Points of Interest on NIH Research Allocations as of 012/15/08

The CDC estimates 14,016 USA AIDS deaths in the most recent report. 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: 10,778.

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 $3,052 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 2007: 3,623 cases and 124 deaths, which results in $15,564 spent in research per death. 2007 cases through 2/5/08 = 115 deaths, 3,576 cases. Does this justify this disparity in bio- medical research funding?

Sudden Infant Death Syndrome (SIDS) estimated deaths at 2,500. HIV/AIDS under 13 = thirteen deaths.

Total USA HIV/AIDS budget for 2009 totals just under 24.1 Billion. $15 Billion for care, cash & housing assistance & prevention for patients. Total AIDS Funding since day one: $$ 300 Billion dollars through 2009--almost 1/4 of a trillion dollars) ($150B thru 2004 from Henry J Kaiser Foundation and over $20+Billion every year since then + Congress just 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, 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 for all facts we report.

Color pie chart and graph illustrating disparities in funding.

Updates on Funding for your Disease of Interest.

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

Please take a moment to view our 28-member Board of Directors of physicians 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

View a powerful 14 minute video by the American Diabetes Association and ABC Television

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 total 2006 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, 7.8 million die of CVD, 3.4 million from cancer, respiratory infections 1.8 million versus 1.4 million from HIV. See world clock here.

Send a prepared letter to the President and your Congresspersons in support of new organ donor policies to reverse USA's organ donor crisis.

FAIR's Privacy Policy.

FAIR is an acronym for Fair Allocations In Research.

FAIR is fair.
Volume 6: Issue 4
 

FAIR NEWSLETTER: December 2008
 


Eminent Florida surgeon joins FAIR's Board of Directors

We are most pleased to announce that Thomas G. Peters, MD, FACS, FASN has joined our Board of Directors. Dr. Peters is Director of the Shands Jacksonville Transplant Center; Chief, Transplant Service Shands Jacksonville Medical Center, (formerly Methodist Medical Center) and Professor of Surgery, University of Florida College of Medicine, Health Sciences Center Jacksonville. You may read a brief bio on Dr. Peters and his full 31 page curriculum vitae by clicking on his picture. The Shands Internet CV listing is here.

TOP USA AIDS researcher admits their
research funding increases have ended

Anthony Fauci, MD, director of our government's $2.9 billion HIV budget, said "increases in the budget that we had hoped for will not be forthcoming" because of the current financial crisis in the U.S. He added that he is concerned the situation could hinder the "enthusiasm and ability of philanthropic research." We point out that the lavish increases HIV has enjoyed have not been matched by other illness except CVD and cancer and the current financial crisis will negatively impact all non-AIDS illnesses to a greater degree than HIV since their funding was minimal to begin with. For example, the increase in HIV funding since 1999 is greater than the entire 2009 diabetes budget even though diabetes kills more Americans than AIDS and breast cancer combined. Click on Dr. Fauci for his personal description of the great success against HIV.

 New HIV approach: request almost $5 billion more
to reduce infections & for "preventive research"

In a striking display of favoritism for HIV patients in a time of our nation's financial crisis, Dr. Fauci joined with the CDC Director, Julie Gerberding, MD, (L) and Kevin Fenton, MD, (R) the director of CDC's National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention in front of the House  Committee on Oversight and Government Reform and requested an additional $4.8 billion for social work to lower HIV infections, "expand HIV testing, research new prevention techniques and evaluate prevention programs." Keep in mind the 2009 budget request for HIV is already $24.1 billion. Indeed, since the onset of HIV, our government has budgeted almost $300 billion dollars (see itemization in left-hand column facts). Imagine, $700 billion financial bailout of our country and we've spent/budgeted almost half as much on one illness. When will our government's politicians have the courage to say "No, in fact it's time to reallocate from HIV to other illnesses that do not have such effective remedies, remedies that have such "breathtaking" success as stated so eloquently by Dr. Fauci here.

