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The FAIR Foundation [mailto:fair@dc.rr.com] Don, the email you received (included below) was critical of my efforts at FAIR and it encouraged you to delete the article I wrote at your request for your organization, the Georgia Doty Health Education Fund (GDHEF), and that you have included in your newsletter (attached here). You have received at least one similar email in the past from an HIV/AIDS activist critical of our work prior to my coming to present at your Chicago conference, and it is possible you may continue to receive them from other HIV/AIDS activists. You asked me to respond, thus, I offer the paragraph under these preliminary comments for your use. You may wish to keep it on file and use it as a response to, not only the current objector, but also to others who, in the future, may express concern about my/FAIR’s efforts. Two years ago when we met, hepatitis C was your organization’s focus, and as a sufferer yourself, you represented the HCV community well. Inclusion of HIV into the GDHEF’s preventive efforts is laudable. Hopefully, the original GDHEF intent of helping HCV patients, be they the HCV portion of the co-infected patient or the mono-infected HCV patients, will remain strong including your support as it relates to the amount of research funding spent on HCV. Please let me know if you keep the article in your newsletter of if you delete it. Richard Darling, DDS Dear ?? The FAIR Foundation is calling for fair and equitable research funding by Congress and the NIH and I urge you to investigate their eminent twenty-eight member Board of Directors that includes Melba Moore, Commissioner of Health in St. Louis, who was a presenter at our recent “2005 Hepatitis and HIV Health Disparity Conference,” Ray Hill, who for decades was been one of this country's more strident HIV/AIDS activists, but now focuses on helping those with HCV, and John Fung, MD, who, while Chief Operating Officer of the Thomas E. Starzl Transplantation Institute in Pittsburgh was one of the first to transplant HIV patients with end-stage liver disease when other transplant centers were turning them away. Indeed, he transplanted Larry Kramer, the acclaimed writer and renowned AIDS activist who was dying from end-stage liver disease caused by hepatitis B. (See here) These nationally recognized individuals have all worked diligently to help HIV/AIDS patients, as has Dr. Darling, both as a dentist and as the founder of a liver disease support group that provides help to both the co-infected HIV/HCV patient and the mono-infected HIV/AIDS patient with end-stage liver disease. The FAIR Board of Directors represents all diseases not receiving fair and equitable funding from Congress and the NIH; however, in regards to HCV and HIV/AIDS, FAIR is stating the obvious: $25 per HCV patient for disease research versus $3,084 per HIV/AIDS patient is not fair or equitable and this imbalance must be corrected by the NIH and Congress. In addition, it should be noted that FAIR is only addressing disease research funding, not treatment or prevention allocations. FAIR’s work will not impact negatively the Georgia Doty Health Education Fund’s efforts to provide such prevention and treatment assistance to patients with HIV/AIDS, nor will it affect Ryan White funding. Your signature here Don: Note my corrections and responses to the criticisms are within the writer’s text below Richard -----Original Message----- Subject: A serious concern about Richard Darling's advocacy Don, I strongly support Richard Darling's crusade for improved funding for Viral Hepatitis research, but I have a very serious concern about his specific approach to advocacy for a counterproductive approach. At your conference and in your newsletter, Darling was very critical of HIV activists and Breast Cancer activists for having organized, rallied, protested, and lobbied to increase funding for research to understand, prevent and treat those two diseases. (Incorrect: I do not mention “HIV activists and Breast Cancer activists” in the article I wrote for GDHEF’s Newsletter. ABC’s John Stossel mentions them in the video (click here to view) that I play back for the audience, not me. This allows the reader to make an informed decision based on the facts.) While 15 presenters who invested hours preparing half-hour presentations had their speaking time cut to an almost useless 5 minutes each, Darling was given over an hour to play a video that scathingly attacked (this is an exaggeration of Stossel’s presentation, which was co-produced by ABC TV and the American Diabetes Association) HIV and Breast Cancer activists for successfully mounting exactly the kind of campaign your leadership is now building now for Hepatitis in Illinois. (Regarding the 5 minute