Hearing of the Senate Health, Education, Labor, and Pensions Committee - Lyme Disease: A Comprehensive Approach to an Evolving Threat

Hearing

I want to start by thanking Senator Blumenthal for holding this hearing and for leading the effort in the Senate to address these horrible diseases that have afflicted too many of our loved ones.

I would also like to acknowledge and thank the advocacy and support groups from New York State -- the Tick-Borne Disease Alliance, the Empire State Lyme Disease Association, the New York City Lyme Disease Support Group, and the many support groups throughout New York State, who are working to raise awareness about tick-borne diseases.

We are here today to bring awareness of Lyme disease and to support Senate Bill S. 1381 to finally get a grip on the growing epidemic of tick-borne diseases.  From the farms of upstate New York, to the beaches on Long Island, to the parks in all five boroughs of New York City -- tick-borne diseases are a public health crisis that truly knows no boundaries.  Anyone can become a victim at any time. And it is crisis that has gone ignored for far too long.

According to the US Centers for Disease Control, Lyme disease remains the fastest growing vector-borne, infectious disease in the United States. The CDC reports 30,000 cases of Lyme disease in 2009 -- but acknowledges the actual number may be over ten times as high due to underreporting.

Another highly alarming factor in the growth of these diseases -- is their place in our blood supply. The American Red Cross has now confirmed at least 12 deaths nationwide from the tick-borne disease Babesiosis after it was transmitted by transfused blood. We need to ensure that our donor supply is thoroughly tested and free of disease to put a stop to these senseless infections and deaths.

Ending these diseases starts with prevention.  But with no vaccines to prevent Lyme disease or the co-infections, we have a long way to go, and the reality is that many people will continue to be infected each year. 

Patient outcomes for tick-borne diseases are measurably better when these diseases are caught early.  But there is disagreement about proper diagnostic protocols and a lack of awareness about these diseases.  Each of the tick-borne diseases presents us with a complicated set of symptoms that varies from person to person.  Each requires discrete testing, and possibly different treatment protocols. 

Difficulties in identifying and diagnosing these diseases then lead to more difficulties when it comes to treatment. In fact, there is no standard and wholly effective treatment. And as with all progressive diseases, the patient will get sicker the longer the disease is left untreated.

Without a 100 percent reliable diagnostic, and without a cure -- education and awareness among doctors and patients -- paired with research and heightened attention to this issue -- are absolutely essential. That's why we are here -- to hear more from those who have seen these diseases firsthand, and know what is at stake in this fight.

I want to share one story of New York family whose experience with Lyme disease is heartbreaking, but all too common. Heidi Buono and her husband Michael live in East Greenbush, New York, near Albany, with their three children. The family spent many wonderful times together hiking in the bucolic woods behind their house.

Heidi began to experience many unexplained health problems -- migraines, aches and pains and thyroid issues. She found ticks on her children frequently. The pediatrician told her not to worry about it. When her youngest daughter was 2 years old, Heidi removed an embedded tick. Within one week, her daughter was running a fever. The pediatrician said it was nothing and did not treat her.

Four years ago, Heidi's health took a turn for the worse. She slept most days, barely able to leave her bed. Heidi clung to the walls in her home just to get around. The internist tested Heidi for everything, but the results were negative. She was declared healthy, but Heidi knew something was very wrong.

She couldn't afford any additional testing, and she could not visit specialists because they would not accept her insurance. Unable to work, Heidi had to abandon her plan to return to work to help pay for her childrens' college education.

Heidi's oldest son was an honors student at Columbia High School. After the first week of his sophomore year, he became anxious, depressed, achy, and fatigued. He could not attend school. Like his mom, his blood work came back normal. He was put on antidepressants and anti-anxiety medicine. Within two days, he was having suicidal thoughts and doctors wanted to place him in a psychiatric hospital.

Finally, Heidi pleaded to have her son re-tested for tick-borne diseases. The test came back positive for Lyme and several tick- borne diseases.

Heidi's middle son has been sick since birth. He has eye problems and was diagnosed with learning disabilities. At 5 years old he asked his mother "Mom -- why can't I remember stuff?" Heidi believes he may have contracted tick-borne diseases in utero.
This family, and others just like them throughout New York State and our nation, are the reason I am a co-sponsor of S. 1381 -- the Lyme and Tick-Borne Disease Prevention, Education and Research Act.

Clearly, we need a better strategy than checking ourselves and our children for ticks. We need real investments in research to lead us to effective treatments. And we need to do a better job of educating families on the risks and emphasize prevention so they know how to protect themselves. 

Our bill is the first step by the federal government to save more lives and one day rid us of tick-borne diseases -- by taking the following measures:
Establish a Tick-Borne Disease Advisory Committee;
Streamline coordination between federal agencies and private organizations;
Coordinate increased research and development around Lyme disease;
Develop more accurate and time-sensitive diagnostic tools;
Increase public and physician education; and establish reports on Lyme disease that evaluate guidelines and research.

The time has come for us to join together, and take action to eradicate tick-borne diseases and stop the needless suffering of so many in New York and families around the country. It is time, once and for all, to take the right steps to give medical professionals and families the tools and resources they need to stop this horrible disease in its tracks, and save more lives. 

When we work together, guided by common purpose, we can make progress, and give more families better hope in the fight against these diseases. I hope you join with Senator Blumenthal and me in support of our legislation as we fight to stop this growing epidemic.

Thank you.

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