Thursday, June 27, 2013

Blumenthal Chairs Senate Hearing In State On Lyme Disease Prevention

Blumenthal Chairs Senate Hearing In State On Lyme Disease Prevention, Hears From Senate Colleague, Patients And Experts

Read the testimony from our panel of patients and experts here.

(Hartford, Conn.) – Today, Senator Richard Blumenthal (D-Conn.) chaired a U.S. Senate field hearing on the federal response to Lyme disease in his capacity as a member of the U.S. Senate Committee on Health, Education, Labor, and Pensions. This hearing, which was widely attended by patients, researchers, and health care providers from the northeast, explored next steps the federal government must take to combat Lyme disease, and how the patient perspective can assist in this effort.

Today’s field hearing emphasized the importance of putting politics aside and bringing all stakeholders together in the fight against Lyme,” said Blumenthal who has been a leader in the fight against Lyme disease throughout his career and a strong advocate for patients with the disease. He introduced the bipartisan Lyme and Tick-Borne Disease Prevention, Education, and Research Act (S. 1381) during his first year as a U.S. Senator, legislation that would raise awareness about Lyme disease, support diagnostic research, and provide more resources to fight the illness

Blumenthal added, “Lyme disease is a pervasive and pernicious public health disaster that is aggressively spreading to other regions of the country. This hearing further underscored the urgent need for a strong national initiative to combat Lyme disease. Today there was strong consensus that the nation must improve reporting of Lyme cases and develop better diagnostic tools. Inadequate diagnosis and reporting cause devastating damage to countless individuals every day. The disease has reached epidemic proportions, and a national advisory body that gives patients a voice and a seat at the table with policymakers, scientists, researchers and others is imperative to better prevent and treat this disease. I will continue to fight for a bill that will establish such a body, along with other reforms.”  

The hearing included three panels. Senator Kirsten Gillibrand (D-N.Y.) – a powerful voice in the fight against Lyme disease –testified on the first panel. Senator Gillibrand provided her perspective on the actions that are needed to fight Lyme disease as a legislator representing the state of New York – a state that has one of the highest incidences of Lyme disease in the country.  

“Summer is in full swing, and there is nothing better than enjoying the weather outside with friends and family. But the joy of a summer day can too easily turn deadly from Lyme disease that's taken too many of our loved ones,” said Gillibrand. “It's time once and for all to take the right steps to prevent this horrible disease. We need to do more than check our kids for ticks when they come in from playing. We must invest in better research, educate families on the risks and emphasize prevention, and improve treatment strategies. This bill would develop better tools for diagnosing and reporting Lyme disease, and ensure doctors are better equipped to diagnose and treat those who become infected.”

Three patients testified on the second panel – Mark Hopwood of Trumbull, Dwight Harris of Burlington, and Katy Reid of Ridgefield. They discussed their experience as Lyme disease patients and the need for a patient voice in the prevention, research, and treatment discussion. 

Three Lyme disease experts testified on the third panel – Dr. Kirby Stafford, a medical-veterinary entomologist with the Connecticut Agricultural Experiment Station who is an expert on controlling the blacklegged tick that transmit the agents of Lyme disease, Dr. Amiram Katz, an assistant clinical professor of neurology at the Yale University School of Medicine who specializes in the treatment of Lyme disease, and Dr. Joann Petrini, the Director of Clinical Outcomes and Health Services Research in the Department of Medical Education and Research at Western Connecticut Health Network and an integral member of the Lyme Disease Registry Team.

Dr. Stafford spoke about the prevalence of tick-borne illness and the need for better prevention efforts. Dr. Katz spoke about different clinical manifestations of Lyme, the challenges posed by long-term Lyme symptoms, and the need to remain open-minded in considering how to treat the disease. And finally, Dr. Petrini spoke about ongoing research efforts and the need for patient-centered, comprehensive investigations into Lyme disease.

See the source, other links, and contact information:

1 comment:

  1. I wrote to Senator Blumenthal...

    Dear Senator Blumenthal,

    Thank you for your tireless work on Lyme disease. I have been fighting it for ten years. I have paid out of pocket nearly $100,000 and have been forced into early retirement.

    I was a very successful computer book author for 20 years. Then, I came down with Lyme. Once infected, I could no longer type or focus the way necessary for writing books. That was at age 55. So, I then returned to school and earned a Masters degree in psychotherapy. Cost:$53,000. Once Lyme disease worked its way into my nervous system, however, sitting down long enough to practice psychotherapy became too difficult. My retraining was for nought.

    I have to pay out of pocket for my IV drugs, tubing, syringes, drip bags, and so on. Doctor appts are $300-$900, depending on the doctor. Now I have Parkinson's presentation. Doing daily activities is more difficult than it was in years past. I applied for SSDI and receive that. Still, I spent my retirement nest-egg on medical wtreatment. I will have to sell my house and scale down. If I had been treated for the disease early and agressively, I might be in better condition now. However, Blue Shield pulled the plug on My IV treatments after six months, despite my doctor's protest. I am sure you have heard many similar stories.

    Please keep up your good work pressuring IDSA for fairness, introducing bills, and being a champion for those of us who have Lyme and the many thousands who WILL be infected in the future. The nation must come to realize that this is a silent epidemic. We need to finance research, develop better diagnostic tests, and devise better treatments. We did this for HIV/AIDS, and the number of sick was significantly fewer (in the US). Why can't we do this for Lyme disease?

    Bob Cowart
    Berkeley, CA
    Lyme Blog:


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