issue, when told our time was being cut from 50 minutes to 5, I asked to go last so I could give my full presentation, thus only those who wanted to hear it fully would stay until the end. My request was granted.) I totally understand Richard's frustration that the 2006 NIH funding estimates for HBV and HCV are only $33 million and $122 million respectively when Congress recently allocated $300 million for the now famous Alaskan "Bridge to Nowhere" and many similarly ridiculous projects. My problem with Richard's approach of attacking health advocates for their success winning funding for other disease research (FAIR has never done that, in fact, we compliment them and their great success. Our efforts are aimed at changing the NIH and Congress’s disease allocation policies.) is that it creates infighting and emnity within the public health advocacy community. When Congress just spent $8 billion in the homeland security budget for devices to sniff out weaponized anthrax in the mail--a weapon that killed only four people after multiple uses--why on earth would Darling attack prevention and treatment activists (again, we don’t) for success in raising the budget for medical research for virology and immunology? Instead of inciting counterproductive sibling rivalry, wouldn't Darling's time and your newsletter space be better spent mounting a campaign to "Secure our Homeland from Hepatitis campaign!"? And anthrax detection is not even the best example of the funding Hepatitis advocates should be diverting to their cause. Anthrax funding is at least is money misspent in a hysteria-driven attempt to *save* lives. But our government has also just spent a lot of money to kill people. Our country just spent $400 billion attacking an third world country lacking the capability to harm us or defend itself against us. Congress continues to allocate hundred billion dollar infusions to maintain our occupation and to repair the infrastructure we just spent so much money to blow up. The rationale for the war was that it made us safer. That hands you the message we really need to be preaching. Give us 1% of the war's cost for Viral Hepatitis research. HCV, HBV, and HAV together cost us many more American lives in the past decade than terrorist or military attacks on American civilians. Let's make America safe against the real bioterrorists--Viral Hepatitis. With only 1% of the war budget, viral hepatitis would be better funded than HIV! Do you see why I feel Richard is shooting his friends and missing the real enemy? (We agree more funding should be spent on disease research, but each Federal Department such as HHS, Defense, etc. has a budget they must live within. Secretary Rumsfeld is not going to give part of his budget to the HHS Secretary for the NIH and suggesting such is not productive. We all must live within out budgets and when one area of our budget is consuming too much funding relative to its importance, those funds should be redistributed. With Illinois’s HIV/AIDS death rate plummeting to 100 (a ninety-three percent decline—see here; compare to 30,000 from heart disease, 24,000 from malignancies, etc. see here) and with similar great success against HIV/AIDS in all states, it is now time to reassess the ten percent of the NIH research budget going to just one disease--HIV/AIDS as disproportionate.) Darling's approach poisons relationships between health activists who could and should be allies--teaching and supporting each other. (The unknown writer should be more specific. FAIR has great support from almost all health activists except for some within the HIV/AIDS community.) His narrow perspective will have us fighting each other for tiny scraps beneath the table while war profiteers and billionaire taxcut beneficiaries gorge themselves on the feast above. If I were a Haloburton executive, I would pay Richard Darling's salary (I am an unpaid volunteer as are all of our Board members) to go around the country setting all the health advocates to slitting each other's throats, so that no one would think to ask why my $7 billion no bid contract didn't go to underfunded disease research! Furthermore, by targeting health advocates--instead of war-advocates and wealth-concentration-advocates--as the competition , Richard overlooks a critical fact. Medical research for Disease A often gives us tools to fight Disease B. Much of the research on Ribavirin and Interferon now used to treat Hep C patients was done with hard won HIV dollars. Why doesn't Richard ever mention that? The technology for the Hep C home test is ELISA technology developed with millions of basic medical research and HIV research dollars. Health advocates gain from research synergy. That's an important reason not to put each others' success in our rifle sites as Richard choses