Robert F. Kennedy Jr. and Congressman Chris Smith expose Lyme disease’s systemic neglect, from HHS’s 1986 dismissal of symptoms as psychosomatic to the CDC’s flawed four-week doxycycline claim, blocking proper treatment for 400,000 annual U.S. cases. The Stephen and Alexander Cohen Foundation’s $110M+ research—including the 2021 Lyme Clinical Trials Network—challenges outdated protocols, while patient advocates like Rachel Markey demand better diagnostics. Smith’s 33-year fight, from the stalled 1998 Lyme Disease Initiative to the 21st Century Cures Act, finally forces HHS to act, but lingering questions about weaponized ticks and unaddressed economic burdens remain. Progress is real, but urgency defines the fight for accurate care and justice. [Automatically generated summary]
With Affordable Care Act subsidies set to expire at the end of the month, the House Rules Committee meets Tuesday to consider health care legislation aimed at lowering costs through employer-funded health reimbursement plans and cost-sharing reduction payments.
The committee will also look at two other bills related to gender transition procedures: one barring the use of Medicaid for transition surgeries, and the other making it a felony to perform gender-affirming treatment or prescribe associated medication to anyone under the age of 18.
Watch the Rules Committee live at 2 p.m. Eastern on C-SPAN 3, C-SPAN Now, our free mobile video app, and online at c-SPAN.org.
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Coming up Tuesday morning, we'll discuss this week's votes on the future of health care subsidies, Ukraine, and other news of the day with Texas Republican Congressman Keith Self, chair of the Foreign Affairs Subcommittee on Europe and a member of the Freedom Caucus.
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C-SPAN's Washington Journal, joining the conversation live at 7 Eastern Tuesday morning.
On C-SPAN, C-SPAN Now, our free mobile app, or online at c-SPAN.org.
Friday, on C-SPAN's Ceasefire.
At a time when finding common ground matters most in Washington, Pennsylvania Democratic Senator John Fetterman and Alabama Republican Senator Katie Britt come together for a bipartisan dialogue on the top issues facing the country.
This is also a massive victory for democracy and for freedom.
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Health and Human Services Secretary Robert F. Kennedy Jr. held a forum on Lyme disease.
He was joined by physicians, patients, advocates, and lawmakers discussing the need for rapid detection tests, as well as promising research and innovations in the disease and other chronic illnesses.
All right.
Thanks, everyone.
This is Ken Cowan, head of policy.
Thank you very much for joining the HHS Lyme Disease Roundtable today.
We have two different roundtables today.
Roundtable number one is going to be on patients, practitioners, and partnerships.
As a run of show, we have about an hour today for each roundtable, then a 30-minute break in between.
And first off, this is just something that Secretary Kennedy has been very focused on, and the first Trump administration was very focused on as well.
And thanks to Secretary Kennedy's leadership, made sure that we're going to convene everyone here today for this.
So I'm going to kick it to Secretary Kennedy, who's going to give some quick remarks, then we'll go around for introductions.
And we have a few topics that we will be hitting as well today.
Yeah, just first of all, welcome everybody and welcome to all the panelists.
As Ken said, we're going to have two panels today.
The first one is going to focus on physicians and treatments and patients, and the second one on innovations.
Both of them will last apparently an hour or approximately an hour.
This is something that I've wanted to do since President Trump offered me this job.
My family has been directly affected by Lyme disease.
I lived for 35 years in Bedford, New York, which is within the epicenter of Lyme disease.
Every member of my family has had Lyme disease.
I got Lyme disease in about 1986 when it was still very, very difficult to even get it diagnosed.
Luckily for me, I got the classic bullseye on my arm, and I was able to get an antibiotic treatment that was successful.
So I have not actually gotten sick from it.
I had a son who that same year had Bell's palsy, so his face was paralyzed for almost a year.
And you can imagine the heartache that that caused apparent.
I have another son who's had chronic Lyme disease and has gone through many of the perurations and experienced the kind of difficulties and the invisibility that patients who have suffered chronic Lyme disease all across this country have invariably suffered.
It is an invisible illness.
For many years, this agency had a deliberate policy to refuse to engage with the Lyme community.
And there were top officials in this agency who were saying that Lyme disease did not exist, that who would dismiss patients as the symptoms as psychosomatic and send Lyme disease patients to psychiatrists, which you can't imagine a worse combination.
These are people who genuinely are ill and are directed to find a psychiatric problem that explains their symptoms.
And so, and I've, because of where I lived, I've known many, many people whose lives have been destroyed by this disease, who go to doctor after doctor after doctor, trying to find somebody who will treat it.
And one of the problems is that none of the conventional tests that are administered by physicians' offices in this country, whether blood tests or MRIs, whatever tests will not detect Lyme disease.
And the physicians community, at least until recently, has not been well educated about it.
One of my sons recently, again, went to the Mayo clinic and was again told to see the psychiatrist.
And I can tell you, this child does not need a psychiatrist.
He needs help for his illness.
And the same thing happened with chronic disease epidemic during the 1980s, where millions of people were told that they were not sick, even though they had clear symptoms of injury and disease.
This agency, this day marks a milestone in this agency where we are recognizing that this is an illness.
It's an illness that affects 35 million Americans.
COVID also, long COVID, which we had a consortium recently, also affects 35 million Americans.
Many of the same things have happened.
And we need to take the same approach that we're taking now with long COVID, which is to go to the physicians who are treating this effectively, to talk to the patients, to listen to people, and then to do gold standard science and to develop tests or diagnostics and then develop methodologies for treatment that are working.
And one of the things that we're going to do is start a series with under HRSA, a series of centers for excellence around this country, where we will identify the best diagnostics and we will identify the best protocols that are successful in the field and on the ground so that patients who come in with these symptoms,
and we're going to do our best also to educate the physicians community so that they will be able to direct patients to people who can help them.
