Tick-Borne Disease Research Accountability and Transparency Act of 2014

Mr. Speaker, I thank my good friend from Texas, the distinguished subcommittee leader, chair, and doctor.

Mr. Speaker, I rise in very strong support today of the Tick-Borne Disease Research Accountability and Transparency Act of 2014, an historic bill offered by my good friend and distinguished colleague, Chris Gibson.

From all those who suffer from this hideous disease, thank you, Chris.

I would also like to extend my very special thanks to Chairmen Fred Upton and Joe Pitts, as well as their staff, for their tireless efforts to ensure the final bill brought before the floor today establishes a means to address huge gaps that exist and the great unmet need in the Lyme community.

Mr. Speaker, in 1992 I met with the two top medical officials at the National Institutes of Health and the Centers for Disease Control working on Lyme and an extraordinary woman named Pat Smith. We laid out a case. She did most of the talking. They listened. They were responsive. However, 22 years later, far too little has been accomplished.

I raised, as did she, the apparent ineffectiveness of a month-long antibiotic treatment for a sizable percentage of people. The CDC says between 15 to 20 percent of the people suffering from this disease don't seem to get better. We call it chronic Lyme.

Dr. Richard Horowitz notes in his bestselling book, ``Why Can't I Get Better?'':

A patient's journey typically begins with a primary care

physician or a family doctor. A maximum of 30 days of

antibiotics is the accepted standard of care for Lyme

disease. If patients report back that they are not getting

better, they are likely diagnosed as having ``post-Lyme

syndrome,'' chronic fatigue syndrome, or fibromyalgia.

He then described how children are treated for other diseases or disorders, and continues:

This may help some of the symptoms yet fail to address the

root problem.

Unfortunately, without better information on chronic Lyme and how to treat it, we will continue to ``fail to address the root of the problem'' and, in so doing, fail to assist patients in need.

Mr. Speaker, I fully understand that there are concerns about the prolonged use of antibiotics. I chair the Global Health Committee and have chaired numerous hearings on multidrug-resistant tuberculosis and many other diseases that increasingly are being treated with antibiotics with less effectiveness. Yet the ISDA, in their final report of the Lyme Disease Review Panel, found:

There has yet to be a study that demonstrates comparable

benefits to prolonged antibiotic therapy beyond 1 month.

There have been far too few studies. There is an engraved invitation. I say to my colleagues, there needs to be those studies. You can fit on half a

page the number of studies that have been done over these many years.

However, in that same report, they went on to say:

This conclusion was reached despite the large volumes of

case reports, case series, anecdotes, and patient

testimonials reviewed that attest to perceived clinical

improvement during antibiotic therapy.

Large volumes are just dismissed and laid aside as if they were trivial. It was dismissed and didn't make it into the final report, except for that sentence.

Dr. Horowitz has said that:

In fact, increasing the dose of antibiotics and/or

extending the length of treatment clearly did help a certain

percentage of my patients. Their fatigue, headaches, joint

and muscle pain, and cognitive symptoms improved.

Among clinicians--and I have met with dozens of them--Dr. Horowitz is not alone at all in those findings.

So, Mr. Speaker, we need scientifically-based answers and a comprehensive probe that goes wherever the data suggests. And this is especially important for my own constituents. In New Jersey, over the last 15 years, about 55,000 people have had cases of Lyme.

This bill before us accelerates the process of helping Lyme patients by establishing an interagency working group on Lyme disease with diverse opinions--which is very important--in a transparent and open manner and creates a strategic plan to guide existing Federal Lyme disease research and treatment programs.

Of particular significance, the House bill that we will vote on today for the first time identifies and seeks to address chronic Lyme disease.

Mr. Speaker, the CDC says:

Approximately 10 to 20 percent of patients treated for Lyme

disease with a recommended 2-4 week course of antibiotics

will have lingering symptoms of fatigue, pain, or join and

muscle aches.

I would respectfully submit that they are symptoms of something that has a root cause.

The CDC refers to chronic Lyme as ``Post-treatment Lyme Disease Syndrome,'' and many people have been dismissed and told, Oh, you are a hypochondriac. And yet there are so many cases, it can't be dismissed.

This bill is a great step forward for chronic Lyme patients, especially those who have suffered for decades with this debilitating disease, again, only to be told that their illness does not exist.

Again, I want to thank my good friend, Chris Gibson, for his leadership and for the leadership of our House Republicans and our friends on the other side of the aisle. This is a bipartisan bill, and I do hope Members will support it robustly.

