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Points of Interest on NIH Research Allocations as of 03/18/11

The CDC estimates 14,110 AIDS deaths in 2007 in the USA. To see the answer and the number of deaths in your state, click here. Note: we asked each state how many HIV/AIDS deaths they have; their answer: 10,195.

Cardiovascular Disease kills 864,000 every year, yet receives over 1/2 Billion less than AIDS with $26 spent on behalf of each CVD patient

The NIH is spending $3,032 on each citizen estimated as having HIV/AIDS

Diabetes kills more Americans than AIDS and breast cancer combined, yet the NIH spends only $42 on each  diabetic

Alzheimer's Disease kills 3.3 times more than AIDS, yet the NIH spends only $124 on each patient with Alzheimer's Disease

Parkinson's Disease death rate similar to AIDS yet the NIH spends $92 on each patient

Prostate cancer kills 2 times more than AIDS, yet the NIH spends only $171 on each patient with prostate disease

Hepatitis C (HCV) kills 12,000, yet the NIH spends only $23 on each HCV patient

Hepatitis B (HBV) kills 5,000, yet the NIH spends only $43 on each HBV patient

The flu (influenza) on average, now kills almost 4+ times more than AIDS.  Flu: $327 million
AIDS: $2.3 Billion

COPD (Chronic Obstructive Pulmonary Dis.) = over 126,000 deaths yet the NIH spends only $7 on each patient

West Nile Virus cases in 2009: 637 cases and 28 deaths, which results in $1.5 million dollars spent in research per death. Does these facts justify this disparity in bio- medical research funding?

Sudden Infant Death Syndrome (SIDS) estimated deaths at 2,250. HIV/AIDS under 13 = thirteen deaths.

 2012 funding request for HIV/AIDS = 28.3 Billion: $17.6 Billion for care, cash & housing assistance (HOPWA) for HIV patients & only 1 percent for prevention.

1Total HIV/AIDS Funding since day one: $$ 386+ Billion dollars through 2012--over 1/3rd of a trillion dollars. ($150B thru 2004 from Henry J Kaiser Foundation and over $20+ Billion every year since then + Congress voted another $50 billion for global HIV, TB & Malaria.)

The infection rate for AIDS throughout the entire world is 1 percent or less except in two countries, Sub-Saharan Africa and the Caribbean. See page 8 from UNAIDS here (large file, please be patient). For a specific country, click here.

For AIDS in India, where estimates were 100% inflated until recently by UNAIDS (The Joint United Nations Programme on HIV/AIDS), click here.

SARS: "Current Situation" from the CDC states "there is no known SARS transmission anywhere in the world." Research monies  not disclosed by NIH. Press coverage:  disproportionate.
Monkeypox cases confirmed in the USA: 37, deaths =0 in 2003. No recent reporting is available from the CDC.

Statistical supporting links may be viewed here

Color pie chart and graph illustrating disparities in funding may be viewed here

Updates on Funding for your Disease of Interest is here.

Sixteen diseases killed a million more American than HIV/AIDS annually in 1999. There are more now.

Please take a moment to view our 29-member Board of Directors of surgeons, medical directors, pharmacists, dentists and disease advocates

To review all FAIR Newsletters, click here

We appreciate your submitting news stories of interest to us at fair@dc.rr.com

To view a powerful 14 minute video by the American Diabetes Association and ABC Television, Click HERE

Every donation to FAIR counts! To make a gift in memory of a loved one or friend, to honor someone or to leave a legacy with estate planning, simply click here.

To email a template letter in support of fair funding to President Bush and your Congresspersons. Simply go here to contact them quickly and easily with a click, copy and paste.

View the latest (2008) reported HIV/AIDS USA funding billions and the amount for each state, most of which is for social programs, housing assistance, cash payments, meds, etc.

Worldwide, the most deaths be far are from non-communicable diseases: 16 million die of cardio-vascular disease, 7.3 million from cancer, 3.7 million from respiratory infections versus 3.1 million from HIV, a  communicable, STD
(sexually transmitted disease). See world clock here and click on "Death" in the middle column.

World-wide there are 160 million people with hepatitis C versus 34 million with HIV/AIDS.

To send a prepared letter to the President and your Congresspersons in support of new organ donor policies to reverse USA's organ donor crisis, click here.

FAIR's Privacy Policy may be viewed here.

FAIR is an acronym for Fair Allocations In Research.