And, you know, one of the exciting things is that we're seeing many of these clinics, many individual physicians who've decided to specialize in this illness who are actually treating patients very, very successfully.
And the patients and the physicians are reporting excellent results.
We want to standardize that.
We want to make sure that every physician in this country can recognize the symptoms of Lyme disease and test for it and then to direct patients to the best possible treatments.
You know, I'll say another thing.
I spend a lot of my time, my life, in the woods, and that experience has now become hazardous across this country.
I remember one day in 1987 when I stood in my bathtub and picked 29 ticks off myself.
And that was typical in Bedford.
If you went out into the woods and you were active, you would get covered with ticks.
I was in Martha's Vineyard recently, and I learned that half the adult population of Martha's Vineyard now has alpha year-round population.
So it's become hazardous now to go into the woods.
And the Maha movement is trying to get children to be active, to get them to go outside, to get them to experience nature, not only because that's going to benefit them physically, but also the spiritual connection that we get to God, to our own health and well-being, to the serenity that we have access to only when we're in nature.
And now that's become a hazardous experience for people.
And we've got to figure out a way to make it safe for children to go back in the woods again.
And that's part of what we're doing here.
And it starts with listening to patients.
During the AIDS epidemic in this country, the NIH took the position that they were an ivory tower, that the solution was going to come from them, and they refused to talk to the physicians who were on the ground in places like Dallas and New York and San Francisco and Los Angeles, where physicians were developing ways of successfully treating the symptoms of AIDS.
And those physicians were silenced.
They were delicensed.
They were censored.
They were demonized and vilified.
There was a movie made about it called Dallas Buyers Club.
My uncle was one of the ones who convinced Anthony Fauci to do parallel track clinical trials with those physicians on the ground to fast-track the clinical trials of the remedies that were actually working to heal patients.
And the agency here did that very reluctantly.
They wanted to control and they wanted to develop the treatment.
And they developed AZT, which probably killed more people than AIDS did, conceivably.
Oh, it's not a good match.
We need to start listening to the public.
And that's what this agency is going to do.
I want to thank, first of all, Congressman Chris Smith, who was the chair of the Lyme Caucus and who has been responsible for getting some of the funding that we need to make sure that this works.
I also want to thank, I don't, is your name Bennett?
And I know your boss, Steve Cohen, and Alex Cohen, who live very close to me in Bedford and who also had Lyme disease ravage their families.
And my daughter was best friends with their children.
So I want to thank you on behalf of the Cohen Foundation for the resources that you've put into dealing with this terrible, terrible disease.
Without you, we wouldn't be anywhere near where we are today.
So I hope you thank Alex and Steve for me on behalf of the agency.
I also want to thank Congressman Morgan Griffin for joining us today, who's also been a leader on this subject matter.
Thank you to all sort of subject matter experts, the clinicians, researchers, innovators, patients, caregivers, and thought leaders who are with us today.
This is the latest roundtable building on the long COVID roundtables in September about invisible illnesses impacting everyday Americans.
Today's event is more accurately to be called an action table because HHS is acting on invisible illness and chronic conditions like Lyme disease.
The purpose of today is to elevate patient voices, advance people-first data-driven Lyme solutions.
Today, I'm proud to announce the renewal of the Limex Innovation Accelerator, which President Trump launched in 2018, between 2018 and 2020.
It's a partnership between HHS and the Stephen and Alexander Cohen Foundation.
This partnership includes a three-year memorandum of understanding that will build upon the $25 million that the foundation invested into HHS in the first Trump administration, including the $10 million LimeX diagnostic prize and more than $107 million the foundation has funded in total Lyme science and infrastructure, including Lyme disease biobanks and the Lyme Clinical Trials Network.
This announcement fulfills commitments made in the Maha Strategy Report to address chronic illnesses that affect millions of Americans.
HHS appreciates Dr. Ben Emser of the Cohen Foundation for being here and for his leadership.
Together, we are redefining the Lyme status quo.
Lyme disease affects nearly half a million Americans every year.
It is a bacterial infection transmitted by the black-legged tick and deer ticks.
And cases have now been reported in every U.S. state in the continental United States.
Lyme accounts for 82% of all tick-borne diseases and 77% of vector-borne diseases nationally.
Tick-borne diseases more than doubled between 2004 and 2016 and continue rising.
Children and those who work and recreate outdoors are at highest risk.
Ticks also transmit an estimated 20 pathogens that cause human diseases, including those that mimic or compound Lyme symptoms.
Some ticks cause Alpha Gowl syndrome.
This is the lone star tick.
That's the meat allergy.
If you get bit by that tick for even 10 seconds, you could be unable to eat meat for the rest of your life.
Current tests fail to detect all stages of the infection, and up to 20% of patients experience persistent debilitating symptoms, even after antibiotics.
Research has been underfunded, misunderstood for decades, leaving families without answers.
Comprehensive cost of illness studies have not yet even quantified the total economic burden of Lyme disease.
Lyme disease is an example of a chronic disease that has long been dismissed with patients receiving inadequate care and at some times derision.
In the Trump administration, things are different.
We are validating patients' experiences now.
Our country is built on freedom and Maha is built on informed choice and medical freedom and good science.
Patients must have clear information, real option, and the freedom to make decisions about their own care.
This is especially important for complex chronic conditions like Lyme disease.
I'd like to express my gratitude to everyone with us today.
You've all been leading the way on making this invisible illness visible and impossible to ignore.
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All right.
Thank you, sir, and thank you again, Wako.
Thank you, everyone, for being here today.
So right now, we're going to have each roundtable participant.
