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Valley Fever Survivor provides a great deal of important information about coccidioidomycosis and the devastation it has caused in Arizona, California, the Desert Southwest, and all around the world. Please click the items in this section to learn more! Visit our home page http://www.valleyfeversurvivor.com to read updates at the front page and view our introductory video
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Our Political Action Request

We originally sent this letter on 4/02/03 to Arizona's Governor Janet Napolitano and the other Arizona officials included in our cc. A similar letter has also been sent to officials in other endemic states. The information in this letter reflects our research at that time and thus does not include information we have discovered since, like the more inclusive estimate of 10 million infected Americans, the information about Nazis and Valley Fever in World War II, and more. The letter still outlines the need for strong regulation.

Dear Ms. Napolitano,

Coccidioides immitis is a fungus endemic to the deserts of Arizona and is known to cause coccidioidomycosis, a disease better known as cocci or Valley Fever. In consideration of this disease’s threat to national security, C. immitis is federally 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. Valley Fever is an incurable disease that can have debilitating consequences, lay dormant and reactivate years later, and even cause death. We know you are aware of the consequences of this disease. Therefore, we have proposed some regulatory actions that are essential.

Federal regulations make it clear that any work expected to involve C. immitis should be handled with Biosafety Level 3 regulations (one step below agents like ebola). Construction workers, however, do not follow these regulations even when working in the most endemic areas. By disturbing the soil, they are spreading this fungal pathogen with no regard to their own or public safety. This is because most of them are unaware of the dangers of Valley Fever. In addition, selling land with C. immitis in the soil is essentially a sale of this select agent, and buyers are usually ignorant of the consequences of their purchase.

Even after searching through a great deal of travel information and important facts to know about Arizona, I found no warning or mention of this naturally occurring biohazard. The State of Arizona knew about cocci but chose not to inform visitors about the dangers of this disease, thereby gambling with their health. I and countless others lost that gamble. Many victims of Valley Fever have died or been debilitated.

Increased construction in Arizona stirs up the ground to make cocci spores airborne. Massive migration has brought people into the areas where this fungus can be inhaled. U.C. Davis estimates that 4.5 million people may already be infected with Valley Fever, and there is presently a 3% annual infection rate in endemic areas. In Arizona alone, over 160,000 new infections will occur in 2003.

Tragically, Valley Fever’s existence has been known for nearly a century but the disease is virtually unknown to the public at large and even to many doctors. How many more people and animals have to be debilitated or die from this disease before Arizona stands up and takes responsibility? Arizona not only allows but encourages people to come to and live in the state without educating the public of the possible risks of this naturally occurring biohazard. There are railroad crossing signs, stop signs at intersections, warning labels on cigarettes, but so far the state has not warned visitors or potential incoming students, new employees, retirees, etc. about this dangerous incurable disease. Whether these people remain healthy depends on the state’s veracity and concern. This means that the State of Arizona has a moral obligation to warn all residents, visitors, tourists, etc. about the potentially debilitating consequences they face as a result of contracting Valley Fever.

There are no signs to say, “beware of C. immitis growing in your backyard, the desert or just free floating in the wind.” We at valleyfeversurvivor.com hope Arizona will take our requests seriously. By failing to give its citizens and visitors the option for informed consent about the dangers they face by breathing the biohazard in Arizona’s air, we believe the state has displayed reckless disregard and endangerment for the health of relocating families and pets, students, athletes, visitors like myself, prospective retirees and Arizona’s own citizens.

We have attached a list of facts about this disease as well as a list of regulatory proposals that will address the problem. We hope you will take this letter and our request for immediate regulatory action to heart. President Bush has recently proposed Project Bioshield to help companies work on vaccines to combat weapons of bioterrorism. Perhaps this will help as C. immitis certainly falls under that heading. We would like to see state and federal funding go to the vaccine project and to further research for safer and better medicines. Hopefully this will lead to a cure someday as well.

Your response and the actions you take will be included in our upcoming book on Valley Fever. We look forward to your response.

Sincerely,

Sharon Filip

Enclosures:
Facts Pages (2 pages)
Regulatory Actions Required (2 pages)

cc: U.S. Senator John McCain
U.S. Senator Jon Kyl
State Senator Carolyn Allen
State Senator Linda Binder
State Representative Deb Gullet
VFCE Executive Director Robert Brauer
www.valleyfeversurvivor.com

FACTS PAGES

Below is a short list of important facts about Valley Fever. Although this is not all-inclusive, we hope it will outline the need for immediate regulatory actions in Arizona.