FAIR objects with letters and video to all 41 members
of the Committee on Oversight and Government Reform

Our CEO joined with FAIR Board members and wrote a letter to each and every member of the entire House Committee on Oversight and Government Reform. We included our brochure, a fact sheet showing the plummeting deaths from HIV, itemization of billions budgeted for HIV already, a CD with Dr. Fauci's powerful comments (see paragraph above) and stated, "We are respectfully requesting that this request for an addition $4.8 billion be denied and that consideration be given to increasing the funding for non-AIDS illnesses. Indeed, with budgetary limitations now in place due to our government’s financial crisis that prevent overall increases, we recommend that Congress and the NIH do what homeowners are doing: reallocating funds where appropriate, in this case from HIV to other illnesses that have not had the same success that Dr. Fauci has laudably achieved and describes so well.

70 AIDS groups request $200 million more

70 HIV/AIDS advocacy and service organizations recently sent a letter to House Appropriations Chair David Obey (D-Wis.) and Labor-HHS-Education Subcommittee ranking member James Walsh (R-N.Y.) asking for a $200 million increase in federal funding for prevention programs in fiscal year 2009.

CBS, NBC, ABC, AP News: Global AIDS funding overblown

All major news organizations echoed global criticism of HIV funding favoritism in this article which mirrors our mission statement. David Brinkman (left), Director of the Palm Springs, CA Desert AIDS Project organization strongly criticized the local newspaper, the Desert Sun, for even reporting this story that was reported worldwide. We countered his biased, incorrect input in our letter to the editor with footnotes to the facts and we hope Mr. Brinkman corrects his erroneous statements in the future. After being published, our letter created some vicious responses from detractors who clearly know little about FAIR and whose posts were subsequently banned by the newspaper.

AIDS a major killer of African Americans in America?

Is HIV/AIDS the major killer of African Americans in the USA as one would discern from the media's assertions that HIV is a crisis in the black communities, including CNN's reporting that AIDS in black America rival that of some African nations? No, according to this report from the American Heart Association that lists the leading causes of death for blacks in America.

Can hepatitis C patients be organ donors? CDC says No.
FAIR member objects, we agree, and write the Director

Pam Langford (L) is a FAIR member and Founder of the H.E.A.L.S. of the South (Hepatitis Education Awareness & Liver Support). Pam brought to our attention that the Centers for Disease Control & Prevention was erroneously reporting on their web site that citizens with hepatitis C (HCV) cannot be organ donors. Since this false information might have led to deaths of those on the waiting list, we wrote to the CDC Director, Dr. Gerberding, with extensive factual information from UNOS and two of our Board members, Lorenzo Rossaro, MD and Donald Hillebrand, MD, clearly showing HCV infected individuals can be organ and tissue donors. Thanks, Pam!

FAIR member refused Social Security disability income benefits & Medicare, FAIR's members to the rescue: Medicare coming and 2 year waiting period is eliminated

Can you obtain Social Security income and Social Security Disability income benefits after being denied? Yes. Do you always then have to endure the two-year waiting period before you can be granted Medicare for transplant? No. For the full story on how FAIR and its members helped another FAIR member and his wife through this maze to obtain SSDI and Medicare to pay for transplant, click the fast-track logo.

Wall Street Journal editorial echoes FAIR's position
on incentivizing organ-donation and Sen. Spector's bill

In a 12/17/08 editorial, the Wall Street Journal voiced support for incentivizing organ donation and passage of Senator Specter's bill, the the Organ Donation Clarification Act of 2008 that would allow states to provide such incentives to living and deceased donation. FAIR has been promoting such incentives in its template letter, endorsed by many eminent physicians, et al, for years.

FAIR's Organ Donation Enhancement Act
 would also save many lives

Jerry Jackson, FAIR's Director of New Organ-Donor Policies and a liver-transplant recipient, concluded work on "The Organ Donation Enhancement Act" which has many eminent physicians and patient advocates endorsing this bill. With the help of our Board member and Chair of the CA HCV Task Force, Bill Remak, it is being presented to California Legislators in the hopes they will sponsor this bill to reverse America's organ-donor crisis. If you know of a California Legislator who may wish to co-sponsor this bill please contact Jerry at jacksonhi5@verizon.net.

News report: "Where you list for liver transplant does
not affect when you get transplanted." FALSE!

