Poll: Conspiracy

[Scorpion]

I've heard the drug companies are conspiring to make AIDS a 'chronic' disease instead of curing it with a vaccine. Seems plausible. A friend of mine says he thinks this is also why there's no 'cure' for SCI. Do you believe drug companies and people in government are conspiring to keep us paralyzed because there's more money in that than curing SCI?

~Rus

[DA]

maybe sci researchers are trying to make sci cure like 4ap, once you stop taking the magic pill you become paralyzed again.

[pecla]

I don't think this is true because most companies who are working on SCI-research are bio-tech companies which don't sell drugs or other stuff to SCI-people.And I don't see how the SCI community would benefit the government(I think it only costs them money because we can't work etc).

[Birde]

A conspiracy really doesn't seem plausible. That would require complete cooperation from every country in the world (governments, researchers, doctors) in order for the conspiracy therey to make sense. If there was a cure in any part of the world, and it was being kept "TOP SECRET" someone , somewhere would use it to bring power to their country...too many countries and too many of them don't get along with each other, in order for a worldwide conspiracy!

[Leif]

I think there could be something in this, most believe so according to the poll :)

[Tufelhunden]

What would be nice is if we received half the funding AIDS research receives. I'm not knocking anyone who is HIV+ or has AIDS by any means. I'm just saying that the HIV virus is a retrovirus which has always maintained a head start of the latest meds to counteract it. SCI is a "static" issue compared to the "dynamic" model of AIDS treatment. SCI would have been dealt a serious blow by now if the public thought it could be cured as quickly as they think AIDS would.

[lurch]

When you look around this world and see some of the injustices that take place one can begin to think that there is some kind of evil, all powerful secret group conspiring against us. I don't think many humans are essentially "evil" but most of us are essentially corrupt ,apathetic and disorganised ,to varying degrees.
Basically ,I don't think our enemy is some shadowy organisation but just day to day human disorganization and apathy,which we are all familiar with.

[jukespin]

I've heard the drug companies are conspiring to make AIDS a 'chronic' disease instead of curing it with a vaccine. Seems plausible. A friend of mine says he thinks this is also why there's no 'cure' for SCI. Do you believe drug companies and people in government are conspiring to keep us paralyzed because there's more money in that than curing SCI?

~Rus
I've spent almost a quarter of my post sci life in hospitals with various problems related to it, mostly pressure sores.

About four years ago I was in the local hospital and a young intern came by and introduced himself as interning with my GP and started talking. After a few minutes it became obvious that we shared the same "naturalistic" take on health. We talked for about twenty minutes and, in passing, I mentioned that I had a friend who was dying of Hep C. This guy related how he'd been surfing medical sites a few days before and had discovered some interplay between a small town doctor trying to treat a bunch of people mysteriously dying of liver failure and another at the CDC who had been working on this problem at the clinical trial stage and had found a blend of herbs that was over 90% successful. Two of the herbs were alpha lipoic acid and selenium but the last herb and amounts I lost with the digital recording. When my interlocutor returned to the URL of the CDC docs "cure" the next day, the material was gone. As he was leaving I asked him what he thought had happened to the URL. He gave me a small knowing smile and left.

Yes, I believe that the pharmaceutical companies could be stalling on a cure for AIDS, SCI, cancer, etc..

[justadildo]

i wish those black helicopters would stop flying so low, they wake me up....and i think a black suburban has been following me when the weather is too rough for the helicopters.

[alan]

What would be nice is if we received half the funding AIDS research receives. I'm not knocking anyone who is HIV+ or has AIDS by any means. I'm just saying that the HIV virus is a retrovirus which has always maintained a head start of the latest meds to counteract it. SCI is a "static" issue compared to the "dynamic" model of AIDS treatment. SCI would have been dealt a serious blow by now if the public thought it could be cured as quickly as they think AIDS would.

AIDS is a fatal disease (in many cases) that affects millions of people, plus it scares people because they can get it through sex or blood transfusion. There are far fewer SCI victims, and, with proper care, an SCI victim can live a near normal life span, so, as bad as paralysis and the problems that come with it are, it's simply not the priority AIDS with regard to research.

[lynnifer]

I'm sorry .. but I believe it too. You can live with AIDS now but there is still no cure? All those medicines needed to survive at high cost .. c'mon.

Diabetes too .. my mother, when she was alive 10 years ago, used to have to spend over $500 per month. Betcha it's a lot more now.

They're raking in the moola. There is no reason that there isn't a more effective therapy for diabetes to save all those needles, drugs, etc.

Conspiracy Therorist. lol

[teesieme]

Well...
1) If you were to research stock holders within some of the big companies and see just who owns some of it, it'd probably make you ummm, puke???
2) From the top to why after all the money made through the years (facts researched and presented)with items/drugs for a certain disease isn't enough for this *company* to privately fund or what have you a cure was... they make too much money from their product.
3) When someone is told they can charge up to X amount for their services, let's say for a surgery and legally does so, why is it another can charge less and add some rehab. that is paid up to the said amount covered within the same company.

[Schmeky]

Without proof, a conspiracy is only an opinion. A belief/opinion is not fact.

We have beeter things to concentrate on, don't we?

[artsyguy1954]

I've heard the drug companies are conspiring to make AIDS a 'chronic' disease instead of curing it with a vaccine. Seems plausible. A friend of mine says he thinks this is also why there's no 'cure' for SCI. Do you believe drug companies and people in government are conspiring to keep us paralyzed because there's more money in that than curing SCI?

