This past February, the Republican-led House of Representatives proposed a budget that would have cut millions of dollars from science agencies that fund Lyme disease research as well as research for other infectious diseases. These cuts would have not only lead to funding levels well below those proposed by Obama when he tabled his budget request more than a year ago, but also well below the 2010 levels they have been operating under since October.
At the National Institutes of Health (NIH), a cut of just over 1% amounts to a loss of $323 million, including $50 million that Congress has specified will come out of funding for buildings and facilities on the agency's campus in Bethesda, Maryland.
At the same time, the Centers for Disease Control and Prevention (CDC), in Atlanta, Georgia will have its budget cut this year by 11.5%, or $742 million.
These two agencies, NIH and CDC, are largely responsible for nationally funded surveillance and research on Lyme disease in the United States today. They are at risk for the more serious proposed cuts to be carried out in 2012, which is likely to have a major impact on Lyme disease research since there is very little privately funded research on tickborne diseases.
Lyme Disease Surveillance, Diagnosis, and Funding
The following chart depicts the steady increase of Lyme disease cases which are reported to the CDC by state health departments and physicians across the country.
It should be noted that back in 2002, the CDC stated that in highly endemic areas, for every case you see depicted on this chart, there could be at least six to twelve times more cases which are not reported.
If one were to extrapolate that each case reported came from an endemic area, that would mean anywhere from 180,000 to nearly 480,000 actual cases of Lyme disease were contracted in 2009, and the number is growing.
Given there are variations in which tickborne diseases are most likely to be contracted nationwide, the average number of unreported cases may be more than twelve times higher in highly endemic regions and less than six times higher in regions which are not as suitable for tick habitat expansion.
But this misses a point.
Even at the baseline of roughly 40,000 reported cases (through testing, both confirmed and considered probable) per year, that is a LOT of cases of Lyme disease.
That's almost up there with how many people get the flu every year - 43,696 cases of Novel A influenza were reported in 2009.
That's right up there with HIV - of which 36,870 diagnosed cases were reported in 2009.
But the actual reported cases are only a slice of the whole - it only documents instances where people have been TESTED for Lyme. Just as with the flu and HIV, what the actual number of people is who contract Lyme disease is not entirely known.
Even the CDC has stated in its own report:
"Between 2008 and 2009 there was a 3.6% increase in confirmed cases and 35.6% increase in probable cases. Much of the increase can be attributed to variability in surveillance practices, although evidence of true emergence exists in certain areas. Because of the burden on endemic states posed by Lyme disease surveillance, some states have modified surveillance protocols to better manage limited resources. States using modified methods, including case estimation, might report decreased case counts."
Also, it is important to note that reporting of nationally notifiable diseases to CDC by the states is voluntary. Reporting is currently mandated (i.e., by state legislation or regulation) only at the state level, so the list of diseases that are considered notifiable varies slightly by state.
There are reasons why getting a grip on the scope of the problem is elusive for patients as well - it's not just an issue of surveillance and affects people individually:
Some tickborne diseases which look like Lyme disease in all respects may not show up in current standard Lyme disease blood tests.
For example, Borrelia lonestari produces a disease very similar to Lyme disease known as Master's Disease - which most Lyme disease patients just lump under "Lyme disease" on support groups because it pretty much causes the same symptoms for people. They get a rash, but test negative on standard Lyme disease blood tests.
Some tickborne diseases which look like Lyme disease in all respects may never have a rash.
In a similar scenario, investigators in southern Spain identified several patients with atypical Lyme borreliosis, who were serologically reactive with Borrelia burgdorferi antigens, but who lacked classical erythema migrans skin lesions and who originated from a region of the country where the recognized tick vector of Lyme borreliosis was distributed sparsely. Indeed, blood cultures subsequently revealed a relapsing fever Borrelia sp., genetically distinct from B. burgdorferi and transmitted by an entirely different tick species. In this case, discovery of a novel disease agent occurred because these patients did not meet the established case definition for Lyme borreliosis (Anda, et al., 1996; Guy, 1996).
