For those in the U.S. how do you think this administrations proposed health care reform would effect us?

Will it be free Imitrex and O2 for everyone for the asking or do you think our choices and our doctors choices become more limited?

I'm on Triwest which is the government's healthcare provider which I earned through serving a career in the military. They basically ration my Imitrex already, although to be fair I don't think its because of the cost (yet) I think its just that its considered dangerous - so unless I pull strings and jump through hoops, I can only get what works out to be about one dose per three days. Not fun when I'm getting three attacks a day.

I used to be able to see a Neurologist at the Army Medical Facility where most of the specialists are. No more. Too many patients, not enough neurologists. Back when I could, the wait time was a few weeks or more. The point is, access to this care is not determined by demand, it is determined by budget.

There are some medications and treatments others have available to them that are not available to me because they have simply made the decision that "we don't do that."

BTW, don't get me wrong, while my health care that I earned through my service may not be perfect, its darned good and I appreciate those who provide it. The problems are mostly due to fixed budgets rather than supply/demand, this would be compounded on a larger scale.

What I'm getting at is, for us, with the nature of CH being a rare and somewhat lightly researched disease already, where most docs the average CH sufferer runs into are well behind the curve - I'm deeply concerned about the eventuality where a lot of the decision making moves from the doctor's office to some windowless room in D.C. where a bureaucrat decides how CH is going to be treated based on cost effectiveness. And I know how the government thinks - I wouldn't be surprised if they refused to give us O2 out of some kind of safety concern or something.

Anyway, I want to see what you all think. The whole deal sounds good on the face of it - "free" health "insurance" for the everyone. But for people who actually have something like we do.... would it be such a good thing?

i havent had insurance in years nor have i been to the doctor for ch nor do i put any stock in western medicine.

in order for socialized health care to be feasible drug companies need to cure some of these ailments instead of just kinda treating them. the drug companies have spent millions of $$$ to lobby against this. imetrex doesn't cure anything it just aborts attacks at a steep price. if imetrex cured your headaches how much would you buy? if the government is paying for it how much will they buy?

if your provider rations what works for you find something else that works. chances are it won't eat your guts out or give you heart problems like imitrex.

any kind od socialized plan they come up with is going to have to prove profitable to drug companies before it will pass. its a catch 22


to answer your question its not going to effect my treatment of ch as long as my treatment methods are illegal. the illegal way is more effective and not as harmful to your body.

now if i break my leg or have to get something done outside of ch we'll see how that goes.

I seem to remeber posting something similar some months back. If the drug companies launch a cure for CH they would do a lot of business in a short period of time and then it would slow down to a trickle as only newly diagnosed sufferers would be potential customers. How much more profitable for them to sell something that offers only temporary relieve  -  as a consequence they will have an ever growing population of customers. I'm not being cynical, honest  -  if I wanted to be cynical I would suggest that they deliberately market something that perpetuates the problem by irritating the basic causes or causes rebounds, but nobody would do that, would they?  -  I wonder  -  no surely not  -  capitalism puts profit above all else except human suffering surely?  -  we all know and believe that don't we?
And CH is not the only illness that this might apply to  -  think about it, I don't want to !!  >:(

JoeKen wrote on Jul 26^th, 2009 at 4:29pm:

capitalism puts profit above all else except human suffering surely?  -  we all know and believe that don't we?

Yeah man, definitely, you just have to visit all the ghettos in Western cities to see the evidence...


Lefty...!

I guess my biggest concern is the fact it will be a huge government program. There is not a single huge government program I have seen that works. (And I work for the government!) Whether you're talking social security, medicare, the IRS, the horror stories abound.

For CH'ers, my fear is the government will decide the "best and most effective" treatment for us, and that's what we'll get. If we don't like it, we'll have to do what our Canadian neighbors have been doing for years when their socialist medical system fails them, travel to a country that still provides normal medical care.

Hoping I'm wrong, maybe someone can show me a huge government program that has worked, and I'll feel a little better about them taking care of me! :)

Joe

Eric and Joe,  you have said it about as well as it can be said.  I have yet to see a government program produce what was promised, when it was promised, for what it was promised.  It is always less, later, and more expensive than promised.  How many from the U.S. do you see crossing the border into Canada to get the treatment they want but can't get here.  Seems to me it works quite the opposite.

