The FAIR Foundation is dedicated to fair and equitable distributions of Nation Institutes of Health (NIH) research funds for all diseases, including the sixteen that kill more Americans than AIDS.

Points of Interest on NIH Research Allocations as of 12/15/09

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: 10,210.

Cardiovascular Disease kills 870,000 every year, yet receives over 1/2 Billion less than AIDS with $29 spent on behalf of each CVD patient

The NIH is spending $2,774 on each citizen estimated as having HIV/AIDS

Diabetes kills more Americans than AIDS and breast cancer combined, yet the NIH spends only $39 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 $124 on each patient

Prostate cancer kills 2 times more than AIDS, yet the NIH spends only $192 on each patient with prostate disease

Hepatitis C (HCV) kills 12,000, yet the NIH spends only $20 on each HCV patient

Hepatitis B (HBV) kills 5,000, yet the NIH spends only $34 on each HBV patient

The flu (influenza) on average, now kills almost 2+ times more than AIDS. Flu: $199 million
AIDS: $2.3 Billion

COPD (Chronic Obstructive Pulmonary Dis.) = 126,128 deaths in 2003 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.

2010 funding request for HIV/AIDS = 25.8 Billion: $15.6 Billion for care, cash & housing assistance (HOPWA) for HIV patients & only .9 percent for prevention.

Total HIV/AIDS Funding since day one: $$ 330⁺ Billion dollars through 2010--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 + a significant portion of the $7.4 billion in the Stimulus Bill for the NIH Institutes will go to HIV because it is being distributed in pro-rata fashion based on the pervious year's funding when, as usual, HIV received 10 percent of the NIH budget.)

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 26-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.

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 7: Issue 4

FAIR NEWSLETTER: December 2009

We begin this issue by wishing you and your families
Happy Holidays and a prosperous New Year

2010 HIV/AIDS budget request pushes
total spending to over 1/3 trillion dollars

President Obama's recent HIV/AIDS 2010 budget request of $25.8 billion pushes the total US spending on this preventable illness since its onset to well over 1/3rd of a trillion dollars. How much of that $25.8 is being spent on prevention? Less than one percent (.9). The amount to help HIV patients with their housing expenses (rent, etc. with HOPWA) and cash needs: $15.6 billion--a 6 percent increase--and bio-medical research gets an inappropriate boost also. We shake our heads in disgust at the statement in the report that "Federal funding for HIV/AIDS represents a small fraction (<1 percent) of the overall federal budget." With diabetes, which affects 25 times more patients than HIV and kills more than HIV and breast cancer combined, receiving 66 percent less than HIV in its budget, and almost all other non-HIV diseases receiving pennies on the dollar, are we to feel sorry that "HIV funding represents a small fraction"? Full report

Staggering Ryan White HIV/AIDS Funding totals

The Department of Health and Human Services has released yearly funding totals for HIV/AIDS under the Ryan White HIV/AIDS program. How much has been spent for HIV patients on that one program? Now approaching $25 billion dollars. One can only hope this exorbitant favoritism at the expense of non-AIDS patients will end soon with proper funding for all maladies. Our thanks to FAIR member and Founder of the National Hepatitis C Institute, Kitty Candelaria, for bringing this to our attention.

HIV Researchers claim success with vaccine but
withhold facts showing statistics were insignificant

Researchers from the U.S. Army and Thailand, working with NIH grant funds, announced they had found the first vaccine that provided some protection against HIV. But a second analysis of the $105 million study, not disclosed publicly shows the results weren't statistically significant. The additional data were available to the researchers when they announced the supposed success, but they chose not to disclose them, said Jerome Kim, a scientist with the U.S. Army who was involved in the study. Click here.

Millions of HIV dollars squandered in Washington, DC

In a city ravaged by the highest rate of AIDS cases in the nation, the D.C. Health Department paid millions to nonprofit groups that delivered substandard services or failed to account for any work at all. $400,000 was paid to a nonprofit organization, launched by a man who once ran one of the District's largest cocaine rings, for a promised job-training center that has never opened. More than $500,000 was earmarked for a housing program whose executive director had a string of convictions for theft, drugs and forgery. Click on the picture for the full story of waste within the DC and the HIV industry.

Further evidence the new NIH Director is a superb
choice to lead our country forward in research
Discloses he is predisposed to Alpha-1 and diabetes

In a speech to the AAAS (Advancing Science, Serving Society), the new NIH Director, Francis Collins, MD, PhD, disclosed personal information that suggest he will likely be receptive to the concerns of those with non-HIV illnesses, including the 6,000+ rare illnesses as well as diabetes. Dr. Collins candidly disclosed that an analysis of his genes showed he is a carrier of Alpha-1 antitrypsin deficiency disease and that he is pre-disposed to having Type 2 diabetes. The latter finding prompted him to institute a workout regimen that resulted in the loss of 20 pounds, further distancing himself from the possibility of being diagnosed with this malady. You may listen to Dr. Collins describe this on YouTube by clicking on his picture. Our thanks to our Board member, Dave Courtney, who brought this to our attention. Dave recently received a double lung transplant due to his illness: Alpha-1 Antitrypsin.