If people contract a tickborne illness and no EM rash is seen, and they get a blood test that does not meet the CDC case definition for Lyme disease - they aren't reportable even if history and symptoms match.
This is important for anyone reading along to know: If you or a loved one is bitten by a tick and gets sick with symptoms of Lyme disease, you need to know that Lyme disease is ultimately a clinical diagnosis. In other words, if you or a loved one does not meet criteria for surveillance purposes that does not mean you do not have Lyme disease. See: http://www.cdc.gov/ncidod/dvbi/lyme/ld_humandisease_diagnosis.htm
In a number of cases, a doctor will see that a patient has a rash and just treat the patient for a skin infection - not knowing that it is Lyme disease.
Not all Lyme disease EM rashes look exactly like a bull's eye. They can come in somewhat different shapes, be solid up to the bite mark, and even be somewhat bluish or look like a bruise.  (See: Variations on Lyme disease rashes.)
Not all cases of Lyme disease which are treated are reported.
A person could be sick with all the symptoms except an obvious EM rash and have a history of a tick bite - but still have a negative blood test. This can happen early in infection with a hidden rash - it can also happen due to recent antibiotic treatment for something else.
Some people are misdiagnosed with other conditions in the first place.
Their doctors either think they have a viral infection, chronic fatigue syndrome, fibromyalgia, or some other condition which is not Lyme disease. This diagnosis could lead to another uncounted case as Lyme disease was not suspected and no tests were conducted - maybe no rash was found nor a tick bite recalled. Later blood tests may reveal the disease once it has already moved to the late stage when it is harder to treat effectively.
Knocking On Neuroborreliosis' Door
To add to the troubles of diagnosing garden variety Lyme disease in its acute stage, it is estimated that in the United States and Europe, roughly 12-20% of Lyme disease patients will go on to develop neurological complications of Lyme disease or neuroborreliosis (IOM Report; HPA, 2011).
The actual number of people who develop neuroborreliosis is less certain because of the same factors listed above - and lumbar puncture tests are only somewhat accurate at detecting Lyme disease within the first two weeks of infection, which is much earlier than blood tests detect it.
I've speculated that the reason why so many patients complain of neurological and cognitive symptoms with Lyme disease is that they were misdiagnosed or undertreated for Lyme disease early on, when the infection already affected the central nervous system and brain.
Data on Lyme disease with persisting symptoms would be good to have in this instance -especially if one can look at case histories, symptoms, and serology and determine if roughly 4,000-8,000 people a year (or more, not knowing actual cases) who are projected to get neuroborreliosis are, in fact, those who are most likely to suffer with persisting symptoms.
Early detection and treatment of neuroborreliosis in specific (which requires higher doses of antibiotics and IV treatment for a month is recommended) may prevent the number of people who have developed persisting symptoms and eliminate a lot of suffering, pain, and hardship for thousands of individuals and families.
During the time of the 2010 Institute of Medicine conference on tickborne infection, Dr. Brian Fallon, head of Columbia University's Lyme and Tick-borne Disease Research Center stated:
"The NIH does not fund trials on treating chronic Lyme disease and the IOM are hesitant to push for further studies on antibiotic treatments, because the jury is still out on whether chronic Lyme disease results from an extended inflammatory reaction to the Lyme bacteria Borrelia burgdorferi in the United States after it has been eradicated by a short course of antibiotics."
This - even though as mentioned in a previous diary here - animal studies have found Lyme disease bacteria DNA through PCR and spirochetes in autopsies performed on animals after antibiotic treatment. And those were just a fraction of the studies.
In the most recent Institute of Medicine report on tickborne illnesses ( p.7-15), it stated:
"Turning to the literature pertaining to patients with chronic persistent symptoms, Fallon noted a number of areas need additional research. A European study compared patients with neurologic Lyme disease to those with erythema migrans 3 years later and found that 50 percent of those with neuroborreliosis experienced persistent symptoms versus 16 percent of the EM patients (Vrethem et al., 2002). These results suggest that follow up studies on chronic symptoms, rather than focusing solely on early EM, should focus on the subpopulation of patients who present with neurologic or other disseminated symptoms."
