Something soccertease said really hit home with me....and it is scary if carried to its potential. He was referencing cancer and how they have turned it into a "manageable disease"-I do not want PD to be managed, I want it to be cured! Management just means taking more drugs, participating in treatments, going to see doctors and/or "case managers", which conveniently translates into a boatload of money for those selling the treatments until we die. A cure nips that oh-so-profitable annuity right in the bud. Sure, a ton of money would be made off of a cure, but how much more money would be made if the millions of sufferers with PD (and fill in the blank here-Alz., MS, etc) instead were "managed"? I cannot even calculate that high-they are estimating a PD epidemic in China alone in the coming few years of millions of people.

Diabetes is a great example. It has been funded very well for so long, but still is a "managed" disease. I personally know several people who have "cured" their diabetes by losing weight and exercising....so why no cure for this condition? Because it is vastly more profitable to treat people than it is to cure them. You cannot turn the TV on now without seeing at least one commercial for diabetes drugs to be delivered right to your door....what does that tell us?

However hard those dedicated researchers work to find a cure, and there are many, they are going to have a hell of a time bringing it out because pharma and the media and those in lock-step with them (forgive the analogy here) are going to resist it until it is no longer possible. Those who hold the newest technologies are known for holding on to it until they have milked the most out of the lower generation, and sadly, it seems like this industry is no different.

I don't want to slam those working so hard to help us, but do see the points being made. It is hard not to feel frustrated with the pace of research, particularly when you look back in time and see how those who have thought outside the box have historically been villified and even scandalized, only to be proven right.....decades later. Again, what does that tell us?

I'm sorry, but I don't buy for a minute the paranoid "they don't want you to have access to the cure" I see in this and other health forums from time to time for chronic diseases. That's scare-mongering, pure and simple.

I know many researchers and I know some people who work in pharma. Nobody is withholding any secret cures for any diseases because it is "more profitable" to just provide maintenance therapy.

The PR bump and the sheer amount of money one would make for curing any of these diseases -- especially cancer -- is immeasurable. It would be the equivalent of inventing aspirin.

Researchers don't like to stop at "Oh, this will help maintain you at your present level of functioning." They know that's not equivalent to a cure. And most are so passionate about their life's-long work, they will keep on it until they find the answer or have to retire.

I also tire of people comparing apples and oranges. Mechanical, technology and space engineering has little in common with medical research. So while it is indeed quite spectacular we put a man on the moon, it really has no bearing on the fact that diseases like cancer are so difficult to cure. We still are only at the cusp of beginning to understand our brain, our most important organ. How amazing is it that we even have treatments for some of these things when we only have a cursory theory of how the brain works??

Again, I understand the frustration with the pace of research and the feeling that more money would solve everything. Money helps, but at the end of the day, it's just one part of the equation. Look at all the money spent on cancer research over the past 3 decades -- billions. And still, no cure -- and many of the treatments are only somewhat better than the cancer itself.

DocJohn

lurking, i'm sure anyone with incurable cancer would luv to have a manageable disease until a "cure" was found. i know my brother who suffered a terrible death from lung cancer wouldn't have objected to a daily pill to keep his cancer in check. it just ain't that easy with cancer since it is caused by many different cell mutations and in some cancers is caused by the overproduction of a protein and you can't just stop the production since it would kill all cells. sure it's better to prevent/manage diseases thru lifestyle changes and find permanent cures but i'd settle for better management as an interim step rather than wait years for that magic bullet.

as an aside, in washington state we are seeing a huge increase in whooping cough diseases, much more than would be expected since 77% of the population is vaccinated. it's thought that the new vaccine is less effective so we have a serious healthcare dilemma developing here. an example of how complicated a "cure" can be.

St, good points as always, I just hope that the real goal is truly "cure" rather than "better treatment" for as long as possible. Seems like an awful lot of research $$ in PD is spent on me-too drugs (how many versions of levodopa have been studied? and still are!), or on side effects of existing drugs (thinking of dyskinesias here, so many things studied for that...)

I hear both sides on this but honestly, it is hard not to wonder when I am in the car and am now hearing ads for hospitals and regional clinics and diagnostic centers every hour....never ever used to hear the push to come in and get tested for this, that, treated for this, that. I am now even seeing billboards advertising medical services and facillities. This goes way beyond pharma's massive advertising that is on every other page of most women's magazines and it does make we wonder. I don't really think this rises to the level of a conspiracy, which would require an actual overt agreement on the part of the pharmas, but I think it would be naive to ignore the vast amounts of money that would/could/are being generated by the burgeoning population of the chronically ill. Like Laura said, it is a huge, huge industry.