Jerry

I think cluster suffers will be studied and treated better as decades press on regardless of the reform~ simply out of efforts I see suffers make. Talking, suggesting, even laying our selves out as test rats for possible cures and safer abortives. I see it picking up in manuals and diagnosis charts more now than I did just ten  years ago. That gives me hope it will be treatable like high blood pressure at the free clinic. Thats being optimistic I know.
I worry more that we have two big issues and the reform is trying to address one. Example~ red tape for me was convincing my doctors I would follow through with treatment. They didn't want to waste their time, meds or investigation if I wasn't going to take self responsibility. We have a health issue with our people, and a health bill issue on top. Thats a big problem.

Its a needed outlook to have, but this also a huge country. I can see it more in mico elements, small sectors working together for a whole. We have so many abusers of systems, at the moment I fear a really good idea will be dissolved before it has a chance to prove itself.

I certainly don't see a huge conspiracy of drug companies and scientists trying to prevent cures from being discovered. They've cured polio, and it wasn't that long ago a lot of people died from infections before antibiotics were discovered. Those are just two examples.

Look at all the work going into discovering a cure for HIV - a disease which is *today* virtually 100% preventable on an individual basis, while also they've made huge progress in extending the life expectancy of the infected.

After starting this thread, I saw START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE in the treatments section by a UK sufferer. Here's how he's coming along just trying to get oxygen:


Quote:

Having had the Kip 10 from hell the other night, even after continually swallowing tegretol at 200mg per day and Verapamil at 480 mg per day for months with a 1 off 6ml injection of Imigran last night, I broke my hand after punching my bedroom wall due to the pain. Anyhoo, I went to "a" doctor, as in the UK you dont get your own doctor next day, you tend to get some clueless locum, filling in for doctors that know what they are doing. Unfortunately, the only GP at my practice who recognised my symptoms is away having an operation. Besides all that, I thought, "enough", I want some O2, and I'm entitled to it. The Imigran injections throw me into severe panic attacks and as disfunctional as the clusters, only longer. Therefore off I attempted to pre-analyse all the information I have gleaned from this site and OUCH.ORG in th UK and duly set off to get some help. PS: The HOOF in the UK.  ( Home Oxygen Order Form ) is now out of date and a new form has been introduced.  Also, a HOCF ( Home Order Consent Form ) is a new addition to the pen pushers. This "GP" advised that I could not get O2 on the NHS, to which I handed her all of the web info from the BNF ( British National Formulatory ), further info from NICE (  National Institute of Clinical Excellence ) and all the data I could find from Professor Goadsby. This was not enough for this alleged caring professional. To whit, I advised that the Prescription Advisor at my local Primary Care Trust, whom I contacted also advised that prescribed O2 was the cheapest and long term safest method of treating CH. But this idiot GP is sending me off for respitory evaluation, before I can even be considered for O2.

I don't even think what we have in the U.S. can even be called a capitalist system any more, not by a long shot. The government already involved very much in "the means of production" as it is. Before I blame drug costs entirely on greed, I'd check out how much is lost to things like the expense of overcoming government regulation, insurance against being sued, and that sort of thing. Not to mention research and development. There's a lot of hoops a company has to jump through to get their product on pharmacy shelves. I don't think the danger is in drug companies turning a profit, the danger is in them not being able to turn a profit - that's when they stop working for us.

What I see happening in other countries with government health care is rationing - long waiting lists for procedures and specialists, and behind-the-times treatments because they are cheaper. If I recall, Canadians can't get a colonoscopy and if they get colon cancer they are treated with a drug American doctors stopped using 20 years ago.

I can only imagine how this translates to something like CH which is rare, not directly deadly, and probably already has a shortage of specialists studying it. Imagine how much more the shortage if a supposed 40 million uninsured suddenly pour through the flood gates requiring access to doctors.

Before anyone gets all excited about "Free Health Care" remember...  there's no such thing...  The price will be paid one way or another...  

