[SherylJ]

Todd, thank you for resurrecting this very important issue. I'm sure everyone on this thread remembers how close all these national orgs came to uniting several years back, until the talks collapsed in the 11th hour, for reasons we as patients can only surmise.

The fact that these national orgs are labeled not-for-profit does not mean they are not businesses. They are in the business of amassing funds to support programs and services that improve the quality of life for PWP and their families and research that seeks improved treatments and a cure. As with any business, some orgs do their job more effectively and efficiently than others. This is my own common sense conclusion, not a hint that I have any knowledge of any of the orgs doing anything they shouldn't be doing.

Obviously, as a PWP, I am troubled by how much money I imagine is going to duplication of services. I also have this sense that the way our system functions, the national orgs have to serve many different masters (drug companies, government, patients, etc.), often with competing interests. Each of these "masters" is going to get the short end of the stick at one time or another.

Carey, I too have mulled the idea of having patient advocates "look at what the orgs do in total: the good and the bad. Maybe put together a report on what each org does; the overlap; the original stuff." This can never happen, however, because ultimately the patients will lose if we go public with this sort of info. It will remain "a dirty little secret" because if we question how the orgs are using the funds they raise, big donors will be less likely to contribute, and then where will we be? We are between a rock and a hard place, just as we are when we have to choose a treatment course. Our lives and millions of others hang in the balance.

Sheryl

[lou_lou]

the big organizations get and crave money because they are owned by bigpharma!
the only PD organization - I will back will not take a dime from bigpharma -
and in doing so keep the organization from becoming the property of big pharma...
PRO - is the only parkinsons resource org. I would ever back.

I have seen the lavish money spent on the hotels and even went to a few, from the beginning of my advocacy in 2000 - 2004
and I saw the real people with hurting loved ones - giving big checks to
what? ---the cure?
well evidently it went for someones rolls royce payment?
I saw alot of doctors being wooed by gold, or the pharmaceutical gold standard?

tweaking meds? sounds like a Bull crapola reply?
we know better -

Originally Posted by paula_w

Rick,

I imagine some will race to answer this one or else run the other way. The orgs are caught in the middle of a changing world where patients were largely excluded. Their boards can tie their hands. Once again, it depends on who the group is who is appealing for help - if it's not a popular one, the group will be ignored.

Just think on this a moment - none of the PD orgs acknowledge Monkeys in the Middle - who are they afraid of offending?

The orgs are changing and becoming more patient oriented. But you can see by what they ask of patients that they don't completely understand the illness. And gobs of their money also comes from pharmas and biotechs.

paula

[indigogo]

Sheryl, I absolutely agree with you re:

"Carey, I too have mulled the idea of having patient advocates "look at what the orgs do in total: the good and the bad. Maybe put together a report on what each org does; the overlap; the original stuff." This can never happen, however, because ultimately the patients will lose if we go public with this sort of info. It will remain "a dirty little secret" because if we question how the orgs are using the funds they raise, big donors will be less likely to contribute, and then where will we be? We are between a rock and a hard place, just as we are when we have to choose a treatment course. Our lives and millions of others hang in the balance."

And believe me, I thought twice about saying what I've said already in this thread in a public forum. But I think it is a conversation we should be having, and I'm glad Todd opened the dam.

However, I also believe that the orgs should not be publicly shamed with damaging information, or coerced into complying. It won't work, as you stated, and if it did, it is not a productive way to get what we want. Going public with unpleasant financial details is not the way to go. But it doesn't hurt for the orgs to know that we understand in a meaningful way that the current setup squanders money and our future, and that perhaps collaboration would be best for everyone. I'm wondering if the organizations know that patients are even thinking about this stuff.

I'm not advocating the destruction of anything, rather seeking to illuminate the situation, and thinking about ways to solve the problem fractionalization poses short of an actual merger. Ways they could be working together on a project by project basis to leverage their power on behalf of the patient.

I think the value of some sort of patient panel lies in its ability to articulate the needs of the orgs most important constituency. Our voice now is lost among all of the other power players. Although patient frustration is a negative emotion, it is what is motivating us to speak out. The result we seek, though, is positive action on all fronts from those who are already mobilized in our service - the organizations. I think it would be generally positive if patients who care about this and who are in a position to influence, start to have a conversation about what is possible. I think of it kind of as a constitutional right; freedom of assembly or some such nonsense.

But you are right; we've got to move that rock that's squeezing us in a manner that doesn't destroy. Hopefully it can be done with logical persuasion and good will. Am I too optimistic?

[paula_w]

ok - let's imagine that all orgs stopped taking money from the drug development industry. Needless to say, much "work" would come to a halt.

Wouldn't it be interesting to see what "goes" and what "stays" in the orgs' priorities if that were to happen? Who would go and who would stay? Again, the world is changing. In the past, the sources of funding, and conflicts of interest were largely swept under the rug, and may have even been on the up and up.

That is clearly no longer the case. Losing our faith in the pharma industry is going to take along with it some of our faith in the orgs. Conflicts of interest, by itself, is not a dirty term. But I imagine that the conflicts of interest existing among pharma industry and orgs would at the very least raise a few eyebrows.

