Ethics and Disease Research

Is it ethical for our government to spend $540,000 per death from West Nile Virus (WNV) versus $13,722 on each diabetic death even though diabetes kills more Americans than AIDS and breast cancer combined and 740 times the number from WNV? An interesting guest editorial in the Infectious Disease News chronicles WNV's downfall and speculates of a rosy future regarding this disease. Click on the ferocious mosquito that, in the entire country, killed 100 people last year.

FAIR's OD Efforts Gaining National Recognition

In addition to working for more equitable governmental research distributions, FAIR and its subdivisions, The Coachella Valley Liver Disease Support Group and Coma Life, are dedicated to helping transplant patients. FAIR has received further national publicity for its efforts in Hepatitis Magazine and Highways Magazine, which goes to over a million RV owners.

                     Focus Disease:  COPD
    (Chronic Obstructive Pulmonary Disease)

•  COPD is...a slowly progressive disease of the airways that is characterized by a gradual loss of lung function. In the U.S., the term COPD includes chronic bronchitis, chronic obstructive bronchitis, or emphysema, asthma (sometimes), or combinations of these conditions.

• COPD is fatal: You may have never heard of it, yet COPD is the fourth leading cause of death in the USA. About 126,128 adults ages 25 and older died from COPD in 2003. Compare to estimated AIDS deaths of 18,017. COPD is projected to be the third leading cause of death for both males and females by the year 2020.

•  COPD is serious: More than 726,000 COPD patients are hospitalized each year due to exacerbations, a severe attack of COPD when patients struggle to breathe.

•  COPD is Expensive: The total estimated cost of COPD in 2002 was 32.1 billion dollars. $18 billion of that was direct costs and 14.1 included morbidity and premature mortality. Medicare expenses for COPD beneficiaries were nearly 2.5 times that of the expenditures for all other patients.

• COPD is common: The American Lung Association estimates that there are 35 million COPD sufferers in the USA. Compare: estimated HIV/AIDS cases: 950,000.

• 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 9-18-07 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 A and B.)

• COPD, gender and race: The prevalence of self-reported COPD is higher in females than males and in whites than blacks. The COPD death rate for females more than doubled between 1980 and 2000, and the number of deaths for females surpassed the number for males in 2000,

• Online Support for COPDers: Gain support and companionship online with the COPD Alert Forum at Yahoo groups. To join, send an email to COPD-ALERT-subscribe@yahoogroups.com. To ask the moderator a question, send an email to vlady.rita@verizon.net.

• Fairness? The NIH's is spending only $452 per COPD death in research versus $162,790 on each patient death from HIV/AIDS in 2006. While in Washington, DC, FAIR's Founder met with Congressional Health Aides of members of the COPD Caucus and encouraged reversal of these disproportionate funding statistics.

• COPD and all other diseases except HIV/AIDS would receive larger research allocations under the FAIR Foundation's policies.

Facts and statistics from the NIH's National Heart, Lung & Blood Institute, the CDC's National Center for Environmental Health and the COPD Alert Fact Sheet. For more information on COPD visit the COPD-Alert Support & Advocacy Group and the US COPD Coalition.

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 free HERE. With strength in numbers, we WILL achieve fair and equitable NIH distributions for COPD as well as ALL other diseases. 

The FAIR Foundation, 78629 Bougainvillea Drive, Palm Desert, CA 92211   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.