TBD Working Group meets in DC, Jan. 28-29; submit request to give comments
Dec. 16, 2019
The next meeting of the federal Tick-Borne Disease Working Group will be held January 28-29, in Washington DC. The tentative schedule lists a 9 a.m. start time on each day.
The meeting will be held at the Hyatt Place Washington DC/US Capitol, 33 New York Avenue NE, Washington, DC 20002.
Members of the public can attend in person (limited to space available) or via webcast.
The Working Group will hear presentations from its various subcommittees and discuss developing its 2020 Report to Congress.
Members of the public can give verbal comments to the Working Group, either by attending in person or via telephone. Requests to provide verbal comments must be emailed by January 17.
Written comments must be emailed by January 17.
From TBDWG’s web page:
The 11th meeting of the Tick-borne Disease Working Group will be held on January 28 and 29, 2020, from 9:00 a.m. to 4:30 p.m. ET on both days (times are still tentative).
For this meeting, the Working Group will 1) hear presentations from eight subcommittees on their findings and potential actions for the TBDWG to consider; 2) hear updates from the Public Comment and Inventory Subcommittees; and 3) further discuss plans for developing the 2020 report to the HHS Secretary and Congress on federal tick-borne activities and research.
The meeting will be held at the Hyatt Place Washington DC/US Capitol, 33 New York Avenue NE, Washington, DC 20002.
In-person attendance at the meeting is limited to space available. Therefore, preregistration for public members is advisable and can be accomplished by registering here.
The public will have an opportunity to present their views to the Working Group during the meeting’s public comment session or by submitting their views in writing.
Verbal comments (in-person):
Requests to provide verbal public comment must be submitted via email by midnight Tuesday, January 17, 2020, ET to tickbornedisease@hhs.gov. In the Subject line please enter: Verbal Public Comment – January 28-29 Meeting. In addition, please indicate if you will be providing verbal comment in person or by phone. If by phone, you will be provided a call-in number and and time to call.
A total of 30 minutes has been set aside for verbal comments on both days. Each person will be limited to 3 minutes in order to accommodate as many speakers as possible. If more requests are received than can be accommodated, speakers will be randomly selected.
Your remarks will be heard over a live webcast and will become part of the archived recording and meeting summary that will be posted on this website.
Written comments (posted on this webpage and accessible to the public):
Written public comments must be submitted via email by midnight Tuesday, January 17, 2020, ET to tickbornedisease@hhs.gov. In the Subject line please enter: Written Public Comment – January 28-29 Meeting.
When you submit your written comment, please include a statement letting us know how you would like to be identified with your comment. You may choose to use your name or to be anonymous. You may also list your city and/or state. If you are providing comments on behalf of an organization, please include the name of the organization. We cannot post your comment until you let us know how you would like to be identified.
Comments should either be provided in the body of your email, or in an attachment in Word format and equivalent to no more than 4 pages in Calibri or Times New Roman, 11 point font. Text that exceeds the 4 pages will be deleted.
We do not post graphics, images, text boxes, or tables. If included with your comment, we will not be able to retain them.
Collins, Smith’s bill to combat Lyme and other tick-borne diseases ready to be signed into law
Thu, 12/19/2019 – 4:00pm
Washington, D.C.— U.S. Senators Susan Collins (R-ME) and Tina Smith (D-MN) announced that legislation they authored to improve research, prevention, diagnostics, and treatment for tick-borne diseases passed the Senate today, Dec. 19, as part of the appropriations package. The legislation now heads to the President’s desk to be signed into law.
The Kay Hagan Tick Act unites the effort to confront the alarming public health threat posed by Lyme disease and other tick-borne diseases, which have risen exponentially from approximately 30,000 cases in 2003 to an estimated 450,000 last year. Senators Collins and Smith renamed the bill in honor of former Senator Kay Hagan, who passed away on October 28th, 2019, due to complications from the tick-borne disease known as the Powassan virus.
In Maine alone, there were approximately 1,400 new cases of Lyme disease in 2018, a sharp increase from the 752 cases in 2010. Far too many Americans with Lyme disease experience a complex diagnostic odyssey that takes months or even years, while suffering severe and debilitating symptoms. In addition to the physical and emotional toll that Lyme disease takes, it is also expensive. Medical costs of Lyme disease are estimated at $1.3 billion per year. When accounting for indirect medical costs, including loss of work, the annual costs balloon to $75 billion per year.