Rus
A conspiracy of the pharmaceutical industry I can see. I don't think it is anything organized on a worldwide scale or organized, period. That would just draw even more attention to any scheme like that, and besides, modern (digital media) make it pretty hard to control or stem the flow of information for too long. The captains of industry know that, they are not stupid. How embarassing would that be if that sort of organized ( and thereby documented) conspiracy came out. I think the truth, such as it is, is much simpler in this case. Its simply good old greed and the profit motive at work here, plain and simple. Everyone that works in top level management for a major corporation would be familiar with those two principles and how important they are to the proper functioning of the capitalist economy. It is all unspoken, implicit among those that run industry. As such totally unprovable. CONSPIRACY?? NO!! Just a healthy dose of human nature. A sick person buys drugs, a healthy one doesn't. And a chronically sick person even guarantees a pharmaceutical company follow up business.
And as far as the government is concerned, why would they try to block a cure for SCI. What would their incentive be to keep us in our chairs, when it is the government's responsibility to look after our medical needs while we are disabled and often not able to work. (At least in my country). To the gov't a disabled person can only be a burden. So, no conpiracy here, I can't see it.

[teesieme]

I wouldn't say conspiracy either...just that it's about the money. :(

[Le Type Français]

There is no money in having healthy people.

[eagle18]

As I remember, the attention given to AIDS research, drug manufacturing, hospitilization, therapies, etc, placed an enourmous strain on the health care system. We are more than likely feeling a great deal of that pressure today. I cannot explain why such is the case, but I am rather certain that in some areas of government as well as the medical field, concerns exist that treatment for SCI on a level which could rival AIDS, would create an even greater strain on the health care system. That is one of the reasons that bills are not getting passed in congress. This country is a warlike nation and must have funds available to protect it's interests around the globe. Anything which detracts from letting someone get rich, or the rich becoming richer is in for a very difficult time indeed. Just realizing that I am speaking to an international forum, the country I am refering to is America, of which I am a citizen. It's nothing personnal, but if anyone thinks that America is a land where justice reigns, than they are foolishly kidding themselves. If a huge corporation wants to make bigger profits and they cause suffering to thousands of people in the process, well that's just to damn bad. I realize that I have wandered in my response, but I get pretty angry considering that I, as well as others have to suffer so that the greedy can escalate their already enornmous wealth. America is a great country only because it has the best climate, therefore allowing it to grow the most food. America is the world's refrigerator. The constitution, Bill of rights, and all that jazz ? Better than nothing, but don't think for a minute that they still can't take you in the middle of the night and shoot you. This land is about the aquisition of wealth. If you can steal it fine. We stole it from the Indians.

[Leif]

Interesting to see that the conspiracy theory still exists, this poll is five years old.

[Wise Young]

Leif, I have been reading this thread with great interest because the conspiracy theory was prevalent when this site began but continues to crop its head up every once in a while.

There is a huge difference between indifference and conspiracy. I would suggest that the main problem is not conspiracy but indifference. It is important for people to talk to companies rather than speculate about them. I talk to a lot of companies and I can say that 99% are indifferent to the spinal cord injury market rather than conspiring to prevent effective treatments. No company makes much money from spinal cord injury. There is currently no billion dollar drug that is primarily targetted at the spinal cord injury market. Almost all the drugs that are used in the spinal cord injury market are out of or close to the end of their patent life. There are no devices that are dominated by the spinal cord injury market. If there were any billion dollar drug or treatment for spinal cord injury, I guarantee you that there would be much more investment into spinal cord injury research by companies.

The indifference is also present in Congress. Yes, partly as a result of the Rally and Christopher Reeve, we have some champions in Congress but most of the representatives either will not see us or, if they do see us, will forget us soon after the meeting because they have other and much more powerful and persuasive groups that are going after them.

Christopher Reeve recognized this indifference very early and he said that the most important goal is to get hope for spinal cord injury back into the hearts and minds of not only the spinal cord injury community but the public. He made great inroads into public hope and confidence during the last ten years. We must continue this.

The roller coaster ride that the spinal cord injury community undergoes every several months, from irrational exuberance to dark despair, is not helping. We need to have rational hope and stay on an even keel with urgent hope.

Wise.

[Leif]

There is currently no billion dollar drug that is primarily targetted at the spinal cord injury market. Almost all the drugs that are used in the spinal cord injury market are out of or close to the end of their patent life. There are no devices that are dominated by the spinal cord injury market. If there were any billion dollar drug or treatment for spinal cord injury, I guarantee you that there would be much more investment into spinal cord injury research by companies.
I know, thanks, I came over this one yesterday regarding devises and marked. The marked is there it is just to come up with the medications and the devises although difficult.


Cyberkinetics' Andara(TM) OFS (Oscillating Field Stimulator) Device technology is currently under FDA review to be designated as a Humanitarian Device for the regeneration of neural tissue damaged in spinal cord injury. The Andara OFS Device potentially addresses neural stimulation markets for traumatic brain injury, stroke, peripheral nerve damage and spinal cord injury. Analysts currently estimate that the market for neural stimulation devices exceeds $1.6 billion annually, and they expect this market to grow to more than $10 billion within 10 years. The acute spinal cord injury market alone is currently estimated at more than $500 million worldwide.
http://www.genengnews.com/news/bnitem.aspx?name=1592888



The roller coaster ride that the spinal cord injury community undergoes every several months, from irrational exuberance to dark despair, is not helping. We need to have rational hope and stay on an even keel with urgent hope.

