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Our March 23rd, 2004 CDC letter


We sent this letter to CDC Director Dr. Julie Gerberding on March 23rd, 2004. Obviously the CDC had not implemented the recommendations in our August 4, 2003 letter (which can be read from our letters page). We thought an updated letter was in order.

As with all our letters, if you agree with our recommendations and would like to help us, please send your own letter. By working together we can all make a difference. Director Gerberding can receive your letter at the following address:

Julie Gerberding, MD, MPH
Director
Centers for Disease Control and Prevention
1600 Clifton Road, NE
Atlanta, Georgia 30333

Re:  The necessity of action against coccidioidomycosis: media warnings, sufficient funding and testing

 

Dear Director Gerberding:

 

On August 4, 2003 I sent you a letter about Valley Fever.  Your September 30, 2003 reply completely ignored our requests to warn the public about this disease.  Strangely, your letter indicates that the CDC provides information to traveling foreigners through the Health Information for International Travel Yellow Book while giving no domestic warnings geared to interstate American travel.  This benefits foreigners while allowing Americans to be infected, debilitated, and killed by Valley Fever.  Such disregard for American lives recalls the treatment of Nazi prisoners in World War II; Germany invoked the Geneva Convention to have their soldiers moved because of Valley Fever infections while American civilians were and continue to be encouraged to vacation and live in the same areas.

 

C. immitis is a systemic fungal infection that causes Valley Fever (coccidioidomycosis), commonly called cocci.  It has been listed in the Antiterrorism and Effective Death Penalty Act of 1996 and the Public Health Security and Bioterrorism Preparedness and Response Act of 2002 because its effects can be as ghastly as many other weapons of biological warfare and terrorism.

 

Why should the Arizona and California Health Departments and the CDC refuse to warn tourists and their own citizens about this disease?  Why should the Arizona and California State Legislatures and senators refuse to confront this issue, endangering peoples’ health?  Why does the CDC ignore our requests to publicize warnings about the seriousness, morbidity and mortality of Valley Fever infections?  Why does the CDC continue to place outdated and misleading information about coccidioidomycosis on its web site?  Why doesn’t the CDC benefit Americans with a list of all diseases that can be contracted in the USA as it does for other countries?

 

I believe I know those answers.  Many people that have contracted it feel the same way I do.  All these agencies, including yours, appear less concerned about public health and more concerned with the possible economic impact this disease would have if people knew the truth about it.  Real estate and tourism seem to matter more than human life.

 

It is unethical, immoral and criminal that the endemic states, especially Arizona and California, treat the public with such blatant disregard for their health and lives. The endemic states entice people to come to their state for health reasons, recreation, school, retirement, etc. without warning the public about the dangers of breathing the air containing a naturally occurring biohazard.  People can’t learn about VF unless they’ve heard of it first.  A C. immitis spore is approximately the same size as an Anthrax spore and easily can come through window screens, ventilation systems of cars, and into homes.  When over 300,000 spores can fit on the head of a pin and an infection can be caused by the inhalation of a single spore, just imagine what can happen!

 

People have the right to know how easily contracted this disease is and that it can affect anyone regardless of age, health, sex or ethnic background.  It is very common for people to contract it, have a disseminated case, and have their lives ruined or ended. 

 

Our soon to be released book will expose all that has been known about this “local secret.”  The public at large will finally know about it so that they can determine for themselves whether or not they will take a health risk by going into these endemic regions.

 

There have been too many myths perpetrated about this disease.  Contrary to popular belief, Valley Fever is not benign.  It can and does reactivate on a regular basis and no one can tell if it is a new infection or a reactivation in those living in an endemic region.  It can debilitate and kill people who were extremely healthy prior to their inhalation of C. immitis spores.  In fact, it appears that most of the people in our statistical analysis were healthy prior to contracting cocci and not immunocompromised in any way.  Of course, people already immunocompromised prior to infection can obviously have worse infections and higher death rates regardless of any disease they contract.  The focus on immunocompromised patients in medical literature on Valley Fever frequently misdirects doctors with the dangerous misconception that immunocompetent patients are not at risk.

 

Anyone with cocci, even if inactive or unaware that they have it in their body, can have it activate with the stress of any other illness.  Once activated it can wreak havoc to destroy their quality of life and possibly kill them.  Many people who have contracted cocci had it activate 10 years or more later and do just that.  Once inhaled, this parasite is with its host for life.

 

Even though cocci does not have cancer’s status in the medical community, it acts much like a cancer.  It has been known for decades as the most virulent systemic fungal parasite* and known to replicate in the body with alarming speed.  It consumes and destroys any part of the body, instead of a cancer from one of your own cells growing wild. 

*Fromtling RA, Shadomy HJ.  An overview of macrophage-fungal interactions.  Mycopathologia 1986 Feb;93(2):77-93.

 

Since 65% of America’s Valley Fever cases occur in Arizona, I am shocked that the State of Arizona Health Department had the audacity to label cocci on their reportable infectious disease page for 2003 and 2004 as “of other interest in Arizona.”  Only sexually transmitted diseases and hepatitis are of higher incidence in Arizona.  Those diseases are diagnosed easily while cocci is not.  Valley Fever should be highly suspect in these places, but from our research, doctors routinely fail to consider it.  As many as 98% of Valley Fever infections are estimated to be undiagnosed (Barnato AE, Sanders GD, Owens DK.  Cost-effectiveness of a potential vaccine for Coccidioides immitis.  Emerg Infect Dis. 2001 Sep-Oct;7(5):797-806).