If you could please state your name, title, and a short description of some of the work you do, either treating or bringing awareness to Lyme disease or some of the work you've done as a member of Congress.
Congressman Smith, we'll start with you.
We'll go and we'll go counterclockwise around the table.
The patients, their families, everybody involved with Lyme disease and other tick-borne diseases are absolutely thrilled at your walking point on this.
And of course, with the full support of the President, and you are going to make the difference.
33 years ago, I met with CDC, NIH, and HHS people with a delegation from my state, because we're one of the epicenters of Lyme disease, top people from CDC.
And part of the discussion revolved around, they were saying if you take four weeks of doxycycline, no matter what stage this disease is in, it goes away.
And the insurance companies then said four weeks, that's all we're going to reimburse for.
And we got them to admit that their recommendation was being misread, if that's what was happening, that they were taking that four weeks as that's it for the insurance companies.
And they claimed that they would reverse it, and they did.
In 94, I offered an amendment to the NDAA, the Appropriations Committee for Armed Services.
And frankly, Fort Dix is in my district.
And we know that many men and women bivouacking were getting Lyme disease, going back to their states, National Guard, and Ready Reserve, only to say, what do I have here?
Getting mixed diagnosed by doctors who are very ill-informed about what was going on.
So we did an $850,000 per year program, and it took off to become law.
In 1998, I introduced the Lyme Disease Initiative of 1998.
It had all of the components that you mentioned, trying to find a way of treating, but before that, of discerning who has it, who doesn't, you know, a diagnostic, whether or not vaccines may or may not be applicable.
And it was a comprehensive bill.
It was bipartisan.
One time I had over 100 co-sponsors, could not get it out of the Energy and Commerce Committee because people in this building were saying, nothing to see here.
I was disgusted because I knew a lot of people who had Lyme, including members of the Assembly in New Jersey and others and friends.
So it was like, how can you do that?
It wasn't until the 2016, and you know this, 21st Century Cures Act, that we put the mainstay of that bill from 1998, 1998 into it, dealing with the issue of a blue ribbon-type commission, a task force that would leave no stone unturned with Lyme literate people participating.
That was transformational.
And what Secretary Azar did with his Lyme Disease Initiative and what that report, they finally recognized chronic Lyme, which had been a culture of denial for decades.
They wouldn't call it that per se, but they called it that.
And so that anyone who didn't get it right away, the way you did with the antibiotic, with the bullseye, could then get some treatment.
We did the TIC Act.
There was a bipartisan effort again, and you have the senator who championed it on the Senate side, K-Hagan Tick Act.
We're going to reauthorize it this year again.
And tonight, the Senate will vote on their NDAA conference report.
And I put in an amendment that passed four times, it failed, passed to the House, failed in the Senate, to finally look at, and I know you have spoken out so, so well on this, where did this come from in its hypercurrent manifestation?
Hello, my name is Dr. Ben Nemzer, Chief Program Officer for the Stephen and Alexandra Cohen Foundation.
First, I would like to thank Secretary Kennedy for hosting this historic roundtable.
The Stephen and Alexandra Cohen Foundation is the largest nonprofit funder of Lyme and tick-borne disease research in the U.S. Over the last 10 years, the foundation has granted more than $110 million to the Lyme and tick-borne disease field.
Since 2020, this includes a public-private partnership with HHS called the Lyme Acts Innovation Accelerator.
The foundation's approach is grounded in the patient experience.
Our founder, Alexandra Cohen, has battled Lyme disease for many years, and she is the visionary behind our work.
Personally, I'm a caregiver to my wife, who has endured Lyme and tick-borne disease co-infections for over a decade.
The foundation has funded more than 70 projects, but for this discussion, I would like to highlight one, the Lyme Clinical Trials Network.
Started in 2021 at leading clinical institutions such as Johns Hopkins, Mount Sinai, University of North Carolina, to name a few, the network conducts studies based on treatments that are working with frontline Lyme doctors and for other health conditions and rigorously evaluates them in robust clinical settings.
The Lyme Clinical Trials Network is designed to build evidence for repurposing medicines and other treatments so we can improve the lives of people suffering now.
While the network is currently testing many treatments, they can use additional support to expand capacity and test more treatments so that patients and clinicians that patients and clinicians recommend to the network.
Moreover, once the evidence is generated, the network needs support to disseminate this knowledge, to educate and train hundreds of thousands of frontline clinicians across the country.
Better treatments for the 2 million people suffering from long Lyme or chronic Lyme are within our grasp.
But we need to collaborate for maximum patient benefit.
My name is Dovi Hoenig, founder of Life for Lyme, a patient, someone who suffers from chronic illness from Lyme.
I myself have a similar story to what your children faced.
I went into the hospital 15 years ago, thought I had a stroke.
They dismissed me without any diagnostics.
I went to a personal physician who said that that could be Bell's palsy and let's test you for Lyme.
And he came back all excited to me, like it was like lighting eight candles of Hanukkah the first day.
You have all 10 bands.
You know, positive.
I never saw that before.
And he treated me.
And after I was treated, Slowly, within the year, my whole body started deteriorating and falling apart.
And we started doing some research, and I learned about all the different co-infections that ticks carry that we're unaware of, that the hospitals were unaware of, that the doctor was unaware of, and didn't test before.
And I took tests for these co-infections, our tonella, all these things.
And I had every different type of co-infection.
And we couldn't treat one before the other and learn about one before the other.
From that, we established, since I have the Orthodox Jewish Chamber of Commerce, a big network of a big network of doctors, and we established a call center and we started referring to people who are suffering from different symptoms to be able to diagnose and explain to them, create a panel of different blood work they should take to be able to know that there's different co-infections.
We shared it with hospitals.
I created RD papers.
I met with governors, with the Secretary of Health from different states, and we showed them that this has to be implemented to the hospitals.