Agree.

[glider]

Quote from Herbert Lay, M.D., Former FDA Commissioner.

"The thing that bugs me is that the people think the FDA is protecting them. it isn't. What the FDA is doing and what the people think it is doing are as different as night and day"

May be NOT a conspiracy but the indifference of SOME politicians gives room for hidden agendas that conside.


O.P. by Dr.Wise
It is important for people to talk to companies rather than speculate about them. I talk to a lot of companies and I can say that 99% are indifferent to the spinal cord injury market rather than conspiring to prevent effective treatments. No company makes much money from spinal cord injury.


they make much more money keeping us in w-chairs than out of them.
the word MOBILITY is big money.

Glider

[teesieme]

What the *wise* had said in another thread in essence of taking our country back to what it should be, the majority of the people vs. a few otherwise... well it really hit home with me.

[flyfisher]

I think there is alot of work going on in spinal cord injuries. I don't think it is the pharmaceutical companies at all. It is the stupid US government and the Christian Coalition that stop many things from progressing in this area. R&D takes years before it even gets to trials and the FDA.. not an easy nor cheap thing. Yup it all is about money, but more importantly to me it is more about politics.... there are many companies working on things and I feel when the tide changes there will be a positive movement in spinal cord research and hopefully cures..keep your fingers crossed....

[Wise Young]

Quote from Herbert Lay, M.D., Former FDA Commissioner.



May be NOT a conspiracy but the indifference of SOME politicians gives room for hidden agendas that conside.



they make much more money keeping us in w-chairs than out of them.
the word MOBILITY is big money.

Glider

Glider,

The mobility market may seem profitable but it is not, at least from the perspective of companies. For example, I was a member of the advisory panel that advised Johnson & Johnson concerning the development of the ibot and the iglider. This is a big company that has very significant marketing muscle. When they were considering entry into the market, they carried out extensive market studies. Based on those studies, they focused on products where they had strong intellectual property protection. Despite having spent hundreds of millions of dollars developing and marketing these two products, they have not been making the money that they had hoped. I know many of the top executives in Johnson & Johnson. I can assure you that the company does not oppose curative therapies for spinal cord injury.

I don't know many companies that are making much money from manual chairs. The high-end powered devices are providing much of their profits. This is largely because of very stiff competition in the lower end of the market and the almost complete lack of intellectual property protection. The moment any innovation appears in a product, competitors incorporate it into their products within months. Companies that make mobility devices have been trying hard to diversify into other areas such as homecare devices, beds, respiratory products, exercise equipment, and stimulation devices. That is where the really big money is.

Invacare recently announced their fourth quarter earnings for 2005 (Source (http://www.invacare.com/cgi-bin/imhqprd/inv_news/newsArticleOnly.jsp?s=0&passedChildOID=537121761&from=Home)) and they have been struggling to maintain and increase profitability. Their net sales in the quarter decreased 7%. For the past several years, they have been focusing on cost reduction and diversifying their products from mobility to other products, but respiratory products (CPAP) declined 28% for the quarter. Sales of "rehab products" decreased 13%. Consumer power wheelchair revenues were down 33% for the quarter and 8% for the year.

Almost everybody has been outsourcing their manufacturing to Asia. Asia is the largest growing market in mobility products but relatively few American companies have been able to make significant inroads into that market because of the stiff competition and the low manufacturing prices. Several Asian companies who use to make bicycles are entering the market (Source (http://www.bicyclesb2b.com/news/karma-industryreport.htm)). Not only can these companies manufacture wheelchairs for much less but they are satisfied with much lower profit margins. As these companies improve their technology, they will be entering the American market and U.S. wheelchair manufacturers will have a difficult time competing on the basis of price.

On the other hand, I think that you are right about equipment manufacturers benefiting from homecare products. That is a HUGE market. Companies have been very actively lobbying Congress for favorable Medicaid/Medicare policies. For example, a very contentious area is rental versus purchase of home care equipment. The following article from the Wall Street Journal illustrates.

http://online.wsj.com/public/article/SB114109255909784910-Hdvl_PjgjJvKiWpE2ExUtK1xyl0_20070227.html?mod=publ ic_home_us_inside_today
'Ownership' for Elderly's Oxygen Equipment
By DAVID ROGERS
February 28, 2006; Page A6

WASHINGTON -- President Bush's "ownership society" is coming to one corner of Medicare: Live long enough, and a patient could have his or her own oxygen equipment and hospital-style bed at home.

Congress paved the way this month with a budget bill mandating a "rent-to-own" rule requiring that Medicare home-care beneficiaries take title to their rented beds after 13 months. Now, Mr. Bush wants to apply the same standard to oxygen equipment in hopes of saving billions of dollars and empowering the elderly to bargain for cheaper respiratory-therapy services.
[William Thomas]

The administration contends that the rental payments now are a waste of scarce government funds, and that the situation has reached a point where relationships must be altered. Instead of renting, Medicare would in effect buy the equipment for a beneficiary, who then could bargain for services -- oxygen supplies and maintenance -- separately on the basis of service and price.

Patients will now "own the means of delivery," says House Ways and Means Committee Chairman Bill Thomas, and the industry will have to compete more to serve them. "Remember Marx -- own the means of production," the California Republican adds with a grin.

The change has angered Republican-friendly medical-equipment and home-care suppliers that rent equipment to Medicare but never surrender title. Malachi Mixon, a Bush supporter whose medical-equipment firm Invacare Corp. has grown with Medicare home care, calls the proposed changes "absolutely crazy" and says they ignore the services provided by suppliers, financed through the rentals. "They think you drop it off like a stork," he says. "It's really a medical protocol."