FAIR is fair.
Volume 9: Issue 1
 

FAIR NEWSLETTER: March 2011
 


Is there Greed in the HIV industry,
both national and local?

You decide. We taxpayers have spent well over one third of a trillion dollars on HIV nationally, including over $3,000 per HIV patient on research versus less than $200 for virtually every other illness, the HIV death rate has plummeted (99 percent in CA) and the government's top AIDS researcher admitted years ago that their success is "breathtaking" with AIDS patients living "normal lives."
 
 In Palm Springs, CA the Desert AIDS Project (DAP) competes with local charities for every dollar available from local residents. Why is that not appropriate and why should their Board of Directors be ashamed of themselves for allowing this? While local charities work hard for a few thousand dollars at events, DAP's IRS Form 990 shows that they already have received millions of dollars ($7.5 mil in 2008) in grants and program service revenue for only 2,200 patients with a bloated staff of 100 including $2.5 mil in salaries with a Director’s total compensation of ~$200,000.

DAP further rubs salt into the wounds of every other local charity by using these funds to run regular, lengthy TV ads urging all local citizens to send them even more money and of course they ring the register again with their annual awards banquet with George Hamilton and Joan Collins headlining. As they say on their web site: "Give us your furniture, appliances and TVs and we'll come pick it up [or take it on consignment] for FREE!" And they also ask that you be sure to donate medical and dental care.
 
 We might also look at the San Francisco AIDS Foundation and it's IRS Form 990: $19.4 million in grants, $7.8 million in salaries including CEO Mark Cloutier's total compensation of $247,893 and many others receiving over $150,000. Last, let us not forget Sharon Stone's favorite, amfAR, the American Federation for AIDS Research. Another $22.8 million in revenue with $2 million in management expenses.
 
 Has one national or local HIV/AIDS organization admitted they are receiving a disproportionate amount of taxpayer dollars and refused it or offered to have it redirected to other illnesses? No. The mantra of the HIV/AIDS industry is that their disease is special because it is infectious, that you and everyone in your family, even grandparents, should fear this PREVENTABLE disease and therefore, "We want more money."
 
 It is time to add the HIV industry to those in need of drastic cutbacks by our Congresspersons during these tough budgetary times. And some of HIV's overflowing treasure chest should rightfully go towards helping patients and research for illnesses other than HIV.

Here we go again: President Obama's 2012 HIV Budget Request: another $28.3 billion

In yet another stunning budget request (reported by the Kaiser Family Foundation) that now puts USA HIV/AIDS funding well over one-third of a Trillion (yes, a T for Trillion) dollars, President Obama has requested an additional $28.3 billion for the benefit of HIV/AIDS patients in 2012 and it includes $2.7 billion for direct cash and housing payments to HIV/AIDS patients, $14.9 billion for their care and treatment, $2.8 billion for research and $1 billion for the true solution for HIV infection: prevention efforts. For full detail of $1/3rd+Trillion see left column.

Again?! President Obama's 2012
 Global Health Budget Request

President Obama's budget request for Global Health funding includes another $5.6 billion for HIV/AIDS. This is an increase of $26 million and is further evidence of the ability of HIV/AIDS to not be affected by our country's budgetary crisis.

FAIR Revises Mission Statement

We are pleased to report that we have updated our Home page's Mission Statement with new information, including our new emphasis: public health preventive education to improve societal health with a reduction in the need for organ donation.

FAIR Participates in Arizona Walk
Urging Restoration of Transplant Funds

 FAIR was at the forefront of reporting in September of last year that Arizona was planning on cutting off funding to 98 transplant recipients and two have already died as a result. AZ did cut off the funds and FAIR was instrumental in organizing a march on the State Capital building with many transplant advocates to urge Governor Brewer and the legislators to restore the funding. We present FAIR's CEO, Dr. Darling, and Secretary/Board member, Bill Remak, both of whom participated in the march, Bill wearing his FAIR Foundation t-shirt (available here). ABC quotes Dr. D on the march. FOX news story.

Our Government's Solution to organ
shortage--let the older patients die

As reported by Rob Stein of the Washington Post, the nation's organ-transplant network is considering formalizing what has been ongoing in California for quite some time--organ rationing by giving younger people preference over older, sicker patients for the best kidneys. Arthur C. Caplan, a University of Pennsylvania bioethicist states in the article, “You have no choice.” Rubbish. It’s time for those in charge of our system of organ donation to admit they are failing miserably in the quest to meet the demand for organs. It is also time for trial projects of the new organ donor policies FAIR and many eminent physicians and patient advocates are recommending. FAIR letter to Rob Stein and you may also read an articulate criticism of this path UNOS is taking by Lainie Friedman Ross, a pediatrician and professor of clinical ethics at the University of Chicago and Benjamin E. Hippen, a transplant Nephrologist at the Carolinas Medical Center in Charlotte, N.C.

