Travel with FAIR ...to St. Louis, MO Dr. Darling urges all of FAIR's Missouri members to join him for his speech at the joint annual convention to be held by the International Transplant Nurses Society (ITNS) and Transplant Recipients International Organization (TRIO) on 9/24 & 9/25 at the Millennium Hotel in Saint Louis, Missouri. Dr. Darling will also participate in a debate forum in which he will be joining with Dr. Thomas Peters, Chief of Transplantation at the University of Florida Shands Hospital. They will argue in favor of reversing America's organ-donor crisis with financial incentives to promote organ donation. In opposition will be Gabriel Danovich, M.D., Director of UCLA Kidney & Kidney/Pancreas Transplant and a living organ donor. To see more information and register for the TRIO event with Dr. Darling, click the logo and for the ITNS portion of the convention, click here. ...to Los Angeles and Minneapolis for American Diabetes Association Expos Join FAIR's Board member, Bill Remak, at the ADA Expo in Tampa, Florida on September 13th and at another ADA Expo in Minneapolis, MN on October 11th where eleven thousand diabetics and their family members are scheduled to attend. Bill signs up a new member every few minutes so he'll be busy but I know he'd love to see you. ...to Detroit, MI for yet another American Diabetes Association (ADA) Expo For this ADA Expo in the Detroit suburb of Novi, Michigan September 20th at the Rock Financial Show- place we are honored to have two of our Michigan FAIR Foundation members staffing our booth and signing up new members. We invite you to come to the Expo and say hello to Debbie Green, pictured on the right, and Pam Sienkiewicz to whom we extend our sincere thanks! ...to Los Angeles for a Donate Life Conference Many new members who are organ donors, organ-donor family members and organ recipients joined at this conference at the Omni Hotel in Los Angeles sponsored by OneLegacy, the largest organ-procurement organization in the US. At this event, the Donate Life Float for the 2009 Rose Bowl Parade was revealed. To see this beautiful float and the text explaining it, click the OneLegacy logo.

Mrs. California joins with FAIR to promote new organ-donor policies at the Mrs. America contest

When FAIR learned that Mrs. California, Tiffany Ellison's, son may need a liver transplant we phoned her and Tiffany enthusiastically agreed to make America's need for new organ-donor policies her platform at the Mrs. America contest, both with the judges and with reporters. Tiffany also offered to introduce our Director of Information Services for new Organ-Donor Policies, Jerry Jackson, to the two California senators who were judges when she won Mrs. California. We extend our great appreciation to Tiffany!

Blogs now extending the reach of FAIR and Coma Life

The message of the FAIR Foundation and our Founder's book, Coma Life, is also being spread in personal Blogs. The latest is the very informative Blog, "The Real Life" by pre-transplant patient, Nancy Real, of Apple Valley, CA. You can read Nancy's Blog entry on FAIR as well as extensive information for transplant patients by clicking on her logo.

FAIR institutes dental plan for pre-transplant patients

The FAIR Foundation, working in conjunction with the American College of Prosthodontists, has developed a national dental plan for pre-transplant patients. We will attempt to provide pro-bono dental care to assist a qualifying pre-transplant patient in his/her attempt to be listed, or re-listed, for transplant. Our great thanks to our Board member, Charles Goodacre, DDS, MSD, who arranged this dental plan with his organization, the American College of Prosthodontists. The requirements for a pre-transplant patient to qualify can be viewed by clicking the healthy smile.

The FAIR Foundation's Liver Disease & Support Group
begins advertising campaign

Our support group has helped hundreds of patients throughout the USA and in our local area of Southern California with education and life-saving referrals. We bring to you our new display ads and urge you to let your friends with liver illness know of our efforts so we can also help them. Information on our meetings is viewable by clicking on the logo.

FAIR Profiles States

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

Roche Pharma to cease research on HIV drugs, will continue its "promising pipeline of products for hepatitis C"

Roche, the manufacturer of some HIV drugs has informed HIV clinicians and treatment advocates that it is halting research into new HIV drugs but will continue in its efforts to cure hepatitis C. The announcement ends a lengthy involvement in the HIV field for Roche. Full Story.

Powerful Cartoon illustrates HIV-HCV $$ disparity

Gary Hallgren is nationally know for his artwork and was even featured on Oprah's TV show. The Founder of the Massachusetts Hepatitis Patient Empowerment Project (MA HEP PEP), and FAIR member, Peter Fisher, recommended a concept and design to Gary for a cartoon to illustrate the disparity in funding for HIV/AIDS versus hepatitis C. We found it quite impressive and you may view it by clicking on the MA HEP PEP logo.

Funding HIV-hepatitis disparity not limited to the NIH

We've seen the exorbitant favoritism for HIV by the NIH; what about the Centers for Disease Control (CDC). In Table 6 of an extensive report by the California Research Bureau, the CDC reports a projected budget of $691 million for HIV/AIDS versus $17,504 for ALL hepatitis viruses. Although there are millions more sufferers with hepatitis viruses than those with HIV, the CDC's priority is clear. Our thanks to FAIR member Corinne Gordon of the Help & Education for Liver Patients (HELP!) for bringing this to our attention.