So first of all, I want to thank you.
We're working since last November, Secretary Kennedy, discussing about creating this initiative.
And you're true for your word.
Dr. Raz, we met by the Naigaration, the presidents, and we spoke about the initiative that me and the Secretary was working about, and you've embraced it right away.
And a special shout out to Chris Smith, who's the oldest senior congressman who tirelessly efforts working together with us on this and many other things.
And it's frustration.
I remember Chris telling me, CDC walked into my office and said we failed in Lyme.
And I just want to finish with a takeaway of prevention because I'm not a doctor, but we do have the biggest referral department and we saved tons of over 30,000 people we serviced already.
Prevention number one is that immediately I suggest within 30 days to have the CDC guidelines updated with co-infections that exist and with those symptoms that exist to be distributed to all hospitals and doctors.
Because regardless, until we come to a solution, at least let them know to test for what symptoms because they're oblivious to letting people out without proper diagnostics what they get sicker and sicker from.
Number two is awareness campaigns, what we do, Life for Lyme.
I do billboards, spend tens of thousands a year, papers, awareness, flyers, all over the place.
We focus on hospitals, doctors, and we focus on the public.
If you have these symptoms, suicidal symptoms, if you have fatigue, if you have brain fog, if you have all these different symptoms, get tested not just for Lyme, but for all the different co-infections.
And we share that and we print out all the co-infections awareness.
So there's two elements, and the doctors and the hospitals have to be educated, and the patients have to know what to look out for.
That's going to save lives.
At least know that people be able to tap into what's doing.
And the third thing is insurances.
Insurance is, you know, it's killing families.
We deal daily with families, breadwinners, who are suffering from Lyme disease.
Now it's called this, it's called, it's called, you know, it mimics all different diseases.
So people are running from doctor to doctor, different symptoms, and at the same time, they can provide to the families, and it's out of pocket because insurance only covers the first initial meetings.
But with having said that, insurance should be addressed right away, and even there should be executive order that they have to cover extended care.
My name is Stephen Phillips.
Thank you very much for inviting me to speak today.
Good afternoon.
I'm a physician, researcher, and author.
In 1996, I opened my medical practice, and from day one, we focused on chronic illness.
And the goal was to identify and diagnose properly chronic infections that are known to cause a wide range of chronic and autoimmune illness, things like Lyme and others.
And that's what we've done.
And my practice has been exceptionally effective at getting patients off of disability and back to full lives.
And these results have been replicated over several decades over more than 25,000 patients.
My research areas have been fairly broad.
I started out with microbiology and immunology work, went into innovative ways for direct detection tests, which are desperately needed.
And my most recent research area has been in drug development, where I've worked with people at Stanford to formulate a new drug candidate.
And it's been the final throes of testing at Tulane University.
And I'm really privileged to serve on the scientific advisory board for the Bay Area Lyme Foundation, which has funded $40 million of research that's been some of the best in the field.
It's the most patient-centric, most innovative, and really the most impactful.
I'm also an author, a co-author of Chronic, which is a best-selling book on chronic illness.
And it details my story.
And it's really a distillation of the decades of research and my medical practice and what I've accumulated knowledge.
And I'm a best-selling author on Substack, and it's called Zero Spin.
So like others here today, my family and myself have been devastated by these infections.
I was motivated to open my practice, not because I got Lyme in med school, but yeah.
Oh, sure.
I'll take it after my dad with my soft-spoken.
I said I was motivated to do what I do because of my father.
I ended up getting Lyme in med school, and it was a chronic and relapsing course, but it was not disabling.
And what I did learn through my studies, because I took all these electives in Lyme at Yale, and I realized my father was most likely suffering from undiagnosed Lyme for more than 20 years.
So he had an insidiously progressive dilated cardiomyopathy.
He was given six months to live.
They were putting him on a heart transplant list.
And I went to the cardiologist and I said, can we test him for Lyme?
And the guy refused.
And I was thrust in this very unfortunate position to try to have to desperately save my father's life.
And fortunately, he responded really beautifully to antibiotics.
And his heart function normalized, and he lived another 25 years.
And in 2010, I came down with an absolutely devastating illness related to Bartonella, which I sustained from spider bites while sleeping in my bed.
And just for the sake of brevity for these introductions, I won't go into the full details of all that, but I would like the opportunity during this roundtable to paint the four corners of the problems because after 30 years, they're pretty apparent to me now, and to hopefully present some potential paths forward of how we can get this situation taken care of.
Secretary Kennedy, thank you for the honor of being at this table and thank you all for caring about those afflicted with Lyme disease.
My story reflects many across this nation.
In 2020, I became chronically ill.
my parents who watched me sprint across the soccer fields now watched as i struggled to go on walks i'm so so sorry all right My story reflects many across this nation.
In 2020, I became chronically ill.
My parents who watched me sprint across soccer fields now watched as I struggled to go on walks, to take deep breaths, and even just to function without pain and fatigue.
My parents drained their hard-earned money with doctor appointments, blood tests, heart monitors, and imaging.
The medical system tossed us back and forth, leaving us at the end of the road broken with misdiagnoses, little in our wallets, and no answers.
If it wasn't for my relationship with Christ, I would have lost hope.
I've been fighting Lyme disease for more than five years.
Currently, I'm being treated by Lyme provider Gary Hodges.
I'm very thankful for just the blessing she's been in my life.
She works with long COVID doctor Jordan Vaughan.
As you all know, patients need better and affordable testing.
We need insurance to cover our treatments because we pay out of pocket.
Thankfully, organizations like Limelight help patients with this.
Lastly, one Lyme sufferer said, Let me know if you find something that works.
Some patients spend years sinking all of their money into treatment, but they don't get better.
We are hoping for more research to know what works.
