Letters to and from the AARP
March 25, 2003
This is the first letter Sharon sent to the AARP. We hope you will read all three letters on this page.
Dear Mr. Novelli,
I am the co-author of an upcoming book about coccidioidomycosis, an incurable disease commonly known as Valley Fever. This disease is caused by the inhalation of C. immitis fungal spores and considered a naturally occurring biohazard. Valley Fever infects nearly 200,000 Americans each year in Arizona, California, New Mexico, Nevada, Texas, and Utah. Since everyone has to breathe, it is contracted easily. The Valley Fever Center for Excellence in Arizona has informed us of cases where it was contracted simply by breathing air while changing planes in the Phoenix airport, by receiving a potted plant by mail that had C. immitis in the soil, and more. Valley Fever’s varied symptoms lead to frequent misdiagnoses. Its worst cases can prove fatal.
Population trends show that senior citizens are flocking to the Southwest, especially Arizona. Unfortunately, senior citizens are the ones most likely to be hit with Valley Fever’s worst infections. I contracted Valley Fever in Arizona and nearly lost my life. If I had known this disease existed, I would not have taken the chance with my health.
It is ironic that senior citizens are encouraged to come to retirement communities and “health spas” where they believe the desert’s hot, dry air can benefit their health and alleviate problems like arthritis. Sadly, rheumatism is actually a symptom of this disease. Valley Fever can be asymptomatic for years and manifest itself later as pneumonia, meningitis, and in abscesses that can destroy victims’ bones and virtually any organ -- including the brain.
In fact, C. immitis is regulated as a select agent in the Antiterrorism and Effective Death Penalty Act of 1996 and the Public Health Security and Bioterrorism Preparedness and Response Act of 2002. In accordance with these laws, anyone possessing, using, transferring, or receiving any of the select agents (including C. immitis) must notify the Secretary of the Department of Health and Human Services and the Secretary of the USDA or is otherwise committing a federal crime. To culture C. immitis in a laboratory setting, one must adhere to Biosafety Level 3 Regulations, only one step below the precautions needed for ebola. However, we are all allowed to live in, work in, and visit areas where C. immitis grows. Anyone in the endemic states can be exposed to this biohazard without penalty.
Risk factors for the airborne presence of this fungus are construction, wind, and any area where digging or exposed soil are visible. Obviously, since C. immitis has been known to travel in the air for hundreds of miles, even these precautions are no substitute for a NIOSH-approved N95 respirator or better. Although anyone can be infected, the groups likely to suffer the most severe illnesses are senior citizens, African-Americans, Filipinos, pregnant women, diabetics, organ transplant recipients, immunosuppressed persons (such as cancer patients, AIDS patients, and people on certain medications and treatments), and even pets. Healthy people of all races and ages, however, can suffer a debilitating lifelong infection or die because of this disease.
People deserve to know what they are getting into. As an AARP member, my husband feels this information should be put into the AARP newsletter. If you prefer, my son David (who is also my co-author) and I could prepare an article for the AARP newsletter about the dangers of coccidioidomycosis.
Please visit our web site at http://www.valleyfeversurvivor.com and view the Facts page so you can quickly be brought up-to-date on the dangers. Since so little information about this disease has been given to the general public, I will share all this information and more in my upcoming book. I intend to lobby the endemic states and the federal government to make sure everyone, especially those who are most susceptible to a severe infection, will be aware of this disease. They deserve the right to decide for themselves whether they are willing to risk their health to go into an endemic region for a vacation, retirement, education, employment, or any other reason.
I hope we can count on your support and begin a working relationship. This is urgently important information. Senior citizens are among those who face the greatest risks and need to know the truth.
Note the AARP's address and telephone number. If you are a member of this organization, perhaps you would like to let AARP President and AARP Chairman and CEO know that you'd like seniors to be warned about the risks of Valley Fever.
August 5, 2003
Although we spent time on other projects, we eventually decided to reply to Ms. Gilliard on August 5, 2003. Our letter follows:
Dear Ms. Gilliard:
In your letter dated April 14, 2003 you stated, “We appreciate your suggestion that one of our publications feature an article about your new book on coccidioidomycosis.” It is apparent that our letter was either misinterpreted or someone did not read our letter in its entirety.
The main focus of our March 25, 2003 letter was not our upcoming book but the need to inform seniors about the severe health hazard coccidioidomycosis poses to them. This incurable disease is also called “Valley Fever” and is a major threat to those living in, visiting, moving to, or retiring to Arizona or other southwestern states. We are writing our book to inform the public and especially high-risk groups about Valley Fever. All one has to do is breathe in an endemic region to be infected for a lifetime.
People over 65 years old have been known to be “a group at extreme risk” for a long time (Dr. Arsura in J Am Geriatr Soc 1997;45:532-3). When organ transplantation, corticosteroid use, cancer, diabetes, and other complications affect seniors, their already high risk is magnified dramatically.
In “Cost-Effectiveness of a Potential Vaccine for Coccidioides immitis” (Barnato, et. al. Emerging Infectious Diseases, Vol. 7.No.5. Sep-Oct 2001) doctors state that Valley Fever’s “illness severity and costs may be higher among the elderly. Reported cases of coccidioidomycosis during Arizona’s 1991-1995 epidemic occurred disproportionately among older adults...The death rate from primary pulmonary infection is as high as 26.8% among persons over 65.” The death rate alone should show that accurate, up-to-date information must be given to seniors as soon as possible.
I am enclosing another copy of our previous letter and your reply along with this one. Please take the time to read our previous letter and consider an article in your publication. This will help to save the lives and quality of life of many AARP members.
I also hope you will go to our web site at www.valleyfeversurvivor.com and inform seniors about the web site as well. Our site was created to inform and educate people about cocci with the most up to date information. All our information is based on peer reviewed medical journals and other sources of equally high repute. The CDC has not updated its information in the Division of Bacterial and Mycotic Diseases significantly since 1995 and other medical websites also have misinformation or outdated information on their sites.
Seniors deserve the right to know about what they can contract if they go to the desert Southwest -- especially if they do so for the supposed health benefits of its dry desert air. Approximately 200,000 people each year are estimated to be infected with Valley Fever in America’s most endemic areas. The epidemic may be even worse, as there has been no research into how many travelers have contracted this disease, it is frequently misdiagnosed inside and outside its endemic areas, and few states require reporting of this disease even if its victims are diagnosed correctly. It is imperative to warn people so that they can make their own decisions about the chances they are willing to take with their health. How many more seniors must die with misdiagnoses of the flu and pneumonia before seniors are warned about this incurable, debilitating, and sometimes deadly disease?
Since your organization works to help seniors on health matters, our organization hopes you will consider informing the senior population about Valley Fever. We also hope the AARP will join with us as we work to create legislative changes to protect our nation from this serious but ignored epidemic.
Thank you for your time. I look forward to hearing back from you.
Valley Fever Survivor® also CC'ed AARP President James G. Parkel, AARP Executive Director and CEO William Novelli, and our own web site in this letter. We hope they will pay closer attention to Valley Fever and what it can mean to seniors. Again, the AARP's telephone numbers are 202-434-2277, 800-424-3410, and 877-434-7598. These and other leaders of the AARP can be reached at the AARP's address:
AARP National Headquarters
If you decide to write or call, simply ask President James Parkel or Executive Director and CEO William Novelli to inform seniors about Valley Fever using the most updated information available, such as the information at www.valleyfeversurvivor.com. Thank you.
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