H.R. 4333 – Lyme Disease Research Stamp Act
For Immediate Release Contact: John Lange
Thursday, November 9, 2017 202-225-5614 | John.Lange@mail.house.gov
Faso Introduces Bipartisan Legislation to Raise Awareness and Research Funding to Combat Lyme Disease
Washington, D.C. – Congressman John Faso (R-Kinderhook) today announced the introduction of H.R. 4333, the bipartisan “Lyme Disease Research Stamp Act” alongside Congressman Collin Peterson (D-MN). The legislation would establish a United States Postal Service semipostal stamp to raise money for Lyme disease and related tick-borne illness research – at no cost to taxpayers.
Congressman Faso said, “Lyme Disease is a scourge that Upstate families know all too well. This debilitating disease stays with its victims for years, and results in immense emotional and financial hardship. Lyme disease and related tick-borne illnesses are growing rapidly, and it is critically important that as a society we do what we can to educate the public on this epidemic so our communities and families can take the necessary steps to comprehensively address this issue.” Faso continued, “The Lyme Disease Research Stamp Act is important because it will help raise awareness and money to support comprehensive research efforts to combat and prevent these devastating diseases.”
Congressman Collin Peterson (MN-7) added, “I am proud to help lead the effort to support increasing funding for Lyme disease and tick-borne illness research and raise public awareness,” Peterson said.
The Lyme Disease Research Stamp Act would establish a United States Postal Service semipostal stamp to raise money for Lyme disease and related tick-borne illness research. The stamp would operate as USPS first-class postage, which postal patrons may voluntarily purchase at a price slightly higher than regular postage to support this cause. Revenue raised would directly benefit critical Lyme disease and related tick-borne illness research at the National Institute of Allergy and Infectious Diseases (NIAID). This market-driven initiative comes at no cost to the taxpayers.
Other leaders in the fight against Lyme Disease contributed their thoughts on the Faso legislation:
“Lyme disease is the number one spreading vector borne epidemic in the U.S, and mimics other chronic diseases accounting for an increased burden of those suffering with chronic illness. It has now been reported in all 50 states, affecting more than 330,000 people a year with debilitating symptoms. Lack of accurate diagnostic testing oftentimes results in diagnoses of Chronic Fatigue Syndrome, Fibromyalgia, autoimmune diseases, unexplained pain syndromes, as well as dementia with neuropsychiatric illness. These various manifestations contribute to disability and rising health care costs. We desperately need to improve diagnostic and treatment options for Lyme and associated illnesses, as research funding to date has been inadequate, so the “Lyme Disease Research Stamp Act” is an excellent way to help raise awareness and provide critical funding for this emerging epidemic”
Dr. Richard Horowitz
NY Times Best-selling author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” and national best-selling author of “How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease”
“The Lyme Disease Research Stamp Act introduced by Congressman Faso enables Congress to provide an opportunity to raise much needed funds for Lyme and other tick-borne diseases research, yet it does not add to the financial burden of the federal government. It enables individuals who want to support Lyme research–so that patients can get proper diagnosis and treatment–to do so without a strain on their budgets and without an unnecessary expenditure of time. Buy a Lyme stamp, help save a life! It’s a win-win situation.”
Pat Smith
President, Lyme Disease Association, Inc.
“Great thanks to Congressman Faso for finding this unique manner to assist with NIH Funding for Lyme disease research. There’s about 80 times as much tick-borne disease as mosquito-borne disease in the USA. Yet funding for Lyme and tick-borne diseases is not commensurate with the illnesses. This legislation will help NIH to address the ticks and the diseases they transmit as is done with mosquitoes.”
Jill Auerbach
Hudson Valley Lyme Disease Association, Chairperson
“We are gratified that Congressman Faso has sought to arrange for a direct way of funding future research for tick borne disease. This epidemic has taken a back seat to mosquito diseases and this legislation will provide a necessary amount of awareness as well as some additional funding. We are grateful to Congressman Faso for his efforts in this area.”
Ira Auerbach
Hudson Valley Lyme Disease Association
“Despite the severity of the epidemic and a rapid growth in reported cases, NIH funding for Lyme disease research has remained relatively low, averaging just $25 million annually. Additional funding is desperately needed for research to develop accurate tests that work in all stages of the disease and for clinical trials to develop more effective treatments for patients with chronic Lyme disease. The Lyme Disease Research Stamp provides an opportunity to help fill this gap at no expense to taxpayers.”
Bruce Fries
President, Patient Centered Care Advocacy Group
Some of Congressman Faso’s efforts to combat Lyme disease in the 115th Congress:
Sent a bipartisan letter to Acting Secretary of the Department of Health and Human Services, Eric Hargan, to follow up on report language for Fiscal Year 2018 appropriations regarding Lyme disease, to improve the measurement and tracking of the progress of federal efforts to combat the disease.
Member of the House Lyme Disease Caucus.
Voted for millions in Lyme and vector-borne disease research funding, in addition to voting for a $2 billion increase in funding to the National Institutes of Health, which conducts important Lyme research.
Sent a letter to U.S. Department of Health and Human Services Secretary Tom Price urging support for the Tick-borne Disease Working Group established under the 21stCentury Cures Act.
Met with leading medical professionals and Lyme disease prevention advocates to share information about ongoing Lyme research and education programs, as well as how private companies are working to develop vaccines.