When it was announced that the UC Davis Liver Transplant Program in Sacramento was closing, the Sacramento, Ca newspaper reporter's article stated, ".... changing to a different center shouldn't increase anyone's wait for an organ, doctors said.” Nothing could be further from the truth as we wrote in our letter to the reporter with our hopes that she would correct this error and be helpful in saving many more lives. In the USA's allocation of livers, some geographic areas transplant much sooner than in other regions.
 

 
Travel with FAIR

to the American Diabetes Assoc. Conventions in...

...Detroit, Michigan

For this ADA Expo in the Detroit suburb of Novi, Michigan at the Rock Financial Showplace we were honored to have two of our Michigan FAIR Foundation members, Debbie Green (L) and Pam Sienkiewicz (R)  staff our booth and sign up a new members every 2.3 minutes for six hours! We invite you to view many pictures of our new Michigan members by clicking on Debbie or Pam.

...Minneapolis, MN and Tampa, FL

FAIR's Board member, Bill Remak, at the ADA Expo in Tampa, Florida and at another ADA Expo in Minneapolis, MN. In Tampa Bill broke all FAIR records by signing up a new member every 1.7 minutes for 5.5 hours. Bill went beyond the call of duty by showing up to man the event below, even though he fell and broke his collarbone in Minneapolis. Kudos to Bill!

...Marin Country, CA for the Marin Senior fair



FAIR exhibited at the Marin County, California Senior fair and signed up many new members with Bill Remak, once again, leading the way.

 

...to St. Louis, MO

 
At the Transplant Recipients International Organization (TRIO) annual convention in Saint Louis, Missouri Dr. Darling (L) gave the FAIR presentation which was followed by a debate in which he joined with our new member of the Board of Directors, Thomas G. Peters, MD, (2nd from left) in arguing in favor of pilot projects to determine the possibility of reversing America's organ-donor crisis with financial incentives (to promote organ donation). In opposition was Gabriel Danovich, M.D., Director of UCLA Kidney & Kidney/Pancreas Transplant (2nd from R) and a living organ donor (R), Tom Falsey. Every hour one patient on the waiting list or one who was delisted due to becoming too sick dies and we believe Dr. Darling's and Dr. Peter's presentations brought this crisis to light and clearly outlined the solution.

TRIO's Board of Directors votes 100 percent in favor
of test projects to see if rewards will increase donation

After the St. Louis convention debate, the TRIO Board of Directors voted 100 percent in favor of test projects to see if rewards will increase donation. We applaud their President, J.T. Rhodes, CPA, (picture-R) and the Board for their courageous action! If you would like to provide positive input in support of financial incentives and TRIO's decision, you may do so at www.trioweb.org or by email to Mr. Rhodes at jtrhodescpa@msn.com. We urge you to do so.

.. to the Sinatra Auditorium, Palm Springs, CA

FAIR's Liver Disease & Support group produced a informative health seminar with presentations by five physician specialists and two attorneys specializing in social security and medical insurance issues. To see the wonderful lineup of presenters which was made possible by the generous sponsorship by pharmaceutical companies, Roche and Astellas, click FAIR's logo.

 



yet it still receives 10 percent of the entire research budget

World Health Organization slashes AIDS
mortality projections

The World Health Organization now reports a future expected death total from HIV/AIDS that is 82 percent lower than the previous estimate. It is uplifting to see that global results will mirror the great success seen here in the USA.

New York City HIV/AIDS death fall substantially


In Mayor Bloomberg's 2008 annual report, he reports deaths in New York City from HIV/AID have fallen again representing a 33 percent decline in just five years. Overall, the State of New York has had a reduction of 86 percent.

 

Canada mirroring the success in the USA

Canada's Centre for Infectious Disease Prevention and Control  reports a stunning 96 percent drop in HIV/AIDS deaths from a high of 1,501 to 59 (report page 55). Yet AIDS activists are stunned by the lack of discussion of HIV from the candidates. Perhaps more emphasis on other diseases like diabetes is most appropriate. In Canada, diabetes kills approximately 6,000 annually and contributes to the death of about 25,000 more. While diabetes kills six percent of Canadians, cardiovascular disease kills 1 of every 3 Canadians.