“Congress’ passage of the Tick Act is a major victory for the hundreds of thousands of Americans who contract Lyme and other tick-borne illnesses each year. I am grateful for the countless advocates who shared their struggles with these diseases and conveyed the urgent need for this comprehensive, bipartisan bill,” said Senator Collins. “With a national effort the Tick Act would establish, we can slow the spread of these devastating tick-borne illnesses and protect our health.”
“I was misdiagnosed by 23 doctors and specialists to the tune of $250,000 before getting an official diagnosis and proper treatment,” said Paula Jackson Jones, president and co-founder of Midcoast Lyme Disease Support & Education. “Enacting the Tick Act that Senator Collins introduced will provide a lifeline not only to patients but to medical providers. With funding available for research and education, we can get medical providers on the same page not only with improved diagnostic tools but better, more effective treatment options for their patients. With the Tick Act, and Senator Collins’ support in Washington, we can stem the growing threat of tick-borne disease.”
“Lyme is a frustrating and debilitating disease, but it’s a problem we can solve,” said Bonnie Crater, co-founder and board member at Center for Lyme Action. “What is needed is dedicated and sustained effort by the federal government to address this growing public health threat. Senators Collins and Smith’s legislation, the Kay Hagan Tick Act is a wonderful first step and is supported by more than 150 Lyme foundations and associations around the United States.”
“Lyme disease and other tick-borne pathogens continue to have significant impacts on public health in Maine and throughout much of the United States. The advancement of The Kay Hagan Tick Act signals a commitment from Congress to tackle the threats associated with ticks and to dedicate resources to managing tick-borne diseases on a national scale. This coordinated approach, focusing on research and education, will be critical in reducing the severe health and financial burdens associated with tick-borne diseases,” said James F. Dill, PhD, Pest Management Specialist and Coordinator, Diagnostic and Research Lab at the University of Maine Cooperative Extension.
“All of us at Global Lyme Alliance extend our heartfelt thanks to Senators Susan Collins and Tina Smith for their dedication to changing the outcome for suffering patients. It has been a long-haul for many of them, especially the kids who were forced to grow up with this poorly diagnosed and treated medical illness. Patients need real solutions, which the Kay Hagan Tick Act will bring!” said Scott Santarella, CEO, Global Lyme Alliance.
“My life was forever changed at age 6 when I was bitten by a tick the summer after first grade,” said 15-year-old Olivia Goodreau, founder of the LivLyme Foundation and TickTracker. “Children are especially vulnerable to tick borne illnesses, but everyone is at risk. I am so grateful to Senator Susan Collins, her staff, the amazing Lyme advocates, and all those who’ve fought for passage of the Kay Hagan Tick Act. It will save lives by raising awareness and supporting early detection, diagnosis and treatment.”
“I was diagnosed with Lyme Disease the summer of 1986 when I was 14-years-old. Since then, my life has never been the same. I developed Bell’s palsy that paralyzed half my face, a heart murmur, and many other symptoms. To this day, I continue to fight this disease,” said Heather Hearst, Founder of Maine-based Project Lyme and Advisory Board Member of the Bay Area Lyme Foundation. “Over the years, I have watched Lyme grow from something that was rare and unknown to a threat that has affected thousands of Mainers, many of whom now suffer from chronic health issues. With the Kay Hagan Tick Act, we can finally put an end to the suffering and slow the spread of tick-borne diseases. I am so grateful to Senator Collins, Senator Smith, and the bipartisan coalition that worked together to make this a national priority”
Using a three-pronged approach, the Tick Act would:
1. Require the Department of Health and Human Services (HHS) to develop a National Strategy. This would help expand research, improve testing and treatment, and coordinate common efforts across federal agencies including with DOD, USDA, EPA, the VA, and the Departments of Interior and Homeland Security
2. Reauthorize Regional Centers of Excellence in Vector-Borne Disease for five years at $10 million per year. Funding for these centers, which was allotted in 2017, expires in 2021. These Centers have led the scientific response against tick-borne diseases, which now make up 75 percent of vector-borne diseases in the U.S. There are five centers located at universities in New York, California, Florida, Texas, and Wisconsin.