Critics contend the administration is captive to a free-market ideology that ignores the frailty of the elderly, many of whom are in ill health and already bedeviled by another competition model: the Medicare prescription-drug benefit.

"Republican delusions that health care can work like any other market apparently know no bounds," says Robert Berenson, a senior fellow at the Urban Institute and a top Medicare administrator under President Clinton. "They now even extend their notions of an ownership society to people in their last months of life."

Mr. Mixon says one unintended consequence is the economic pressure to build cheaper, less durable products given the 13-month cap imposed on bed rentals. And Lawrence Higby, chief executive of Apria Healthcare Group Inc., says owning oxygen equipment is likely to be a burden rather than a boon for the elderly, many of whom are too weak to negotiate the savings on supply envisioned by Republicans.

"The cornerstone of the misunderstanding is that all we are doing is providing equipment," he says. "Medicare's attitude is you only pay the police and fire departments when they come to the house. We maintain a 24-hour hotline. We have drivers named in wills."

The oxygen debate is a modern tale of the most basic of all health-care goods. And given the rising death rates for respiratory ailments, it is likely to play an increasing role in Medicare's financial squeeze.

<more>


There is no question that respiratory products is a big market. According to the above article,

For Medicare, close to a million patients now receive oxygen therapy. Although monthly rental payments already have been cut, allowed charges rose to $2.78 billion by 2004, a 71% increase since 1998 that reflects the growing demand. The revenue feeds the home-health and medical-equipment industries, whose own evolution is closely tied with Medicare's efforts since the 1980s to ratchet down hospital costs.

Hospitals began discharging the elderly faster after Medicare instituted a new fixed-payment system in 1985. Court rulings quickly followed that greatly expanded the ability of patients to qualify for continuing care at home, and today, annual public spending for home care and medical equipment exceeds $38 billion.

The biggest publicly traded companies -- whose stocks have seen rough sledding recently -- are conspicuous for their politically active Republican CEOs. Invacare's Mr. Mixon, a blunt Marine veteran with a quail-hunting ranch in Texas, is a major fund-raiser for Mr. Bush. Mr. Higby is a former Nixon White House aide still active in Republican politics.

By mobilizing Ohio Republicans, Invacare was able to beat back Rep. Thomas's late-night effort to impose an 18-month cap as part of December budget talks. But the final law -- requiring a transfer of ownership after 36 months -- still worries the industry, and the administration would shorten that by almost two years.

The industry paid a price for its marriage of convenience with government when oxygen was first covered by Medicare in the 1960s. As a prescribed, outpatient drug therapy, oxygen didn't fit into Medicare's focus on hospital care. To qualify, the government agreed to payments keyed more to the equipment, not the service itself.

This has led to distortions. Oxygen concentrators, which separate the oxygen out of the air and store it for the patient's use, cost $1,000 to $2,000. But with an unlimited stream of Medicare-rental payments, companies can recoup their capital investment many times over -- without ever surrendering title.
Almost a decade ago, auditors estimated Medicare would have saved $500 million in 1996 if it had operated more like government-run veterans' oxygen programs. Medicare-oxygen payments have since been cut by almost 46% -- after factoring in inflation. But the administration says the compensation remains excessive.

"How many times do we have to pay for this equipment?" says Herb Kuhn, director of the Center for Medicare management within the agency that runs Medicare. Once title is transferred to the patient after 13 months, he says, Medicare will share the costs of continuing oxygen services, including maintenance. "I see it as a very seamless transparent web," Mr. Kuhn said. "The benefit is still there."


Wise.

[eagle18]

There is only the nature of things that exist within a capitolistic democracy. If the Congress were to pass a law and the President to sign the law which provides for stem cell research, then the federal government becomes responsible for providing funds for such research. Anyone or body of researches would be allowed to request monies from the federal government to proceed with research. The government would not be able to turn down all such requests. In order to grant revenue to such parties that request it, the federal government would have to provide not only the money but create a new bureau to award such grants. More federal employees would have to be hired (at a cost to the taxpayers) to study and investigate just who would recieve the revenue.

Just where is all this money going to come from? There are only so many slices of a pie. There would have to be cuts somewhere. A governmental bureau cannot just be created at no cost. There would not be anyway to just transfer the responsibility to another already existing bureau.

Back to where is the money going to come from? Will it be taken from the military, which is spending an enormous amount of money to support an overseas occupation. Wars are not conducted with only flags and men and guns and planes. The army needs medicine, gas, replacement parts for machines, such as rubber tires for moving vehicles, parts for planes and ships, toothbrushes, clothing, bullets, etc. And it must all be transported thousands of miles which requires even more fuel and replacement parts and into the night. Not to mention what any army travels on, namely it's stomach. They need food. You could probably fund an entire research facility for six months on what it cost the army to sustain itself for a week.

You can talk to as many congressman as you like and break as many hearts as you can, but when the American people are primarily concerned about their own safety and do not understand that their safety is being made worse by every hour it's army occupies a land in which they are not welcome: well the result is that nothing is going to change.

The American people want to be safe and own SUV'S. In order to fund a nationally approved research program about stem cell research would mean to forfiet their safety and SUV'S. Just what do you think they are going to choose? The only way to change their understanding of the situation is to inform them that SCI is not something that affects someone else's family, but it can affect their own and that the continuance of an army in a place where it is unwanted makes their safety 10 times more dangerous.

