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Topic News article on the social and financial cost of diseases of the brain/central nervous system Go to previous topic Go to next topic Go to higher level

By susger8 On 2011.10.05 08:06
http://www.reuters.com/article/2011/10/04/us-mental-europe-idUSTRE7931O320111004

We've had some discussions here about how medical researchers need to pay more attention to PD -- this might be of interest. The author says the impact of CNS disorders is greater than cancer or cardiovascular disease.

Sue

By karolinakitty On 2011.10.05 08:46
Interesting....what they don't talk about is the availability of certain drugs to those in certain countries...
Through my FB page on PD, I have met some in Europe who can't even get the drugs they need...they have to become smugglers, and pay outlandish costs, because their governments won't approve the drugs for that country. It's sad that it's a world where people can't get the medicines to aid them....

We all know what our drugs and care costs are. So many in this disease have lost so much due to the cost, both the medical and compulsion side of things.....CNS disorders, I think, are overlooked because it is such a broad spectrum....maybe researchers need to narrow it down or categorize them differently, maybe that may help in the research...I don't know....

By susger8 On 2011.10.05 09:20
European countries control the prices of drugs, while in the US we don't. This means that in each European country, the government negotiates with the manufacturer what the price will be. Sometimes the negotiations take a very long time, which delays the drug from being launched. Sometimes they don't reach agreement, and the drug is never marketed. And of course, in the UK they have a decision board called "Nice" which evaluates whether they feel the efficacy and novelty of the drug is worth the price...sometimes they don't approve a drug to be marketed.

In the US we have wide availability, but we pay a high price. It's a tradeoff.

To comment on your second point, the CNS is such a difficult area in which to do research. Less is known, the complexity is high, and there is a lack of ability to measure the disease effects directly and objectively, the way you would measure blood pressure or tumor size.

Sue

By LOHENGR1N On 2011.10.05 19:49
Whoa! Hang on a minute....these articles and the like are made to skew what the Authors want. Of course if you take and lump and I quote from the article start; "and the region is facing a political, social and financial "ticking bomb" as more people fall prey to mental illnesses, researchers said on Tuesday. such as depression, anxiety, insomnia and dementia, will rise as people live longer, making it "the number one economic challenge for European health care."

Lumping mental illnesses in with Parkinson's Disease and other cns and or movement disorders shouldn't be passed by or read over by Anyone suffering with PD or anyone who has family effected by PD. NOR should one not mention or take exception to PD being referred to as a chronic disorder or disease. Oh they've got chronic PD? Excuse me? I've been pushing for years to get people to recognize Parkinson's Disease is a fatal disease. Perception is paramount in funding. When are people going to realize this? How much credence and serious research would have been given Cancer, Aids or Heart disease if they carried the term chronic? Chronic is lingering, so it could fit each of the fore mentioned diseases along with Alzheimer's Disease. And now to see an article combining Parkinson's disease with Mental Illness and the unjust stigmas attached to that term? To combine under the same umbrella? Twenty five years ago Parkinson's Disease was the most understood of brain disorders with funding wonder would occur, now lump it in with all these disorders and suddenly they are the least understood and most costly give more money for research? It seems to me the only one's who aren't cut any break or given do-overs are the ones afflicted with Parkinson's Disease and those caring for them.

If this is meant to give hope about more attention paid to researching for a cure of Parkinson's Disease in my opinion it is cause for more concern of Parkinson's Disease losing ground and more stigmas being attached to it other than oh it's just tremors and shaking or chronic? Instead of two steps forward and one step back we seem to be taking leaps backward with no forward progression. I guess it's true if it isn't happening to you personally it's trivialized. I'm sorry but I'd trade a chronic backache for my FATAL Parkinson's Disease any damn day!

By gap2010 On 2011.10.05 21:46
Lohengrin, thanks so much for your response!! I totally agree...Parkinson's is NOT a mental illness and should not be classified as such. The article totally scares me as a caregiver and for my husband as all it's talking about is the cost...not how it is so destructive the person and the family. Something must be done, yes, but what are they inferring in this article? I don't like the theme of this article at all. So thanks again for your response.

By karolinakitty On 2011.10.06 07:31
I have to disagree a little gap.....
It's not that Parkinson's IS a mental illness, as it truly isn't, but, on the other hand there is and can be dementia and depression associated with it, which are mental illnesses. However being lumped into one big category like Mental Illness, puts PD on fast track to nowhere.....It's like lumping them in with the sleep disorders...you could say PD IS a sleep disorder, most PDers just don't sleep "normally" but then neither do cancer patients or those with fybromyalgia, but those aren't sleep disorders, nor do they get lumped in with them....

I found the "funniest" thing in this article was they they are still lumping it in with "old age". Several of the European folks I know are YOPD, one of the biggest research countries with YOPD is Hungary. They have some of the better drugs and most researched when it comes to the YOPD category.
I have to wonder that through this article, by lumping PD in with mental illness and old age if we aren't going back to a time when those with mental illness and old age disease were put in sanitariums to just fade away and die. We can't afford to treat them properly so lets put them away so we don't have to.