3. Authorize CDC Grants at $20 million per year that would be awarded to State Health Departments to improve data collection and analysis, support early detection and diagnosis, improve treatment, and raise awareness. These awards would help states build a public health infrastructure for Lyme and other tick and vector-borne diseases and amplify their initiatives through public-private partnerships.
In September, Senator Collins, the Chairman of the Aging Committee, convened a field hearing at the University of Maine Cooperative Extension Diagnostic and Research Laboratory Tick Lab in Orono, where experts and witnesses discussed the critical need to pass the Tick Act.
In 2016, Congress took a critical step forward with the enactment of the 21st Century Cures Act, which created a federal Tick-Borne Diseases Working Group. This Working Group released its first report in November 2018, which created several recommendations for next steps. With the findings of this report in mind, this legislation puts key recommendations into practice.
The Tick Act is supported by more than 155 organizations, including the Center for Lyme Action, the Entomological Society of America, National Association of Vector-Borne Disease Control Officials, the National Association of County and City Health Officials, Midcoast Lyme Disease Support & Education Organization in Maine, the Northeast Regional Center for Excellence in Vector Borne Diseases, the LivLyme Foundation, the Global Lyme Alliance, and The Avril Lavigne Foundation.
Senators Collins and Smith’s Tick Act was cosponsored by 32 Senators including Senators Shelley Moore Capito (R-WV), Richard Blumenthal (D-CT), Cindy Hyde-Smith (R- MS), Christopher Murphy (D-CT), John Boozman (R-AR), Margaret Hassan (D-NH), Angus King (I-ME), Mike Braun (R-IN), Bernie Sanders (I-VT), Cory Gardner (R-CO), Diane Feinstein (D-CA), Thom Tillis (R- NC), Elizabeth Warren (D-MA), Richard Burr (R-NC), Chuck Schumer (D-NY), Johnny Isakson (R-GA), Patty Murray (D-WA), Kirsten Gillibrand (D-NY), Tammy Baldwin (D-WI), Jeanne Shaheen (D-NH), Bob Menendez (D-NJ), Josh Hawley (R-MO), Tom Cotton (R-AR), Debbie Stabenow (D-MI), Bill Cassidy (R-LA), Bob Casey (D-PA), Michael Bennet (D-CO), Gary Peters (D-MI), and Chris Van Hollen (D-MD).
Watch this groundbreaking conversation with the IRREGULATORS embedded above. This may be the most significant development since our 5G Crisis Summit, to redirect 5G in the United States. After you watch, please consider a contribution to the IRREGULATORS’ grassroots funding campaign. -Josh del Sol
Bruce Kushnick and W. Scott McCollough, Esq are good ‘ol boys who have seen it all. Now they’re coming back to take a stand for freedom.
They’re also leading experts in the telecom industry who have mapped a pathway to restore the Internet to the human-friendly, benevolent ideals from which it started. As part of this redirection, they’re not afraid to call out the corruption of those who have hijacked it.
Bruce and Scott lead the IRREGULATORS, a group of telecom industry experts and insiders who are taking the FCC to federal court in January 2020, armed with evidence — of an estimated $1 Trillion scandal — and strategy that could very well pave the way to a great restructuring of telecom and dissolution of the 5G agenda.
A Powerful Case: In Summary
Bruce Kushnick is a career telecom analyst who helped invent things like call display and the first 3-digit services. Bruce has also been creating music and playing the piano for 63 years, including live performances at Carnegie Recital Hall. He’s entertaining, iconoclastic, barely sleeps and regularly meditates in his Brooklyn apartment.
On the front lines for decades, Bruce has compiled an epic, 581-page tome called “The Book of Broken Promises: $400 Billion Scandal and Free the Net,” which he is now generously offering for free. (Download this powerful eBook FREE via the sidebar on right, or at irregulators.org.)
After the interview, Bruce conveyed that many of their team of 11 experts have 30+ years of experience in the telecom industry. He sees their group in the mould of “The Seven Samurai”: highly-trained experts who have come together to join one last battle, quite possibly to save the Internet — and our freedom — in the United States.