How Many are on the Waiting List?

Is the waiting list 110,685 today as the government agency that oversees this, UNOS, says? No, there are well over 300,000 renal patients who are on dialysis but due to the shortage of organs they are not even being listed for transplant--that puts the total in need at well over 400,000.

Presumed Consent legislation Filed
in Colorado Legislature

As reported by the Associated Press, one of the new organ-donor policies FAIR has been promoting, Presumed Consent (PC), has received favorable publicity and legislative action. In an effort to reverse America's organ-donor crisis of one person on the waiting list dying every 66 minutes, PC legislation has been filed in the Colorado Legislature with bill SB 042-44.

Is this FAIR? We don't think so either.
Our Government's Bio-Medical Research Allocations
by the NIH and Congress


Plus, the funding for over 6,000 rare illnesses is only $467 million, down from $1.2 billion in 2006.

Ten years ago we founded the FAIR Foundation Liver Disease & Transplant Support Group with the assistance of liver transplant recipient, Jack Burke. We have been providing education, emotional support and referral for transplant to patients locally in Southern California and throughout the USA. Sadly, we have lost many over the years—on average, 1 every 3 months—and this reinforces our resolve at the FAIR Foundation to see new organ-donor policies instituted to reverse the organ-donor crisis in America by augmenting altruism and providing more organs for those in need. If you have liver disease and need help, click on the logo and phone us.
 


State Map to Donate Life Registry to become an organ donor. 1 organ donor can save 8 lives!
 

1 Tissue donor can benefit 50 lives!

Exactly who is receiving HIV research dollars?
Are they all in the USA? You'll be surprised

Where is the $3.184 billion in HIV research being spent and who is receiving the exorbitant funding? Click on the hands reaching out for the cash.

 


FAIR's Board of Directors at work
 

We are proud to announce Michael E. de Vera, MD, FACS' has joined our Board of Directors. Dr. de Vera is Director and Chief of Transplant Services at the Loma Linda University Medical Center Transplant Institute, Loma Linda, CA. Dr. de Vera was previously Co-Director of Liver Transplantation, Director of the Transplant Fellowship Program and Associate Professor of Surgery at the Thomas E. Starzl Transplantation Institute, Pittsburgh, PA. Web CV
 

We are also proud to announce that Deborah Sutton has joined our Board of Directors. Deborah is Chief Executive Officer for the Riverside chapter of CASA (Court Appointed Special Advocates). CASA is a national 501(c)(3) non-profit whose volunteers are appointed by judges to watch over and advocate for abused and neglected children. Last year, more than 70,900 CASA volunteers helped 237,000 in-need children find safe, permanent homes.
 

Robert Gish, MD, is now Medical Director for Hepatobiliary Disease and Abdominal Transplantation (CHAT), University of California, San Diego School of Medicine. Dr. Gish is the Past Medical Director of the Liver Disease Management and Transplant Program at California Pacific Medical Center (CPMC). Web CV
 

 

Cathy Teal is the FAIR Foundation's Director of Communications and Public Outreach. She has over twenty-five years of experience in advertising and marketing communications. Cathy holds a Bachelor of Fine Arts from Middle Tennessee State University.


 

James M. Ward Captain, SC, USNR (Ret.) is the FAIR Foundation Patient Advocate for those with cardiovascular disease (heart, stroke & hypertension). Jim Ward is a tribute to courage and the human spirit--he has had nineteen stents to clear blocked coronary arteries, San Diego, California



 

Dr. Jill Weissman, PharmD is a Transplant Pharmacist and Assistant Professor in the  Department of Pharmacy Practice, Loma Linda University School of Pharmacy, Loma Linda, California. She is in the transplant intensive care unit every day caring for pre- and post-transplant patients.



 

FAIR adds Links page--do you
want your organization included

We have added a page on which we are posting links to other organizations. If you would like a link to your organization added here, just let us know at our email address: fair@dc.rr.com.
 