I am not speaking from theory here. The very scenario we as a people find ourselves in now is not new. It has occurred hundreds of times in the course of human history and it has happened to THE UNITED STATES most recently in Vietnam which I remember all to well. Havn't we asked ouselves why U.S. citizens are going to China, Russia, Korea, India and the like for treatment. What wars are any of those countries supporting ?

[teesieme]

Maybe not sci but some diseases require daily medicals supplies that = $ per person.

[angel7]

The only reason I voted quite possible is because I simply don't trust our current adminstration. In my humble opinion I think our present administration is extremely corrupt. Now I'm going to say something that I've said before that caused a little bit of a stir on CC. I would rather have AIDS than a SCI. For me especially with this current extreme pain and the total lack of independence I don't want to live another 5-1/2 years like this. I'm going to try but every day it gets harder and harder to keep this up. The only reasons I keep hanging around is for my loved ones and to keep plugging away to advocate for a cure. People just don't get it which is also why I spend a good amount of time trying to get my book published.

If all of the ABs in the world had to spend just 1 day being a SCI survivor we would be at the top of the list for a cure. Unfortunately, they don't have a clue what it means to be a quad. They think we just can't move. They don't know about bowel accidents, bedsores, central nervous system pain, spasms, blood clots, atrophy, UTIs, being cold when it's 90 degrees outside, constant care, and the lack of the medical establishments desire to even want to deal with a quad. They don't realize that most of us didn't get huge settlements from our accident so we also have to worry about whether or not we will get to live in our homes or end up one day forgotten in a nursing home.

Again, this is my opinion which I most of the time I keep it inside but for me this is not living this is existing. Existing with pain, embarrassment, anxiety, fear, and hope.

Deb

[paramoto]

I dont have a hard time believing that at all. It is much better business to treat than to cure.

[paolocipolla]

The only reason I voted quite possible is because I simply don't trust our current adminstration. In my humble opinion I think our present administration is extremely corrupt. Now I'm going to say something that I've said before that caused a little bit of a stir on CC. I would rather have AIDS than a SCI. For me especially with this current extreme pain and the total lack of independence I don't want to live another 5-1/2 years like this. I'm going to try but every day it gets harder and harder to keep this up. The only reasons I keep hanging around is for my loved ones and to keep plugging away to advocate for a cure. People just don't get it which is also why I spend a good amount of time trying to get my book published.

If all of the ABs in the world had to spend just 1 day being a SCI survivor we would be at the top of the list for a cure. Unfortunately, they don't have a clue what it means to be a quad. They think we just can't move. They don't know about bowel accidents, bedsores, central nervous system pain, spasms, blood clots, atrophy, UTIs, being cold when it's 90 degrees outside, constant care, and the lack of the medical establishments desire to even want to deal with a quad. They don't realize that most of us didn't get huge settlements from our accident so we also have to worry about whether or not we will get to live in our homes or end up one day forgotten in a nursing home.

Again, this is my opinion which I most of the time I keep it inside but for me this is not living this is existing. Existing with pain, embarrassment, anxiety, fear, and hope.

Deb

Angel,

I agree with all you say here and I feel the same, but I am more luky than you because I am T4, so as soon as we have a cure you go first, I can wait more than you.:)

Paolo

[chick]

"... Now I'm going to say something that I've said before that caused a little bit of a stir on CC. I would rather have AIDS than a SCI. For me especially with this current extreme pain and the total lack of independence I don't want to live another 5-1/2 years like this. I'm going to try but every day it gets harder and harder to keep this up. The only reasons I keep hanging around is for my loved ones and to keep plugging away to advocate for a cure. People just don't get it which is also why I spend a good amount of time trying to get my book published.

If all of the ABs in the world had to spend just 1 day being a SCI survivor we would be at the top of the list for a cure. Unfortunately, they don't have a clue what it means to be a quad. They think we just can't move. They don't know about bowel accidents, bedsores, central nervous system pain, spasms, blood clots, atrophy, UTIs, being cold when it's 90 degrees outside, constant care, and the lack of the medical establishments desire to even want to deal with a quad. They don't realize that most of us didn't get huge settlements from our accident so we also have to worry about whether or not we will get to live in our homes or end up one day forgotten in a nursing home.

Again, this is my opinion which I most of the time I keep it inside but for me this is not living this is existing. Existing with pain, embarrassment, anxiety, fear, and hope." DebI can understand some of what you are saying, especially given that some conditions - "illness/diseases", including cancer, have some possiblity of improvement and getting better, or recovery to pre-condition state.

From your post above, you don't have a good understanding of AIDS, nor realize how Full blown AIDS can affect someone in every way you described and be extremely painful, incapacitating and dehumanizing.

[paramoto]

Glider,

The mobility market may seem profitable but it is not, at least from the perspective of companies. For example, I was a member of the advisory panel that advised Johnson & Johnson concerning the development of the ibot and the iglider. This is a big company that has very significant marketing muscle. When they were considering entry into the market, they carried out extensive market studies. Based on those studies, they focused on products where they had strong intellectual property protection. Despite having spent hundreds of millions of dollars developing and marketing these two products, they have not been making the money that they had hoped. I know many of the top executives in Johnson & Johnson. I can assure you that the company does not oppose curative therapies for spinal cord injury.