Mr. Speaker, I rise today on behalf of thousands of Americans who have been impacted by Lyme disease and tick-borne illnesses each year, including in my district in upstate New York, where this is a public health scourge.

This legislation is truly constituent-driven and represents a significant step forward in what has been an extensive process. For the past few years, I have worked with physicians, patient advocates, professional researchers, and patients and their families throughout New York and the United States on a bill that focuses on solutions.

I am proud to be joined by two of my colleagues who have been national leaders on this issue: Chris Smith of New Jersey is our leader, who has, for several decades, been a tireless advocate for our sufferers, and Frank Wolf of Virginia, who has added his significant voice to this issue and has also made incredibly meaningful contributions to this bill and the cause. I thank them both.

Likewise, I thank Dr. Richard Horowitz, Pat Smith, David Roth, Jill and Ira Auerbach, Holly Ahern, Chris Fiske, and other Lyme advocate leaders from Pennsylvania and from across the Nation for their significant and persuasive engagement and unyielding commitment to change the direction of U.S. policy to bring solutions and relief for our chronic Lyme sufferers.

Mr. Speaker, I would also like to thank Chairman Upton, Chairman Pitts, their ranking members, and their dedicated committee staffs. Thank you all for your great work.

In August of 2013, the Centers for Disease Control and Prevention estimated that the number of Americans diagnosed with Lyme disease each year is now over 300,000, while other researchers, such as Holly Ahern, have shown that we are significantly underestimating the cases in the U.S. It is clear that the increase of Lyme disease and other tick-borne diseases is rapidly becoming a public health crisis in the United States. While the CDC, NIH, and other Federal agencies have recognized this threat to public health, regrettably, we have made far too little progress in improving prevention, diagnosis, and treatment.

This legislation before us seeks to make a positive difference, prioritizing and coordinating Federal tick-borne

disease research through an interagency working group made up of relevant Federal agencies as well as non-Federal partners, such as experienced physicians, researchers, patient advocates, and chronic Lyme disease patients themselves.

The working group is tasked with ensuring interagency coordination, accountability, and transparency, minimizing overlap, examining research priorities, and ultimately making policy recommendations. The working group is required to reflect a broad spectrum of scientific viewpoints and ensure patients and their advocates have a seat at the table.

The bill increases oversight and accountability over tick-borne research throughout the relevant Federal agencies, ensuring all stakeholders are situationally aware of all existing research before making policy recommendations.

Importantly, this bill also requires the Secretary of Health and Human Services, informed by the working group report, to submit a strategic plan to Congress to improve patient outcomes to cure our chronic Lyme sufferers. This plan will include benchmarks to measure progress, ultimately ensuring we spend the taxpayer dollars wisely and find solutions and cures that are long overdue.

Finally, this bill is dedicated to those chronic Lyme sufferers out there who have been ill for years, at times seemingly without hope, wondering if anyone in Washington was listening or cared. We hear you. We do care. Today we pass this legislation to help you get better.

I urge my colleagues to support the bill.

Mr. Speaker, I am proud to be one of the sponsors of this bill. I thank the gentleman from New Jersey.

I want to thank my colleague, Chris Gibson from New York. Here we are again. Just a month ago, my colleague Mr. Gibson and I were working across the aisle to lower energy prices in the Hudson Valley, and here we are working again on an issue of tremendous importance to our region. I support the Tick-Borne Disease Research Accountability and Transparency Act, along with so many others, and I want to acknowledge Mr. Gibson's leadership on this issue.

I am proud we are working across the aisle, because Lyme disease is an epidemic in the Hudson Valley, and it is hurting our kids, our friends, and our families. It is happening everywhere--on our playgrounds, in our backyards, at parks, picnics, and on trails in the woods. It is the invisible, silent disease that so many find themselves developing--and far too many find out too late. It is now one of the most common and fastest growing infectious diseases in our country. Every year, there are hundreds of thousands of cases nationwide, with 96 percent of those cases in only 13 States.

In New York, thousands of my neighbors in the Hudson Valley are suffering from Lyme disease every day. Four counties in the Hudson Valley, including Dutchess and Putnam Counties, have reported the highest rates of Lyme disease in the entire country. I hear about it everywhere I go.

A man named Alex from Washingtonville told me he has been suffering from Lyme disease for over 35 years. I spoke with a man who has a tree- cutting business in Garrison, New York. He said he has got about 12 guys working for him. I said, How many have got Lyme disease? He said, Every single one. All of my guys have Lyme disease, he said.