I've got TRICARE and I've been paying into Medicare since it was enacted in 1965... Accordingly, the $634 billion "squeeze" that Obama and tax cheat Charlie Rangel want to put on Medicare providers over the next 10 years caught my attention so I did some homework...  

The Federal budget for 2010 has $453 billion for Medicare and $290 billion for Medicaid...  a 7.9 increase for Medicare over 2009.  Using a straight line "Squeeze" over 10 years works out to a $63.4 billion cut in Medicare each year or a 14% decrease...

That makes no sense when you consider 35 million of the 70 million baby boomers become Medicare recipients over the next 10 years and at least half of them will need a significant level of Medicare support...  Even if you use obamamath, the number of Medicare beneficiaries will increase.

See: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It would appear ending free health care to 10 million illegal aliens and their 3 million anchor babies who will receive free health care under CHIP until age 19 would be a good start compared to a squeeze that will clearly reduce or dilute my Medicare benefits.

Unfortunately this administration and congress are not really out to improve the health care system...  They only want the power to control us and our freedom... Obama's own book calls this "Social Justice." Obama believes more in social justice than in the American Constitution and he is already changing American life in deference to principles originating out of Leftist critiques of Capitalism and of Western Society. We've already seen how he will exploit class, race and gender in order to achieve his vision of social justice... Ask the police in Cambridge MA about exploiting race...

What makes anyone think the idiots in Congress can run anything let alone our health care industry when they can't even run their own private dining facilities.
These idiots voted themselves so many free lunches their dining facility went broke and had to be outsourced at taxpayer expense... U.S. Senate's network of restaurants has lost staggering amounts of money -- more than $18 million since 1993, according to one report, and an estimated $2 million.  see: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

AMTRAK has lost money every year requiring annual taxpayer bailouts since Congress took over its operation in 1971...

The VA, Medicaid and Medicare are classic examples of single payer Government run health care that comes with a price...  Do your own homework to see if it's a price you'll be willing to pay.

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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If there are any still waiting for "free" Government run health care, perhaps you could talk with the Vets that waited months for "free" cancer treatment at VA medical facilities then received botched radiation treatments, or the Vets that contracted hepatitis B and C from blood tests at VA medical facilities, or the 10,000 Vets that were exposed to HIV/AIDS since 2003 from colonoscopies performed with improperly sterilized endoscopic equipment at VA medical facilities.

Reach out to the 57 Vets that actually contracted HIV/AIDS at the VA...  I'm sure they will have something to tell you about "Free" government run health care...

See: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It's terrible that the VA still accepts no blame for viral infections caused by possibly contaminated equipment.  I wonder how long these vets will need to wait for "Free - No Co-Pays or deductibles" treatment of their HIV/AIDS the VA offered them for free?

Take care...  and if you've not done your homework or contacted your Congressmen to tell them what you think about their proposed "Affordable" health care...  BOHICA

V/R, Batch

Callico wrote on Jul 27^th, 2009 at 1:38am:

How many from the U.S. do you see crossing the border into Canada to get the treatment they want but can't get here.  Seems to me it works quite the opposite. Jerry

LOL - thousands of bus loads of US citizens go to Canada every year to buy meds.  There is often a wait for non-emergency surgery, but Canadians get decent health care (and live longer than people in the US, in spite of the cold!).

People everywhere grumble - and the Canadian system is not perfect. But 70 to 80% of Canadians are satisfied overall ... much higher than in the US.

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Monty,

Compare apples with apples.  I'm not talking about prescriptions, but about the health care itself.  6 months wait for breast cancer treatment is not unusual in Canada as opposed to days here in the States.  (Just one example)

Jerry

Monty that very small general life expectancy difference is meaningless and has no obvious correlation to differing health care systems.

Here are some more meaningful numbers that do reflect the results of rationed government health care:

In Canada the cancer death rate is 16% higher than in the U.S.

The colon cancer rate in Canada is 25% higher than in the U.S. because they can't get colonoscopies in Canada.

