https://undark.org/2018/09/06/lyme-research-funding/

As the Threat of Lyme Disease Rises, Why Hasn’t Research Funding Followed Suit?

The tick-borne illness now costs Americans up to $1.3 billion a year in medical expenses. It’s time for politicians to mount a response.

 

“The best thing about Lyme disease is you usually don’t die,” Franklin says. “The worst thing about it is that you don’t die.”

Franklin is not alone. According to the U.S. Centers for Disease Control and Prevention (CDC), annual cases of Lyme disease and other tick-borne illnesses in the U.S. have skyrocketed to more than 300,000 — up from just 50,000 three decades ago. And those totals are thought to underestimate the true tally of patients who suffer from chronic tick-borne illnesses. A Johns Hopkins study estimates that Americans now spend up to $1.3 billion a year battling Lyme disease alone. Yet, the research that could help us better understand, treat, and prevent the disease remains woefully underfunded. That needs to change.

The recent explosion in Lyme disease cases stems from a perfect storm of climate and environmental change: Global warming has made northern latitudes more hospitable to the tiny blacklegged ticks that transmit the disease, and rapid deforestation and development have left large populations exposed to the wooded areas that harbor the ticks. The CDC reports that the number of tickborne illnesses in the U.S. has doubled from 2004 to 2016, and a new study finds that Lyme disease, once primarily a scourge of the northeast, has now spread to all 50 states. Economist Marcus Davidsson predicts that as many as one million Americans will be infected in 2018. And experts say it will only get worse.  (Please see my comment after article)

The growing medical crisis has exacted not only a physical but a financial toll as well. Policy experts say that, after accounting for lost productivity and hard-to-detect chronic conditions, the real costs of Lyme disease could be many times more than the $1.3 billion estimated in the Johns Hopkins study.

Laurie Johnson, executive director of the Climate Cost Project, and co-founder Sieren Ernst are working to home in on the true societal costs of Lyme disease. The team has been collecting surveys from Lyme disease patients to create a database of the patients’ medical expenses. So far, the results are astounding. Half of the respondents reported more than $30,000 in out-of-pocket expenditures on Lyme disease treatments, with some reporting more than $200,000.

“We believe the data is just the tip of the iceberg,” Ernst says.

What’s more, the rising threat of tick-borne disease has led Americans to take fewer trips outdoors — up to a billion fewer trips annually in the northeastern U.S. alone, according to a Yale study published last year. The authors of that study estimate that the economic burden associated with the lost trips could amount to as much as $5 billion annually.

As the societal costs of Lyme disease soar, funding for Lyme disease research remains in a rut. An unpublished draft report by the U.S. Department of Health and Human Services Tick-Borne Disease Working Group finds that, while the National Institutes of Health and the CDC spend $53,571 and $14,054 respectively for each new case of HIV/AIDS, they spend just $90 and $35 per new case of Lyme disease.

“Federal funding for tick-borne disease today is orders of magnitude lower, compared to other health threats, and it has failed to increase as the problem has grown,” the report states.

Dr. John Aucott, chair of the working group and director of the Johns Hopkins Lyme Disease Research Center, says the federal research community is not doing enough to find an accurate test and a cure for Lyme disease. He adds that the problem is compounded by controversies surrounding the symptoms of chronic Lyme disease, which makes it difficult for patients to get proper medical care.

In late August came a ray of hope from Capitol Hill. Senate Minority Leader Charles Schumer announced that, after five years of stagnant funding, the Senate had authorized a 12 percent increase for the CDC’s research on Lyme disease and other tick-borne illnesses for the 2019 fiscal year. The measure would raise allocations from $10.7 million to $12 million.

Still, patients like Sherrill Franklin say that’s sorely inadequate, and that the measure would do little to address chronic conditions that afflict millions like her. As the planet warms and populations grow, tick-borne illnesses are skyrocketing. It’s time for politicians to mount a serious response to the rising threat.

William “Rocky” Kistner is a multimedia journalist who writes about environmental issues and climate change. He publishes stories at www.TheRockyFiles.com and lives near Washington, D.C.

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**Comment**

Once again, according to independent tick researcher John Scott, the climate has absolutely nothing to do with the spread of ticks and therefore Lyme/MSIDS:  https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/ A recent study shows that warm winters are lethal to I. scapularis (black-legged) ticks. In fact, overwinter survival dropped to 33% when the snow melted. This has been substantiated by other researchers as well. Scott & Scott, 2018, ticks and climate change, JVSM

This is an important distinction for a number of reasons:

  1. Earmarking tick/MSIDS research with the moniker “climate change” will divert precious money to the wrong subject matter when issues like accurate testing, education on how to clinically diagnose, settling the matter of pathogen persistence once and for all, and the need for research studying the cumulative effects of ALL of the pathogens involved on the human body would get a great start in helping patients.  But, there are hundreds of other topics as well.  
  2. Scott goes as far as to state the climate change issue is a “red herring” to divert attention away from the fact nothing has been done to help patients in over 40 years and is actually part of a “nefarious plot.”  https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/
  3. Scott, infected himself, has determined black legged ticks require 14 hours to molt to the next stage, something he dubs “photo period.”  Light has much more of an impact on ticks than climate as ticks are marvelous ecoadaptors and will seek out leaf litter and snow when conditions become harsh.
  4. Scott offers that yearly bidirectional, songbird migration in spring and fall is behind tick expansion and that the climate change model actually reflects migratory flight not warmer futuristic temperatures.
  5. Research on migratory birds and their impacts on tick expansion would be a far better topic to spend money on than more climate data.
  6. We need to know if other insects can transmit this.  To date, researchers smugly point to a 30 year old study and say it can’t, yet patients all over the world have far different experiences:  https://madisonarealymesupportgroup.com/2018/03/01/strides-in-lyme-research-links-to-mosquitos-as-carriers/.  The potential for ALL blood sucking insects to transmit all or some of the pathogens commonly blamed on ticks is very real.  And just because it can’t be seen doesn’t mean it isn’t there.  These are notoriously stealthy pathogens who thrive on hiding and avoiding detection.
  7. We all know that MS, Lupus, Fibro, ALS, dementia, and Alzheimer’s can be undiagnosed Lyme as well as the fact that according to a prominent Wisconsin Lyme doctor, 80% of his PANS/PANDAS patients have Lyme/MSIDS as well.  Research on these topics would again, be far more helpful than the same – o- same-o climate data that’s been collected for years.
  8. Since many couples are infected and they’ve actually found borrelia in semen and vaginal secretions, we need to know if this is a STD:  https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/  We also need the medical community to admit it’s congenital and spread via breast milk https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/ and https://madisonarealymesupportgroup.com/2018/05/24/new-berlin-mom-given-life-altering-lyme-disease-diagnoses-after-pregnancy/  These are practical day to day issues that require answers.  Knowledge is power and we need it!  I literally could go on and on to infinity here but these 7 issues are screaming for research.  Nobody is touching this with a 10 foot pole yet life marches on with the very real probability we are transmitting this is far more ways than the dastardly black legged tick.  We need to know.
We needed to know these answers 40 years ago.