I don't know many companies that are making much money from manual chairs. The high-end powered devices are providing much of their profits. This is largely because of very stiff competition in the lower end of the market and the almost complete lack of intellectual property protection. The moment any innovation appears in a product, competitors incorporate it into their products within months. Companies that make mobility devices have been trying hard to diversify into other areas such as homecare devices, beds, respiratory products, exercise equipment, and stimulation devices. That is where the really big money is.

Invacare recently announced their fourth quarter earnings for 2005 (Source (http://www.invacare.com/cgi-bin/imhqprd/inv_news/newsArticleOnly.jsp?s=0&passedChildOID=537121761&from=Home)) and they have been struggling to maintain and increase profitability. Their net sales in the quarter decreased 7%. For the past several years, they have been focusing on cost reduction and diversifying their products from mobility to other products, but respiratory products (CPAP) declined 28% for the quarter. Sales of "rehab products" decreased 13%. Consumer power wheelchair revenues were down 33% for the quarter and 8% for the year.

Almost everybody has been outsourcing their manufacturing to Asia. Asia is the largest growing market in mobility products but relatively few American companies have been able to make significant inroads into that market because of the stiff competition and the low manufacturing prices. Several Asian companies who use to make bicycles are entering the market (Source (http://www.bicyclesb2b.com/news/karma-industryreport.htm)). Not only can these companies manufacture wheelchairs for much less but they are satisfied with much lower profit margins. As these companies improve their technology, they will be entering the American market and U.S. wheelchair manufacturers will have a difficult time competing on the basis of price.

On the other hand, I think that you are right about equipment manufacturers benefiting from homecare products. That is a HUGE market. Companies have been very actively lobbying Congress for favorable Medicaid/Medicare policies. For example, a very contentious area is rental versus purchase of home care equipment. The following article from the Wall Street Journal illustrates.

http://online.wsj.com/public/article/SB114109255909784910-Hdvl_PjgjJvKiWpE2ExUtK1xyl0_20070227.html?mod=publ ic_home_us_inside_today


There is no question that respiratory products is a big market. According to the above article,



Wise.

Dr. Young, from a layman's perspective it would seem to me that the real money is being made in drugs and supplies. Certainly the ibot at around 25k would have a very limited market. But what about the makers of Baclofen, Ditropan, Catheters, Exam Gloves at US$6 dollars a box when you can buy them in China for cents, etc. I would think that those profit centers are real contributors even if the company as a whole may or may not be profitable.

I read a thread that the External Catheter distributed by Bioderm (liberty pouch) in the US for over 9 dollars is sold in Canada (as the Daisy) for a couple of dollars, according to a thread on this site. If that is true, it is criminal.

[Wise Young]

Dr. Young, from a layman's perspective it would seem to me that the real money is being made in drugs and supplies. Certainly the ibot at around 25k would have a very limited market. But what about the makers of Baclofen, Ditropan, Catheters, Exam Gloves at US$6 dollars a box when you can buy them in China for cents, etc. I would think that those profit centers are real contributors even if the company as a whole may or may not be profitable.

I read a thread that the External Catheter distributed by Bioderm (liberty pouch) in the US for over 9 dollars is sold in Canada (as the Daisy) for a couple of dollars, according to a thread on this site. If that is true, it is criminal.

paramoto,

Baclofen, oxybutinin (ditropan), catheters, and exam gloves are all made by multiple companies as "generic products". In other words, competition drives the price down and the companies don't make much profit.

The high prices of drugs and supplies in the United States, compared to Canada, stem from the policy of the United States (read Bush Administration and Republican Congress) to prohibit bargaining with the companies for lower prices. In other words, Medicare/Medicaid is not allowed to negotiate lower prices with the companies. In contrast, the Canadian government drives a hard bargain with the companies, telling them that if they don't lower the price, they will go to another company. I suspect that Bioderm is losing money on the catheters that they are selling in Canada but they are doing it because they want to be in the Canadian market.

While I am sympathetic towards the manufacturers, I don't think the U.S. policy is the correct one because taxpayers are ending up with the bill, paying for catheters in Canada. As long as the companies are allowed to charge whatever they want in the U.S., they will find ways to make money. Even if they may not feel good about it, they will make taxpayers pay for catheters in Canada, if it makes money for them.

I believe that there is a way to deal with this problem. One way is for Congress to pass a law that says a company in the United States cannot charge the U.S. federal government more for a product that it charges in another country. There are lots of federal laws like this. For example, the federal governmen does not allow airline companies to charge the government a higher fare than anybody else.

Such a policy would provide a strong disincentive to companies to make deals with other countries at the expense of the U.S. government. Special exceptions can be made. For example, if the company can show that if they charge the same rate as the U.S., they will lose market share to a competitor in the foreign country. Of course, if the company is losing money by charging lower than cost in a foreign country, they would be accused of "dumping".

There is general agreement that our healthcare policy and federal insurance system are not only working poorly but the costs are inordinately high and we can no longer afford to pay the costs. The problem is that neither the White House nor Congress seem to have come up with any plan to solve the problems.

Wise.

[paramoto]

paramoto,

Baclofen, oxybutinin (ditropan), catheters, and exam gloves are all made by multiple companies as "generic products". In other words, competition drives the price down and the companies don't make much profit.

The high prices of drugs and supplies in the United States, compared to Canada, stem from the policy of the United States (read Bush Administration and Republican Congress) to prohibit bargaining with the companies for lower prices. In other words, Medicare/Medicaid is not allowed to negotiate lower prices with the companies. In contrast, the Canadian government drives a hard bargain with the companies, telling them that if they don't lower the price, they will go to another company. I suspect that Bioderm is losing money on the catheters that they are selling in Canada but they are doing it because they want to be in the Canadian market.