If investing in research for PD becomes a stigma for money thrown away..then we will never find a cure....and of course...we have to realize that YES..there are more and more people with PD but why? is it just population growth OR is there an environmental or chemical or gene that is causing more to have it....

By susger8 On 2011.10.06 07:41
I thought it was fairly clear that the article was discussing all CNS-related conditions, which include both psychiatric conditions and neurological conditions like PD. But maybe that's only clear to me because I work in that field.

I certainly consider PD a neurological condition.

Sue

By gap2010 On 2011.10.06 08:27
Sue and KK, I want to apologize if I upset anyone, I just get somewhat defensive about my husband and his condition. The thing that upset me the most in the article was the talk about the cost...and something needed to be done, but no suggestions. That spoke to me that they were saying people with these conditions are a burden to society and need to be put away (like you said KK) that is not acceptable at all. It is also not an just an "old person's disease" because if that were the case many of our loved ones would not be dealing with this at such a young age. I truly hope a cure is found one day...that is what I pray for. Hope all of you have a "on" day today! :)

By karolinakitty On 2011.10.06 08:34
gap... you didn't upset me at all.... i agree with you but only 99.9% ....hehe

By LOHENGR1N On 2011.10.06 08:52
Sue, You work in the field and you certainly write as if you do. I've noticed when you write about Parkinson's Disease you refer to it as a condition, you refer to it as chronic. Interesting also is you don't personalize it. No my "Dad's condition" not any thing like "My Dad's chronic Parkinson's, in fact you rarely include Disease with Parkinson's. Also it was clear that the article was discussing all the psychiatric and neurological DISEASES! Maybe if Labs would humanize these diseases there would be more of a push for them to do their jobs and find the cure funding is supposed to be going for and not excuses. Please don't underestimate the understanding of the in's and out's of this disease here on the forum. We're battle hardened veterans with firsthand experience and I for one am tired of end runs by those trying to justify the misuse of funding by research companies.

By susger8 On 2011.10.06 09:02
Lohengr!n, that's an interesting observation, and I wasn't aware of de-personalizing PD. That's probably me putting on my scientist hat, because it certainly does affect me personally.

Some people with chronic diseases prefer to refer to them as conditions, because the word "disease" can carry a negative connotation of sickness and debilitation that they feel doesn't describe them. So I guess I have picked up that habit. But I realize that from a viewpoint of wanting to get the medical community involved and engaged, the more dramatically debilitating the disease, the more people may get on the bandwagon to fight it.

I thank you for your viewpoint! You always help me see things from a different direction.

Sue

By susger8 On 2011.10.06 09:18
I'm sorry karolina, I wasn't intending to talk down to anyone. I apologize.

It is a fact that the CNS area is difficult to work in, and that many companies are pulling away from it. I think the article was pointing to the need to continue research, and the "time bomb" metaphor was probably intended to dramatize that. Yes, the medications are expensive, and I've found myself saying "Darn those drug companies with those expensive drugs!" even while working for a drug company myself. But the medications are far from the only cost associated with PD or other diseases. The lost value of the lives that are interrupted or cut short...the inability to continue to work, both the patient and the caregiver...the depletion of life savings... the emotional effect on the patient, the spouse and the children...all these have a huge social impact as well as a financial one. This goes for psychiatric illnesses as well as neurological ones. People who don't have experience with CNS-related diseases often don't realize the impact they have. Migraine, what's that? "Just" a headache, big deal. Well, it is a big deal! So are PD, MS, epilepsy, Alzheimer's, ALS.

So to me the point was that CNS-related diseases, including PD, are often overlooked by the general public, in comparison to cardiac diseases and cancer, but that it is to the benefit of all to promote research and awareness in this area.

Sue

By mylove On 2011.10.06 09:22
I'm sorry to have to jump in here, but I agree with Sue. She posted an interesting article, and I'm glad for anyone keeping us informed of any and all things that we may have missed. Because PD IS a neurological disorder, it was appropriate here.

I read the article. Like most articles, it was written to address one specific topic of interest. In this case, researchers have identified that neurological disorders, in the large scale, have the most economic impact. They also noted that it was going to be a larger challenge as their population ages. You'll also note that the study and its results were done by epidemiologists - who study the large scale impacts of particular diseases on the general population - and health economists - whose job it is to apply that knowledge to economics. The article covers that really well, and I found that interesting.

They aren't applying the findings - which is all it is, a report of findings - to the individual or personal scale, because that wasn't the purpose of the article or the study. Everything can't be about the individual. We need these groups to continue to work on how neurological issues relate to the big picture, because the more we understand about how they fit into that picture, the easier it is to say that more effort needs to go in one direction or another. I'm actually encouraged that they looked at this and said "Hey, this is a big problem - bigger than heart disease or even the big C, and we think that more people are going to have it in the future. Maybe we should let the people in control of how they distribute research funding know that THIS is the direction they should be looking at."

There's a lot of angry talk here about funding, and the speed of a "cure". I totally understand that it's a personal issue. But you have to understand that for most of the field of people involved in decision making, it's NOT. And that's okay too. But every time we get a new piece of info on new research or the possiblity of new treatments, we can't continue to react angrily and shut down or shut out those ideas because they aren't a full fledged cure. I'm happy that we're making progress. I know it isn't fast and I know we aren't there yet, but we ARE making progress. And that's encouraging.

