RRP ISA Survey Results

    (Important Disclaimer)


    Newsletter: 11-19-08

    This is a difficult message to write but I have delayed too in sending it. I am hoping you take time to ponder its implications for yourself, because as it stands now, there will probably be HUGE implications.

    In the next few days, I will be sending out another RRP ISA Newsletter, which will describe procedures on how to update your previously-completed online survey and a few other RRP-related issues. This present item, however, seems to deserve its own Newsletter, which is why I am sending it out separately.

    As you all know, RRP ISA is a publicly funded 501(c)(3) non-profit organization. According to IRS rules, that means that a LARGE proportion of our funding HAS to come from a broad cross-section of the community, not just from a few philanthropically inclined individuals.

    RRP ISA has in the past chosen to rely on donations, rather than putting together fundraising events like soccer games or bicycle races. That’s worked ok in the past, but going into 2009, RRP ISA is in danger of our losing our publically funded status with the IRS. That’s because in 2008, the vast majority of patients and physicians chose not to send ANY donations at all.

    It is very disappointing, actually, especially given the fact that we have publicized for some time that all patient donations would be MATCHED in 2008 (http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/302/) .

    So what is it RRP ISA does? I think you already know, but for a list of past accomplishments, please see http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/291/.

    In 2008, for example, we also launched a world-class website on RRP (www.rrpwebsite.org). We launched the RRP Forum. RRP ISA was the first to present on artemisinin as an adjunctive treatment for RRP (http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/273/ ) and the first to bring it to the community’s awareness in the 2007 RRP Focus Session in Washington D.C. We brought several new people into our Scientific Advisory Panel, including two (and possibly three?) artemisinin experts from the University of Washington. We have a powerful database containing approximately 400 patient entries. We routinely offer patients insight into what other patients have said about their doctors, taken from that database. There is virtually not a day that goes by when we don’t provide support services to patients who call or write in, and often that support takes several hours in email and phone calls. We have also been very assertive in advocacy work. For a small sampling of our advocacy efforts, see http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/379/ and http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/372/, both of which were spearheaded (i.e., initiated) by RRP ISA.

    Problem is that MOST members of the RRP community have effectively acted as if they were relatively INDIFFERENT to supporting an endeavor that benefited not just themselves, but also others in that community. Perhaps that explains why they have donated nothing. We don’t have much money coming in outside of a very small number of donors.

    We have until December 31, 2008 to turn things around or we will be in danger of losing our IRS status as a publicly funded non-profit. That may well signal a death-spiral that will lead to our demise as an organization.

    Thus far, we have received approximately $8,000 for the entire year, outside of <5% of the community that did donate. Unless we reach a mark of approximately $20,000 and unless it shows significant community support from many supporters, however, RRP ISA will be forced to severely curtail many of its activities going forward.

    Down the road, we may be forced to close the website and close our doors. That will not occur immediately, at least not until I have talked to our board. But unless our matching donations are markedly up by December 31st—and unless large numbers of community members step forward—I will be recommending the following as a first step:

    • In the past, we have considered ALL RRP patients to be part of the RRP ISA community, and that will not change. On the other hand, unless donations and the numbers of donors are WAY up, we will be REQUIRING that everyone wishing to access parts of our website pay an annual fee, possibly as much as $40-75. Why do we need it? Let me offer just one example. In the past year alone, we paid out more than $25, 000 in website related costs, including staff time. We will make exceptions for those people who cannot afford an annual fee, of course, but in the future, if this new policy is implemented, 100% of the community will be required to pay in order to access many of the features on the website that you currently take for granted and are offered for free.

    • The same kind of policy will apply to case management, counseling , etc. If we’re forced to implement an annual fee rather than closing our doors, please understand that we will. We will make a decision shortly after December 31, 2008, which is our day of reckoning.

    For me personally, this issue goes far beyond whether RRP ISA can survive as a publicly funded non-profit. It has to do with an ethical imperative that I had long-since hoped would be picked up by the community, but which apparently has not been. On my side, this has been source of no small amount of anguish and impatience. It has to do with reciprocity.

    The sense of entitlement that often goes along with thinking of oneself as an “RRP victim” doesn’t go very far, in my opinion. It all too often leads to a one-way street, where there’s a lot of taking but little or no giving.

    I am not suggesting YOU have a victim mindset, but many patients do, many are chronically discouraged, and many are depressed. There is with many patients this sense, and while I wouldn't go as far as to try and quantify it, it does figure in the overall "psychology of the RRP community."

    RRP ISA places great value on ADVOCACY, and here we are offering the community a choice. Please remember that not doing anything—or waiting for the next person to step up to the plate—is also a choice. There is not much time left for year-end giving, especially as more and more jobs are lost and the economy heads into a recession or worse.

    Please remember that not doing anything—or waiting for the next person to step up to the plate—is also a choice. There is not much time left for year-end giving, especially as more and more jobs are lost and the economy heads into a recession or worse.

    Still, those who choose to open their hearts as well as their wallets are directed to http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/302/&CFID=3316787&CFTOKEN=29885055, which serves as our DONATION page. I am hopeful that enough people might yet respond to make a difference.

    Again, please remember that while a high donation level from a few people is always appreciated, it will NOT make a difference with the IRS. We need to demonstrate that the community actually VALUES what we offer, and the measure of valuation is reflected in the BREADTH of community support.

    We couldn’t do that today, even if a got a million dollars from Bill Gates.

    If the RRP community truly believes it is best-served by having just one organization like the RRPF—which indeed does do fundraising events as described above—that’s fine. I’m committed to suspending all ego-involvement in RRP ISA from this time forward when it comes to arguing why I believe that more than one organization is optimal.

    Ultimately, the choice will be yours.

    Thank you for taking the time to ponder these points. May you enter the holiday season with an open-hearted spirit. May you and your family have a healthy and happy year ahead.