Board member, William Remak, speaks out
strongly on behalf of those with hepatitis C

FAIR Board member and Chair of the California Hepatitis C Task Force, William Remak, testified at a White House Office of AIDS Policy meeting of Alameda County, California residents. The predominantly African-American attendees were expressing displeasure that they are not receiving more funding from our government. With hepatitis C now the major killer of AIDS patients but receiving little respect, Bill courageously stated the following: "I have witnessed favoritism [for HIV patients] which is unconstitutional, just because there are some with a condition who are louder and more demanding than others. If you had a room of 100 average people, you would have two people with chronic hepatitis C in that room. Now if you took 100 people with hepatitis C and put them in one room--two of them would also have HIV/AIDS. Now imagine if the two with HIV/AIDS determined the policies for the other 98 people who had mono-infected hepatitis C. Would you feel that the other 98 people with Hepatitis C would be well represented? The Viral Hepatitis community should be funded by its own right and merit based on required needs. People with viral hepatitis do not want to play second-fiddle to people with HIV/AIDS. We want our own identity. Anything less is insulting!"

West Nile Deaths headed toward zero,
yet WNV still receives disproportionate funding

The latest statistics from the Centers for Disease Control and Prevention for 2009 show West Nile Virus deaths and cases headed towards zero. The number of deaths through 12/1/09 was 28 and the number of cases plummeted to 637 which results in exorbitant funding for WNV of almost $1.5 million per death and $64,364 per patient. Click on the mosquito to see the full report on WNV and a comparison to other illnesses is below.

Overseers of US organ-donation admit publicly
serious failure in their efforts with altruism

Donate Life America was founded by our government's organ-donor overseers in 1992 to educate the public about organ, eye and tissue donation, including a national effort to sign up new drivers at the DMV. Their most recent press release clearly indicates their abject failure. They admit only 38 percent of licensed drivers are signed up to be donors, almost 105,000 are on the waiting list waiting for an organ or death and that 18 people die daily while waiting. It may be noted that even if 100 percent of drivers were licensed, there still would not be enough organs with altruism. To be proactive in advocating for test project of the new organ-donor policies our Board of Directors recommends, click here.

National Support by physicians and health advocates
for FAIR's Organ Donor and Enhancement Act grows

FAIR Director of Public Information Services for New Organ-Donor Policies and liver transplant recipient, Jerry Jackson (seen pictured at left), has prepared a bill, the Organ Donor Enhancement Act for introduction into any state Senate or Assembly and it has garnered the support of many eminent physicians, including surgeons, medical directors, major organizations like the Latino Organization for Liver Awareness and numerous patient advocates. The bill will respect the rights of all citizens to not be organ donors by giving them the right to opt-out of the organ-donation system and the bill is revenue neutral--no new funds are needed to fund it. Senate Bill, Assembly Bill, both with supporters listed.

Traveling with FAIR

FAIR joined with the Sun City Palm Desert, California Community to give a very educational health seminar entitled "Fighting for Health in the 21st Century" with presentations by many experts, including a Nephrologist, Hepatologist, Cardiologist, Plastic Surgeon, Rheumatologist, infectious disease MD specialist, and two attorneys who spoke on SSDI, SSI and medical insurance issues. To see pictures from the event, click here.
Since the year is ending, FAIR has ceased exhibiting at conventions due to the thousands of new patients who joined this year.

The media and HIV/AIDS hype refuted
(Note: the FAIR Foundation is an apolitical 501(c)(3) organization

Newsworthy Headlines?

Colleen Bridger, MPH, Ph.D., Gaston County, NC health director wrote a guest column in their newspaper and stated, “If you’ve had sex, you are at risk of HIV.” As we wrote in our submitted op-ed rebuttal, her statement is alarmist, lacking in full disclosure and reminiscent of Oprah Winfrey’s misguided statements years ago when she said “AIDS has both sexes running scared. 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.” We also included the CDC's definition of those at-risk for HIV infections and it does not include citizens who are 100 percent sure their partners are HIV-infection free.

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

Where is the $2.93 billion in HIV research being spent and who is receiving the exorbitant funding? Click on the hands reaching out for the cash.

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!

FAIR's Board of Directors at work
In our continuing "get acquainted with the Board" series,
we are honored to profile the following Board members.