Global Fund Grants now total $14 Billion for
HIV/AIDS, Malaria & TB Efforts

The Global Fund To Fight AIDS, Tuberculosis and Malaria on Monday announced it has approved nearly $3 billion in Round 8 funding to improve access to HIV treatment and prevention and help reduce deaths from TB and malaria. The funding brings the total amount of aid awarded by the Global Fund to $14.4 billion.

HIV/AIDS Doctor of Pharmacy David Hachey
"...extended life expectancies...are almost normal"

HIV/AIDS Doctor of Pharmacy David Hachey (L): "For someone who gets an HIV diagnosis, the life expectancy is very good. The medications we're using to treat it are giving people extended life expectancies that are almost normal," said Hachey, who ...has been working with HIV patients for 10 years. "A lot of the fear we saw in the 1980s and 1990s of people dying, now we're just not seeing that," he said.

Washington, DC makes significant gains against HIV

Although a poorly written report by the Kaiser Foundation that states HIV is transmitted by heterosexual sex without clarifying "heterosexual sex with someone who has HIV," this report does show excellent success against HIV in the District of Columbia.

Newsweek: Medical advances are helping
many HIV patients live into old age

Magazine's revealing feature article dramatized the great success against HIV while focusing on the aging effects of that disease alone without any mention of the aging effects of other non-HIV illnesses such as Alzheimer's, Parkinson's, etc.

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.

 UK Minister launches $350 million more
for HIV/AIDS research


Utilizing statements filled with hyperbole that are in direct opposition to the successes against HIV reported above and in previous newsletters, the United Kingdom minister, Gareth Thomas (L) announced another $350 million for HIV research.
 

2007 HIV/AIDS final funding for social pgms released

How much of the $3 billion federal budget for HIV/AIDS social programs went to your state to help with the housing for HIV/AIDS patients (HOPWA), with their IV substance abuse and mental health (SAMSHA), with their minority efforts (OMH) and with Ryan White funding and CDC funding. Click the hundred dollar bills for the answer.

$1 million more for housing, rent, mortgage
and utility bills for HIV/AIDS patients in Alabama

As reported in the Alabama Anniston Star newspaper, the HOPWA program (see paragraph above) within the Dept. of Housing and Urban Development (HUD) has granted Hobson City, Alabama's HIV/AIDS clinic $1 million for purchasing permanent housing units and supporting the existing units already owned by the clinic. The clinic will also use the grant to continue funding its Permanent Housing Plus program, which helps HIV/AIDS clients pay short-term rent, mortgage and utility bills. Such national housing funding for HIV patients now totals billions of dollars since the inception of the HOPWA program.

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 Liver Disease support group helps
patients in Southern California and nationwide

The FAIR Foundation Liver Disease & Transplant Support Group advertises its So. CA meetings in which our moderators educate patients with liver illness and refer those in need of transplant, we provide national facts on how quickly regions are transplanting patients and we are always available to answer your questions about liver transplant at 760-200-2766. Dr. Darling is a Doctor of Dental Surgery, not an MD, so he does not give medical advice, but with three liver transplants in his history, he can share his opinions and his extensive experiences to help liver transplant patients in need.

A kidney transplant, 2,000 dialysis treatments,
without insurance and never received a bill??

In our support group, we have had some patients experience great difficulty getting insurance, even Medi-cal. Indeed, some have died due to a lack of insurance and therefore, no transplant. This story is difficult to take. With 45 million Americans without health insurance and talk by the Obama administration of providing them with such care, how can we afford to continue to provide such services to those here illegally, including this patient who has had 2,000 dialysis treatments and a kidney transplant that she then lost due to not taking her meds…and she’s never received one bill. Is this fair to those here legally who cannot get health insurance?


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. 

