from: Pharmaceutical Business Review Drug Discovery and Development

The neurodegenerative disease market saw few major announcements at this year's recent American Academy of Neurology conference. While the Alzheimer's disease field must wait until next year before efficacy data from late-stage pipeline drugs are released, Parkinson's disease announcements were restricted to post-marketing studies designed to reposition treatments or protect vulnerable franchises.


Sigh.

I know: go ride a bike, go dance, do some brain teasers, box, think loud (or speak loudly), eat right (not "that" kind of right, but "this" kind of right), call your congressperson, do aerobics, be optimistic, practice yoga or tai chi, rah rah rah.

Yeah, but sometimes ya gotta wonder when the most positive results coming out of research seem to be increasing your "ON" time by 1 or 2 hours a day or taking one pill in place of two. Do these pharma companies share Wall Street's idea of what a balance sheet between responsibility and private profit looks like?

I know we are supposed to be understanding of the complexities and cost of developing treatments for PD, but is it really so hard to make headway on getting treatment for this disease? Or are there preoccupations and compromised priorities or conflicts of interest that take precedence? Such as "post-marketing studies designed to reposition treatments" or protection of "vulnerable franchises."

Is it my responsibility to always look on the bright side? Always be positive? Sometimes I feel that it is my responsibility to point out that it is raining pretty hard on both sides of the street.

Yes it is frustrating.

I think the lack of progress is due to the fact that we are finally figuring out that we really don't know what Parkinson's disease is. Can't cure or treat it unless we know what it is.

Upcoming, long range biomarker studies at PDF and MJFF will help break this log jam - but it might not help our current cohort of sufferers.

So -------- back to the pool, meditation, and whatever else keeps you moving and sane!

I totally agree with you (and love the way you put it, aj). I have felt very "slighted" by the pharmaceutical companies of late. PD has turned out to be a bit moroe complicated than "just a motor deficientcy disorder." That and the low numbers of 1 to 1.5 million in the US has caused interest to dwindle (which we have no idea is accurate or not). We have discovered that the mainstay therapy (dopamine replacement) may not be the treatment of choice today, but for now it's all we've got.

Well, WAKE UP, Big Pharma! You can have a blockbuster treatment if you get your act together. We KNOW we have 80 million babyboomers turning 60. If even half of that number is diagnosed with Parkinson's, think of the need for management of this disease.

We're so scattered now in PD research, which is some ways is good, as it provides more options, but in other ways it has caused the interest to wane. We need biomarkers. We need less reliance on L-dopa, whose side effects can be as debilitating as the disease itself. We need more than another agonist or MAO-Inhibitor or whatever. And we shouldn't have to do invasive surgery to correct this dopamine deficiency. We're talking about cutting and drilling on the organ that is the control center of our entire body!

I'm open to discussing what we should DEMAND to happen in research. Where do we start if doctors feel a 40-year-old treatment is the best they can do.
GRRRRR!
Peg

am i alone in wishing that there was a committed multi-therapy approach to PD in which medication, surgery and scieince were not the major focus of research. by this i mean that there is so little emphasis on QOL (quality of life) amid all those astronomical amounts of money spent on research. it is my belief that multi-therapy should be embraced for whatever interim period there is between now and the long awaited cure. we are here now, with all the things that pd brings, and where are the dieticians, physical therapist, movement experts, the people who know how to help put in place strategies for things like falls prevention, overcoming freezing, preventing malabsorbtion of medication and a whole host of other things. it seems that all these things we have had to go out and find for ourselves, piecemeal and haphazard, word of mouth . ....... the biggest issue in PD is QOL, or it is from where I stand. i am struggling to find ways and means to stay mobile, engaged, and healthy in the wider sense, so wish that the medical staff who deal with me had more to offer than bed rails, evaluations and pills.

sorry, my grumble for the day
lindy

There is nothing I would like better than to see a research-backed approach to improving quality of life in Parkinson's, and not just aim at improving "quantity" of on time. The fact is, however, that once you have been on the medicaton regime as long as (for example) Paula and I have, there aren't a lot of options. I know you didn't mean to suggest stopping medications, because stopping the meds could literally KILL us, or maybe even worsen the disease to an irreversible state.

There are places and studies that are taking this alternative "team" approach to treatingn PD. Indigogo can share with us about such a place in her neck of the woods, the Northwest Parrkinson's Foundation in Seattle. Bill Bell, the CEO, keeps in close contact with patient needs. And they also have a clinic where you receive a thorough evaluation and have a program designed especially for you. below is some information; for more, visit the website www.nwpf.org

The Northwest Parkinson's Foundation is a nonprofit organization established to improve quality of life for the Northwest Parkinson's disease community. We achieve our mission through programs of awareness, education, advocacy and care.

In addition to producing educational resources, providing support to patients and caregivers, and advocating on behalf of Parkinson's families in our region and beyond, we are a partner in the Kirkland, Washington-based Booth Gardner Parkinson's Care Center, which we co-founded with Evergreen Healthcare in 2000. This facility, a regional center of excellence in the treatment of Parkinson's disease, houses Parkinson's-specializing physicians, neuropsychologists, physical and occupational therapists, speech and swallowing therapists, counselors and educators.

To be involved in our effort to bring quality of life to the Northwest Parkinson's community, please email us or give us a call at 1.877.980.7500.

I believe more facilities such as this would be greatly helpful.
Peg

til we are able to surround the capital with shaking bodies we are going to have to be content with research "table scraps". No one believes me though.
We started and the ideas got talked to death....remember??
We are all "dead men walking" and its our own damn fault........
Not to worry though Obama will save us.....or is it the Republicans....
Charlie

All I know is that I am walking more and more like Tim Conway on the Carol Burnett show while the same old, same old medicines are being "tweaked" to little or no avail. I have two goals: eliminate gluten from my diet and buy some carnosine. Who knows? My approach may get more results than the researchers and drug companies get.

