The Numbers Game

The Centers for Disease Control (CDC) website estimates there are 351,614 Americans living with HIV/AIDS in 32 states and the US Virgin Islands. To calculate the total for the remaining 18 states, including "those who don't know they have the disease" and "those who test at home," the CDC's epidemiologists, Veterinarian Kate Glynn and the United Kingdom's Dr. Tim Rhodes, used two different models for calculations and came up with new figures ranging from 925,000 to 1,185,000, a difference of 260,000. The CDC and most news organizations (MSNBC) have chosen to report the larger number. The researchers' acknowledgment that the results "include uncertainty" appears to be an understatement. To read of the interesting and creative methodologies used to arrive at these figures, click here.

Epidemiologists have been overestimating
San Francisco's HIV cases in S.F. by 83 percent
Will they return funding (Ryan White, etc.) to the government because of the false reporting? Click on San Francisco's Bay Bridge for the full story..

and as the media reports that a cure for SARS is near, they also state that the death rate from SARS is "extraordinarily high." What does the CDC say? The CDC's current report is that there is no known SARS

Research Clinical Trials Update

In May we reported there were 1,742 clinical research trials for HIV/AIDS. Now there are 1,865. Compare that number to your illness here . Once there, click on the box to include trials that are no longer recruiting patients and omit reference to any one state.

Palm Springs, CA HIV/AIDS Housing Approved

Since the beginning of HOPWA (Housing Opportunities for Persons with AIDS) the Federal government's Dept. of Housing and Urban Development (HUD) has made available over $2.3 billion dollars to create and operate HIV/AIDS housing. HIV/AIDS patients are the only patients to receive such consideration with a separate housing entity at HUD. Now the Riverside, CA County Housing Authority board has approved the County's largest affordable-housing project built for people with HIV/AIDS. It is next to the Desert AIDS Project which serves 2,300 HIV/AIDS patients with one of the largest medical staffs (over 90 employees, physicians, et al here) for HIV/AIDS patients in the country as well as providing its own in-house pharmacy and food for HIV/AIDS patients when needed. Full Story

Revisiting the Solitary and Unusual AIDS Case in NYC

In February we reported that the Commissioner of Public Health in New York City panicked when he declared an emergency over one new, usual AIDS case in a methamphetamine addict. Have there been thousands more such cases? Read an update on that story here.
 

HIV/AIDS Patients Sit-in Protest at Governor's Office

Tennessee's Governor is under siege due to planned cuts in funding for HIV/AIDS patients. The FAIR Foundation is focused on research funding disparities, not treatment issues; however we bring you stories such as this to point out the great success in various states in the battle against AIDS. Such stories are also an opportunity to remind all that in another year, the total funding for HIV/AIDS patients by the USA will be one-fifth of a trillion dollars (Page 2). Tennessee's new infections in 2003: 837 and deaths from AIDS, ever, in Tennessee: 5,125. Full story here.

Focus Disease:  Huntington's Disease (HD)

• FAIR Profiles....the Huntington's Disease Clinical Research Program (HDCRP) in La Jolla, California. Meet the team:
  L-R: Mark Jacobson PhD, Joanne Hamilton PhD, Guerry Peavy PhD, HDCRP Director Jody Corey-Bloom MD PhD, Lisa Snyder MSW, Jody Goldstein BS. For more information on this wonderful team, click here.
   

• HD is...a degenerative brain disease that is now recognized as one of the more common inherited, genetic disorders. It is NOT contagious.

• HD Symptoms: HD slowly diminishes the patient's ability to walk, think, talk and reason. Common symptoms include personality changes, depression and mood swings, slurred speech, having the appearance of being intoxicated, clumsiness, involuntary twitching and difficulty in swallowing.

• HD is serious: Approximately 30,000 Americans have HD and 150,000 are at risk of inheriting HD from a parent. An individual who inherits the gene mutation will develop the disease. HD does not skip generations. It affects all races and ethnic groups. It affects both sexes. Each child of an HD-affected parent has a 50% chance of inheriting the disorder

• Should you be tested? If you are experiencing symptoms or you are hearing that you may be at-risk for HD for the first time, it is important to have a clear understanding of predictive testing and its impact. HDCRP can help you with that important decision; simply click here to learn more.

• HD and Caregivers: God Bless the caregivers who enable patients to live with dignity while ill. They are especially important with HD because eventually, the HD patient becomes totally dependent upon others for his or her care. 

• HD Support Group: HDCRP's La Jolla, CA support group can help you as a patient or caregiver. Click here for their location and schedule.

• Orphan Disease status: HD is an orphan disease, which means that in comparison to diabetes, heart disease, etc. relatively few people have this illness. Since it is relatively rare, pharmaceutical companies do not engage in the necessary research because of the inability to produce their desired return on capital. 

• HD and Research Funding? Huntington's disease is slated to receive $50 million dollars for funding in 2006 from the NIH. FAIR believes this is insufficient. HD and all other diseases except HIV/AIDS would receive larger research allocations under the FAIR Foundation's policies.

Facts and statistics from the Huntington's Disease Clinical Research Center and the National Organization for Rare Diseases (NORD).

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 HD as well as ALL other diseases. 

The FAIR Foundation, Palm Desert, CA E-mail: FAIR@dc.rr.com
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 annually.