Facts about Lyme Disease:
An estimated more than 300,000 new cases of Lyme occur annually.
It is found in half of all U.S. counties and on four continents, and it is growing rapidly.
It is transmitted by tick bites.
Symptoms may begin as flu-like but can affect the nervous system, leading to paralysis, encephalitis, seizures, and death if left untreated.
It has no known cure and is difficult to diagnose.
More than 3,000 confirmed cases in NY in 2015.
14 States, including New York, account for over 96% of reported cases.
To view the Letter to Acting Secretary of the Department of Health and Human Services, Eric Hargan, click here.
To learn more about this legislation, click here: https://faso.house.gov/uploadedfiles/lyme_disease_research_stamp_page.pdf
For the full text of the legislation, click here: https://faso.house.gov/uploadedfiles/draft_-_lyme_disease_research_stamp.pdf
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**Comment**
Sigh……why do Lyme/MSIDS patients, their doctors, and researchers have to sell lemonade to raise money for a disease that’s affecting at least 300,000 per annum and thousands more who are chronically debilitated till they die? https://www.cdc.gov/lyme/stats/humancases.html
Think about this for a minute.
Can you imagine breast cancer or heart disease patients needing to buy expensive stamps so they can have money for research?
I mean, don’t get me wrong, I appreciate the out of the box thinking by Representative Faso; however, patients are already paying exorbitant amounts of money for treatment that insurance will not even cover. Then there’s the patients who have become homeless, those who forego treatment, and families who have to choose who gets treated in their family as they can’t afford to treat everyone. I could go on and on.
According to the CDC, here’s the stats for the leading causes of death in the U.S. with corresponding links showing how LD can cause or exacerbate each of these conditions:
- Heart disease: 633,842 https://www.cdc.gov/lyme/signs_symptoms/lymecarditis.html
- Cancer: 595,930 http://www.townsendletter.com/AugSept2015/cancerlyme0815.html
- Chronic lower respiratory diseases: 155,041 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3565243/ (upper respiratory illness)
- Accidents (unintentional injuries): 146,571 (see note below)
- Stroke (cerebrovascular diseases): 140,323 http://lymediseaseguide.net/long-term-brain-damage-and-stroke-from-lyme-disease
- Alzheimer’s disease: 110,561 https://www.envita.com/lyme-disease/alzheimers-linked-to-lyme-disease-keeping-your-memory-strong
- Diabetes: 79,535 https://deansilvermd.com/lyme-disease-and-its-co-infections-from-a-lyme-literate-m-d/
- Influenza and pneumonia: 57,062 https://www.lymeepidemie.nl/the-co-infections-lyme-disease/?lang=en (pneumonia)
- Nephritis, nephrotic syndrome, and nephrosis: 49,959 http://danielcameronmd.com/doctors-recognize-lyme-disease-in-a-patient-with-kidney-disease/ (kidney disease)
- Intentional self-harm (suicide): 44,193 https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/
And while I couldn’t find a direct article link to Lyme/MSIDS and “accidents,” Lyme/MSIDS patients trip, fall, and have all sorts of accidents due to neuropathy and brain processing issues, it’s just nobody’s keeping score: http://www.mentalhealthandillness.com/tnaold.html
According to the CDC, EVERYONE is at risk for Lyme and more folks are diagnosed with Lyme disease (329,000) each year than breast cancer (232,570), colon cancer (136,830), HIV (50,000), and Hepatitis C (18,000).
Take a peek at dollars spent on research:
HIV $3,005
Breast Cancer $674
Colon Cancer $288
Hepatitis $200
Lyme Disease $21
*Dollars in millions and rounded. Estimated funding in 2014 by National Institutes of Health (NIH). https://globallymealliance.org/about-lyme/, Fed funding: https://report.nih.gov/categorical_spending.aspx
Lyme Disease occurs 6 times more often annually than HIV/AIDS, yet it receives less than 1% of the funding from the National Institutes of Health compared to HIV/AIDS. Likewise, there are 141 times as many cases of Lyme Disease than West Nile virus, yet Lyme Disease receives less than half of the funding for research. http://lymediseasechallenge.org/learn-lyme-disease/
Then there’s the 1.1 billion approved for Zika.
347 symptomatic Zika virus disease cases reported, but 342 cases were in travelers returning from affected areas
2 cases acquired through presumed local mosquito-borne transmission in Florida (N=1) and Texas (N=1)
3 cases acquired through sexual transmission https://www.cdc.gov/zika/reporting/2017-case-counts.html
Mosquito experts have gone on record stating that mosquito transmission cycles for Zika in the U.S. is near ZERO. https://madisonarealymesupportgroup.com/2016/07/17/zika-in-the-land-of-oz/, and https://madisonarealymesupportgroup.com/2016/09/04/cdc-report-on-zika/.
But, what about microcephally?
U.N. numbers show just 142 cases of birth defects linked to Zika outside Brazil. The article admits that the condition was initially over diagnosed. https://madisonarealymesupportgroup.com/2016/10/26/zika-puzzling-scientists/
Call me crazy, but perhaps some reorganization within the CDC/NIH/IDSA needs to happen with proper emphasis on research spending that correlates to incidence of disease…..
Just a silly thought.