FAIR Continues its dental plan for transplant patients as featured in ACP Newsletter

If you have passed all of your pre-transplant requirements except for dental due to financial hardship, contact us and we will attempt to find a dentist that will help you pro-bono. We have helped many patients in the past and may be able to assist you also. For a complete summary of our dental plan for transplant patients, click the smile and download the information if you are in need of help. This dental plan is made possible and was instituted with the American College of Prosthodontists (ACP). In a recent national ACP newsletter (The Messenger) they included a story on their dentists who have helped save lives in the FAIR/ACP dental outreach plan. 

FAIR Profiles States

What are the top ten causes of death for the citizens of Iowa and Kansas as reported by the Centers for Disease Control and Prevention (CDC)? Is HIV/AIDS one of them? If not, how do the top ten compare with HIV? For the top ten causes of death in these states and other interesting info, click on their map. For HIV/AIDS deaths in those and all other states, click here.

Your Disease's research dollars--where are they going?

Have you wondered where the money being spent on your disease is actually going--to what researcher in what country? Click here, find your illness, then click on the budgeted amount to get the full list of people researching your illness.
 



and it still receives 10 percent of the entire research budget

  • Since 2001 there has been one and only one documented case of occupational HIV transmission to a health care worker in the United States.
     

  • Gene therapy raises hope for future AIDS cure
     

  • Potential For Eradicating Pediatric HIV now exists. Story

  • The Louisiana Community AIDS Partnership (LCAP), an affiliated program of the Louisiana Public Health Institute, in partnership with AIDS United and the Louisiana Office of Public Health HIV/AIDS Program, has awarded grants totaling $150,000 to six community-based organizations across the state to help improve the health and quality of life for those infected with, or affected by, HIV/AIDS
     

  • Two Florida universities and one in California have been awarded a $4.7 million grant to study the connection between marijuana use and HIV infections in adolescents. Story

The States continue great success against HIV/AIDS

 What percent decline in AIDS deaths have been achieved in America's states?
Wyoming ↓100, W. Virginia ↓98, Kentucky↓97, Alaska ↓96, Idaho↓95, Hawaii↓95, California ↓92, Rhode Island ↓90 and so on throughout the USA reflecting the excellent success of HIV drugs, prevention education and harm reduction policies (providing clean syringes to IV drug users). Click the map to see all states and their progress.
 

FAIR's Press Release: Immediate Action Needed to Reverse America's Organ-Donor Crisis

Every hour a person on the waiting list or one who was delisted due to becoming too sick to be transplanted dies. You can help give all in need the "Gift of Life" by simply copying this opinion editorial and sending it to media and President Obama. Click on the Please Help logo!

Waiting for a Liver Transplant?

Are you waiting for a liver transplant?  Which areas/hospitals are transplanting years sooner than others. To calculate your MELD score and find the region/state that is transplanting at the lowest MELD score, click the liver.


The HIV/AIDS Clinical Trials
Parade Continues

In May there were 1,742 HIV/AIDS Clinical Trials, in August, 1,865, in October 2,233, As of 3/11/11 there are 4,737 listed for HIV and 5,033 for AIDS. Find out how many for your disease by clicking here. For example, there are a total of only 796 for Parkinson's Disease, 884 for Alzheimer's Disease, 1179 for COPD, and 1144 for hepatitis C (many involving HIV & HCV).

Do you auction items on E-bay?

If you sell an item on E-bay and participate in their program to benefit non-profit organizations and you would like to include FAIR in your philanthropy, you can easily donate a percentage of your revenue received to FAIR--as little or large a percent as you wish to donate. To learn how, click on the E-bay logo and we thank you! To see an auction that is donating to FAIR, click here.

Focus Disease of the Month: 
Alzheimer's Disease (AD)

  • We proudly profile FAIR Foundation Board of Directors member Jacqueline Marcell, B.S. who is a national advocate for Alzheimer’s eldercare awareness and reform. Jacqueline was a photographer who also taught at UCLA, and then a television executive, but she barely survived as a caregiver to her once-adoring challenging elderly father and sweet ailing mother, both with Alzheimer’s which went undiagnosed for over a year. Compelled to save others from a similar experience (especially from getting so frustrated they commit elder abuse) resulted in her bestselling first book ELDER RAGE, launching the COPING WITH CAREGIVING radio show, and becoming an INTERNATIONAL SPEAKER (CEU/CMEs). Jacqueline’s mission is to impart knowledge on issues that unnecessarily cost a year of her life, her parents’ life savings and much of her own, and then nearly her life when she was diagnosed with invasive breast cancer. Contact at J.Marcell@cox.net.