to do. (In my speeches I give credit to HIV researchers for their successes that have been found to benefit HCV and HBV; however, we believe it is unfair to expect all non-AIDS patients to wait for the byproducts of HIV/AIDS research to benefit them. We believe some of the excessive funding for HIV should go to the Alzheimer’s researcher whose goal is a cure for that disease, with a corresponding Nobel Prize to recognize his/her great efforts, versus the present argument that “HIV research may help your disease some day” so allow present funding imbalances to continue. “Alzheimer’s” above may be replaced with any other non-HIV/AIDS disease such as HCV and HBV to make the same FAIR point.) The other huge problem with Richard's message is that it has not come to terms with four simple facts. (1) Public attention can be an important force in driving political decisionmaking. (2) Public attention often responds more strongly to emotion than logic. (3) Public attention focuses more on media than on reality. (4) Media prioritizes ratings-grabbing sensational simplicity over tedious complicated truth. Car accidents kill far people per person-mile travelled than airplanes do, but what are people scared of? The plane wrecks they see on the TV. Al Quaeda attacks killed far fewer Americans than Viral Hepatitis, but which are people terrified of--and what does Congress spend billions on? The sensational 9/11 pictures people saw on the TV! I would venture to say that most successful advocacy campaigns for major public funds operate on those 4 principals. I appreciate Richard's idealism in feeling frustrated about our often illogical democratic processes. But Richard choses the wrong target when he vents his frustration solely on health advocates for using the same media techniques used by the successful military, business, education, environmentalist, foreign aid and other budget advocates to pull money away from health to their pet concerns! I wish he would zoom out and get the big picture! Why not expose media manipulation in the service of death-dealing or wealth concentration instead of reserving his attacks for media advocacy by health causes? If his tactics work, and people stop marching and protesting and advocating for the diseases they personally care about, what do you really think will happen? Would most people you know bother to show up for a general "medical research" rally? Probably not. Would Congress feel pressure to raise the NIH budget? Of course not! Where would that money go? My bet is Congress would hand out another no-bid contract to make yet another insider rich "fighting" another media-inflated danger. The poster celebrities of the week for military, business, education, environmentalist, foreign aid and other budget advocates would walk away with the pie, as health advocates silently sorted out the fairest way to divide a few crumbs amongst themselves. While Richard spurns Elizabeth Taylor for speaking out for AIDS research, I applaud her--and Dick Gregory--for using their celebrity to attract dollars to health-giving research. (Again, we applaud HIV/AIDS activists and now urge them to direct their efforts to other diseases that have not had such success, either in treatment protocols or fund-raising.) Does Richard think that HIV advocacy has been too successful? My HIV prevention budget of $1.2 million per year for 2.5 million people seems pretty generous compared to the current Viral Hepatitis prevention budget for Illinois. (Again, our focus is “research,” but since the writer admits his budget is favored over that for HCV, would he be willing to share some of it with those working for HCV prevention?) But it works out to just 50 cents per person per year. If I invested the whole budget into HIV testing alone, ignoring HIV education althogether, it's only enough to test 0.8% of our residents per year. And we estimate that about 8%-10% of our population is at high enough risk to need a test yearly. Just testing those highest risk people would cost ten times more than we get funding for all HIV prevention interventions together. Is HIV prevention overfunded? Then why repeatedly attack the dedicated work of HIV advocates for successfully getting funding for just 1/10th of the documented need for testing alone? Why not just do the work--as you do every day, Don--to raise the same awareness and support for Hepatitis prevention? Ask Richard to save his attacks for government projects that are morally wrong or fiscally wasteful. We should be broadening the Ryan White act to provide services for uninsured people with all debilitating chronic infectious diseases, not attacking it! We should be screaming for *more* virology and immunology research in place of soaring military and "security" budgets, as the best cost-effective