Our first CDC letter
We sent this letter to CDC Director Dr. Julie Gerberding on
August 4, 2003. Our next CDC letter was mailed on March 23rd, 2004 and
is linked from our letters page. 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:
Dear Director Gerberding,
I acquired coccidioidomycosis, an incurable disease commonly known as Valley Fever or cocci in Arizona in 2001. There was no major dust storm at that time and I got this incurable infection simply by breathing. For four months of my life I was bedridden, unable to breathe, and suffering with unbearable pain. Even two years later I am continuing to attempt a recovery. If I had received any warning that this disease existed, let alone what it could do, I would NEVER have visited Arizona.
Since even asymptomatic infections can activate later, no case of coccidioidal infection can be ignored. I along with millions of other Americans have had our health risks multiplied and treatment options decreased because we were not informed about the risks. If someone infected with cocci has another devastating illness, coccidioidomycosis can reactivate to strike its victims down in their moment of greatest need. One does not need to get another illness, however, in order for cocci to reactivate. The southwest’s naturally occurring biohazard is a ticking time bomb waiting to go off. I and many others contracted this disease without our knowledge or consent because the state, local and federal agencies have failed to warn the vast majority of the populace. You have to first be aware of the existence of this disease in order to find any information about it.
Unfortunately the CDC’s DBMD information about this disease is outdated, inaccurate, or simply wrong. For example, the estimate of 100,000 annual cocci infections has been around since long before the population explosion in the southwest. The Valley Fever Center for Excellence’s present 3% annual infection rate in the most endemic areas bringing the actual estimate to 200,000 people (based on the 2000 census numbers) in the most endemic areas of Arizona, California, New Mexico, and Texas. The disease also can be found in Utah, Nevada, and in other countries. It has been said in peer reviewed journals that coccidioidomycosis is as common to the southwest as cacti. As the CDC’s Morbidity and Mortality Weekly Reports indicate, it is currently an epidemic.
The Valley Fever Center for Excellence in Arizona and other experts and peer-reviewed journals have informed us of cases where cocci was contracted simply by breathing the air while changing planes in the Phoenix airport, by receiving a potted plant by mail that had C. immitis in the soil, by a mechanic fixing a car with C. immitis on it after it was driven more than a thousand miles in an endemic area, and more.
Valley Fever’s varied symptoms lead to frequent misdiagnoses. Its worst cases can be fatal. 60% of cases are estimated to be initially asymptomatic and as few as 1.3% of all cocci cases are estimated to be diagnosed (Barnato, et al. Cost-effectiveness of a potential vaccine for Coccidioides immitis. EID 2001 Sep-Oct;7(5)). These estimates suggest an alarming ignorance or disregard by the medical community and that reactivations and chronic cases have a devastating and unchecked toll on American health.
This disease is almost universally unknown and misunderstood by laymen and doctors alike. Not only does ignorance lead to countless misdiagnoses, but thousands of annual infections that would never happen if people were educated about the disease. I looked for important information about Arizona before my visit and found nothing about Valley Fever. People have to know it exists before they can find any information about it. Who would ever think that an incurable, debilitating and potentially deadly fungal parasite exists in a state that entices people to come there for their health, schooling, recreation, and retirement? People need information to decide for themselves whether they are willing to take the risk of visiting an area endemic to coccidioidomycosis.
C. immitis, the fungus that causes Valley Fever, is so dangerous that it is regulated 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 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, 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, even these measures are not completely effective, and some military deployments actually may cause a higher infection rate. This was the case when 45% of a training SEAL team was infected in 2002.
Although it is terrible enough that soldiers and civilians alike in America are subjected to this pathogen without their knowledge or consent, our historical research uncovered even more shocking information. During World War II, captured Nazis were held in Arizona and shortly became infected with Valley Fever. Although Americans are subjected to this disease without warning, Nazi Germany invoked the Geneva Convention and America moved the prisoners to another location. Nazi prisoners were treated with higher regard than Americans are.