Civil discourse is good, and I for one appreciate everyone being allowed to courteously put forth their thoughts.

can't argue with you that the profit motive in healthcare has as much bad as good.

one subtle goal of the affordable healthcare act is to increase preventive medicine and eventually base reimbursement based on outcomes and prevention. gotta spend money to save money in the long run. when that happens, maybe GP's will get paid as much as specialists. and doctors won't have to worry so much about paying back student loans.

i have to agree that after all these years it is surprising nothing has been found to slow down the progression. it can't be because of the profit potential because likely the treatment would be a pill you'd have to take daily or at least wouldn't be a one time vaccination.

this is a great thread -dialogue with people in the "know" sitting in the other chairs at the table.patient advisory
members could be filled with less agenda and boldly communicative and educational.

Doc John you must have wanted to get those things off your chest for a long time. please understand that it's lack of more communication with researchers and business people that eventually turn patients into angry criticizers.

It's been over a decade since the pipeliners started what the larger orgs are finally doing. we nagged - we criticized - we changed the world of pd research over gdnf. but we can't get the regular communnication that would make us be able to help instead of criticize. and we are not acknowledged - it amuses us.

now - a question about gangliosides. i didn't even know they were still around ? weren't they canceled or sold by amgen? didn't they talk about that trial on brain talk or do i have the wrong drug.

remember elvis, tom819, bernie? same drug?

pdpipeline.org

[QUOTE=lurkingforacure;918729] I cannot even calculate that high-they are estimating a PD epidemic in China alone in the coming few years of millions of people. end quote

China is notoriously bad at gathering statistics, but I have had several years of regular contact with a PD neurologist at the Red Army Hospital in Shanghai (I used to get around)
He said official statistics in China underestimate the problem; China has a massive problem of people getting old; this is a nation of 1.3 billion people... his neuro-researcher was going around opening PD clinics in China, and getting health workers trained,,

His own estimate - this is a scientist -researcher with the money and power to open new pd clinics by the hundreds, with future planning using an estimate that when the wave of retired people hits China, he expects there will be 30 million PWP in China
He said the government is somewhat freaked out about this. They opened - last year - the largest synemet factory in the world (brilliantly located in an earthquake and tsunami zone, so the whole world could be within sinemet this afternoon, and although we keep billions of barells of oil in storage for emergencies, there is NO CONTINGENCY PLAN for interruption of supply of drugs, anywhere in the world)
He said China is pouring money into PD research, and much other medical research, and they intend to become the world leader in medical research and the manufacture of all things medical, to be exported around the world.

That is not an official estimate; there is no official estimate, but this multi-phd neurologist with a vast budget from the Red Army and from the communist / crony capitalist government itself, at their top level of PD research, has told his government to figure on 30,000,000.
Something is going to snap. Something will happen. It will be taken seriously, when you get 30M needing care.

If this does happen, we won't have any specialists anymore.....or, gulp, not many who are any good. Who in their right mind would spend extra time and $$$ to become a specialist, assume legal liability to be held to that extra-special standard of care (no mention of medical malpractice reform in that new health care bill, that I have seen), if he/she is going to make as much as a GP but no more? We already have specialists leaving their fields now because "it's not worth it", speaking here mainly of OB/GYN where liability can be very high...and sadly, one of our neuros who was excellent if not a tad rough around the edges And many docs in my area no longer will take ANY insurance, much less medicare/medicaid. They are going strictly private-pay, which will restrict access for sure. Sorry, I just noticed this has gotten OT!

i didn't say specialists salaries would decrease, i implied the value of GP's would go up plus since universal coverage is going to theoretically require more doctors - no guarantee that will happen unfortunately - they are going to have to subsidize their education to attract more students and expand medical schools instead of stealing doctors from overseas.
these problems have been addressed in germany which has primarily private insurance, from what i understand, medical education is virtually free, insurance companies have 48 hours to pay a bill, insurance companies are regulated like utilities, fees are set do doctors know when and what they are going to get paid which in the u.s is just a game of overbilling because if you bill what you expect to get the insurance companies will just lower their reimbursement, thinking your costs have come down. doctors don't make as much in germany but they also don't have the overhead.

Sounds great, but gotta add: germany also has a "loser pay" legal system so that if you sue your doc/hospital/nurse/radiologist, etc. and lose, you have to pay his legal fees/costs of defense. Makes one really thing about whether their claim has true merit or not, eh? We don't have that here in the US and thus lawyers have no disincentive against filing questionable and sometimes downright frivolous lawsuits which must be defended against. to make matters worse, we have the contingency fee system which allows attorneys to take a percentage of the recovery if there is one, which IMHO puts the lawyer in a conflict of interest position. I could go on about the system we have but that's too OT, just wanted to point out that without a loser-pay legal system, I dont' think what Germany has would work.