Pedro Baron, MD is Director of Pediatric and Adult Liver Transplantation and Associate Professor of Surgery at the Loma Linda University Medical Center in Loma Linda, California.
Curriculum Vitae

Phil Berry, M.D., Advisory Committee for Organ Transplantation (ACOT) appointed by Secretary Tommie Thompson, Health & Human Services, 2001-2004; Past President, Texas Medical Association; President, Texas Medical Assoc. Foundation; Past Member, Board of Directors and Finance Committee, UNOS; Co-founder of the Southwest Transplant Foundation.
Dallas, Texas An uplifting profile of Dr. Berry by the Dallas Morning News here; Curriculum Vitae

Waldo Concepcion, MD, FACS, is Chief of Clinical Transplantation and Chief of Pediatric Kidney Transplantation at Stanford University School of Medicine, Stanford, California
Curriculum Vitae

David Courtney, Patient Advocate & post-lung transplant patient due to Alpha-1-Antitrypsin lung/liver disease (see our Focus Disease below); Member, Public Policy Roundtable on Organ Donation Joint Commission on Accreditation of Healthcare Organizations (JCAHO); President, Texas Panhandle Chapter, Transplant Recipients International Organization (TRIO); Vice President, Director of Public Relations, The Presumed Consent Foundation, Plainview, Texas

FAIR Continues its dental plan for transplant patients

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.

FAIR Profiles States

What are the top ten causes of death for the citizens of Alaska and Alabama 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.

yet it still receives 10 percent of the entire research budget

UNAIDS announced new HIV infections may have decreased by 17 percent in the past eight years. This mirrors what is happening in the USA as evidenced America's top HIV researcher's comments who admitted their success is "breathtaking" with HIV patients living normal lives. Video
Exorbitant funding continues for HIV patients as reported for 2008:
- $535 million for the Centers for Disease Control
- $267 million for HOPWA, the program that has provided billions to help HIV patients pay housing expenses
- $104 million for SAMHSA which to help them with substance abuse and mental health issues
- $7 million to help them through the "Office of Minority Health"
- $2 billion, yes, billion, to the Ryan White programs, when the patient cannot pay the bill, the Ryan White program pays it for them.
- A grand total of just under $3billion dollars.
A new report shows 97 drugs and vaccines in development for HIV/AIDS. This is in addition to the many dozens in place now. How many are in use for your illness? For example, for hepatitis C, which is responsible for more deaths in AIDS patients than the opportunistic infections that used to kill AIDS patients before they obtained very effective drugs? 5 for HCV.
Report: Some patients with HIV experience an improved quality of life following their diagnosis.
Report: Long-term HIV treatment doesn't damage kidney function.

The States continue great success against HIV/AIDS

What percent decline in AIDS deaths have been achieved in America's states? Illinois ↓93, Kentucky↓98, Minnesota ↓90, Oklahoma ↓97, Alaska ↓84, Connecticut↓91, Hawaii↓93, Pennsylvania ↓98, W. Virginia ↓92 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, Now there are 4,103 listed for HIV and 4,351 for AIDS. Find out how many for your disease by clicking here. For example, there are a total of only 735 for Alzheimer's Disease, 886 for COPD, and 883 for hepatitis C (many involving HIV & HCV).

World news reports for HIV like no other illness

What kind of attention does HIV get in the media. Well, we know it preoccupies much of the media health focus as evidenced by these numerous articles, indeed, hundreds of HIV news from one source alone since our last newsletter.

FAIR Members' Soapbox Alerts continue

...this month to those suffering from a disease, chronic obstructive pulmonary disease (COPD), that is closely associated with our Focus Disease below . To easily send an alert today to President Obama, VP Biden, your Senators and Representatives in support of fairer funding for this illness, click the Soapbox logo!