 

Besides debilitation and pain, cocci can also cause rheumatoid arthritis, meningitis, osteomyelitis, pericarditis, myalgias, synovitis, and problems in any organ of the body.  How many misdiagnosed flu and pneumonia cases have occurred across our nation leading to deaths and misery for the victims of cocci?  How many people with these health issues suffer because of cocci and are unaware that this parasite has caused it all?

 

Based on the 3% annual infection rate estimates and the recent population census, the Valley Fever epidemic affects approximately 200,000 people a year, not the outdated 100,000 estimate included in many reports.  Valley Fever case reporting in Arizona alone has increased approximately 1,676% from 1990 to 2002.  It is hard to believe that a major health warning has not been publicized across our airways.  This is not an emerging infectious disease, but rather one that has already emerged with terrible consequences, costs and misery for those that have contracted it and for their families.  Our book will dispel the multitude of misconceptions that have endangered public health.  People lose their jobs, insurance, spouses, and everyday living can become a difficult chore with this disease.

 

The West Nile Virus affects only 20% of the people that are infected, but Valley Fever affects 40% of the people infected right away.  It can also reactivate later, even in the 60% that initially had no symptoms.  The spores that cause this disease are considered weapons of biological warfare, yet are unleashed daily on Americans just because they need to breathe air to live.  All it takes is the wrong gulp of air.  Some professionals feel Valley Fever has even been kept as a “local secret” so commercial interests and the public wouldn’t panic or avoid the endemic areas (Valley Fever Center for Excellence.  VFCE Annual Report 2002-2003).  I believe people’s health should always take a higher priority.  The CDC should accept this view as well.

 

Students, business people, retirees and animals have had to endure the horrors of this disease for too long.  How many more young women have to be told they should not get pregnant because they have cocci and need to be on life long antifungal treatment?  How many more infants and children must suffer a life long misery with this disease?  Aren’t the lives of children of Arizona and other endemic regions worth anything to the CDC?  And what of the visitors?  It is time for the apathy to stop in your agency.  The CDC must inform the public about the seriousness of this disease.

 

Due to national television exposure, everyone heard about the one mad cow in Washington State, everyone was told about SARS, but the truth about this disease has never received major publicity.  Valley Fever is easily contracted on any given day, anywhere in the endemic regions.  People can get it from packages from these areas and can take home souvenirs with spores on them.  I don’t know how much more I can say to implore you to issue national warnings as you had for West Nile and SARS.  We had coined the term SARFI for Severe Acute Respiratory Fungal Infection.  This describes Valley Fever in terms that the media already understands.

 

Since the disease disseminates through the bloodstream, it is imperative that donated blood be evaluated for transmission of cocci as well.  If you recall, it was first believed that the West Nile Virus could not be transmitted via a blood transfusion or organs.  That has been proven wrong.  Donor screening might also fail, as some individuals with cocci are not aware of their sickness even while it is disseminating**.  These donors might unknowingly endanger the blood supply.  Since the possibilities of coccidioidal infections have never been examined in blood screening, I strongly recommend that this be done.

**Pappagianis D.  The phenomenon of locus minoris resistentiae in coccidioidomycosis.  In: Einstein HE, Catanzaro A, eds.  Coccidioidomycosis.  Proceedings of the 4th International Conference on Coccidioidomycosis.  Washington, DC.  National Foundation for Infectious Diseases; 1985:  p319-329.

 

Your agency has the power to stop millions of future VF cases from occurring, and needs to secure full funding for research on both the current vaccine and the drug Nikkomycin Z, which is believed to be a cure.  It has been estimated that $40 million in testing will be required for each, but since the vaccine is merely expected to stop disseminated VF and is not expected to prevent infection in the lung, it is still possible for vaccinated individuals to die or suffer greatly from this disease.  This makes the additional $40 million for a Nikkomycin Z cure essential.  Considering the annual VF costs of $120 million to our country (Cocci Study Group Meeting. March 2001), the $80 million expense is truly a bargain.

 

With a cure, people in our country and abroad would benefit.  Peoples’ lives would no longer be ruined and the endemic states would benefit because tourism, jobs and the influx of people could increase.  Medical costs in our country and insurance rates would dramatically decrease if there were a cure, a vaccine, and accurate early diagnoses.  The medical community must educate doctors and the public about this disease.

 

It is imperative that the CDC accomplishes the following:

    1) Issue national warnings about Valley Fever to the public.

    2) Alter the CDC web site and informational materials to reflect the up-to date information

         known about this disease.

    3) Alter the CDC web site and informational materials to list America’s endemic diseases,

         rather than leaving that information in the hands of the states themselves especially since

         they refuse to do it.

    4) Secure complete funding necessary for the vaccine project and Nikkomycin Z.

    5) Screen the blood supply for coccidioidal infection.

 

I look forward to your prompt reply and a clear summary of the specific actions you intend to take.  We hope we can work together with the CDC in order to help eliminate this disease.

 

Thank you,

 

Sharon Filip

David Filip

www.valleyfeversurvivor.com



 
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