AMA: Financial Incentives Could Improve Organ
Donation And Reduce Donor-Recipient Gap

In a recent press release, the American Medical Association agreed with the FAIR Foundation's template letter in support of pilot projects of financial incentives to reverse America's organ-donor crisis of almost 100,000 waiting and one of them dying every hour while waiting.

PARADE Magazine respondents favor
payments to living kidney donors

According to respondents to a PARADE Magazine poll asking if living kidney organ donors should be paid, 67 percent said "Yes" versus only 33 percent against this life-saving recommendation. 75,000 of those on the transplant waiting list need kidneys and another 500,000 patients are on kidney dialysis but NOT considered sick enough to be placed on the waiting list. Yet, this poll states that Dolph Chianchiano, senior vice president for health policy and research at the National Kidney Foundation, thinks payments to donors are immoral. We suspect that if Chianchiano had a child in need of a kidney to avoid death today his outlook would be different. Indeed, is it moral or ethical to allow the present crisis--one waiting list patient dying every 59 minutes—to continue and to be against new organ-donor policies that will end this reversible loss of life? Our thanks to Sally Satel, MD, one of our template letter co-signers, who refuted Chianchiano's negativity in the poll's accompanying story. In addition, we are grateful to FAIR member Maxine Morse of Worcester, Massachusetts, for bringing this PARADE Magazine poll to our attention. You may cast your vote by clicking on the PARADE logo.

Experts say Presumed Consent will curb organ trafficking

Professor Maqsood Noorani, a former transplant surgeon writes in the British Medical Journal about his first hand experience as part of a transplant team trying to save the lives of British patients who have suffered complications after buying a kidney from a live donor in Pakistan. Noorani believes that Presumed Consent, one of the policies we recommend in our template letter in support of new organ-donor policies, will help solve these organ-trafficking problems.

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

With one person dying every hour and 99,400+ sick patients waiting for the "Gift of Life," you can help 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, As of 9/1/08 there are 3,865 for HIV. Find out how many for your disease by clicking here. For example, there are a total of only 528 for Alzheimer's Disease, 636 for COPD, 129 for Autism and for our Focus Disease of the Month: 642 for hepatitis C (many involving HIV & HCV).

FAIR Members' Soapbox Alerts continue

...this month to those suffering from our focus disease of the month, hepatitis C (HCV). 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!

Focus Disease of the Month: 
Hepatitis C (HCV)

     This month we profile Debbie & Ted Green, Founders of the Greenview Foundation's Hepatitis C Research Fund, whose mission is raise money for medical research at the University of Michigan hospitals to help find a cure and/or better treatment for Hepatitis C. To find out more about this charity, just click on the logo above. If you'd like to contribute to the University of Michigan fund-raising effort, you can do so by purchasing Debbie's great cookbook. Details are provided on the website.

     Hepatitis C is deadly: AIDS activists and physicians now admit that more HIV/AIDS patients are dying from liver failure with HCV as a causative factor than they are of the opportunistic infections that used to kill them. Estimated HCV deaths are now equal to that for HIV/AIDS in the USA. 

     Hepatitis C is serious: HCV is the number one cause of liver transplant and there is no vaccine to prevent it. It is spread by blood to blood contact (sharing needles, tattooing, body piercing), not by hugging, kissing or sexual relations, unless there is blood exchange. Symptoms of advanced liver disease from HCV include throwing up blood, severe confusion, ascites, poor clotting, yellow coloring (jaundice), cramps, low cholesterol, kidney failure and diabetes, itching (pruritis), muscle wasting (cachexia), osteoporosis, pain, loss of sex drive,  sodium and potassium imbalances, skin pathology, light stools, dark urine, loss of appetite,  severe fatigue, insomnia, abnormal variations in blood pressure, swollen legs, and low bile output. 

     Hepatitis C is growing: The CDC estimates 1.8 per cent of the population is infected with HCV. September 1st population =  305,006,919 X 1.8 per cent =  5.5 million Americans estimated as having HCV. Compare to 950,000 - 1,000,000 estimated to be living with HIV/AIDS. 

     Hispanics: Latinos have more than a 40 percent greater chance of being infected with hepatitis C than the general population (Latino Organization for Liver Awareness). 

     Afro-Americans: Afro-Americans are the most severely affected race due to their predominately having the strain (genotype 1) that is most resistant to treatment. 

     Hepatitis C and all other diseases except HIV/AIDS would receive significantly larger research allocations under The FAIR Foundation's recommended policies.

     Fairness? The NIH is spending only $20 on each patient with HCV in research versus $3,052 on each AIDS patient. This has resulted in 5 drugs for HCV and 79 new HIV AIDS drugs with 82 already approved. 

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 hepatitis C patients 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.