A member of my own staff spent a month this summer injecting himself with heavy-duty antibiotics through a catheter that was put into his heart. A member of my own staff had to sit on a couch every day and inject antibiotics into his heart because of this disease. Thank God he caught it in time and will make a full recovery.

I met a woman at an event in Poughkeepsie who came up to me with a cane. She couldn't be more than 30 years old. She was with her husband. She said:

Our whole lives have been ruined by this disease. My

husband and I were just starting our life together. We were

going to have a family. We had big plans, and now all we do

is deal with this chronic Lyme disease that I have, and I

can't get better.

There is a woman named Valerie from Westchester County who wrote to me and says:

No one listens. I hope you will listen.

Well, we are listening today, Valerie, and I urge my colleagues to listen and pass this critical bill.

This bipartisan legislation makes a landmark investment in Lyme disease and other tick-borne illnesses so that our friends and families in the Hudson Valley no longer have to suffer in silence. When folks are suffering, I guarantee you they aren't thinking, Mr. Speaker, about partisan politics.

There is no Republican or Democratic Lyme disease, and Americans expect us to work together. That is why I am proud we are doing so today. We can stand up. We can stand shoulder-to-shoulder and say the health of our communities is too important to wait. For neighbors like Alex, Valerie, the others I mentioned, and for so many others I have never met, I want you to know we are listening.

I urge my colleagues to support H.R. 4701 because our constituents deserve a government that is working for them and that steps up to the plate when they need it most.

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 4701) to provide for scientific frameworks with respect to vector-borne diseases, as amended.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and to insert extraneous materials into the Record on the bill.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise today in support of H.R. 4701, the Tick-Borne Disease Research Accountability and Transparency Act of 2014, introduced by Chris Gibson of New York.

Lyme disease is the most commonly reported vector-borne illness in the United States. Prior to 2012, the Centers for Disease Control and Prevention reported about 30,000 new cases each year in the United States, with 95 percent of those cases in 13 States concentrated in the Northeast and upper Midwest.

The Centers for Disease Control now estimates that around 300,000 people in the United States are diagnosed each year with Lyme disease, making it a substantial public health problem.

H.R. 4701 is an important bill that addresses the growing threat of Lyme disease in the United States, it prioritizes Federal research online, and related diseases, and gives patients a seat at the table. The bill would establish a working group at the Department of Health and Human Services that would prepare a report summarizing Federal activities related to Lyme disease, identifying the latest scientific advances and making recommendations to the Secretary and to Congress.

It also ensures that the Federal Government consults with patients and physicians in their work on the disease.

I would like to thank Mr. Gibson for his hard work and dedication on this issue.

I urge my colleagues to support H.R. 4701, and I reserve the balance of my time.

Mr. Speaker, I yield 4 minutes to the gentleman from New York (Mr. Gibson).

Mr. Speaker, at this time, I yield the balance of my time to the gentleman from New Jersey (Mr. Smith), who will provide our closing.

Mr. Speaker, I yield back the balance of my time.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I think we can all agree that Lyme disease is a concerning public health issue. The CDC estimates there are approximately 300,000 Lyme disease cases each year in the United States.

H.R. 4701, the Tick-Borne Disease Research Accountability and Transparency Act of 2014, creates a new working group to develop a summary of research in advances related to Lyme disease and other tick- borne diseases, monitor Federal activities, and make recommendations to the Secretary of HHS and hold annual public meetings.

I support ensuring that research in the area of Lyme disease is productive and significant. However, there are still a number of other changes that need to be made to this bill, particularly regarding appointments to and responsibilities of the working group.

Additionally, we do not want the resources needed to maintain this working group to take away from the already strained budgets of current Federal research and surveillance efforts related to Lyme disease.

At the full committee markup of H.R. 4701 in July, Chairman Upton committed to continue to work with myself and other Members to address these concerns before bringing the bill to the floor, and I am disappointed to say that that commitment wasn't honored. While I have reservations about H.R. 4701 in its current form, I would not object to considering it on suspension and advancing the bill here today, but I will continue to advocate for resolving these issues in the bill as it moves forward.

I reserve the balance of my time.

Mr. Speaker, I yield such time as he may consume to the gentleman from New York (Mr. Sean Patrick Maloney), one of the sponsors of the bill.

Mr. Speaker, I have no further speakers at this time, and I yield back the balance of my time.