Focus Disease:
Alpha-1-Antitrypsin (AAT) lung/liver disease

AAT is... a condition that is passed from parents to their children through their genes. This condition may result in serious lung and/or liver disease at various ages in life. For each physical trait a person inherits from their parents, there are usually two genes and one gene comes from each parent. People with Alpha-1 have received two defective alpha-1 antitrypsin genes--one defective gene from their mother and one from their father. Illness can occur also if a patient only has one abnormal gene. This abnormal condition results in low or no production of a protein called alpha-1 antitrypsin. This deficiency leads to damage of various organs, principally the lungs and liver in adults and children. Symptoms can surface at a very early age or in adulthood and relate to the lungs or the liver. People with one normal gene and one defective gene are called “carriers”. Carriers may pass the defective gene on to their children.
AAT is a type of protein called a "protease inhibitor." AAT normally works to protect the lungs from a naturally occurring destructive enzyme that is produced by the lungs in response to infections and toxins (such as cigarette smoke). Without enough AAT, these enzymes slowly destroy the lung tissue. AAT deficiency is caused by a genetic defect that results in not enough AAT in the liver, lungs, and blood. Persons with this deficiency may also develop liver disease.
AAT's cause...is deficiencies in the SERPINA1 gene which provides instructions for producing the alpha-1 protein.
AAT symptoms when lungs are affected: Shortness of breath, wheezing, chronic cough and sputum (phlegm) production (chronic bronchitis), recurring chest colds, decreased exercise tolerance, non-responsive asthma or year-round allergies, bronchiectasis (destruction and widening of the large airways) Most adults with severe deficiency will develop emphysema, which often begins before age 40. Smoking can increase your risk and will always exacerbate the illness.
AAT symptoms when the liver is affected: Eyes and skin turning yellow (jaundice), swelling of the abdomen (ascites) or legs, vomiting blood (from enlarged veins in the esophagus or stomach), unexplained liver problems or elevated liver enzymes, severe fatigue, mental confusion and itching.
AAT can be fatal: Some patients, like our Board member, Dave Courtney profiled above, experience destruction of their lungs and require lung transplant and others require liver transplant. Due to the shortage of organs with our country's reliance on the insufficient policy of altruism, many patients die while waiting for an organ.
AAT is not uncommon: Studies show that AAT deficiency may be more common than once thought. Alpha-1 antitrypsin deficiency occurs worldwide, but its prevalence varies by population. For example, in Scandinavia this disorder affects 1 in 1,500 to 3,000 individuals, but it is less common in Asian and black populations. In North America, alpha-1 antitrypsin deficiency affects 1 in 5,000 to 7,000 people with 1 in 2,500 in the United States. The condition is most common among Europeans and North Americans of European descent.
Contributor to COPD: A separate condition, Alpha-1 Antitrypsin Deficiency, is a significant contributor to COPD and Alpha-1 alone is one of the most common and serious hereditary disorders in the world. It affects individuals in all racial groups worldwide, not just in Europe as previously thought. (Frederick J. de Serres, PhD, "Worldwide racial and Ethnic Distribution of Alpha-1 Antitrypsin Deficiency," Chest/122/5/November, 2002) and de Serres "Alpha-1 Antitrypsin Deficiency Is Not a Rare Disease but a Disease That Is Rarely Diagnosed," Volume 111/Number 16/Dec. 2003, Environmental Health Perspectives. More on Dr. de Serres here and note this update: To view Dr. de Serres most recent impressive work on Alpha-1 Antitrypsin Deficiency (ATD) in 69 counties worldwide that demonstrates the very large numbers at risk of ATD worldwide in those countries where he has found genetic epidemiological data in the peer-reviewed medical literature, click here.)
The World Health Organization (WHO), American Thoracic Society (ATS), and the European Respiratory Society (ERS) recommend that all individuals with COPD be tested for Alpha-1.
Need an Alpha-1 support group to help you? Click here.
AAT testing? To diagnose AAT, a blood test is required with genetic analysis. The Medical University of South Carolina (MUSC), with the support of the Alpha-1 Foundation, has developed a free and confidential opportunity for testing. For information on how to participate in the ACT Study and be tested for Alpha-1 or to participate in the Research Registry Program, click here.
Fairness? The NIH's is spending such a small amount on Alpha-1 that it is not even listed on the chart showing NIH research allocations. $2,774 is being spent on each patient death from HIV/AIDS in 2009.
Alpha-1 and all other diseases except HIV/AIDS would receive larger research allocations under the FAIR Foundation's policies.

Facts and statistics from the Alpha-1 Foundation, Alpha-1 Association, Medline, medicine.net.

The FAIR Foundation is growing fast, but we need more members to change Congress and the NIH. Please help us by forwarding this Newsletter on to your associates and friends. With strength in numbers, we WILL achieve fair and equitable NIH distributions for COPD and ALL non-AIDS diseases. Member sign-up information is confidential.

Please consider FAIR this year for your
end of year tax-deductible contributions...

As you consider your year-end tax-deductible donations, we would be most grateful for your financial support. Please help us benefit all who need fair and equitable research allocations for their disease of interest and to achieve new organ-donor policies to reverse the organ-donor crisis in America. Indeed, we are the only nonprofit organization solely dedicated to fairness in research funding and we respectfully ask for your help in funding our effort. Remember, we have no paid employees. Indeed; we are all volunteers so every dollar of your donation will go to continuing our educating Congress and the NIH on the need for change to insure fair funding for your disease of interest. Please make your donation on our secure website or mail a check made out to the FAIR Foundation at 78-629 Bougainvillea Drive, Palm Desert, CA 92211. Thank you in advance for your generosity!

The FAIR Foundation; E-mail fair@dc.rr.com

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.