Ann

Okay, no - none of you are alone. My take on it, as you may know, is similar to those stated above. But I think Big Pharma may have recognized the potential boomer market very well, but wouldn't they rather maintain that population on "medicine" so they keep them as lifelong consumers rather than cure them, so that the cash cows flee their barns? Just thinking over the bsic principals of business investment, how could they not be thinking that way? It would be irresponsible to their shareholders. (Broken Model Alert!)

Especially after the Amgen travesty - where it looked like a real cure was possible - but now they refuse to release the rights to anyone else to try to make it work??? So there's where I agree with you, Charlie - like where have any of the major PD organizations been vocal on that one? But again, these industry interests are huge and powerful, and very hard to counter, especially when they manipulate scientific data in their own interests...

On the positive side, tho, at least for now - there are still things that could have potential. Ibogaine stimulates GDNF production in the brain - maybe it could be worked with. BUT it's illegal in the US and other places and no one has done the research. So if one is only comfortable (and I quite understand why....) with waiting for the official research to be done, it ain't gonna happen. But if one is willing or able to take a chance on more anecdotally- or instinctually based information, I think the possibilities remain for real medicine perhaps....

And on the positive side also, even tho exercise and positive thinking don't feel effective the same way taking a pill does - like you feel it in the next half hour or not - and who would blame us for thinking that way because that's the way our meds work - nonetheless I think they can be strong adjudicators in "rewiring" brain function. It's just more gradual and long-term, so we don't recognize it in the same way.

But yeah, I am all over the idea of a situation where a PD person could get help with nutrition (not just don't eat protein during the day, thank you very much!), plus supportive massage, plus a physical trainer who doesn't just see the body as a machine but knows Feldenkrais and Trager, plus daily aquatherapy, plus music therapy, plus sunlight and being in the garden, plus finding a way to connect to others so that we feel our experiences mean something in the world and could actually be helpful to people who are facing adversity so that we could find a way for our stories to have value......

I seriously am thinking of trying to start a center like this somewhere in South America where the dollar (at least at this moment) can do more for us Northerners, but in a way that would also benefit the local economy of wherever it was, pay the staff more than they could usually make in their communities, plus providing some discounted services to needy PD patients in the local community....Any one got some investor buddies who might see the potential in this one?

Too bad you have to say this and not someone in a position to impliment it.....
Why should big pharma do anything for us?? we're a big (and growing) profit center.

Charlie

Fiona & Charlie
It is somewhat true what you say Charlie, that "we're a big (and growing) profit center." And Fiona is somewhat right when she says "wouldn't they rather maintain that population on "medicine" so they keep them as lifelong consumers rather than cure them." BUT, has anyone taken the initiative to sit down and estimate (even "guess-timate") the financial impact of 80 million hitting the Medicare roster at once?!? Big pharma isn't getting rich on staple drugs that have long ago lost patent rights - almost every PD drug is now generic. And carbidopa/levadopa (i.e. Sinemet hereafter referred to as L-dopa) is a radically effective treatment. What other treatment (besides the recent DBS) turns a severely disabled PWP into a walking, talking, decently functioning person within minutes? That's why there hasn't been a market for PD drugs. And there are so many risks in surgtical, invasive intervention that right now is thriving, but what does it do long-term?? I contend that Big Pharma is not the only problem in answers for this problem - our own government is to blame (and I am talking BOTH parties).

Imagine with me for a moment . . . let's say half of those babyboomers (40 million) end up getting Parkinson's. Talk about a socioeconomic nightmare! Not only do you have to consider the cost of medication for this 40 million, but many of them will stop being productive citizens, unable to gain supplemental income after retirement. Most 60-65 year-old citizens are not a liability to the economy, but are an asset.

Charlie, you're on the right train of thought. If we got just 1 million people convinced that they need to demand this age-related illness be taken under control by marching on Capitol Hill, what a sight that would be! But first, we need to get our act together. Start with getting someone to sit down and get some real numbers. PAN has introduced legislation to initiate a regisitry with the Multiple Sclerosis Society, so there's a start. But the European Parkinson Society has already done a lot of work with WHO to come up with a count of 6.3 million worldwide. Why don't we continue with whatever they were doing? And the Social Security program in itself was set up as disability program, not a retirement system. I cannot fathom why the government hasn't been working on this long ago. And this 40 million must be treated with more than medication - they need physical and occupational therapy, psychological or psychiatric services, ER visits to sew up slashed heads or gashes from falls, and will most asuredly need long-term care. It is this message that needs to be shoved into the faces of our legislators. When you talk dollars - coming from people's own pockets to care for someone else, they tend to listen.

I'm not sure the answer lies with the organizations in implementing this. Granted, we WILL need their help, but this is a patient problem. And it will take empowerment of the patient and theiri families to have real impact on this enormous problem. I don't want this to go through a political party process, or it is doomed to be weakened. This needs to gain the caliber of Susan G. Komen Breast Cancer Foundation. How did one patient rise to the occasion and get as much out there to John Q. Public as she did???? How did the "pink ribbon" get such widespread attention? You can start by looking here: http://www.komen.org

I know a handful of patients cannot "do" this alone. But some of the really patient-centered orgs and drug companies (and there ARE some) could help us. I'm too far along to do it alone - but I sure am willing to use what energy I have to see something like this to fruition.

Whew! I've worn myself out just thinking about this! What next?
Peggy