Scott McCollough is a career telecom legal expert, and former Assistant Texas Attorney General and Contract Consumer Advocate. Reminding me of “Red” from That 70s Show, Scott is a lovable Texan hardass with a big heart underneath. He also happens to know the legal side of telecom and utilities better than virtually anyone else in the nation.
In the highlights compiled in the first 3 minutes of the interview, Scott outlined some key points in this scandal involving misappropriated funds which he estimates now totals a shocking $1 Trillion over the last 16 years:
“We had a bait and switch. We paid for a bunch of fiber to the home, and now we’re getting 5G instead.”
“We started this accounting thing not because we wanted to kill 5G, but because it was the right thing to do, once we figured out how badly local and intra-state wireline ratepayers were getting screwed.”
In the interview, Bruce Kushnick reveals how they have obtained financial documents from Verizon NY — which has previously been quietly designated as New York’s official telecom utility — that clearly show several billion dollars per year in misappropriation and theft.
Scott estimates the amount of funds that wireless giants are stealing from wireline ratepayers to be $60 Billion per year, and sees this as a cash cow that has illegally funded 5G deployments.
“[The IRREGULATORS’ suit] is a knife in the heart of the underlying economics that currently drive 5G.
“If we are successful… 5G cannot sustain itself on an economic basis if it has to pay its own way.”
Two Recent Wins In Court
We’re told that courts have been stripped of their ability to administer justice. However, as evidence for realistic optimism, Scott cited two recent wins against the FCC in the D.C. Circuit Court:
“I’m confident we’ll get a fair hearing from the court. The D.C. Circuit has demonstrated an absolute willingness to bring the [Federal Communications] Commission to heel, when it’s appropriate to do so. And it has done so twice in just the last 6 months.
In correspondence following the interview, Scott summarized these two wins:
“This was the D.C. Circuit’s reversal and vacatur of the FCC’s decision to completely excuse small cell deployments from environmental and historic-preservation review. The court held FCC did not adequately address possible harms of deregulation and benefits of environmental and historic-preservation review. As a result, small cell deployments must go through the NEPA and NHPA ‘review’ process to determine if further study or analysis is required before site approval.“
“This was the D.C. Circuit’s disposition of the FCC’s 2018 decision to reverse the prior majority’s decision to impose “net neutrality” on broadband Internet access by applying “Title II” common carrier regulation. The court generally affirmed the FCC’s decision for interstate purposes, but vacated the FCC’s effort to expressly and in advance preempt “any state or local requirements that are inconsistent with [FCC’s] deregulatory approach.” 940 F.3d 1, 74-86.”
“Both of these decisions limited FCC’s ability to completely preempt any state or local regulation or action over Internet and wireless service and effectively gave some power back to states or local authorities.
“Our case is the third leg of the stool. It would also allow state commissions to decide whether to end the current massive wireline-wireless subsidies going to CMRS [Commercial Mobile Radio Service] in general and small cell in particular.”
Local Governments’ Strategy To Win
Throughout the interview, Bruce illustrates a plan for state and local governments to take back their networks, by:
identifying how much they’ve already spent on fiber broadband and/or been the victims of misappropriated funds;
realizing that each state actually has a state telecom utility which can empower them to take back their networks… but that this has been kept in secret;
invoking legal strategies, which may include police powers, to claim ownership of the often-unused fiber and/or infrastructure being carried on their utility poles (Scott expands upon this topic in the interview); and
going after the misappropriated funds.
Bruce then shares about the years of groundwork they’ve laid which now lead to the culmination of their IRREGULATORS suit:
“It’s funny because 5G has woken people up. Scott and I have been doing this a very long time. Sometimes we’d have conversations with one person showing up, saying, ‘Well that’s an exciting idea!’ And now, you’ve got all these people going, ‘I don’t want that outside my house!’
“I want to win. The one thing most people don’t understand is what it takes to win….. What are the companies doing towards us? And what do we have to do to defend ourselves?
“Can we actually restructure things? This case is the beginning of that restructuring, I think.”
Scott sums up a key opportunity area: how we can educate, inspire and team with our local officials to win the battle.
“Getting folks in the local communities to start exhorting their state and local officials to educate themselves about what it is they can do! There are many things they can still do.
