Our Health and Human Services Letter

This is our July 30, 2004 letter to Department of Health and Human Services Secretary Tommy Thompson. If you agree with our recommendations and would like to help us, please send your own letter by using information from our letters page. By working together we can all make a difference.

Mr. Tommy G. Thompson
Secretary of Health and Human Services
Room 615-F
200 Independence Ave., SW
Washington, D.C. 20201 

RE:  The coccidioidomycosis epidemic in the Southwest. 

Dear Secretary Thompson: 

Coccidioides immitis is a fungus regulated in the Antiterrorism and Effective Death Penalty Act of 1996 and the Public Health Security and Bioterrorism Preparedness and Response Act of 2002.  I contracted coccidioidomycosis (aka cocci or Valley Fever) during a visit to Arizona in 2001.  This incurable, debilitating and sometimes deadly fungal disease nearly took my life.  Prior to contracting Valley Fever I was an extremely healthy person without any health concerns, but after my infection I have diminished lung capacity due to scarring, nodules, and I have other chronic Valley Fever-related health problems.  

If I had received any warning that this disease existed in Arizona or what it could do if I inhaled it, I would NEVER have gone to there.  As a result, my son and I are writing what we believe will be the most extensively researched book ever written on this subject.  We will do everything in our power to alert the nation about the existence of this naturally occurring biohazard and its effects.  We hope the HHS will do the same. 

Valley Fever was identified as a major national security problem in World War II when thousands of training soldiers were infected and sickened.  To reduce the possibilities of infection on base, soldiers could be court martialed if they went to areas of the base where dust control measures were not in place (Fiese, Coccidioidomycosis 1958, p81).  Unfortunately these rules were not completely effective and not always enforced.  In 2002 in Coalinga, California, 45% of a training SEAL team was infected by Valley Fever. 

The Valley Fever Center for Excellence (VFCE) has suggested in their 2003 Annual Report that the rise of Valley Fever cases in Arizona might have been (or continues to be) caused by biological terrorism.  Any of the endemic areas are ripe for this type of insidious attack. 

There appears to be an alarming ignorance or disregard by the medical community regarding cocci.  Valley Fever's varied symptoms also lead to frequent misdiagnoses.  How many cases of pneumonia and influenza in this country should have Valley Fever counted as the cause of death but do not?  How many people in this country suffer from arthritis, synovitis, pericarditis, osteomyelitis, fatigue, and other ailments caused by undiagnosed Valley Fever?  

How many people across America are planning to take a family vacation to a city (Phoenix, Tucson, Yuma, Bakersfield, Fresno, Porterville, El Paso, etc.) where C. immitis can be easily inhaled?  How many of them would take a chance with their health, their child's health or other family members if they knew of the existence of this biohazard and what might happen if these spores were inhaled?  Who would ever think that an incurable, debilitating and potentially deadly fungal parasite (the most virulent known to man) exists in a state that entices people to come there for their health, schooling, recreation, conventions, retirement and military service?  How many people are aware that C. immitis is considered a race specific weapon of biological warfare since it affects African -Americans and Filipinos with far more severe and lethal infections or that Valley Fever among the elderly has a 26.8% death rate?  Pregnant women and diabetics also face increased risks. 

Peer-reviewed medical journals, the VFCE, and other experts have informed us of cases where cocci was contracted by ordinary people simply by breathing the air while changing planes in the Phoenix airport, by receiving a potted plant by international air mail that had C. immitis in the soil, on a car that had been driven more than a thousand miles from an endemic area only to infect the mechanic who was fixing the vehicle, and more. 

The CDC’s Morbidity and Mortality Weekly Reports finally admitted Valley Fever is an epidemic.  Based on the 2000 census numbers in the most endemic areas of Arizona, California, New Mexico and Texas, the present 3% annual infection rate brings the proper estimate of infections to 200,000 people annually.  This is twice the VFCE’s current estimate of 100,000 which continues to be based on the 1996 census.  Unfortunately many otherwise-reputable sources are reporting information that is similarly outdated or misleading. 

To date, the CDC has disregarded our plea to warn the public.  This creates a paradox because people must be aware of the existence of C. immitis before they can find out how to protect their loved ones from it.  In a letter to the CDC we suggested renaming Valley Fever to SARFI for “Severe Acute Respiratory Fungal Infection” as a way to communicate the seriousness of this disease to the public.  

So far this year the numbers of reported Valley Fever diagnoses have increased dramatically.  In Arizona for the month of June 2004, there were 309 reported Valley Fever infections while for the same month in 2003 there were only 150 reported infections.  This was a 106% increase in reported cases.  From January-June 2004 Arizona had 1652 reported infections while for the same period in 2003 there were only 1113.  This was a 48.4% increase.  California reported 109 Valley Fever infections for the first four weeks of January 2004 while there were only 40 reported infections for the same period of 2003.  This represented a 173% increase. 

These numbers from Arizona alone exceeded the combined national cases of SARS and the under 200 cases of West Nile Virus in 2004.  Only 20% of those bitten by a mosquito carrying the West Nile Virus are known to contract this disease while 40% of those who inhale C. immitis are known to contract Valley Fever.  The 60% of Valley Fever cases that are initially asymptomatic are, unfortunately, not safe because the disease can activate many years after the initial infection.  Information about SARS and West Nile has been blasted across our airways so that people can be alerted to the dangers of these diseases and how they can be contracted.  Also, with West Nile people can at least wear mosquito repellant to be safer; With Valley Fever, it is impossible to ask people to stop breathing.  We ask that Valley Fever be given the same media publicity as these other diseases since all it takes for an infection is inhaling the wrong breath of air. 

We interviewed the leading medical professionals involved in the study of this disease.  They estimated that it would take $40 million to conclude research on the current vaccine and $40 million to bring Nikkomycin Z, a potential cure, through its own testing phases.  $80 million for both is obviously a lot of money, but since Valley Fever already costs Americans an estimated $120 million annually in medical costs (Cocci Study Group 2001), this expense would rapidly pay for itself. 

Some medical professionals believe the governments of the C. immitis endemic states continue to keep this disease as a "local secret" because the politicians fear that people would not want to visit or live there if the public was aware of their naturally occurring biohazard (VFCE Annual Report 2003).  The endemic states’ governments’ inaction leads us to the inevitable conclusion that the solution to this problem must come from the federal government. 

The HHS needs to:

1)  Initiate nationwide medical warnings about Valley Fever.  Lives are devastated daily because this "local secret" continues to be kept a secret from the American people. 
2)  Provide $80 million dollars in funding for research for the vaccine and a cure.
3)  Educate medical professionals with up-to-date accurate information about Valley Fever.
4)  Implement nationwide testing of the blood supply and all donated organs for C. immitis.

An information packet is enclosed.  We believe our extensive research and knowledge of this disease can be helpful to you and we look forward to working with your agency to implement our requests.

I look forward to hearing from you on these urgent matters.

Sincerely,

 
Sharon Filip. Founder
David Filip
www.valleyfeversurvivor.com

Enclosures: 

Dr. Egeberg’s Nightmare Scenario, Medical and Personal Perspectives on Valley Fever, Valley Fever Victims’ Stories, DHS letter, and our letter to the CDC from March 23, 2004.

In addition, please read our Facts, FAQs, Symptoms, Map, and Misconceptions pages, and our 2003 letter to the Governor of Arizona located at our web site www.valleyfeversurvivor.com.