Dr. Goodacre receives Gies Award and is named
President of the American College of Prosthodontists
 

Charles J. Goodacre, DDS, MSD, Dean, Loma Linda University School of Dentistry, is the recipient of a 2008 American Dental Education Association Gies Award. The award is one of eight inaugural William J. Gies Awards for Vision, Innovation, and Achievement, and recognizes outstanding innovation by a dental educator. Dr. Goodacre has also been chosen as President of the American College of Prosthodontists and is a Past President of the American Board of Prosthodontics and an Executive Council Member of the Academy of Prosthodontics. Web CV: http://www.llu.edu/llu/faculty/cgoodacre/

FAIR Board member receives awards in Houston, TX

Ray Hill was named Houston’s Most Prominent GLBT Male Activist by Outsmart Magazine at their annual awards banquet. Ray, who was also first runner up in the "Male Hero" Category, is a past recipient of the ACLU Lifetime Achievement Award for advancing the rights of gay, lesbian and transgender citizens (GLBT), used to be one of America’s most strident AIDS activists. While still helping those with HIV/AIDS, Ray has switched his focus now to calling for fairer funding for non-AIDS illnesses, including hepatitis C and diabetes, the latter having caused amputation of his feet.

Dr. Morse honored by
AIDS Project Worcester Workshop

Quoting from the celebration dinner program, "For his years of dedicated service to the field of public health and for his advocacy for those who would otherwise not be heard, AIDS Project Worcester present Dr. Morse with the Red Ribbon Public Health/Medical Award. Dr. Morse has been a deliberate, passionate and rational advocate for all people of the Commonwealth, whether it be new immigrants, people with addictions, those suffering with mental health issues or those infected with HIV/AIDS." Because of Dr. Morse's influence and impact, AIDS Project Worcester announced that from this time forward the award will be named the "Dr. Leonard Morse Award." Dr. Morse is presently Commissioner of Public Health, Worcester, Mass. and Professor of Clinical Medicine and Family Medicine and Community Health at the Univ. of Mass. Medical School. He is Chair Emeritus of the AMA’s Council on Ethical and Judicial Affairs and Past-President of the Massachusetts Medical Society. Previously, Dr. Morse received the AMA's "Pride in the Profession" award for exemplary work in underserved areas and exceptional volunteerism.

FAIR Board member adds to her impressive resume

Melba R. Moore, MS, Commissioner of Health, St. Louis City Department of Health, St. Louis, Missouri has added to her laudable accomplishments by becoming certified as a Public Health Administrator. Certification is the recognition by the Public Health Practitioner Certification Board that one has acquired and demonstrated competency in the areas established as essential to meeting the professional category within the public health workforce. Such recognition of competency in public health practice may assist state agencies, local boards of health, and other entities in recruiting, hiring and promoting competent local health professionals and serve to foster professional advancement of public health workers. Ms. Moore is a member of the Webster Univ. Arts and Sciences Advisory Board, St. Louis Connect Care, the Regional Health Commission and the John F. Kennedy School of Government for State and Local Executives. Ms. Moore has over 20 years experience in the public sector with management and executive leadership.

FAIR Board member advocates nationally
for FAIR and Alzheimer's disease

Jacqueline Marcell is our Advocate for Alzheimer’s disease, Caregiving, Eldercare Awareness and Reform.  She is the Author of Elder Rage, a radio host with Coping with Caregiving and she also has Blogs on Caregiving: ThirdAge and Alzheimer’s HealthCentral plus a Q&A Column AgingCare. Most recently, Jacqueline reached out to nationally syndicated talk show personality, Dr. Dean Edell, with advocacy for FAIR and Alzheimer's patients. Kudos!
 

FAIR revises "Funding per patient" total for HIV

In response to the Centers for Disease Control now estimating somewhat greater numbers of patients with HIV, we have adjusted our "factslinks" page and the new funding amount when evaluated on a "per patient" basis is $2,774 for HIV/AIDS compared to $39 per diabetic, $29 per cardiovascular disease patient, etc. as seen when clicking on the dollar bill.

California Governor signs new bill requiring health
plans to pay for routine HIV testing 

But what about hepatitis C (HCV) which for many years has been recognized by dozens of AIDS groups as killing more AIDS patients than the opportunistic infections that used to kill AIDS sufferers? Indeed, why did the Senate just pass H.R. 1943 entitled the "Stop AIDS in Prison Act" without renaming it "Stop AIDS and Hepatitis C in Prison Act"? In addition, North Carolina is now only testing prisoners for HIV with no effort for HCV. We ask Governor Schwarzenegger and Assembly member Kerkorian, who introduced the CA bill, Maxine Waters, who introduced the federal legislation, and the North Carolina legislators "Why the favoritism for HIV in testing without recognizing the destructive effects of HCV in our prisons and in our society once infected prisoners are released and spread the disease?