“All these officials hear, though, is news coming down from the top, and from the feds, and from industry, [saying], ‘There is nothing you can do. Your hands are tied. We have tied your hands.’
“Well your hands are not tied. I mean, there may be a piece of string around one of your fingers. Yes, you have a finger that is tied — but you’ve still got nine other fingers!”
“They [local officials] may not be able to stop the tower… but they can stop the fiber that goes to the tower.”
In creating the campaign as we come together with community and elected officials, Scott identifies the need and responsibility that we the people have, to go beyond “just being against 5G” and to include the solution:
“We’ve got to give them an alternative. Fiber to the home on an open, interoperable Net Neutrality network. Preferably one that’s community owned.”
Note from Josh del Sol:
I believe the IRREGULATORS vs. FCC initiative is great opportunity for positive change. But in order for this case to happen and be successful, they need our support.
On behalf of the 5G Crisis Summit initiative and community, please take a moment to internally check in, and consider a financial contribution to their campaign. Then, please go to irregulators.org and give according to your means. 100% of the proceeds will go to their team.
If we blow them away with our support (which we can do with your help!), they will allocate any extra funding for future legal and strategic initiatives. As one idea of a shared next step, toward the end of the video interview we discuss an in-person community & leader conference, at which a meta strategy for organized implementation will be built out.
Tasha Rayburn became ill after giving birth to her first child. After months of doctors not knowing the cause, she received a proper diagnosis of Lyme disease in June. Courtesy of Ryan Bennett
Tasha Rayburn gave birth nearly a year ago and was embracing life as a new mother when her health started to deteriorate fast – and to make matters worse, no one knew why.
About three weeks after having her first child, Ashaya, the then-25-year-old from Durango started having chest pains and palpitations. She went to the emergency room, thinking it was a heart attack, but MRI and CAT scans came back negative.
To help
Tasha Rayburn and Ryan Bennett have created a GoFundMe page to help cover costs associated with Rayburn’s recovery from Lyme disease. The GoFundMe page can be viewed by visiting GoFundMe.com and searching for “Tasha Rayburn.” A fundraiser will also take place from 6 to 10 p.m. Wednesday at The New Sheridan Hotel in Telluride.
“They sent me home with more medicine thinking it was postpartum depression,” she said.
But her condition only worsened.
Before she got sick, Rayburn was an active member of the Durango community. She worked as an intensive-care unit nurse at Mercy Regional Medical Center and San Juan Regional Medical Center in Farmington, and also served as a sexual assault nurse examiner.
Like many in Durango, she took to the mountains and deserts whenever she could. And, more than anything, she looked forward to being a new mom. Over the ensuing weeks, however, her symptoms ravaged her body and mind.
Before getting ill earlier this year, Tasha Rayburn was an active, healthy woman in her 20s. After giving birth and becoming ill with Lyme disease , however, that all changed. Courtesy of Ryan Bennett
Previously healthy and active, she now suffered from bouts of anxiety and couldn’t sleep. She said she was in a “brain fog” and was unable to form thoughts or complete sentences. Eventually, she became bedridden and partially paralyzed, and she went to live with her mother in Pagosa Springs.
“I felt as if I had no purpose,” she said. “I was forced to quit my job as a nurse and couldn’t take care of myself, let alone care for my child or truly be a mother.”
And it only got worse: By May, she was experiencing 30 to 40 different ailments – heart pain, headaches, blurry vision, shortness of breath, difficulty swallowing.
Rayburn said she went to Mercy’s emergency room four times and Pagosa Springs Medical Center’s ER twice. She saw multiple specialists, including cardiologists, neurologists, gastroenterologists – all of whom couldn’t find an explanation.
“Eventually, they had written it off as something she was making up in her head,” said Ryan Bennett, Rayburn’s boyfriend.
On top of not knowing what was making her ill, having people not believe her made things that much harder.
“These past few months have literally been a war of all wars,” Rayburn said. “It’s not inaccurate to state that I’ve literally been fighting for my life every second of every day and night.”
In June, however, there came some relief. A friend recommended Rayburn see the naturopathic medical practice of Jennifer Letellier at Be Well Family Medicine in Durango. Letellier quickly recognized Rayburn’s symptoms as those of Lyme disease, which was later confirmed through proper testing.
