What Congressional Record says about Lyme disease bill
The United States Senate is now in recess until November 14, which means nothing will happen before then regarding S. 1503, the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2015.
On September 28, five senators submitted remarks to be included in the Congressional Record regarding the bill: Richard Blumenthal (CT), Kelly Ayotte (NH), Kirsten Gillibrand (NY), Susan Collins (ME) and Mark Kirk (IL).
The senators stated why they are in support, and urged their fellow senators to join them. (Click here to ask your senators to co-sponsor this bill.)
From the Congressional Record, September 28, 2016:
LYME AND TICK-BORNE DISEASE PREVENTION, EDUCATION, AND RESEARCH ACT OF 2015
Ms. AYOTTE. Mr. President, today I wish to speak on the importance of passing legislation to address a serious issue that impacts New Hampshire, New England, and the rest of the country each year, the issue of Lyme and other tick-borne diseases.
This fall, as the leaves begin to turn and temperatures start to drop, millions of Americans will head outdoors to hike and otherwise experience the beauty of nature. In my home State of New Hampshire, hiking is one of the State’s most popular recreational activities. New Hampshire is also among the 14 States through which the Appalachian Trail runs. Stretching from Georgia to Maine, the Appalachian Trail spans nearly 2,190 miles, and is hiked annually by 2 to 3 million people.
While our attention in the Northeast usually turns to the dangers of ticks in the spring and summer months, adult blacklegged ticks, also known as deer ticks, are still active in the fall. Approximately half of these deer ticks carry Lyme disease, and they have played a leading role in our Nation’s dramatic rise in tick-borne diseases. While approximately 30,000 cases of Lyme disease are reported annually by State health departments, according to the Centers for Disease Control and Prevention CDC, the actual number of cases each year is about 300,000, making Lyme disease the most commonly reported vector-borne illness in the country. Underscoring that Lyme is no longer simply a regional problem, the CDC reports that the species of ticks that spread Lyme disease now live in 46 percent of the Nation’s counties.
That is why I am continuing to urge my colleagues to join me in supporting the bipartisan Lyme and Tick-Borne Disease Prevention, Education, and Research Act, S. 1503. Working with Senator Blumenthal, I coauthored and introduced this legislation which is designed to better coordinate the Federal Government’s response to Lyme and other tick-borne diseases by creating an advisory committee within the Department of Health and Human Services HHS. The committee established under our bill would be tasked with identifying best practices to combat tick-borne diseases and would be comprised of patients, advocates, researchers, medical professionals, and government officials. Our legislation would also require the HHS Secretary to coordinate efforts to strengthen disease surveillance and reporting, develop better diagnostic tools and tests, create a physician education program, establish epidemiological research objectives for Lyme and other tick-borne illnesses, and report to Congress on the progress of efforts to combat these devastating diseases.
The significant increase in cases of Lyme and other tick-borne diseases over the past decade is extremely troubling, and it demands a strong and coordinated effort at the Federal level. This critical legislation has been endorsed by nearly 100 Lyme and tickborne disease patient groups, along with the Appalachian Trail Conservancy.
Despite the staggering statistics, the voices of those who are living and struggling with Lyme and other tickborne diseases have not adequately been heard. Senator Blumenthal and I have put forth a commonsense, bipartisan legislative proposal that will bring greater attention to Lyme disease and give patients and their families a greater say in their care.
I ask my colleagues to cosponsor the Lyme and Tick-Borne Disease Prevention, Education, and Research Act, and I urge the Senate to follow the lead of the House by passing legislation that will help more effectively prevent, diagnosis, and treat Lyme disease.
Mr. BLUMENTHAL. Mr. President, as leaves begin to turn and temperatures begin to drop, millions of Americans will head outdoors this fall to hike. In Connecticut, hikers will flock to trails in the State’s 107 parks and 32 State forests, which together account for more than 200,000 acres.