FAIR's CEO & Board input to Institute of Medicine regarding
hepatitis B & hepatitis C research funding vs. HIV/AIDS

The Institute of Medicine Committee on Prevention and Control of Viral Hepatitis Infections in the United States held a hearing to "assess current prevention and control activities and identify priorities for research, policy, and action" for hepatitis B (HBV) and hepatitis C (HCV). Our CEO joined with our Board of Directors in submitting testimony with many facts showing the need for less bias for HIV and reallocation of some of HIV research funding to non-AIDS illnesses, including HCV and HBV.

FAIR Profiles States

What are the top ten causes of death for the citizens of Montana and Rhode Island 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 Montana and Rhode Island, click on their map. For HIV/AIDS deaths in those and all other states, click here.
 


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

Newsworthy Headlines?

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 Bush. 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, and as of 12/09/08 are 3,819. Find out how many for your disease by clicking here. For example, on 12/8 we find 556 for Alzheimer's Disease, 686 for COPD, 694 for hepatitis C (many involving HIV&HCV) and for our Focus Diseases of the Month: Down Syndrome = only 92.

FAIR Members' Soapbox Alerts continue

...this month to those suffering from our focus disease of the month, Down Syndrome and all 6,000+ orphan (rare) illnesses. To easily send an alert today to President Bush, VP Cheney, your Senators and Representatives in support of fairer funding for this illness, click the Soapbox logo!

FAIR's Focus Disease of the Month: 
Down Syndrome 

FAIR frequently profiles patients and families affected by our Focus Disease of the month. In this issue we are pleased to profile Todd and Sarah Palin with baby Trig who has Down Syndrome. When Trig was born, Sarah issued the following uplifting statement: "Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."

      What is Down Syndrome: Down Syndrome is a genetic chromosomal syndrome affecting physical features and usually causing mental retardation.

       Symptoms: There are twenty-two symptoms of Down Syndrome   

       Down Syndrome & treatment? Down syndrome has no known cure. Surgery to correct heart defects and other related congenital abnormalities and antibiotic therapy for recurrent infections have improved life expectancy considerably.

       Down Syndrome Incidence: There are approximately 340,000 cases of Down Syndrome annually. The prevalence is approximately 1-in-800 risk overall for all births, less than 1-in-1,000 for women under 30, 1 in 400 if the mother is 35-40 years old and about 1 in 110 if the mother is over 40.

       Down Syndrome Complications: 40 to 50 percent of children with Down syndrome have congenital heart defects, having Down syndrome increases the risk of leukemia 15-20 times and 100 percent of people with Down syndrome will develop some physiologic signs of Alzheimer’s disease when they are over 35 years old. Other possible complications

       Down Syndrome Survival rate: People with Down syndrome typically live to about 55 years.

      Misdiagnosis? 80 percent of Down’s Syndrome sufferers have undiagnosed hearing problems.

      Testing for Down Syndrome: Pre-natal tests include blood tests, amniocentesis, Chorionic Villus Sampling, ultrasound for neck width, Percutaneous umbilical blood sampling and blastomere analysis before implantation (BABI). Post-birth examinations include DNA, chromosome and thyroid testing.

      Books on Down Syndrome: 16 online medical books are available here.

       Fairness? The NIH is spending $2.9 Billion or $2,774 on each AIDS patient while the amount spent on Down Syndrome is only $17 million. In fact, the NIH is spending, on average, a paltry $200,000 on each of the 6,000 orphan (rare) illnesses. Clearly, more must be spent on HIV/AIDS but the disparity and the lack of research funding by the NIH for Down Syndrome and all orphan (rare) diseases is unfair and needs to be rectified.

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 Down Syndrome and ALL non-AIDS diseases. Member sign-up information is confidential.  

 donate...

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. Thank you in advance for your generosity!  

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.

The FAIR Foundation; E-mail us at 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.

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