Secretary Kennedy, I know that you understand the impact of Lyme disease, and I want to say thank you and thank you all.
I know that you all are fighting for us and are dedicated to gold standard care.
Thank you.
Good afternoon.
My name is Olivia Goodrow.
I'm 21 years old and I have been battling tick-borne diseases for 14 years now.
It took.
Yes, I can.
Better?
Wonderful.
I'm 21 years old, and I've been battling tick-borne diseases for 14 years now.
It took 51 doctors and 18 months for me to just be diagnosed with Lyme disease.
Then it took another three years and four more doctors to be diagnosed with five other co-infections.
At 12 years old, I started the Live Lyme Foundation to give money to kids to afford their Lyme disease medication, to give funding, and to promote awareness.
Starting at 13, I began developing apps, including TickTracker, the long-haul tracker, and Tickmojis, which I will talk about later.
Through LiveLime, I've hosted six scientific international summits that have had participants from over 50 different countries.
I've also written my memoir, But She Looks Fine, From Illness to Activism, which details how I turned Lyme disease into Lyme Aid.
Lastly, I am a junior at UCLA and I am working with renowned scientists on rapid diagnostics for tick-borne diseases.
Secretary Kennedy, thank you so much for inviting me here today, and thank you all here for the incredible work that you do, and I look forward to making history.
Hi, thank you so much for convening this meeting.
My name is Lyndon Hu.
I'm an infectious disease physician at Tufts University, so I think I'm probably part of that ivory tower.
But I will be the first to admit that we have not, in the 25 years I've been doing basic science, patient treatment and clinical science, been able to come up with satisfactory answers for patients and cures.
I will say, though, that I am probably the most excited I've ever been during my career at the opportunities we have to actually solve this right now.
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That's thanks a lot to people in this room at this table and also in the audience here in terms of bringing attention, focus, and funding to this problem.
And I think we're at a very unique point in science where we now have the tools to do things.
Traditionally, we've done science in very precise, elegant ways, looking at one potential hypothesis at a time.
But now, with the technology that we have, we can do what's called unbiased science and look at all the hypotheses at once and have the patient and the patient data tell us what's the important thing to be looking at.
So to that end, I'll just mention two things that we're involved in at Tufts.
One is an NIH-funded study to enroll 1,000 patients with Lyme disease so that we can put them through all these what are called multi-omic tests and come to some answers with that.
But one of the unique things that we're doing with that study is that we are actually using clinicians on the front lines and as our research centers.
And so they're the ones who are involved in bringing the patients to us, enrolling them, and being involved in telling us what they're seeing.
So we've learned a lot through that trial.
We're only in our first year in terms of how to work with clinicians, busy clinicians who are not prepared to do research and what kinds of support we need to give them to be able to do the best kinds of research.
The other thing I'll just mention quickly is that we're also involved in a drug repurposing study.
We've just completed screening 50,000 compounds against Lyme disease, many of which we found active are actually very common, safe medications.
I'm not sure where we're going to go with those eventually, but the idea is that we are now taking that.
We're on our way to 100,000, and we are going to take that, feed that with our collaborators into a machine learning artificial intelligence model where we can then screen virtual libraries of hundreds of billions of compounds quickly to identify the parts of the ones that we actually screen physically that are the most active because repurposed drugs are not designed for treatment of Lyme disease.
But if we can figure out what makes them active using machine learning, we can develop better drugs for that.
So I'll stop there and thank you so much for convening this.
Needless to say, we are a hotspot like so many others for tick-borne illnesses and cases have been increasing.
Lyme disease is devastating and Virginia Tech in my district is doing some research to understand the prevalence and gather more information into Lyme disease and other tick-borne illnesses.
I would be remiss and I think we all agree that Chris Smith has just done amazing work and I'm hopeful that we can get his K-Hay Hagen tick act through the Energy and Commerce Committee.
unidentified
As chairman of the Health Subcommittee, I will do everything I can to get it on there early.
We got a little slowed down by the shutdown, but hopefully we'll get this done next year.
That's important for those who want to use a vaccine.
But as we had discussions over the years, he told me that there was a case that he was aware of, I'm not sure it was his, where a lady kept breaking out in highs, going into anaphylaxis, and it turned out to be dryer sheets with beef tallow.
In order to transplant organs from pigs and cows, they had to take out the alpha-gal protein genetically from those animals.
And I suggested to them in early 2020 that they look into having their product that they originally designed the genetic work in my district and look to the FDA to see if they could get it approved for food.
There's an Alpha Gal safe pig product out there, but no major supplier Supplier has picked up the license on it, but it's out there for those people who suffer from that.
unidentified
So that's a minor one.
But then I asked Davis Michaels, who does incredible work for me in my office, to come up with a list of all the different ones.
And we know about the, everybody knows about the big three, Lyme, AlphaGal, Rocky Mountain spotted fever.
And as chairman of the Health Subcommittee of Energy and Commerce, I'll do whatever I can to help move these things along, not just Chris Smith's bill, which he's been the champion on for years and years, but anything else that we can do to improve situations on lots of diseases.
First off, let me make it clear to all of you if you didn't already realize it, that this Sentinel event, this roundtable on Lyme, would never have happened if it wasn't for Secretary Kennedy sitting calmly next to me, not being so calm all the time.
Taking a you know, he looks mild-mannered here, but you get him going on things like Lyme, and it gets him agitated for a very good reason.
The massive ship that is HHS, even with the great captain, cannot change direction unless he's barking about it all the time.
And I learned early on that when you mix medicine with politics, you know what you get?
Politics.
There's no medicine left.
I learned this on the show when I began talking about chronic Lyme.
And I've had many of the folks around this table either on the show or I interviewed around it.
