the option of starting a new one. If such a charity is not completely effective is no matter some additional help is better than nothing. The topic revolves around the end justifying the means. What I am offering is an alternative better means to get closer to the ends.They’re not doctors, they don’t treat the illness. They can help people pay for treatment but it’s a coin flip on how much they might be able to contribute. Even the ones that do go so far as to help people pay are few and far between anyway. Most of them are intended for awareness, research, and social support. It would a rare family based charity indeed that would be able to raise enough money to pay for even a single surgery, let alone chemo or whatever for a multitude of people.
And yes, this is in fact way off topic.
Socialized medicine does not save money, it only plays a shell game by moving money from less popular people to more popular people.The point is when you consider how many people don’t have health insurance, and how much it costs to pay for even basic treatment out of pocket, there is really only so much charity can do. The system needs to be overhauled, big time, in order for lives and money to be saved.
You can not justify socialized medicine by saying that it already exists. Current socialized medicine systems are broke and inherently discriminatory.
Then why not take some of the money that is going to the elderly and impoverished who could be working, and give that money to the needyWe essentially already have socialized medicine for the elderly and impoverished. Why not provide it, or at least something similar, to people who are working hard and getting by but not making so much money they can afford, say, $60,000 dollars for a simple disk replacement procedure?
Socialized medicine does not save money, it only plays a shell game by moving money from less popular people to more popular people.
You can not justify socialized medicine by saying that it already exists. Current socialized medicine systems are broke and inherently discriminatory.
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royal_archer
Guest
What about the option of a low interest loan for the short term need and then pay it back overtime.Or what ever it cost to remove my kidneystone 5 years ago. I had insurance back then, but don’t now. If I had that same problem now that I don’t have insurance that would be an interesting delemma. Loose everything or have a kidney quit. Not a very good choice. Loose everything means my wife looses it with me too, its not just me loosing. Hmm puting a disabled person out on the street good idea to some posting on this thread. In stead of worrying about the one or two pwople working the system, lets have medical do what is is suposed to do save lives and fix people up.
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