Once you do have colon cancer in Canada, the death rate is 41%. In the U.S. it is 32% - probably because we don't have to wait so long for treatment because we have more treatment facilities per capita. Cancer patients here don't wait 8 weeks to begin radiation therapy.

The Canadians who are happy with their health care are the ones who haven't been seriously ill.

As for the reason meds are cheaper in Canada - if memory serves, its because Canada threatens the drug companies to disregard their patent and reproduce the drugs if the drug companies don't agree to sell the drugs in Canada at prices Canada wants. I wonder what that does to the prices of the drugs in the U.S. Remember that part of the reason they're as high as they are here is hoops our government makes them jump through in developing the drug and getting it approved.

1968eric wrote on Jul 27^th, 2009 at 11:24am:

As for the reason meds are cheaper in Canada - if memory serves, its because Canada threatens the drug companies to disregard their patent and reproduce the drugs if the drug companies don't agree to sell the drugs in Canada at prices Canada wants. I wonder what that does to the prices of the drugs in the U.S.

No, Canada has never threatened to ignore patents, as far as I know. What they do is negotiate for price - if there are 15 different medicines that can be used to treat blood pressure, they may decline to carry one of those if the manufacturer won't offer a bulk discount.  At the end of the day, Canada has plenty of medicines for controlling blood pressure, and it costs less.

Prices for drugs in the US are not much affected by what Canadians pay -  the fact that one person at a market haggles for a good price does nothing to harm or protect the next guy who comes along (especially when the second guy is obviously willing to pay whatever the vendor asks).



1968eric wrote on Jul 27^th, 2009 at 11:24am:

Monty that very small general life expectancy difference is meaningless and has no obvious correlation to differing health care systems.

What?  A 3 year difference in lifespan is SIGNIFICANT.

Multiply that times 300 million people, and it is VERY SIGNIFICANT. Would you rather be born as an average person in a country where the lifespan was 65 years, or in one where the average lifespan was 70 years??  

How much of that 3 years is related to the healthcare systems?  That is difficult to say ....  But what is evident is that Canadian society has managed to achieve a very long lifespan, they spend less, and people do not lose their coverage due to pre-existing conditions or unemployment.



Quote:

In Canada the cancer death rate is 16% higher than in the U.S.

And what do you assume that means?  Kentucky and Louisiana have a cancer mortality rate that is 65% higher than Utah and Hawaii. Even though Blue-Cross Blue Shield offers similar policies in all four states. What you are missing is the fact that the death rate from cancer is primarily driven by how many people get cancer in the first place - some types are treatable, but many types are not.  More people getting cancer = more people dying of it.

What happens when we take cancer data and pool the Canadian provinces with the US states?  The 60 states/provinces blend together with no national differences to comment on.  Ontario and Saskatchewan are right at the average for the large group, British Columbia and Alberta have rather low rates, and the Maritimes are on the high end with Tennessee and Alabama.  Only Nunavut (with a few thousand Innuits) has a remarkably high cancer mortality rate.  

Check it out - the last two pages of this document:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Looking at that data gives a very different picture from the cherry-picked statistics you presented.


Quote:

The colon cancer rate in Canada is 25% higher than in the U.S. because they can't get colonoscopies in Canada.

No - that is a misleading statistic and a dubious conclusion. That '25%' difference cannot be used for comparison ... 12% of Canadian cancer deaths are from colon cancer, while 10% are from colon cancer in the US, which can be rendered as '25% more.'  But those are RELATIVE percents ... if less people die from lung cancer, the percent of deaths from colon cancer would increase, even if the number of people dying from colon cancer remained the same. Comparing across groups in that way is an apples/oranges comparison ... the 10% makes sense only when discussing US numbers, the 12% makes sense only when discussing Canadian numbers ...

Are some doctors in Canada pushing for more colonoscopies? Yes. Do they currently have the infrastructure? No, it would have to be added. Is early screening and treatment a good thing? Only sometimes. Colonoscopies are far more invasive than other cancer screening tests, and have a complication rate that is 10x higher than other routine tests (a friend's father died of a torn membrane from a colonoscopy).  Doubling the rate of colonoscopies will not cut the death rate in half, but it will double the number of serious complications.  We don't have people jump up on the x-ray machine for every cough and cold ... the risks are higher than the benefits.  