1) Coccidioides immitis is a fungus that can be used as an agent of bioterrorism.

2) Once a person contracts coccidioidomycosis (cocci for short and commonly known as Valley Fever) he or she is infected for life.

3) Presently there is no cure for Valley Fever.

4) Victims usually contract cocci simply by breathing and cannot see the anthrax-sized fungal spores in the air. C. immitis spores are approximately the same size as anthrax spores and can be inhaled at home through the ventilation system, an open window, etc.

5) It is speculated that 60% of coccidioidal infections are asymptomatic, but the disease can activate later to destroy the health of its victims, debilitate, and kill them.

6) From our extensive research, no long-term research studies to keep track of asymptomatic cocci infections that become symptomatic could be found.

7) It appears to be a fallacy that most people who suffer severe Valley Fever infections were already immune compromised. None of our questionnaire respondents had an immune deficiency before suffering their Valley Fever infections. Only one questionnaire was submitted on behalf of a deceased HIV-positive patient who died of Valley Fever.

8) Anyone at any age that is perfectly healthy can contract Valley Fever and have a serious disseminated case or even die from the disease.

9) Since C. immitis tends to cause dramatically more problems in African-Americans and Filipinos than in Caucasians, it has been considered by the military for use as a race-specific pathogen for biological warfare.

10) Senior citizens (60 years and older) are twice as likely to report a Valley Fever infection than those 30-39 years of age. The CDC also indicates that Valley Fever fatalities are more likely to occur among seniors.

11) We have received hundreds of surveys at www.valleyfeversurvivor.com. Scarcely any of them had significant health problems prior to contracting Valley Fever. None appeared to be aware of the lethal or debilitating consequences prior to their infection.

12) As a result of their Valley Fever infections, some people have lost their jobs, health insurance, property, and homes. Some were rendered destitute and unable to pay for dental procedures, car insurance, electricity, phone charges or even their medication.

13) Despite the outstanding job and efforts of the Valley Fever Center for Excellence (VFCE), our surveys to date indicate only a miniscule six percent of respondents who have lived in endemic areas for seven years or longer have a proper knowledge of Valley Fever.

14) Dr. Stuart Cohen at UC Davis estimates that 4,500,000 people in America are presently infected with Valley Fever.

15) This epidemic number above could be low, as Medical Mycology states, “Between 1930 and 1960...it was established that histoplasmosis and coccidioidomycosis infected over 100 million people in the United States alone.”

16) Sixty-five percent of all Valley Fever cases occur in Arizona.

17) Arizona does not require veterinarians to educate their clients about the threat Valley Fever poses to them and their pets. Arizona also allows animals from non-endemic areas to suffer needlessly by bringing them into local zoos where they can inhale cocci spores easily.

18) Employees relocated into the state are routinely unaware of Valley Fever, what it can do to them, their children, their pets, or what they can do to mitigate the risk of infection.

19) Arizona real estate companies and their agents are not required to tell any prospective customers about the existence of C. immitis or the dangers of Valley Fever.

20) People are often uninformed about the dangers of gardening in their yards, hiking, bike riding or camping in the desert. These activities can cause C. immitis spores to become airborne.

21) The Chambers of Commerce and Tourist Bureaus do not send information about the state’s naturally occurring biohazard in tourism literature. Rather they entice people to come, go camping in the desert, retire there, etc. without informing them of the dangers.

22) The VFCE estimates that there are 100,000 new Valley Fever infections annually. This is based on population data from 1996 and the 3% annual likelihood of infection in endemic areas.

23) When interpolating the 3% annual rate for the 2000 population census, the problem doubles to nearly 200,000 annual Valley Fever infections. Even the 200,000 estimate may be conservative, as the Southwest’s population continues to increase rapidly in endemic areas.

24) There has been a 31% increase in the number of cocci cases reported to the Valley Fever Center for Excellence from 2001-2002.

25) A NIOSH-approved N95 respirator is recommended for use in areas where cocci is expected, but an N100 respirator may provide more complete protection. These may mitigate the chance of cocci infections during dust storms, digging, and construction.

26) C. immitis has been found in cotton exported from endemic areas. Nationally and internationally, workers coming into contact with it have been infected and at least one has died.

27) Products purchased from roadside stands and brought out of the state have contained C. immitis spores. Tourists need to be made aware of this danger.

28) Like the West Nile Virus, Valley Fever has been transferred from organ donors to recipients. Increased testing is essential.

29) Despite the fact that disseminated coccidioidal infections spread through the bloodstream, the American Association of Blood Banks does not check the blood supply for cocci.