While ticks are often thought of as spring and summer pests, ticks that carry the disease are still active in the fall. According to the Centers for Disease Control and Prevention, CDC, Lyme disease is the most commonly reported vector-borne illness in the country, with more than 300,000 people becoming infected each year. The CDC also reports that the species of ticks that spread Lyme disease now live in 46 percent of the Nation’s counties. The spread of Lyme disease, paired with a lack of action at the Federal level, has led tens of thousands of Americans to become infected, disrupting patients’ lives and placing major emotional and financial burden on families.
With this in mind, I urge my colleagues to join me in supporting the bipartisan Lyme and Tick Borne Disease Prevention, Education, and Research Act, S. 1503. The legislation is designed to better coordinate the Federal Government’s response to tick-borne diseases by creating an advisory committee within the Department of Health and Human Services, HHS, that would be tasked with identifying best practices to combat tick-borne diseases. The group would be comprised of patients, advocates, researchers, medical professionals, and government officials. The bill would also require the HHS Secretary to coordinate efforts to strengthen disease surveillance and reporting, develop better diagnostic tools and tests, create a physician-education program, establish epidemiological research objectives for Lyme and other tick-borne illnesses, and prepare regular reports to Congress on the progress of efforts to combat these devastating diseases.
The rapid rise in active Lyme and other tick-borne disease cases over the past decade demands a strong and coordinated effort at the Federal level to address the public health threat to our Nation. This critical legislation has been endorsed by hundreds of Lyme and tick-borne disease patient groups, along with the Appalachian Trail Conservancy, ATC. According to a 2014 Appalachian Trail hiker survey, 9 percent of respondents reported that they had been diagnosed with Lyme disease.
Our colleagues in the U.S. House of Representatives have already passed this critical legislation, and now it is our turn. I urge our Senate colleagues to join as cosponsors, and help pass this critical measure expeditiously. Thank you.
Mrs. GILLIBRAND. Mr. President, I rise today to speak in support of legislation to address a serious public health concern: the spread of Lyme disease and other tick-borne diseases in the United States.
In my home State of New York, there were 37,977 reported cases of Lyme disease between 2005 and 2014, one of the most heavily affected populations in the country. This disease affects hundreds of thousands of people around the Nation and is the most commonly reported vector-borne illness in the United States, with an estimated 300,000 people becoming infected each year. The species of ticks that spread Lyme disease now live in 46 percent of the Nation’s counties.
If caught early, Lyme disease can be treated with antibiotics. Unfortunately, the disease can be difficult to diagnose because its symptoms mimic the symptoms of other serious diseases and because existing diagnostic tests still have many limitations. As a result, Lyme disease often goes undetected or misdiagnosed, making effective treatment of patients more difficult. Untreated Lyme disease can be debilitating and result in severe pain and suffering.
To help address this epidemic, I urge my Senate colleagues to help pass the Lyme and Tick-Borne Disease Prevention, Education, and Research Act, S. 1503. The House of Representatives approved this legislation over a year ago, and we must now come together to pass this bill in the Senate as soon as possible.
The Lyme and Tick-Borne Disease Prevention, Education, and Research Act, would coordinate Federal efforts to address Lyme and other trick-borne diseases. It would create an advisory committee within the U.S. Department of Health and Human Services, HHS, made up of patients, advocates, researchers, health care providers, and government officials tasked with identifying best practices for combatting tick-borne diseases. It would also direct the U.S. Secretary of Health and Human Services to carry out activities coordinated across agencies to improve data collection, develop better diagnostic tests, enhance prevention and public awareness activities, and support clinical research into treatments.
The prevalence of Lyme and other tick-borne disease cases in this country demands a strong and coordinated effort at the Federal level. The Lyme and Tick-Borne Disease Prevention, Education, and Research Act is a critical step toward ending this epidemic.
I strongly encourage my colleagues in the Senate to cosponsor and help pass this legislation to improve our Federal response to tackling Lyme and other tick-borne diseases. Thank you.
