H.R. 1179 would provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.
Detailed Summary
Lyme and Tick-Borne Diseases Prevention, Education, and Research Act of 2009 - Requires the Secretary of Health and Human Services to establish the Tick-Borne Diseases Advisory Committee. Requires the Committee to advise the Secretary and the Assistant Secretary for Health regarding how officials can: (1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases; (2) identify opportunities to coordinate efforts with other federal agencies and private organizations addressing such diseases; (3) ensure interagency coordination and communication with constituency groups; (4) ensure that a broad spectrum of scientific viewpoints is represented in public heath policy decisions and that information disseminated to the public and physicians is balanced; and (5) advise relevant federal agencies on priorities related to Lyme and tick-borne diseases.
Requires the Secretary, acting through the appropriate federal officials, to provide for the coordination of all federal programs and activities related to Lyme and other tick-borne diseases and the conduct or support of specified activities, including: (1) developing sensitive and accurate diagnostic tools and tests, (2) improving the efficient utilization of diagnostic testing currently available; (3) accurately determining the prevalence of such diseases; (4) evaluating the feasibility of creating a national uniform reporting system; (5) providing and promoting access to a clearinghouse of information on such diseases; (6) increasing public education related to such diseases; (7) creating a physician education program; (8) establishing epidemiological research objectives to determine the long term course of illness for Lyme disease; and (9) determining the effectiveness of different treatment modalities by establishing treatment outcome objectives
Status of the Legislation
Latest Major Action: 2/25/2009: Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.
Points in Favor
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Points Against
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Visitor Comments
Kathie Scott
March 3, 2009, 8:05pm (report abuse)Gladstone,MI
This legislation is extremely important. I am a successfully 95% recovered Lyme patient after three years on antibiotics. I was extremely fortunate to catch it early, and have access to great treatment, which did not follow the CDC guidlines.
With nationalized health care, Lyme patients will be at the mercy of ignorant doctors who will not be able to treat the deadly disease aggressively. Please pass legislation that allows for research so that the true nature of this disease can be better understood by all of the health care industry.
CeeJay
March 3, 2009, 8:34pm (report abuse)I am watching my daughter wither away in pain from this horrible disease. She can't afford to get treatment. She is a young mother and this is unbearable to watch. We are feeling helpless and hopeless.
Betty Holmes
March 3, 2009, 10:11pm (report abuse)My daughter has had this disease for over 10 years. She went to 11 doctors before she could get one to even acknowledge that she could have Lyme. I was with her when one neurologist threw us out of her office! If the first one had taken her seriously, a simple course of antibiotics could have stopped this disease in it's tracks. But it took so long, it's now chronic! And all this took place in Connecticut which is supposed to be Lyme literate!
I can't emphasize enough how important this bill is. Please help.
Betty Nanney
March 4, 2009, 9:46am (report abuse)Both my grandchildren have Lyme disease and have been getting treatment, but the expense is so great we may no longer be able to continue. Even after 7 months on treatment they are only better but not cured and will need treatment for several more years. Help us help them by passing this bill.
Connie Irby
March 4, 2009, 10:56am (report abuse)Dear Congress, I have friends who's 2 children have gone from healthy athletes, top notch students who served their community to desperate seekers of treatment for a disease that is real! Our own city of Memphis Tennessee did not offer the treatment that could help this family! PLEASE help this family and many others by passing this bill! It is just a matter of time before many of you will know families in your own state and communities facing this horrible Lymes! Thanks for your service and consideration! Connie Irby, Germantown, Tennessee
David Wright
March 4, 2009, 12:08pm (report abuse)Dear Congress, Im presently in the health profession myself and have been to eight specialists who all miss diagnosing me when this all started. I have become so sick and weak that am selling my practice of nine years and am seeking soc.sec. If my doctors had been educated and had an accurate way of testing for lyme disease early intervention may have cured me, but now it has become chronic and I will probably suffer with this awful disease for years to come. My understanding is that Conn. Rhode Island, Maryland, parts of Penn. and NY are considered epidemic.I don't understand how this can be going on so long without action being taken. I have talked with many people who are now suffering with chronic lyme disease which has ruined their lives. Please vote yes on this bill to help us. David Wright, Central NY
Jana West
March 4, 2009, 1:02pm (report abuse)Dear Congress, I have several friends who suffer from Lyme\\\'s disease. It has changed their life dramatically -- physically, mentally, and financially. We have to pass this bill to help these families. Please vote YES to this bill!
Jana West
Germantown, Tn.
Mabel Morton
March 4, 2009, 1:44pm (report abuse)Please pass and fund this bill. I have a young collge nursing student and her mother who are terribly ill with this disease. There are very few treatment centers and physicians who know how to identify and treat this illness. Both have been very productive and gracious women in our community and now are unable to work or continue with school. Please help them and many other Americans.