Quote:

Cancer patients here don't wait 8 weeks to begin radiation therapy.

Quote:

6 months wait for breast cancer treatment is not unusual in Canada as opposed to days here in the States.

Average wait for radiation therapy in breast cancer is 40 days in the US, 73 days in Canada ... sounds bad, yet Canadian women have a lower death rate from that disease.  I know if it were my wife or daughter, I would want to maximize chances of survival, not minimize wait (even though not doing something can be emotionally excruciating).

Likewise, with prostate cancer (#2 cancer killer of men), 'watchful waiting' often makes more sense than rushing to surgery or radiation. The cancer may be very slow growing, and a long wait (which adds to the average) doesn't change the risk of dying or surviving. In an older person, surgery may pose a greater danger to life than doing nothing.

People that have advanced cancer are probably already gone. People that have early, treatable cancer need prompt treatment, but not immediate treatment.  Is the one month average wait in the US too long?  Is one week too long?  Two weeks too long?  What about 3 or 4 weeks?  Emotionally, yes, that seems like a long time. Medically, it may not be.



Quote:

I'm not talking about prescriptions, but about the health care itself.

 

What is health care itself if not Diagnosis and Treatment? Prescription medicine is a big component of Treatment, and it is one that sends many thousands of people over the border into Canada, where that component of treatment is better in several ways.  When millions of US Americans have to choose between food and medicine, that DOES impact health care itself. When hundreds of people post to this board that they can't afford medicine, that is an indication that the health care system has some real shortcomings.

I believe I have the same CH as most of you.  I do have it somewhat more acute
than most of the “normal statistical” sufferers... I have ICCH and it’s been fully diagnosed by the neurological institute at KSSG (St. Gallen, Switzerland) and very well documented....  

I am not going to engage in the right or wrong in the healthcare system in the USA,
as it is a minefield.... and loaded with political and emotional opinions......

this board is the wrong spot for this type of dissection...

As to the bashing of the pharmaceutical industry... I believe some have a very twisted and uneducated opinion.... based on emotional and subjective opinion!

I am grateful for the pharmaceutical industry... they have helped me in more than just one way!
I believe they have also helped many on this board in more than one way...

I work in R & D (Research & Development) and I know what it takes to get a new idea from the drawing board to a completed design, and that is only a small part of the process...  There test and acceptance procedures to develop, technical trials, validation, approvals by authorities..... marketing... and all this is a very tedious processes and very costly.....  It is even more complicated in the development of pharmaceuticals.

and not every one of the ideas ever gets to be a product.....  and that is also a very costly process and long... with many set backs...  and not to forget the American national sport... litigation... which requires many of the companies pay high premiums...

It is simple to run and call, it is the pharmaceutical industry that is out only for profit...
Yes it is a business.... a big business... and it is not wrong to be good at what you do!

If you only look at the profits, you’re only looking trough a very myopic lens, what you would like to see, and justify your own emotional and subjective opinion!

How many persons on this planet are alive today, simply because the pharma industry developed a good and comprehensive treatment to many types of cancer..... or for very banal situations... back-pain.... headaches... or a simple cold...

As to political / economical observations...  do this observation have any thing to do with Cluster Headache Help and Support or Cluster Headache Specific?

so I am ignoring dogmatic statements… will gladly engage in a polite and constructive discussion on the General board…

Just today Bob Johnson and Friedrich Fuchs posted a about a very interesting subject…  Frovatriptan for the treatment of cluster headaches… very interesting and promising…

dose any one believe we would be looking at (m)any studies and / or clinical trails for us….
for CH….  with out the pharmaceutical industry...... or the financial support from the
pharmaceutical industry......

I am graetfull for the “engagement” of the pharmaceutical industry.... in research and development
and if they make profit along the way... good for them... they are a business, and every business is out there to prosper...

One exception to the profitability.... the excessive payments to the executives...
but that is some thing we in Europe imported fro the USA... and I don’t have
an answer to it.... I have an opinion....  it is non relevant to this post...
but it is a social disproportional compensation....

Michael