On the other hand - If Todd is going to ask about the pD community, that just doesn't mean orgs. The bottom line is there will be no progress without money. IF we don't take it from pharmas, we need other sources. I'm looking at the wealthy. And there it is - the same greed and lack of sharing.

But you can't hold patients to the same standard. We are NOT here by choice or to make money. You cannnot expect from a patient what you should expect from an org.

Carey I agree, the internet is the way to do this - patient run.

paula

[pegleg]

Carey,, I'm with you 100% that shaming or even making public the downfalls of PD orgs won't answer any of our questions. By law the ogs have to make available to the public their annual budget (you ave to dig for it, but it's at each website).

You can tell a lot about an org by seeing how large its reserve is - if there are millions sitting there for "emergencies" or whatever, I feel that org is not living up to its potential. but that's MYU summation. Maybe the organization (for you Canadian's - organisation) has an explanation, and we should be open to listening.

So my suggestion is that 2-3 groups (not too large) with key contacts as membership, choose a not-for-profit and scrutinize its innermost workings. You could have a set of key questions and information to research, then come back together to share the strengths and weaknesses of each org. This should include the main focus of each org, which would be useful information in itself.

In my opinion we need to approach this not as "Let's see how much dirt we can dig up," but as to "What positives do each of the orgs offer." I think the fact that we are doing this and why should be told up front. Actually, it would be useful information for the administration of the orgs, also, and they would be more willing to provide such info.

I am not going to get into the big pharma money philosophy, but let me leave you with this thought. Just because I got paid state money to teach didn't mean that the state owned me, nor the Board of Education where I once worked. To be a non-profit takes a lot of red tape (government rules), and the orgs can't just "take" money from big pharma. Pharma has rules they must follow, also; like giving an org $20,000 for a grant for patient education. We need to be able to tap into the resources big pharma provides. That's where we can really make headway. If we get our act together and with the contacts we have made over the years, we can make more solid requests -- even demands - as to where that money is going. Big pharma money isn't evil, it just has never had anyone but its board and shareholders to hold it accountable.

My dad used to have the best advice that always rung true - "You have to spend money to make money," and most of us aren't having to pay the government back at the end of the year - if you catch my drift.

This is windy and being composed before my morning meds have kicked on big time, but I think we are onto something here. The plan should be not to criticize, but "share, learn,, and propose" (acronym SLAP lol - NOT serious) in an organized way, non-threatening manner - keeping friendly contacts.

Now who has the time and expertise to head up this effort and see what needs fixing and how we can help.

[SherylJ]

Carey, only time will tell whether you are too optimistic when you say,
"we've got to move that rock that's squeezing us in a manner that doesn't destroy. ...with logical persuasion and good will." One thing is for certain, if we don't try, it will NEVER happen.

It is my experience that people and organizations (made up of people) change only when they have a compelling reason to do so... the "what's in it for me" syndrome. Had the multiple orgs formed one last time around, many key people would have lost jobs, had income slashed, and lost power and prestige. What do we have to offer them to offset this? We need a business plan that spells out the benefits of what we want for all the groups involved.

The temporarily healthy, try as they may, will never understand the desperation of those of us living with a progressive, incurable disease... unless we happen to be their spouse, parent, child, etc. It is up to us to make our pain palpable to them rather than bear our burden in silence. Having patient advisory boards is great if they are consulted about issues that are really important and if their voice carries real weight. Rights are only meaningful if we exercise them and those in power are committed to defending them. This plays out in government every day.

Carey, the long and the short of my response is that patients cannot afford not to take our best shot, but we must tread carefully in the process.

sheryl

[SherylJ]

[QUOTE=pegleg;336689]Carey,, I'm with you 100% that shaming or even making public the downfalls of PD orgs won't answer any of our questions.

Just to clarify, I don't believe anyone here suggested or implied we should publicly shame the orgs. I know I specifically said that we maintain a curtain of silence because we cannot afford to cast doubt in the minds of big donors that their contributions are being well spent.

sheryl

[paula_w]

Recently, in the Huffington Post, Katie Hood, MJFF CEO, called for agitators and idealists. Both are necessary and must respect each other. That means allowing it to be told "like it is".

The difference between not being owned by your employer and conducting a drug industry funded event is location -location- location.

paula

[SherylJ]

Peggy, you said, "Just because I got paid state money to teach didn't mean that the state owned me, nor the Board of Education where I once worked."

They may not have owned you, but you certainly had to teach a specific curriculum and am sure were well aware of those areas in which you could not deviate without being called on the carpet and facing some repercussions. And teachers without tenure are even more sensitive to this. There is no doubt that money talks... and can buy silence. It's never hard to find where the strings are attached.

sheryl

[pegleg]

I understand where you are coming from. But laws and rules are a part of everything we do - EVERYTHING! I just feel that working "with" big pharma is more conducive to getting where we want to go t han working against them. (And yes, there are times we need to oslap hands publicly).

What if every time a trial was called off, our grassroots group had a team that would go in and inspect and investigate as to whether or not there was another way - and would make recommendations? I'm thiinking big, which we would have to build u p to - one step at a time.

is anyone following me or am I out on a limb alone?
Peg