Letellier did not return calls seeking comment.
Lyme disease is a bacterial infection transmitted by the bite of a tick not thought to be located in Colorado.
“I had even went to an infectious disease specialist at Mercy and brought up the possibility of Lyme,” Rayburn said. “But they said, ‘No, it doesn’t exist in Colorado and there’s no way you have it.’”
But the relief of knowing the cause of her sickness was short-lived. The regimen for treating Lyme disease can be brutal, and Rayburn’s health again worsened.
“I already felt like I was dying, and then, I literally just felt like I was on death’s doorstep,” she said. “When you start killing off Lyme bacteria, they release endotoxins into bloodstream, so typically you will get worse before you get better.”
Tasha Rayburn with her child, Ashaya, and her boyfriend, Ryan Bennett. Rayburn said her Lyme disease was so severe she did not recognize her family at times. Courtesy of Ryan Bennett
But Rayburn’s late diagnosis made her case more severe. Bacteria had invaded her brain and spinal fluid, explaining the seizures, paralysis, memory loss and even Bell’s palsy. At times, she couldn’t remember who she was, or who her family was.
Bennett said Rayburn’s mother quickly realized her daughter needed care outside the area, and she found a facility that specializes in Lyme disease at the Sponaugle Wellness Institute in Florida. Rayburn has been receiving full-time treatment from the center since Aug. 5.
“The doctors there – they’ve seen so many of these cases before, but they were definitely surprised my symptoms had progressed so quickly, to such a severe point,” Rayburn said.
Specialists at the facility say Lyme disease could have laid dormant in Rayburn for years, but her body was able to fight it off. When she gave birth, however, it’s likely the disease was able to take hold. And, as an added twist, there was mold at her mother’s house in Pagosa Springs, further weakening her immune system.
It’s anyone’s guess when or where she was bitten, Rayburn said.
Health officials in Colorado maintain Lyme disease does not exist in the state.
A spokeswoman at San Juan Basin Public Health said there have been three cases of the disease in La Plata County in the past 10 years, but that number is likely low because public health case counts are not the same as a clinical diagnoses.
But every so often, patients with Lyme disease say it’s more commonplace in Colorado than previously thought. Since it’s not on doctors’ radar, it’s hurting the chances of detecting the sickness in its early stages.
“People just don’t really understand what Lyme disease is,” Shellist told CBS4. “I spent five to six years before (being diagnosed) really sick … going to multiple-type practitioners and no one being able to tell me what’s going on with me.”
Rayburn’s treatment consists of a lot of IV infusions, antibiotics and other substances to help fight toxins. Rayburn said she feels like she’s made a 50% to 60% recovery, but there’s still a long way to go – about another two months of treatment.
And costs are creating another major obstacle for the family. Rayburn estimates about $250,000 has been spent since January, and it’s going to take another $100,000 to $150,000 to fully recover. In the U.S., health insurance covers only 28 days of antibiotic treatment.
“People all over the country are going bankrupt treating this disease,” Rayburn said.
Approaching the one-year mark since giving birth to her first child, and then getting sick, Rayburn said she’s keeping positive, fighting to get healthy again so she can care for her child.
“I was just so grief-stricken, and still am, because I feel like I missed some of the most precious moments of my daughter’s life,” she said.
But there is some silver lining. Rayburn said she hopes her own experience will help educate other people who are sick and may have Lyme disease.
“Since getting ill, there was only an abyss of darkness in my mind as my body was being ravaged,” she said. “I want others who may be suffering to know that they, too, can overcome this with appropriate treatment and resources; and knowing what the problem is, is the first step.”
Notice how many symptoms this poor woman has. The infamous quote by Dr. Jemsek says it all:
“You either have 20 diseases or you have Lyme disease.”
A person should become suspect when symptoms are everywhere within the body and you continue to worsen despite any real help from mainstream medicine.
Doctors who treat this properly are hunted down by state medical boards for treating outside the antiquated and unscientific CDC guidelines of essentially 21 days of doxycycline: https://www.dailykos.com/stories/2012/01/29/1059800/-Wisconsin-Lyme-doctor-gets-reprieve My own doctor had to spend over 50K to protect his practice from this sort of witch hunt.