Cassie Froemming
March 4, 2009, 2:41pm (report abuse)I had a deer tick; 3 weeks after that, I went to urgent care; no tests were given but I was given antibiotics for "Peace of mind". Two months later, I had strange and new symptoms along with a positve Lyme test. Went on antibiotics again. I am a teacher; one of my students also had my same symptoms. It turned out she had Lyme. I recommended this same doctor to a colleague's husband, he had Lyme as well. Meanwhile, I thought I was in recovery, but I ended up relapsing, with Late Stage Chronic Lyme. Ironically, I wasdiagnosed by the same Lyme literate doctor that these other individuals were going to. All three of us continue to undergo treatment, to fight this "silent" battle.I feel a strong urge to break the silence about a disease that nobody should ever have to endure. It is only when you have Lyme disease, that you can tell one Ly-ME from another, even though this disease is under our skin. I urge you to fund this bill, before I can tell Lyme is under YOUR skin.
DEANNA STEPHENS
March 4, 2009, 5:34pm (report abuse)I HAVE A DEAR FRIEND WHO\'S DAUGHTER HAS BEEN FIGHTING THIS FOR 3 YEARS...THEIR LIFE HAS TOTALLY BEEN DISTROYED... THEY HAVE HAD TO MOVE TO KANSAS CITY WHILE THE FATHER STAYS HOME IN ALABAMA TO WORK TO KEEP THEIR INSURANCE. THANK GOD FOR INSURANCE BUT THE INSURANCE COMPANIES TRY HARD TO DICTATE THE TREATMENT THEY THINK IS NECESSARY AND EVEN THOUGH THEY HAVE NO MEDICAL BACKGROUND.... THINGS REALLY NEED TO BE CHANGED ABOUT LYMES DISEASE...MORE RESEARCH AND CLASSIFYING IT AS A DISEASE....IT IS SAD TO SEE FAMILIES HAVE TO WATCH AND WAIT TO SEE WHAT THEY INSURANCE COMPANIES WANT TO PAY FOR WHILE THEIR CHILD\'S HEALTH DETERIATES EVEN FARTHER...I NEVER KNEW THAT THIS AFFECTS AS MANY FAMILIES AS IT DOES...IF YOU WOULD LIKE YOU CAN READ MY FRIENDS CARINGBRIDGE SITE. GO TO CARINGBRIDGE.ORG AND TYPE IN KRYMSONFEAZELL IN THE SPACE... YOU WILL SEE THAT DAILY STRUGGLES THAT FAMILIES HAVE TO DEAL WITH.... THANKS FOR YOUR TIME.....
Mary Trumble
March 4, 2009, 6:28pm (report abuse)I had a wonderful, intelligent nursing student who had to drop out of school due to having to move to get treatment for Chronic Lyme. This disease is destroying her life, and her body, and the family's financial resources, (which were good prior to this needed treatment). Please vote yes and pass and fund this bill! Persons with Chronic Lyme are growing in numbers due to many physicians not knowing the proper protocol to stop it from turning from a treatable disease into this dread disease with nightmare effects on the whole family. MANY people who have received this disease by NO FAULT OF THEIR OWN are depending on YOU!
Debbie Oliver
March 4, 2009, 8:34pm (report abuse)We have several friend whose children have been suffering with this disease for years!! They are sooooo sick.My hearts breaks for them and to see them suffer is un called for. They have given up $$$ ( $150,000 and more) and been away from their families to get medical attention in another city for months and into years. Please pass this bill.
Mark
March 5, 2009, 8:40am (report abuse)Though I do not have this disease, I have a friend that does. She tells me the struggle that she goes through having it and how doctors are no help in resolving it. I just do not understand why this is not taken serious. What if we just ignore heart disease, cancer, and etc. Why isn't this disease not take seriously at all levels? Members of Congress should see this as a no brainer and vote "YES". Stop spending money on poke that no one cares about and do something right for a change.
Denise McCoy
March 5, 2009, 10:09am (report abuse)I do not have this disease, but I do know of people that do. This absolutely has to be taken serious as too many once healthy and vibrant people are withering away because the disease is not recognized and taken serious. It is insane and incredibly stupid to sit by and act as if this disease does not exist. I agree, Congress needs to vote "Yes" on this instead of some of the rather ridiculous things they are spending money on.
Tamara Snyder
March 5, 2009, 7:33pm (report abuse)We have friends from college whose 2 children are fighting Lyme disease. Their lives have been totally changed and they need all the support they can get, with help for insurance issues as well as research to help stop this terrifying disease.
Carey Mayfield
March 5, 2009, 7:34pm (report abuse)I have never requested a bill be passed before but this is just too important to overlook! Please pass this bill. My wonderful friends have 2 children who were stricken and misdiagnosed 2 years ago. If caught early they may have been spared this horrible journey. How can this epedimic be ignored? Why? How many more must suffer. Please take the time to read these blogs. People are in pain and there is something Congress can do. Please please pass this bill. Thank you for your time.