While I am sympathetic towards the manufacturers, I don't think the U.S. policy is the correct one because taxpayers are ending up with the bill, paying for catheters in Canada. As long as the companies are allowed to charge whatever they want in the U.S., they will find ways to make money. Even if they may not feel good about it, they will make taxpayers pay for catheters in Canada, if it makes money for them.

I believe that there is a way to deal with this problem. One way is for Congress to pass a law that says a company in the United States cannot charge the U.S. federal government more for a product that it charges in another country. There are lots of federal laws like this. For example, the federal governmen does not allow airline companies to charge the government a higher fare than anybody else.

Such a policy would provide a strong disincentive to companies to make deals with other countries at the expense of the U.S. government. Special exceptions can be made. For example, if the company can show that if they charge the same rate as the U.S., they will lose market share to a competitor in the foreign country. Of course, if the company is losing money by charging lower than cost in a foreign country, they would be accused of "dumping".

There is general agreement that our healthcare policy and federal insurance system are not only working poorly but the costs are inordinately high and we can no longer afford to pay the costs. The problem is that neither the White House nor Congress seem to have come up with any plan to solve the problems.

Wise.

Thanks Dr. Young. Sometimes the profit margin does not necessarily goes to the manufacturer, sometimes it stays somewhere in the distribution chain. What you are saying is very true regarding "dumping" practices, and the US is the first to defend its manufacturers and distributors with anti-dumping regulations (very hard on agricultural products like sugar, etc. limited with very strict quotas). It may be useful to know that I pay less than 3 dollars in Central America for a box (buying even one box at a time) of gloves exactly the same as the ones sold in the US for 6, likely coming from the same manufacturers in Malaysia and other places. Not only the US taxpayers are getting the unfair bill, but so are insurance companies and clients and individuals like myself whose insurance does not cover supplies and equipment. Finally, I think that big business is close to its very worst when it comes to drugs and medical supplies. The question that arises from your kind explanation is; Why do US manufacturers have to "dump" to compete in Canada? If someone else (Canadians or whomever) builds a better and less expensive mousetrap, let them sell it in the states for the benefit of all of us. Why protect big business at our expense?

[eagle18]

Dr. Wise,

Canada has free medical care. They do not have to support an army of 3,000,000 some 5,000 miles away from home. You cannot have both. It is economically impossible.

Before leaving office in 1960, President Eisenhower warned about the great military complex. What we have as well now, is the great medical industrial complex.

When I go to see a doctor I dont' just see a doctor. I see a claims adjuster, a billing person, a lab technician, an mri or whatever tech, an appointment specialist, an office administrator, Someone who takes my pulse who is not a nurse, someone who administers an ekg who is also not a nurse, a nurse practionner, then maybe a nurse and finally i get 5 minutes with a doctor, when it might take 20 minutes just to explain my situation. All these people have to be paid, All of their medical insurance concerns must be paid. People do not nesseccarily become health proffessionals because they care about healing. They see it as a way to make a living. Just what kind of care can come out of those who are involved for reasons which are mercenary. Does the mri technician have to take the Hippocratic oath ? Medicine is not big business, it is a huge business.

[nicotico]

let them sell it in the states for the benefit of all of us. Why protect big business at our expense?

paramoto, shhhhhhh ................ black helicopters will start circling your house.

big business is who is running our world. they will never relinquish their tight hold on the public. my titanium parts came from the U.S. and were put in my back in Costa Rica, the invoice is for 5k, half what it costs here. hahaha ............ crazy businessmen, we buy elsewhere!

[paramoto]

paramoto, shhhhhhh ................ black helicopters will start circling your house.

big business is who is running our world. they will never relinquish their tight hold on the public. my titanium parts came from the U.S. and were put in my back in Costa Rica, the invoice is for 5k, half what it costs here. hahaha ............ crazy businessmen, we buy elsewhere!

Maybe Oliver Stone should do a movie about this. What is true is that the medical industry and drug manufacturing/distribution/promotion/advertising is screwed up in the US. Have you seen how many commercials there are about drugs on TV these days. In marketing terms that is called a pulling strategy, where the customer is induced to solicit the products he/she desires. How much sense does that make?? What the heck do we know about the drugs we should or need to be taking? Why are they marketing directly to the customer when the Drs. are the ones that should decide if we need to take a drug or not. We end up paying for the gazillions they spend on advertising.

Costa Rica?? We almost flew on the same ambulance plane. :)

[eagle18]

Paramoto,

As a matter of fact it used to be illegal to advertize medical products on tv or anywhere else. The medical community or just the drug companies argued that their right to freely advertize ( probably 1st ammendment rights ) was being illegally repressed. They won the case and we now have what you are describing. I agree with you about Oliver Stone. Michael Moore is currently making a film about the horror that is our health care sytem. Michaelmoore.com. Part of the problem here is that some people think that we live in a democracy, when we really live in what is a bona fide ressurrection of the Roman Empire.

[RehabRhino]

Part of the problem here is that some people think that we live in a democracy, when we really live in what is a bona fide ressurrection of the Roman Empire.

More like an oligarchy

http://en.wikipedia.org/wiki/Oligarchy

[Wise Young]

Eagle, you are right. The doctor is only one cog in a big machine. There is also the other end of the machine. The manufacturer is now only a small cog in the supply chain. There are about multiple layers of bureacracy that every item has to go through in order to get to the patient.