In partnership with you, we are moving the Lyme needle forward
By Phyllis Mervine
Thirty years ago, when I started this organization, I never dreamed we would still be fighting the same battles three decades later. Accurate tests, physician education, and patient access to proper medical care are still at the forefront of what LymeDisease.org works for every day.
True power comes from having informed patients involved at all levels of decision making. This includes legislation, healthcare policy, and even science. As the largest communications hub in Lyme disease, LymeDisease.org keeps patients informed and provides them with the tools they need to advocate for science-based policy change. There is strength in numbers, and we believe that with your support, we can change lives.
2019 a watershed year
2019 has been a watershed year. Many patients, advocacy groups, and government representatives have worked together to improve the lives of patients around the world. We thank everyone who supported the many initiatives LymeDisease.org put forth in the past year. We are stronger because of you.
The MyLymeData patient registry has enrolled over 12,000 patients. It’s one of the largest patient-driven registries in the nation and the largest study of persistent Lyme ever conducted. We collaborate with academic researchers from the University of Washington and UCLA. (The National Science Foundation has awarded our UCLA partners a grant to pursue their research with data from the registry using artificial intelligence.) We also collaborate with the National Disease Research Interchange and with the Lyme Disease Biobank on a tissue specimen biorepository.
Last year, we published our first peer-reviewed study using registry data. It showed the wide variation in individual patient treatment response. This is why patients need medical care tailored to their personal situation—not “one size fits all” treatment. It’s our third peer-reviewed publication using patient-generated data. We have also just released the MyLymeData 2019 Chart Book, highlighting results from Phase 1 of the study. You can download it on our website.
We are the most trusted source of news in the Lyme disease community. Patients rely on us to provide timely, accurate news and commentary through our website, blogs, and newsletters. Our journal, the Lyme Times is now in its 30th year. It can be read online or downloaded as a pdf. Our symptom checker has been used over 2.35 million times. Tens of thousands of people have used our physician directory to locate Lyme-literate practitioners.
Holding the IDSA accountable
We bring the community together to hold the Infectious Diseases Society of America accountable. This year, the IDSA proposed new Lyme guidelines, which will make it even harder for patients to be appropriately diagnosed and treated. When the draft document was released for comment, LymeDisease.org joined forces with the International Lyme and Associated Diseases Society to craft a response.
The result was over 50 pages of comments detailing scientific flaws and the ways these guidelines will further harm patients. 87 patient and physician groups from 12 countries have signed on to the Ad Hoc Patient and Physician Coalition’s rejection of the proposed guidelines. Endorsing organizations include the national Lyme Disease Association and the Bay Area Lyme Disease Foundation.
Working for Lyme disease policy change
We engage healthcare policymakers to create policy change. The federal Tick-Borne Disease Working Group has the power to spur public policy change through its recommendations to Congress. The Working Group’s subcommittees are a vital part of its process. Three representatives of Lyme disease.org served on subcommittees in 2017-18, and two are serving this year.
However, the Working Group itself has only one patient representative and no physicians from ILADS. We brought the community together to sound the alarm about the severe lack of balance on this year’s panel. 57 patient groups signed on to LymeDisease.org’s extensive letter to the Department of Health and Human Services (HHS), which oversees the working group. Furthermore, at each public meeting of the Working Group, we have submitted written comments and delivered verbal remarks to protect the patient interest.
Amplifying the Lyme community’s voice
Together, we amplify the community’s concerns. When HHS selected Dr. Eugene Shapiro to sit on the Working Group, we launched a petition calling for his removal. He has severe financial conflicts of interest and notorious disrespect for Lyme patients. Over 37,000 people have signed our Change.org petition to remove Shapiro from the Working Group.
Thank you for standing with us over the years. Whether you have Lyme disease or love someone who does, you understand our passion to improve the lives of patients. We won’t stop until every patient is promptly diagnosed and receives appropriate care.
We can only do this with your help. Please continue to stand with us. Be a part of a community that cares. Help us continue our advocacy, education and research efforts on behalf of Lyme patients everywhere who deserve to regain their health.
Your gifts make all this work possible. Please donate today. Thank you very much.
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