So perhaps my speculation is worth following up on.
But all of this takes money. All of this takes a concerted effort from researchers to look at Lyme disease not just from a position where they are encouraged to improve vaccine development and tests - but encouraged to look at how the infection affects hosts and treatment.
The majority of Lyme disease studies conducted by federal agencies are by the NIH-NIAID.
The NIH-NIAID has funded the greatest amount of tick-borne disease studies - a total of 404 studies comprising 85% of the funding from all agencies and organizations. The CDC has funded 19 tick-borne disease studies from 2006 to 2010, 7% of the funding from all agencies and organizations. NIH-NIAMS has funded 15 tick-borne disease studies all between 2006 and 2009. The remaining agencies USDA-ARS, NSF, NIH-NINDS, US Army Public Health Command, and USDA-NWRS have each funded five or less studies between 2006 and 2010.[6 (B-1)]
The above chart shows that after 2009, funding for all tickborne disease research was combined - so how research funds were allocated for different purposes in 2010 is unclear based on this report which was included in the Institute of Medicine's October 2010 workshop on tickborne diseases.
What is known is how spending for tickborne disease research has been allocated in the recent past, and that requested budgetary increases or even requesting funding at the same rate is threatened by budget cuts.
In 2009, in terms of tickborne infections, Francisella studies received the most funding at $190m (52%) followed by Borrelia studies at $122m (33%). [6 (B-7)]
In 2010, Borrelia research (Lyme disease plus other Borrelia bacterial infections) ate the largest portion of the NIH research pie for the first time in history.
While $122m would take care of all my financial worries (and a good portion of yours!) for my lifetime, when it comes to your research dollar - $122m does not go very far - and really not that far for certain populations and subjects if you slice it a certain way.
In terms of the total tickborne diseases pie:
Microbiological studies received the most amount of funding at $210m (57%) with a total of 304 studies. The next highest study type was Prevention/Education studies, which were allocated $83.8m in funding (23%) for a total of 73 studies. Combination of study types were allocated $47.2m (13%), Treatment studies were allocated $17.1m (5%), Environmental studies were allocated $5.8m (1%), and Surveillance studies were allocated $3.5m (1%).
So looking at this, keep in mind that those treatment studies are aimed at acute cases of all tickborne diseases - and not aimed at studies for treatment of those with Lyme disease who have persisting symptoms. $17m on the face of it is not that much of a budget. This is our national program for study on tickborne infections... and it might run a few high schools for a year.
And in terms of surveillance studies - getting an accurate count of probable and confirmed cases for all tickborne infections in United States - funding surveillance is only 1% of the budget. That's only $3.5m (which is about what it costs for some guy's sweet brownstone in New York City or a fine little Victorian in San Francisco).
While I could never afford that - especially after having my health ruined by Lyme - surely there can be more funding allocated for accurate surveillance, including followup studies to ensure those with chronic symptoms are evaluated for neuroborreliosis? Surely there is more money that could be reallocated for studies to help Lyme disease patients with persisting symptoms?
 Nature News: US budget a taste of battles to come Nature 472, 267-269 (2011)
 CDC: Lyme Disease -2001-2002 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm
 CDC Summary of Notifiable Diseases (MMWR) - 2009 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5853a1.htm
 Lyme Disease Foundation: Variations on Lyme disease rashes. http://www.lyme.org/gallery/rashes.html
 Nature News: Scientists push for Lyme disease trials http://www.nature.com/news/2010/101014/full/news.2010.542.html
 Institute of Medicine. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases.
Dr Pedro Anda PhD, Waldo Sánchez-Yebra PhD, Maria del Mar Vitutia Dvm, Esperanza Pérez Pastrana Bsc, Isabel Rodríguez BA, Nancy S Miller MD, P Bryon Backenson MSc, Jorge L Benach PhD. A new Borrelia species isolated from patients with relapsing fever in Spain. The Lancet. Volume 348, Issue 9021, Pages 162 - 165.
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