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Ethical Issues in the Allocation of Federal Funds for bio-medical research and in America’s organ-donor crisis Dr. Richa

Ethical Issues in the Allocation of Federal Funds for bio-medical research and in America’s organ-donor crisis Dr. Richard Darling, DDS President & CEO FAIR Foundation. Mission Statements. FAIR and equitable bio-medical research funding by the NIH and Congress

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Ethical Issues in the Allocation of Federal Funds for bio-medical research and in America’s organ-donor crisis Dr. Richa

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  1. Ethical Issues in the Allocation of Federal Funds for bio-medical research and in America’s organ-donor crisis Dr. Richard Darling, DDS President & CEO FAIR Foundation

  2. Mission Statements • FAIR and equitable bio-medical research funding by the NIH and Congress • The implementation of new organ procurement policies to reverse America’s organ-donor crisis

  3. We invite you to meet a few of our 27-member Board of Directors…

  4. Waldo Concepcion, M.D., F.A.C.S.; Chief of Clinical Transplantation & Pediatric Kidney Transplantation, Stanford University School of Medicine

  5. Donald Hillebrand, MD; Medical Director of Liver Transplant Scripps Green Hospital, La Hoya, CA

  6. Jacqueline Marcell, Advocate: Alzheimer’s, Caregiving, Eldercare Awareness and Reform; Author Elder Rage; Radio Host Coping with Caregiving; Blogs on Caregiving ThirdAge and Alzheimer’s HealthCentral

  7. Lorenzo Rossaro, M.D., FACP; Director, Liver Transplant program and Professor and Chief, Division of Gastroenterology and Hepatology, University of California, Davis Medical Center

  8. Robert Gish, MD, Medical Director of the Liver Disease Management and Transplant Program at California Pacific Medical Center (CPMC)

  9. Melba R. Moore, MS, Commissioner of Health, St. Louis City Department of Health, St. Louis, Missouri; Member, Webster University’s Arts and Sciences Advisory Board, St. Louis Connect Care, and the Regional Health Commission; John F. Kennedy School of Government for State and Local Executives

  10. Bill Remak, B.Sc.MT, BA PHA; Chairman, California Hepatitis C Task Force; Secretary, National Association of Hepatitis Task Forces. Patient Advocate: Liver Disease & Stem Cell Research

  11. Ray Hill, AIDS & HCV Activist,Houston’s gay community: “gay hero 7 years in a row,” ACLU lifetime achievement award for advancing the rights of gay, lesbian and transgender citizens

  12. FAIR does not just focus on the disproportionate funding for HIV/AIDS. We also look at other discrepancies, such as….

  13. 1990’s Fears, Exaggerations • Oprah Winfrey: “Research studies now project that one in every five--listen to me--one in five heterosexuals could be dead from AIDS at the end of the next three years...It is no longer just a gay disease, believe me.“ • Surgeon General C. Everett Koop: "[AIDS is] the biggest threat to health this nation has ever faced....among heterosexuals there are going to be 20 times as many cases.“ • Cover of TIME Magazine: "Now No One is Safe from AIDS."

  14. Congress & NIH Solution • 1999: Congress decided to double NIH funding with a 15% increase every year for 5 years • If you already have a large amount of research funding (HIV/AIDS) and you get 15%, you receive much more than if you have a small amount of research funding • Unfair to all non-HIV/AIDS patients

  15. Funding Since 1999 Diabeteskills more Americans than AIDS + breast cancer combined every year The increase alone in AIDS funding to 2008 is more than the entire 2009 budget for diabetes, and almost every other disease $39 per diabetic $3,052 per AIDS patient

  16. Research Allocations per Disease by the National Institutes of Health

  17. $3,052 Does Not Include… • Billions spent by the pharmaceutical cos. • Billions raised by non-profits like amfAR, Sharon Stone, Bill Gates Foundation, Warren Buffet • Billions spent by the states >>>>

  18. Illinois’s Greatest Killer • Cardiovascular Disease • Average deaths: 42,540/yr. • Greater percentage in communities of color than in white community

  19. Illinois HIV/AIDS Deaths • From a high of 1,494 in 1995 to 192 in 2007…. • 89% reduction • Some of those 100 died from non-AIDS causes (car accidents, assault,suicide, etc.)

  20. State Deaths • Connecticut • 91 percent decrease in deaths to 75 from its 1995 high • New York State • 85 percent decrease from 8,301 to 1,209 • Pennsylvania • 95 percent decrease to 97

  21. And in the following chart, black columns represent deaths and gray columns represent survivors…

  22. California • 98%decline in AIDS deaths in “newly-infected” patients from just under 10,000 in 1992 to 218 as of 9/30/07 • 89%decrease in all HIV/AIDS deaths to 867 as of 12/31/07

  23. 50 States and District of Columbia • CDC estimates for 1999-2007 have remained at 16,000 to 17,500 despite plummeting death rates. • We complained to CDC Director—they now report 14,000 • FAIR’s total as reported by all fifty states: 10,050 • Conclusion: $3,052 is an understatement

  24. The FAIR Foundation recommends.. • In allocating bio-medical research dollars, the NIH shall place selective emphasis on a disease’s mortality

  25. Secondary Allocation Factors.. • the degree of disability and suffering produced by a disease • the morbidity (rate of incidence) • a disease’s cost to society • need to act quickly to stop a disease • cause of death, but is not reflected on the death certificate • Orphan (rare) disease

  26. Benefits of FAIR’s Factors • FAIR & Equitable for all diseases… • Easy to understand and implement… • Hollywood favoritism is eliminated… • Political Correctness is eliminated… • No more need for disease advocates to run to Congress and complain, “My disease is not getting its fair share!” • A portion of disproportionate HIV/AIDS funding redistributed to other diseases • Solution to frozen NIH budget

  27. Henry J. Kaiser Foundation • 2009 US AIDS Funding…$24.1 Billion 8.3% increase: only 4% prevention • Care, housing & cash…….. $12.3 Billion • Commitment for global….. $6 Billion over 5 yrs, Bush & Obama want $50 billion for HIV/AIDS • Total since 1981-2009 …… $250 billion

  28. In the USA (2006) AIDS killed … • 13 under the age of 13 • 49 from age 13 to 19 • 162 from age 20-24 • 405 from 25-29 • 629 under 30 Every AIDS deaths is a tragedy, be it child or adult as with every disease, but research allocations must be independent of emotional rhetoric

  29. What is needed in Africa? • The same solutions effective in the USA: • Prevention programs (stated by Dr. Fauci) • Providing existing medicines (HAART) • Harm Reduction education • Setting up health infrastructures to get the above remedies to the citizens • President Bush proposes raising global AIDS budget from $15 Bil to $50 Bil • WHO states global HIV/AIDS infection rate is <1percent in every country except two

  30. What does Dr. Fauci say? • The Director of the NIAID (National Institute of Allergy and Infectious Diseases) is our top AIDS researcher overseeing all AIDS funding • So powerful that the NIH Director cannot take funds from Dr. Fauci to redistribute • Dr. Fauci speaks

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