That machine has an insatiable appetite. The government and insurance companies have tried to curb that appetite in every way possible except to control the prices. Most major insurance companies and hospital chains, for example, do bargain with the drug companies for lower prices. Likewise, the veteran administration can bargain with medical suppliers and manufacturers for lower prices.

The new medical savings accounts may have some impact on the machine. For the first time, consumers have direct control over paying of their medical bills. There is also now a flourishing secondary market of medical devices and even drugs on internet, markets that are marketing directly to consumers and forming outside of the medical supply chains and subject to market forces. I believe that this will have a significant effect on pricing.

Note that consumers are already purchasing billions in "alternative medicines" over internet and health food stores, often at cut-rate prices because the competition is fierce. As more and more of the purchases go directly to consumers, the medical supply chain will contract. While first-line drugs will still be protected, the genetic manufacturers will be forced to compete in this market. But, that is also the reason why consumers must become very knowledgeable.

Sites such as this one, with consumers exchanging information directly with each other, will come to dominate the marketplace. Once a consumer knows that a particular drug works for them, they will get their supplies from alternative sources because it saves them money. Insurance companies are very nervous about this because they are being bypassed. Note that insurance companies make money from volume (charging a fixed rate between what they receive in premiums and what they pay out). Their volume will decline.

In a few years, the medical marketplace will be very different. The pharmaceutical companies realize this and have begun to rev up their marketing to pitch directly to consumers rather than the doctors. While doctors still have the write the prescriptions, an increasing proportion of the drugs that people take are now going over the counter. Furthermore, people can choose where to fill their prescriptions. In my opinion, this is what will drive prices down.

Wise.



Dr. Wise,

Canada has free medical care. They do not have to support an army of 3,000,000 some 5,000 miles away from home. You cannot have both. It is economically impossible.

Before leaving office in 1960, President Eisenhower warned about the great military complex. What we have as well now, is the great medical industrial complex.

When I go to see a doctor I dont' just see a doctor. I see a claims adjuster, a billing person, a lab technician, an mri or whatever tech, an appointment specialist, an office administrator, Someone who takes my pulse who is not a nurse, someone who administers an ekg who is also not a nurse, a nurse practionner, then maybe a nurse and finally i get 5 minutes with a doctor, when it might take 20 minutes just to explain my situation. All these people have to be paid, All of their medical insurance concerns must be paid. People do not nesseccarily become health proffessionals because they care about healing. They see it as a way to make a living. Just what kind of care can come out of those who are involved for reasons which are mercenary. Does the mri technician have to take the Hippocratic oath ? Medicine is not big business, it is a huge business.

[nicotico]

Have you seen how many commercials there are about drugs on TV these days.

during my daily dose of "the price is right" you should see how many med ads there are. most are for old people, but i could get a free rascal scooter if i call em. it makes me laugh when i see the ads placed directly for a certain demographic.

[angel7]

Paolo,

That is probably the sweetest thing I've ever been told but I know you suffer as much as anyone - so lets get cured together. You sweet, dear man -

Deb

[paramoto]

but i could get a free rascal scooter if i call em


LOL, That's funny. Get one man, they must be fun to ride if we work them up.

[lynnifer]

Hey eagle -

Canadian medicine is NOT free. It is paid for by the taxpayers .. we are taxed to death .. and guess what .. it's not working anymore.

[Curt Leatherbee]

Then that way you can have some tax cuts.

[glider]

There is general agreement that our healthcare policy and federal insurance system are not only working poorly but the costs are inordinately high and we can no longer afford to pay the costs. The problem is that neither the White House nor Congress seem to have come up with any plan to solve the problems.

Wise.

"our healthcare policy and federal insurance system are not only working poorly but the costs are inordinately high" does this mean the same as BROKEN-DOWN? No wonder this thread keeps popping up, we do not trust this Gov., they do not do their job right and it leaves room for shark-type agendas in the med-system.

My simple manual quickie wheel chair goes for $1460 in the Internet but the Kaiser vendor was charging Medical $2700, and it was approved !
4 months later and I still don’t have a chair, can share with you many more stories like this one about my durable equipment, but i am sure you get my point.

I wonder why people are having to go across the border and China to risk it all for a cure or why Mr. Richard Pearl is charging this Gov. (us tax payers) $3.00 to put one coke can in the hands of a US soldier in the desert of Iraq. and getting it!

It is not the illegal aliens draining our economy is our own internal sharks and the mega-medical corporations that have made our cost for a cure cost in the $B's and inordinately high.

A global or national conspiracy? May be not, but "We have an extremely corrupted administration" with hidden agendas that conside.


O.P. by Angel7 Deb
The only reason I voted quite possible is because I simply do not trust our current administration. In my humble opinion, I think our present administration is extremely corrupt.
Again, this is my opinion which I most of the time I keep it inside but for me this is not living this is existing. Existing with pain, embarrassment, anxiety, fear, and hope.


I am sure there are many members like Deb (angel7) who would rather keep this type of opinion inside.

Had hope for a cure here at home but will not wait 8 to 14 years,
Nothing in the pipeline !!
I am preparing to travel in the near future for it and may have to settle for a partial cure. How sad.

The hell with them sharks. :fish2:


Glider :pray:

[eagle18]

Hey eagle -

Canadian medicine is NOT free. It is paid for by the taxpayers .. we are taxed to death .. and guess what .. it's not working anymore.

Lynnifer,

Could you be more specific as to what is not working anymore.