Doc Phillips and others have come and joined with blue chip pedigree, with great efforts to try to explain what's happening.
They get no respect from academic centers frequently, but generally from the medical community.
And the question is, why is that?
And there's a quote as you walked into this building from Hubert Humphrey, and he says, the moral obligation of government to take care of those living in the shadows.
And folks who suffer from chronic Lyme are indeed living in the shadows.
Many of you have witnessed it.
I certainly have.
But when I began to recognize that the boards and the other groups that drive this process, and insurance companies, of course, are incentivized by these boards taking a strict stance with a limited amount of time for treatment and thus forcing people into diagnosis that might not truly represent them, you begin to realize you need powerful allies to make change happen.
The Cohens were friends of mine, and Alex actually was born at my hospital many years, not that many years ago, a few years ago.
But she and Stephen have been very supportive of this, but it takes people like that who appreciate this.
But I'll tell you, going to those events, you realize there's a volcano of activity ready to erupt amongst people who are frustrated, angry that this has not been addressed.
As Congressman Smith said, when you're talking to the wall and nothing happens, after a while, you realize that it's not an accident.
There's an active desire not to hear the story get loud.
And so we began looking into this a little bit at the instruction of Secretary Kennedy and noticed a few things.
First off, in the chronic disease categories, especially with climb, there's a general short-circuiting of the system.
So it becomes a condition that resembles other conditions.
It makes it hard to put it into a bucket.
So if you don't want to put it in the bucket, it makes it that much easier to avoid managing it.
There are about 90,000 cases of Lyme disease reported by the CDC.
Now, you heard a much larger number from Secretary Kennedy, didn't you?
Others will probably reflect that.
But we only know about 90,000 because only 90,000 fit into one of those buckets.
That's data from 2023, by the way.
It is still the most common tick-borne disease in North America, but it's not nearly what it truly represents in the impact it has, including economic impact on our country when college students can't show up in class, get educated, go to school, and become contributing members of society, which is one of the values of investing in healthcare.
Of those people infected by chronic Lyme, in addition to memory loss problems, joint pain, debilitating amounts of discomfort, often, you end up with destructions of families.
People don't even know what to think about their relatives.
My family's from the eastern part of Pennsylvania.
It has a lot of Lyme disease.
I can't even keep track of the number of relatives, relatives who have Lyme disease, much less my friends.
And these people are not crazy.
We talk about it in many different contexts, but that's how they're labeled.
So Secretary Kennedy asked us to address funding issues.
He asked me to run the Centers for Medicare and Medicaid Services.
And the question is: will we pay for Lyme disease?
So Medicare, which covers 68 million Americans, 90% over the age of 65, but chronic disease categories are often treated as well, it turns out, have a long list of ailments that they treat.
And Secretary Kennedy, I brought you this list, but it includes things you might expect on a list like this: Alzheimer's disease, asthma, atrial fibrillation, autism is on this disease for treatment, some chronic ailments like cardiovascular disease and cancer when they're in that category.
But it turns out that we can cover chronic Lyme disease.
It's actually already covered, and we've updated our website to make it clear that chronic Lyme disease is present because it's a disease that is, and I'll read these words to you because I want you to understand them because this is what the statute is on the website right now.
Clearly identifiable infectious triggers.
That includes Lyme disease.
Now, when you get bitten by a tick, many things happen besides brelia.
Other things can get infected viruses sometimes, which are hard to identify, but clearly identify infectious triggers and difficult to identify infectious triggers both belong in this management structure.
So we've updated, they covered the chronic care management category for Medicare, which are people whose kind of conditions, and they have to have at least two, will expect it to be lasted at least 12 months or until death.
We don't want the latter.
We want the former, so we're going to pay for it.
Secretary Kennedy, there's my homework assignment.
And we announced this today because, again, it wouldn't have happened without a person who's curious and courageous.
And Secretary Kennedy said this in the very beginning.
We should listen to patients.
He listens.
He listened to all of you, and he wants us in the medical community to listen harder as well with this Medicare guidance.
And because Lyme is quantified as an infectious-associated chronic disease, I think we can make America healthy again by making it easier to be healthy in America by getting serious about the management of this terrible problem.
One of the reasons we wanted to host this meeting, as I make clear, is to announce to the world that the gaslighting of Lyme patients is over.
And we now Lyme, incidentally, Lyme and COVID are the numbers six and seven, respectively, chronic disease in this country after diabetes, obesity, cardiac disease.
So the burden is enormous.
And the economic cause have not been quantified anywhere.
But as Dr. Haas said, there are all kinds of collateral costs when people can't work, when families are destroyed.
And I've seen the pressure that it puts on families when you have a child who's chronically ill, who has brain fog year after year.
I think my son has seen more than 51 doctors.
And that's what happens.
That is the story.
That is the odyssey of American kids who are motivated to find a cure, to find a remedy, and who are relentless.
They're going to see doctor after doctor.
And I'd like to do something in the short time that we have left.
And I wish I could spend two or three hours with this panel.
We have another panel coming up on innovation, but I'd like each of you maybe to go around. and talk about the most exciting innovations that you're seeing right now that might give hope to people, to patients who have Lyme disease around this country.
And maybe I could start with Dr. Hu.
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I think we're seeing an explosion in new diagnostics that are coming through.
And as you mentioned, I think diagnostics are the start of all of this until we have a diagnostic that allows us to clearly separate out patients.
Because I think the general, and is it okay if I do some non-scientific, justified speculation?
But I think many people think that Lyme disease is probably not just one disease, that people get there through different pathways, that there are different things that go on.
And until we have tests that separate people into the different subgroups of Lyme disease, we won't be able to really test the treatments that are appropriate and going to work on them.
And when we lump people together and test a treatment, it's not going to work in some, it's going to work in some, but it washes out, so you can't tell if anything's working.