Ms. COLLINS. Mr. President, today I wish to speak about the issue of Lyme and tick-borne diseases. Fall is a beautiful time of year, especially in Maine, as it is the season for hiking, hunting, and leaf-peeping. Unfortunately, fall is also tick season and a time of increased risk of Lyme disease.
Each year, 30,000 cases of Lyme disease are reported to the Centers of Disease Control and Prevention. The most recent CDC data noted that 96 percent of those cases were concentrated in just 14 States in the Upper Midwest and Northeast. Maine has one of the highest and fastest growing incident rates of the disease, with cases increasing from 225 in 2004 to 1,169 cases in 2014.
Fall is a time of heightened risk because the immature ticks, or nymphs, that fed heavily during the late spring and early summer have now molted into adults and must feed again. Although larger and easier to spot than the tiny nymphs, they are numerous and active.
Lyme disease was long thought to be a form of juvenile arthritis and was not identified as being spread by ticks until 1976. It is still considered an emerging disease and knowledge gaps remain. For example, diagnostic methods for tick-borne illnesses have not advanced as much as they should have. Consequently, the validity and accuracy of information regarding the incidence and geographic spread of the disease may be lacking. Now, another tick-borne disease called anaplasmosis is emerging, carried by the same blacklegged tick as Lyme disease and with symptoms that are similar in nature but often more severe.
The rapid spread of these diseases is alarming and makes it essential that Federal, State, and local health agencies, public health organizations, and the scientific community work together to improve prevention and detection efforts, as well as to accelerate research to address this crucial public health challenge. This is the reason why I have cosponsored the Lyme and Tick-Borne Disease Prevention, Education, and Research Act introduced by Senators BLUMENTHAL and AYOTTE, which would help ensure that necessary resources are dedicated to fighting tick-borne diseases.
Prevention and treatment are crucial because there are currently no vaccines for Lyme disease, Rocky Mountain Spotted Fever, anaplasmosis, or other tick-borne diseases. In order to mount a strong national prevention and treatment effort, the legislation would create a tick-borne diseases committee that would consist of physicians, scientists, public health leaders, health agency officials, patients, and patient advocates. This national advisory body would help bring needed focus to improve reporting methods, better diagnostic tools, and more coordinated efforts from local to Federal levels.
With individual precautions, we all can reduce our risk of Lyme disease and other tick-borne illnesses and continue to enjoy the outdoors. With a national effort, we can stop the spread of these devastating diseases and protect the health of all. I encourage my colleagues to support this legislation.
Mr. KIRK. Mr. President, today I wish to discuss a serious threat my constituents face when they travel on one of the 270 trails, spread out over 700 miles, in Illinois. Unfortunately, hikers share these trails with bacteria-carrying ticks, which can infect travelers with a variety of diseases, including Lyme disease.
For those infected, Lyme disease manifests in multiple ways, including fever, fatigue, rashes, and severe pain. Current diagnostic tests are unreliable, causing many people with the condition to be misdiagnosed. Left untreated, it can lead to even more serious and debilitating illnesses.
According to the Centers for Disease Control and Prevention, or CDC, Lyme disease is the most commonly reported vector-borne illness in the country, with an estimated 300,000 people infected each year. The CDC also reports that the species of ticks that spread Lyme disease now live in 46 percent of the Nation’s counties.
I commend Senators BLUMENTHAL and AYOTTE for introducing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act, S. 1503, and I urge my colleagues to join me as a cosponsor of this critical bill. The legislation will better coordinate the Federal Government’s response to tickborne diseases by creating an advisory committee within the Department of Health and Human Services, or HHS, to be comprised of patients, physicians, researchers, and government officials who will be tasked with identifying best scientific practices to combat tick-borne diseases. The bill requires the HHS Secretary to strengthen disease surveillance and reporting, develop better diagnostic tests, create a physician-education program, and establish epidemiological research objectives for Lyme and other tick-borne illnesses.
The prevalence of Lyme and other tick-borne disease cases in recent years demands a strong and coordinated effort at the Federal level. Now is the time to pass this critical legislation.