investment to protect Americans from the true threats, not media-inflated bugaboos, to their lives and health. (The total funding for HIV/AIDS since 1981 is now approaching one-fifth of a trillion dollars and most of that has gone to care, including treatment, housing assistance and cash payments to patients. See it here. Clearly, it has received excellent funding.) Please understand. Richard is a good man, and I admire his passion to improve Hepatitis research. In fact, I share that part of his mission as you do. I only object to the divisive tactic he has chosen to promote our shared cause. I urge him to choose a message that builds health funding equity through health advocacy collaboration and synergy. A Native American saying goes "Dogs fight among themselves until the wolf comes." As easy and tempting as it may be to nip at HIV and Breast cancer advocacy, I hope a friend will nudge Richard and point out the wolves that threaten all our health projects. Your newsletter is an important megaphone, Don. When you hand your megaphone to someone who preaches divisiveness, you promote division. Please talk with Richard about this. If you can't persuade him to work for Hepatitis funding without attacking other life-giving funding, then please don't provide him amplification for a divisive, counterproductive message. Stifling dissent is not our American way. Indeed, in the 80’s, many tried to stifle HIV/AIDS activists as this writer is now trying to do to FAIR. We hope you will keep the article, Don, and allow the reader to make an informed conclusion as to whether or not our premise is correct as stated: “It is appropriate for the NIH and Congress to reverse their disproportionate funding policies. Such actions would increase allocations for liver disease research, including hepatitis B and hepatitis C.” Respectfully, Name withheld From:
Don Doty [mailto:dondoty@ameritech.net] The Board has agreed to include your article in our March Edition. I find your efforts to be applaudable and [they} deserve an opportunity to be heard and responded to, in regards to Hepatitis & HIV Research. I hope to invite you to participate in our Multi City Tour. I am a staunch Hepatitis Advocate. The state grant was available as a Hepatitis & HIV Co Infection Grant Doty From:
The FAIR Foundation [mailto:fair@dc.rr.com] On behalf of all HCV infected patients in IL and the entire USA, be they solo or co-infected, a heartfelt thank you, Don. Richard -----Original Message----- Attached is the final Winter Edition of the Hepatitis & HIV Newsletter. You can support our project by placing an ad in our next Edition 'Don Doty -----Original Message----- From: The FAIR Foundation [ mailto:fair@dc.rr.com]Sent: Monday, January 30, 2006 9:11 PM To: 'Don Doty' Subject: RE: final for printer Am I seeing correct that you reversed your previous statement and pulled the article I wrote, Don? Richard From: Don Doty [mailto:dondoty@ameritech.net]
We developed 2 different versions We send yours to the general public and other version to the HIV Industry Don From:
The FAIR Foundation [mailto:fair@dc.rr.com] Don, you stated below that you sent your final Newsletter without my article to the HIV industry and that a different version of your Newsletter with our article will go to the general public. Since you did CC the Newsletter without my article to all those listed below, one might conclude they are all part of the HIV industry; however clearly many do not have HIV as their sole focus. Sending out two Newsletters is troublesome because unless you disclose this policy to all, you are not providing full disclosure to each audience. Since you Cc’d a Mr. Fred Jackson and a Mr. Joe Smith on this issue previously, I am including them in my Cc also. I also believe all those listed below should be alerted to the two-Newsletter policy; however I’ll leave that as an issue for you and your Board of Directors to address. I note you have me listed in the Final Newsletter as a Contributor. Since I my article was deleted, that reference to me is in error. Please remove my name as a Contributor prior to printing. Thank you. Richard Dr.
Richard Darling, DDS From:
Don Doty [mailto:dondoty@ameritech.net] You are a Contributor and a Colleague The Board did not want to come out with such a controversial article. I had received Negative Comments, before the paper even came out. I sent you a copy of such response, that you told me that you would provide me a response from his comments. Since our present funding is a Hepatitis & HIV Grant, the pressure was unnecessary at this time. We have invited you to send another article, but take the bite out of it. I agree with your assessment and research findings and will support your advocacy. DD [Don Doty] |
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