So I think the new coming diagnostics are terrific.
I think there's a lot of new coming things in prevention so that we can prevent some of the people from suffering the way the people at this table have.
So I think those are really exciting in terms of some of the new preventative things that are coming down the pipeline that are kind of innovative and not been tried before.
So, you know, things in terms of our group is working on narrow spectrum antibiotics that can be taken for long periods of time to prevent disease, but could also be used to try longer term therapy because all of our tests for chronic Lyme disease have been done with pretty short-term antibiotics, like a couple of months.
So if we had something safe that we could use for longer periods of time, we could really test these hypotheses and see if they work.
So those are some of the exciting things that I see coming down.
And one of the reasons I'm really excited about this point in time for all of us.
Yeah, absolutely.
I think going on topic with the diagnostics, there are incredible diagnostic tools that are being developed.
And one that I'm actually working on is through UCLA.
And it is a rapid X VFA Lyme disease test.
That is a multiplex vertical flow assay.
And to put this into layman's terms, today, diagnostics with Lyme disease, they take time.
They take time.
And tick-borne diseases, they do not have time.
They are very time-sensitive.
And this can be completed within 20 minutes.
In our hopes, you could buy it at a Walgreen store.
And I believe that this is a rapid test for tick-borne diseases that could really help people all over the world, especially in rural areas where they might not have access to clinics.
Additionally, LymeSeq is also working on a multiplex immunoassay, which has AI learning as well.
And it has a 94% sensitivity rate, which means that it is extremely capable of detecting tick-borne diseases and Lyme disease.
So I think that a lot of universities and a lot of groups are creating incredible diagnostic tools.
And I think what we can do is really just fast-track these innovations, because once we get a diagnostic tool that can accurately detect tick-borne diseases, Lyme disease included, then that allows a lot more capabilities for getting proper treatments, medications, insurance companies to cover these things.
So those are some of the innovations that are out there.
I think, at least from a patient standpoint, there's a lot of uncertainty.
You're waiting there day after day after day.
For me, 1,400 days, you know, with a lot of uncertainty, what's wrong with me?
And I think just having an accurate diagnostic tool would benefit us a lot.
And of course, like I said before, patients spend all their money in many years into treatments only to find at the end of the road that it didn't work and you're out of money now.
So I think something that's a guideline or a focus that helps patients know, okay, this treatment is the best possible treatment for you based off of this best possible diagnostic tool.
So I would hate to be a wet blanket on everyone's optimistic parade here, but to make better antibodies, we desperately need them because the current antibody testing on their best days is kind of abysmal.
They miss more cases than they diagnose.
However, on day 21 of doxycycline, those antibody tests, even when positive, failed to be useful.
We really need direct detection tests.
You know, Lyme bacteria have been extremely difficult to culture from infected hosts after a period of time.
If you inject Lyme bacteria into a dog, you let the dog get sick for a couple of months, you know the dog is sick.
The dog has Lyme.
You did not treat the dog.
You can't isolate Lyme bacteria from the blood of the dog.
It's very difficult.
Despite that difficulty, these organisms have been obtained alive from not only animals, multiple species when they cut them up after therapy, they have been found in human tissues around the world.
We know that the pathogen persists, and yet we don't have a good direct detection test on the market.
We can't even kill Lyme bacteria in the test tube with these several antibiotics that are recommended by the Infectious Disease Society of America as the purported curative treatments for Lyme.
The situation, if you explain this to Joe the plumber, they would say, what is wrong with this field?
It is so messed up.
How can this paradigm have persisted for so long?
This is an easy to diagnose and easy to treat illness when the facts speak otherwise and they have done so for decades.
And when it comes to Bartonella, Bartonella is a beast.
It's incredibly antimicrobial resistant.
There's only one class of antibiotics that actively kills and effectively kills Bartonella, and that is immunoglycosides.
And they are hamstrung by horrible pharmacokinetics.
They don't get inside cells.
Bartonella is an intracellular infection.
They don't pass the blood-brain barrier.
Bartonella does.
They are horribly toxic.
People can only be on them for a couple weeks before developing ear toxicity and kidney toxicity.
So when I say what's exciting going forward, I can tell you that I do think that in the next couple of years, there'll be the opportunity for AI-designed drugs and small peptides.
I know that there's good research going on at Duke with a subset of screening, like high-throughput screening for a small molecule.
Finding that's funded by the Cohns and also originally by Barry Line Foundation.
So that's optimistic there.
But the other thing I wanted to mention is that a couple people have said that Lyme can mimic this disease and mimic that disease and what have you.
And when I opened the doors, one of the first things I noticed that people were coming in with diagnoses of fibromyalgia and rheumatoid arthritis and lupus and multiple sclerosis and MECFS.
And patients are getting better from these various conditions.
So, if it mimics a condition 100%, and Lyme and these other infections are known to be able to mimic these other conditions, then by definition, it's causing these conditions.
This is a broader issue than people, I think, realize.
This is not just about Lyme and the way that people think of it as Lyme, but I think that these other conditions, like there are over a dozen studies, randomized control trials on rheumatoid arthritis, showing that antibiotics work and placebo doesn't.
The critics of these studies will say, well, some antibiotics have anti-inflammatory effects, that's why they work.
No, they've also done the studies in antibiotics that are completely devoid of anti-inflammatory effects.
There are multiple open-label trials on multiple sclerosis showing that antibiotics help multiple sclerosis patients when standard MS therapies have failed.
And I can tell you from my personal experience, over 30 years, I've gotten quite a number of patients with these conditions to get better after standard therapies have failed.
So, that's the only thing I would like to add to the commentary.
Thank you.
Pardon me, Dubie.
We have a, just to add up, we have about 10 minutes or so, so we'll have to keep the remarks short.