30) Cocci has hampered our military for decades, with the first extensive studies tracking thousands of cases during World War II.

31) Cocci continues to adversely affect our homeland security even in the present, as evidenced by a recent Navy SEAL training exercise that had 45% of its team fall ill.

32) C. immitis spores have been known to travel through the air as far as 500 miles outside their original endemic areas.

33) More often than not, Valley Fever cases are initially misdiagnosed, leading to severe complications.

34) One of four college students with Valley Fever in Arizona are sick for over four months. There were 36,847 students in the University of Arizona in 2002.

35) “...too often Valley Fever is still perceived as simply an annoyance by the general public, health care professionals and local government officials. Even the majority of local residents in the endemic area perceive Valley Fever as a relatively benign disease. Combining this misperception with a lack of knowledge about the disease among new residents, tourists, new businesses, athletes and students moving into the endemic area, creates a vast population base which must endure Valley Fever illnesses (often without an accurate diagnosis) while being unprepared to deal with any possible complications arising from a Coccidioides sp. infection.”
-- Robert J. Brauer, Jr., Executive Director VFCE, Valley Fever Center for Excellence Annual Report 2001-2002

REGULATORY ACTIONS REQUIRED

In light of the information on our Facts Page and the fact that I and countless others were not given any warning or knowledge of this disease before visiting the state, valleyfeversurvivor.com proposes the following for immediate implementation through legislative or executive actions:

1) Fund research for a vaccine and a cure for Valley Fever.

2) Provide the Valley Fever Center for Excellence (VFCE) with the necessary funding to hire more personnel and to accomplish their goals for education and research.

3) Seek funding under President Bush’s proposed Project Bioshield initiative.

4) Test the state’s blood supply for cocci.

5) Test all organ transplants for cocci.

6) Require that coccidioidomycosis be noted as a patient’s cause of death if a coccidioidal illness was at fault and not simply “fungal pneumonia,” “organ failure,” “meningitis,” etc.

7) Prepare a document of up-to-date information about Valley Fever (including items such as 1-5, 8-10, 14-16 and 23-35 listed in our Facts Pages) as a state-approved uniform written material to provide information about cocci’s dangers. All species of Coccidiodes including C. immitis must be regulated and included in warnings of Valley Fever. For the rest of this document, this comprehensive written information about Valley Fever will be referred to as VF Information.

8) Require all tourist bureaus and chambers of commerce within the state to send the VF Information to anyone seeking information about the state as well as providing the same VF Information on the web sites of all state and government agencies. This must be available to view at the front desks and given upon check-in at all tourism and travel related businesses.

9) Require that the VF Information be sent to the prospective visitors when travel and lodging reservations are made, with confirmation notices, and with any other literature requests.

10) Require a mass mailing of the VF Information to the households of all Arizona’s citizens.

11) Require all health care services to inform patients who are Filipino, African-American, senior citizens, pregnant women, diabetics, cancer patients, and any sick patient (immune compromised or not) about the increased dangers they face if they contract Valley Fever or if the infection reactivates.

12) Require all businesses and organizations that put on conventions, sporting events, attractions, etc. in the state to mail the VF Information to its participants, vendors, and attendees.

13) Require building contractors to supply the VF Information to their employees and all prospective clients.

14) Require real estate agents and their companies to give the VF Information to all prospective clients.

15) Require all owners of land privately selling their property or home to provide all prospective purchasers with the VF Information.

16) Require all educational establishments in the state of Arizona to provide all their prospective and current students with the VF Information.

17) Require all businesses within the State of Arizona to give the VF Information to all out-of-state prospective employees before they enter the state.

18) Require all providers of vehicle and property rentals to give the VF Information to their customers.

19) Require veterinarians to give the VF Information to all their clients, whether their animals are presently infected or not.

20) Require that all vehicles transporting soil from this state or any other endemic region must cover their load so any Coccidiodes sp. spores that may be present can not be released during transport.

21) Require that all land where construction is planned be assayed for Coccidiodes sp. to the depth the ground will be excavated for construction. If Coccidiodes sp. is found, the community surrounding that land must have the right to decide whether to allow construction on that land to continue.

22) Require that any land development in Arizona adhere to Biosafety Level 3 regulations whether or not Coccidiodes sp. is found, as the fungus is frequently difficult to locate and the public health risk is tremendous. Use of the appropriate safety equipment (respirators, dust control measures, etc) must be enforced.

We look forward to your reply and cooperation.



 
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