    On January 1, 2011 the first wave of 76 million Baby Boomers (born 1946-1964) began turning 65, officially becoming Seniors. For the next 18 years, every 13 seconds, 10,000 Americans will become Seniors every day. Combined with a yearly rise in life expectancy due to medical and public health achievements and improved work and highway safety, an overwhelming demand for Senior products and services will grow exponentially. There are 37+ million Seniors in the U.S. now, and in two decades there will be 70+ million Seniors. Experts warn that this ongoing “Silver Tsunami” will create major social and economic challenges for our society for decades to come.
     

  • AD is fatal: AD is the 6th leading cause of death and the only disease among the top 10 which currently cannot be prevented or cured. Based on 2000-2008 mortality data, death rates have declined for most major diseases, while deaths from AD has risen 72 percent. 82,476 died from AD -- eight times the number of deaths from HIV/AIDS.
     

  • AD patients live an average of 8 years but some live 20, exacting a tremendous physical, emotional, and financial toll on family and friends. 61 percent of AD caregivers report high to very high stress and 33 percent report depression. Stress can impact the immune system for 3 years after caregiving ends, increasing the chance of major illnesses developing. In 2010, AD and dementia caregivers had nearly $8 BILLION in increased health care costs.
     

  • AD treatment??: There is no cure nor treatment that can stop the progression of Alzheimer’s. Four medications may temporarily mask symptoms: Aricept, Exelon, Razadyne and Namenda. On  average, patients live 8 years but some 20 years.
     

  • AD is Prevalent:

    • There are 5.4 million Americans with Alzheimer's (compare to 1 million estimated with HIV), but millions go undiagnosed for many years because subtle and intermittent early warning signs are perceived as just a “normal” part of aging. 

    • By age 65 (officially a Senior) 1 in 8 will develop Alzheimer’s Disease (AD), just one type of dementia, a brain disorder marked by memory problems, impaired judgment, confusion, behavior changes, and eventually difficulty in speaking, swallowing and walking.

    • By age 85 (the fastest growing segment of the population) nearly 1 in every 2 will get AD. Every 69 seconds someone is afflicted.
       

  • AD Caregivers: There are 15 million caregivers of patients with AD or another type of dementia. These family caregivers provide 17 billion hours of unpaid care yearly, valued at $202.6 billion.

    • More than 7 in 10 AD patients live at home, cared for by family and friends because Medicare and most private insurance plans do not cover long-term care.

    • 61 precent of AD caregivers report high or very high stress and 33 percent report depression. Stress can impact the immune system for 3 years, increasing the chance of chronic illness. Because of the toll of caregiving on their own health, AD and dementia caregivers had $7.9 billion in additional health care costs in 2010.
       

  • Health care, long-term care and hospice care for AD patients costs $183 billion ($11 billion more than 2010) annually.
     

  • AD costs American business $61 billion due to absenteeism and lost productivity from employees' need to care for loved ones.
     

  • AD online support group is available here at MDjunction.
     

  • Bio-medical research funding inequity: The NIH estimates only $86 will be spent on research for each patient with Alzheimer's  in 2012 versus $3,047 on each patient who has been identified as having HIV/AIDS.
     

  • Solution: The Fair Foundation seeks more funding allocated for Alzheimer's research based on recommended policies.

    Alzheimer's statistics from the Alzheimer's Association and, in addition, their comprehensive 2011 facts and figures report and from the Centers for Disease Control National Vital Statistics Report, Vol 59 #2, see Table B and Table 2.

You have helped us grow rapidly, but we need more members to change Congress and the NIH. Please encourage new membership by posting this in chat rooms, Blogs, internet support groups, and by forwarding it to your associates, friends and relatives with your recommendation that they join HERE. With strength in numbers, we WILL achieve fair and equitable NIH distributions for Alzheimer's disease as well as ALL other diseases. 

The FAIR Foundation; E-mail fair@dc.rr.com FAIR is an apolitical 501 (c)(3) organization. You may donate to our cause--we are an all-volunteer organization--here.

FAIR Mission Statement: The FAIR Foundation is dedicated to fair and equitable distribution of research funds by the government for all diseases, including the 16 that kill a million more Americans than AIDS. A disease’s mortality rate shall be given emphasis in determining allocations and other secondary factors shall be utilized to insure diseases that cause great suffering but have low mortality rates will also receive significantly increased funding.

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