Thank you.
Secretary Kennedy, I just want to acknowledge on the surface that you are the innovation.
Recognizing Lyme disease today, what you've done made history without your recognition, all these solutions, doctors, and many doctors deny Lyme disease as a myth.
Today, what you've done, put it out publicly, is the innovation.
And Dr. Roz, for you incorporating Medicare to cover extended care is innovation because this is the surface before we go down to all these solutions.
And I want to applaud you for that.
And I just want to ask you: how do we get other insurances to mandate them to follow in your direction?
Private insurance will often cover Medicare decisions, and there's obviously a desire to treat chronic illness.
But Dr. Phillips is really addressing the problem: if you don't know what you're paying for and you don't think it really works that well, you're not that incentivized to treat it because you don't get the benefit of a patient getting better.
I actually did not realize that glycosides were the only way of getting to an intracellular organism, but that is mission-critical because we argue about 21 weeks of IV, this or that.
But if the patient is still sick afterwards, and if you go to any of the Lyme events, you'll see a large number of patients who claim that they've been through every treatment possible: hyperthermia treatment, hyperbaric treatment.
In surgery, there's an adage that if you have more than one operation to treat a disease, you don't have a good operation.
Because if you had a perfect operation, you wouldn't need two.
There's probably 25 Lyme treatments, which means none of them are really that effective as much as we'd like.
If you cobble them together, perhaps you can get the results, and anything's better than nothing.
But the insurance companies need a bit more confidence that we have better approaches.
unidentified
That leads back to awareness.
Thank you.
Some of the exciting aspects that I've seen in my practice and also listening to all of you speak is the possibility of having better diagnostics and research, money going into research, that is going to help legitimize this disease, this diagnosis.
The aspect of that that will impact me and therefore impact my patients is lifting the barriers to the clinicians.
I think the biggest problem that I saw when I worked in internal medicine is I was given 15 minutes to talk to a patient, and that's not enough time to take care of anything, really.
I started working with Lyme patients and I was afforded the ability to spend an hour, if not longer, with these patients.
And that is critical because this is a disease that affects every system of the body.
And you have to systematically go through those systems to support the body so that it's in the best condition possible to treat.
You know, I, in practice, have approaches from both Eastern and Western medication or medicine to help holistically treat the patient, which I think is incredibly important.
You know, I also feel that there's a lot of limitations on utilization of long-term antibiotics.
We at my practice use pulsed antibiotics in hopes of reducing resistance as well as giving the body time to detox and not create further issues down the road in regards to gastrointestinal problems.
But I think the innovations that will occur hopefully from this roundtable and future roundtables will allow me to do my job that much better.
So thank you.
All right, thank you.
I'll be brief.
Two things.
One, tissue analysis.
Oftentimes in patients, Lyme disease is not flowing through the blood, but that's the only place that we typically test.
And so a lot of research done by Dr. Amy Prowl and the audience is looking at tissue reservoirs, seeing how the pathogens may be harboring there that we can understand the etiology as well as a potential diagnostic tool.
And then, second, I think just for everyone here as well in the audience, we've been talking a lot about long-line chronic Lyme and jumping into the deep end.
If you need a good summary, I would recommend the award-winning documentary, The Quiet Epidemic, goes through a lot of the history of Lyme and all the difficulty of patients, some of the innovations.
So I think that'll be a really great place for folks to start.
Duvi, thank you for your great work in Lakewood and around there in the area, which is in my district.
And Morgan, we now have a chairman of the health committee who is totally committed to Lyme disease.
In the past, when our bill would come before that subcommittee, it was killed each and every year.
The gentleman from my own state of New Jersey, Frank Pallone, he was chairman.
I lobbied him, asked him, appealed to him, and he would not bring up the bill.
And the mainstay of that bill was the Blue Ribbon Commission, the task force, to finally look at all of these in a very dispassionate way.
Having your leadership, Mr. Kennedy, is just, and you too as well, is extraordinary.
We always had like a civil, okay, thank you, go on, have a nice day, from the top people at NIH, CDC.
I mentioned that 82 meeting, that 92 meeting, I should say, was unbelievable.
They were the best of the best, top people.
And they basically said, no, thank you.
There's the door.
Chronic Lyme does not exist.
There needs to be something to be done with the infectious disease side of America.
They lobbied aggressively against our bill.
And when last time we got the bill passed on looking into what we may have weaponized the ticks, the big story in the Washington Post mocking the heck out of me for offering that.
I asked the reporter, have you read Bitten?
Have you looked at any of this stuff?
No, no, no.
And yet they carried the story like we have a tinfoil hat on our head.
I was very incensed at that because who gets hurt?
All of those people.
Megan Bradshaw is here.
Megan told her story recently.
She should be on television talking about not only her courage, but her overcoming spirit.
And she is just one amazing former patient.
She still deals with, obviously, these issues.
And Olivia, when she talked about her tick tracker, what an amazing thing that is.
I've had hearings on my Foreign Affairs Committee.
I've had hearings on how this is global.
You know what the pushback was on that, Mr. Secretary?
Oh, if you're in Canada, you probably have visited the United States at some point.
And I had a senator there tell me that that's what he was told by officials there.
I think that's changing, but this is a global issue that needs to be treated as such.
And I want to thank all the panelists for being here.
I want to thank my partner and friend, Dr. Oz, for joining me, Ken Callahan.
And stay tuned.
We'll be back in about 20 minutes with the next panel.
Thank you all very much.
Thank you, the audience, for coming.
unidentified
With Affordable Care Act subsidies set to expire at the end of the month, the House Rules Committee meets Tuesday to consider health care legislation aimed at lowering costs through employer-funded health reimbursement plans and cost-sharing reduction payments.
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