I have been pretty quiet the last few threads that got snippy about how new treatments should just go away because they weren't a cure, but I'm here to say that I'm thankful for ANYTHING that will improve my love's quality of life. That's a step in the right direction. Let's keep the personal on the personal threads, and the intellectual on these research ones. And for those of you posting new things as they come up, please do! I want to remain as informed as I can be. For those of you who want to campaign for increased and targeted research, PLEASE DO! You benefit all of us. And Sue - please keep chiming in because I'm interested in hearing it from another perspective. It helps us understand how the process works, which makes our jobs easier.

By LotsaBob On 2011.10.06 10:41
I find this whole subject offensive for me personally. If I hadn't been exposed to AO(agent orange) I would not be on this blog and I probably would not have "Parkinson's Disease", "Dementia" or any other neurological disorder. I'm not a "Looney tune" either. But I have to agree with Al, that since I do have PD, it seems to me that PD is put on the back burner as far as funding goes. Of course, I could be way out of line on this. If I am let me know..........

By karolinakitty On 2011.10.06 11:07
mylove... I think I can agreeably disagree with you on one aspect.....we've known each other long enough i believe...

I don't want to settle for ANYTHING that comes along...now since I am fairly newer to this than some, I have to say that Pders for way too many years have settled for anything..the hope gets elevated and then the let down comes when it doesn't work as long or has serious side effects. I don't look at it as a step in the right direction only because they single out symptoms rather than focusing on the disease as a whole. I understand that certain symptoms are more irritating than others, but they are also the ones drawn from the stigma of this disease....

By mylove On 2011.10.06 13:12
KK, I understand what you're saying. I just hate when we dismiss things out of hand. I know there's some here that would not choose DBS, for example, but for others, it works and is a viable option. Some of the digression just feels like throwing the baby out with the bathwater. I think it's a given that we're all urgently seeking the cure. In the meantime, things that make our lives *better* while we go through it are definitely a blessing. A tweak to a medication that makes it an extended release vs one with wild on/off swings up and down? Heck yes, we'll take it! It's increased the quality of his life tenfold. I don't want them to stop making better ways to help some of the symptoms while they're working on finding a way to cure it altogether.

I just feel like some of these threads devove into Godwin's Law-type discussions.... only instead of Nazis it's research and money and politics.

By packerman On 2011.10.07 13:08
MyLove, thanks for the validation.
Sue, thanks for sharing your medical viewpoint.
All others, thanks for sharing from your personal vantage point.
Pat

By parkinit On 2011.10.09 11:12
Kate Kelland. There is a link on the initial article link. She is the author of this article. Write her about your disgruntlement. She took a satellite view and lumped several ailments/diseases into one category. That was preposterous to begin with and it obviously struck a chord in many of us. She lumped where there shouldn't have been lumping.

I disagree with drugs that are widely available in the U.S., by the way. We finally found a doctor here in the U.S. who would write us a script for Neupro, a drug not available in the States, so that we could get it . . . overeseas . . . since it is was removed from the shelves here for a "simple fix" per my chemical engineer spouse several years ago. It has been extremely beneficial to my spouse and has made him somewhat mobile again.

By mylove On 2011.10.09 22:00
...Except Kate Kelland just wrote the article. She didn't do the study that she quoted. Read this paragraph again: "The study looked at more than 100 mental and neurological disorders -- ranging from headaches, migraines and sleep disorders to strokes, Parkinson's disease, psychotic disorders and dementia -- and described their economic and social impact as "immense and expanding."

The study was done by the European Brain Council and was backed up with quotes from the World Health Organization. A better suggestion would be to take it up with them.

By karolinakitty On 2011.10.06 09:01
Sue...I understood PERFECTLY that is was encompassing all CNS diseases...that is the point...perhaps OUR explanations were not as descriptive as they could have been.....

If they are looking at all CNS diseases...putting them all in the same category as "immense and expanding", that costs for these would be an issue as time goes on...then that is our/my point...

If companies like GSK and AZ back off from investing in research for ALL CNS disorders then where are we?????

If Parkinson's disease is lumped in with migraines...and I suffered from these...that to me is unfair... I treat my migraines naturally, I don't need drugs...and have been desperately seeking natural remedies for my guy, but, i would take a migraine any day then to have PD...

Then to say:
"The increasing burden and the associated increasing cost of disorders of the brain is a ticking bomb under the European economy and the EU society as a whole," said the report by experts in Britain, Germany, Italy, Sweden and across Europe.

this is where i am terribly offended by this article....they say time and again in this article about the burden of costs for treating these diseases... well no kidding... who makes the burden and the costs so high... not the people with the disease but the medical profession and the drug companies...this is where the extreme costs come from...

Diseases like PD, ALS, and others will get lost in the shuffle of categorization...and stigma......

And yes, I was offended by you talking down to us like we are some dummies, that didn't help your cause...but I will get over it......


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