I i’ve had lime disease for 25 years. I am now A single mother with so custody of my daughter who is worried about how I’m going to support her and take care of her. I cannot work a full day of work without being in tremendous amount of pain as well as mentally and physically exhausted. I’m not sure what to do . I wanted to look into disability because I really don’t know how long it’s to support my child and myself. If anyone has any feedback on the situation, I would love to hear from you. Thank you, sincerely, Laura Pinto
Some articles about disability benefits for Lyme:
https://www.lymedisease.org/disability-benefits-lyme-ayeni/
https://www.lymedisease.org/ssdi/
https://www.lymedisease.org/burke-disability-lyme/
https://www.lymedisease.org/latest-issue-lyme-times-disability/
Please pass a bill to help prevent further Lyme Disease deaths and suffering.
Please help us, I have used all my money on out of pocket treatment for lyme disease babesia bartanella mycoplasma Ehrlichia heavy metal toxicity low iron hypo adrenals swelling of the brain Aspergillosis mold Coxsackie virus ect ect because insurance refused to pay for a lyme literate Doctor. I’m unable to work denied Social Security despite working all my life. We need a CURE for this pandemic.
I have chronic Lyme disease its about 4 years now of severe fatigue, bedridden, pain, emotional anxiety/ depression, lost of appetite, I’m so sick of being sick please help us please
FINALLY, it looks like the Tick Borne Diseases, are getting some of the attention which has been lacking/ignored for so long.
Means to cure the diseases, and their long lingering problems, is vital, and becoming more important each year.
Maybe some effort could also be sponsored to find ways to also eliminate (or at least reduce) the Tick Populations….
Reduce the dam deer populations!
I have had Lyme symptoms since living near Lyme CT in the 70’s. I am now 80 and was finally diagnosed 12 years ago. I have waited for government acknowledgement that Lyme exists and there is recognition of the debilitation that tick bite can bring.
For the past year (Aug 2015) I endured painful joint pain starting in my arms and elbows. I could barely lift a glassI was in so much pain. Then I finally got a referral to see a rheumatologist (Dec 2015). I was tested for rheumatoid arthritis and some other joint issues (not lyme) and everything was negative. I was actually hoping something would be positive so I would have a treatment plan. I was told it was most likely fibromyalgia. Eight months past the rheumatologist visit the pain moved into my low back and migrating into bilateral lower extremity joint pain and stiffness. The stiffness is awful. I had major depression and mood swings. My poor husband had to endure a short fused wife. I wasn’t able to handle demands on my psyche or body. Currently the pain is in both legs but more dominant in the left leg hamstring and left foot. Two weeks ago (Sept 2016) a bullseye rash shows up on my left leg along with two other rash spots on the same leg. My husband is a retired MD and I am a retired Registered Nurse looking at this rash thinking wow! The rash was 2″ in diameter. I emailed a message to my doctor with a photo of the rash. The response: probably a brown widow spider. I took myself into urgent care and that doctor said it is unlikely to be Lyme’s since there really is no Lyme’s in California . I knew I was not going to get anywhere with my HMO. The urgent care doctor ordered me 100mg doxycycline Bid for ten days. My husband and I researched as much as we could regarding Lyme’s. I realized we are in one of the most controversial disease issues. Then what? I reached out to a non HMO practitioner for help. The fear of heading into more joint pain and fatigue for possible Lyme’s is more than I can wrap my mind around. I have said over and over in this last year ” I am not who I used to be” emotionally and physically. I am an active proactive person who loves life and my show dogs. This has been limiting. Lyme’s testing will be done in the next couple weeks. It will be curious to know if I do have lyme’s. Thanks for listening!
I understand how you all feel cause I also have Lyme disease & its a horrible, disease, you go to bed one person & wake up another, it takes over your mind, body & soul! You are no longer happy, get very emotional, depressed & anxiety bad!!! Please help us all to get a permanent cure & a vacine to prevent the disease please:(((((((