Contrast the risk of court martial and consideration of the Geneva Convention for the benefit of Nazi prisoners with the way our own people are treated, as Dr. Egeberg noted from The Proceedings of the 4th International Conference on Coccidioididomycosis in 1984:
“...suppose the ground was just right [for the distribution of C. immitis] and that billions of upon billions of arthrospores, arthroconidia, were ripe and ready to take to the air in the Southern San Joaquin Valley and suppose a similar, bizarre, strong 3-day windstorm occurred, but instead of heading north [as in a previous epidemic], blew south over the Tehachapis into the nearby Los Angeles basin. If that should happen I daresay in 3 or 4 weeks they would be calling it a national emergency and would probably be sending in the National Guard. Think of the kind of epidemic. It would not be a slow increase of cases to a climax or plateau. After the incubation period the whole impact would strike within a 1- or 2-week period [for the initial symptoms of most cocci cases]. After that the new cases would drop dramatically.”
“Eight million people. Say arthrospores found homes in the respiratory passages of a quarter of them. That would be two million people infected. Four or five hundred thousand would have definite symptoms. A hundred thousand or more would have severe symptoms of primary disease, and of them twenty thousand or more would disseminate. And one could guess that at least several thousand would die. It would take a corps of statisticians and several computers to check these figures and put that horrendous picture into financial columns. Except for harm to buildings, it would approach a major earthquake as a catastrophe. So the socioeconomic cost would be very great, and I shall let you make your own estimate. The range of the economic loss from coccidioidomycosis in California could go from $15 million a year to $1 billion if a series of unusual circumstances occurred.” And this only accounts for the population and expense estimates in 1984.
Dr. Egeberg adds, “I find it difficult to put a monetary value on the worry, sadness, and tragedy of the human costs. Obviously they would be great.”
The West Nile Virus only has a 20% active infection rate, yet warnings are blasted on the TV news over and over again. SARS resulted in several travel advisories, even though its international death toll is far lower than that of coccidioidomycosis over the years. In fact, coccidioidomycosis has a 40% active infection rate and among the elderly it has a 26.8% death rate. To remedy the silence about cocci, the CDC must issue warnings, travel alerts, and travel advisories to the media so that all visitors who consider visiting or living in the endemic areas can make their own choice as to whether or not they are willing to risk contracting cocci. It is neither a rare nor benign disease.
We have coined the term SARFI for cocci. It stands for Serious Acute Respiratory Fungal Infection. Perhaps if this terminology were used for Valley Fever the disease would get the attention it deserves. How many cases of pneumonia, meningitis, arthralgias, myalgias, and flu symptoms must be misdiagnosed before the CDC takes all the appropriate actions?
The CDC must also update its information to include the serious information
from peer-reviewed journals that take into account the strong likelihood
of misdiagnoses, infections among travelers, and reactivation. To
note the thousands of reported infections without showing the estimates
of undiagnosed infections reveals only a tiny piece of the iceberg.
Since the VFCE is underfunded and they have been without a webmaster for
nearly a year, even their web site does not present all the up-to-date
information that we have researched and placed on our web site www.valleyfeversurvivor.com.
The information there (and much more) will also be included in our upcoming
book about Valley Fever.
1) The CDC must provide financial support to the current vaccine
project, for a cure to coccidioidomycosis, and to the Valley Fever Center
People must be made aware of coccidioidomycosis. Not to give people fair warning about this disease is an unforgivable moral and ethical failure. The job of the CDC is to protect people through truthful up-to-date information and warnings. To date, the CDC has failed millions of people when it comes to coccidioidomycosis, especially in Arizona and California. The silence on this epidemic can no longer be accepted.
If you have any questions about the information on our web site or of any way our organization can be of assistance to you, we would be happy to help. The CDC can save people from the morbidity and mortality of this disease just by enacting a few changes and giving travel warnings about this disease to the news media. Every day that passes without these warnings causes someone to experience severe health issues or death.
I look forward to your response.
CC: HHS Secretary Tommy Thompson
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