Tammy Crisp
March 6, 2009, 7:28pm (report abuse)I was finally dx with babeosis and lyme in July 2008 after many other dx over the years I did 2 oral abx tx and one month of IV. Since then My pcp tells me I have "post lyme" a rhuematologist tells me I have "fibromyalgia" and the infectious disease specialist says," I am optimistic things will be looking up for you in the future" WHAT!? please explain Will someone make up their mind? WE REALLY NEED HELP!!! I have been out of work since November and am tired of being at the mercy of doctors that are only willing to treat their patients based on testing that has been proven not to be accurate!!! These doctors seem like they are not willing to make a clinical dx based on all symptoms presented by their patients not by the tests that have been proven to be inaccurate. I Say "it can be worse", but how can it get better if doctors aren't willing to think outside the box?. Please pass this BILL
Linda King
March 7, 2009, 4:39am (report abuse)I don't know how long I've had this disease...I was diagnosed with 'fibromyalgia' and 'chronic fatique' over 15 years ago before I finally found a doctor who figured out it was chronic lyme. I struggle to continue to work at least part time, though it's very hard. My life is a shadow of what it used to be. We have struggled against the insurance company for years to get the right treatment; their only interest is in keeping my medical costs down, not in getting me well. We desperately need an unbiased and realistic analysis of Lyme diagnosis and treatment protocols. And FUNDING for research to find a cure. As Mark said, if this were cancer or heart disease, it wouldn't be ignored as it is now. Yet millions of otherwise very productive, healthy people have to live broken lives on the margins because funding cannot be found to do the research necessary to find a solution. Please help!
Sharin Blair-Castro
March 8, 2009, 11:27pm (report abuse)I have been fighting this dibilitating disease for 5 years now. I was misdiagosed with rheumatoid arthritis in the beginning and given drugs to suppress my immune system and the lyme bacteria spread all over my body. I went from being a healthy working mother of 2 to someone who could not even open my hands to brush my daughters hair. The doctors on the west coast have so little education and knowledge about the disease. I have spent thousands of dollars trying to get well with no assistance from the insurance companies. Please help the thousands of people suffering from this horrible disease!
Dolores Blair
March 9, 2009, 12:36am (report abuse)There are no words to express how important it is to have chronic Lyme disease stopped. The money, suffering and having to deal with doctors who maintain there is no such disease is almost unbearable. Help is needed NOW!
Stephanie Nichols
March 11, 2009, 11:30am (report abuse)PLEASE HELP!!!!!
Stacy Taylor Hultman
March 11, 2009, 2:14pm (report abuse)HR 1179, The Lyme & Tick-Borne Diseases Prevention, Education & Research Act of 2009
Please research the importance and value of life. More importantly, look at the reason and promises insurance companies are making. I think Lyme disease should be considered as the global health problem as it is, making lots and lots of people losing their health, hope, lives and families. There really is need for lots of serious research of the disease, testing and treatments, which also should be brought to light and attention of people everywhere. It is difficult and tragic enough to be ill, without being misdiagnosed or ill treated. I am signing this petition in hope of making a difference!
Sincerely, Stacy Hultman
kelly nanney
March 12, 2009, 8:06am (report abuse)Please on behalf of our 2 children and many others suffering with this debilitating disease. Please support this bill so that more research and better testing can allow for quicker diagnosis and treatments.
Pattie Dingeldein
March 13, 2009, 5:30pm (report abuse)Please support this bill as the funding for increased research and care are vital to continued understanding of tick born disease. Our family of five became ill with Lyme, Bartonella, and Rocky Mountain Fever after exposure to deer ticks while camping. Two members are now on long term IV antibiotics and the others are on orals. This devastating disease continues to spread across America. Will you be next? Vote Yes.
Candice Feazell
March 13, 2009, 5:45pm (report abuse)I have a daughter with Lyme . We desperately need to see this bill go though. Education is the key ! our daughter has been sick since she was 9 years old and will soon have her 13th birthday. If local Dr.'s had been educated as well as us as parents we could have prevented her from missing such a large portion of her life ! We must change CDC guidelines, do research and educate the medical community on the DANGERS of LYME. How many children or adults for that matter have to suffer before we stand together and change things. For my daughter and others like her lets get this bill passed and try to see some change !!!
bucky
March 13, 2009, 7:32pm (report abuse)DEAR CONGRESS, PLEASE DO WHATEVER IT TAKES TO GET THIS BILL MOVING INTO ACTIONS. SO MANY PEOPLE ARE BEING MISDIAGNOSED.
Ginger
March 13, 2009, 10:25pm (report abuse)Please vote yes for the Lyme disease to help many who are suffering with it.
glenda oden
March 13, 2009, 11:53pm (report abuse)Please vote yes on this Bill.This is so important to so many people.Lymes is a very bad thing and it is making alot of people suffer.Please help to stop Lymes before it can damage more peoples lives.May God Bless you for your efforts.
morgan
March 14, 2009, 12:21pm (report abuse)Seeing the mental and physical anguish that this disease can cause is enough to persuade anyone to vote in favor of this bill. PASS IT NOW!
peggy carlton
March 25, 2009, 10:29am (report abuse)please give attention to this bill! lyme disease needs attention and awareness to save lives! vote yes to this bill!!
Michael Seger
March 25, 2009, 11:44am (report abuse)This disease needs to be researched and acknowledged as a global health concern. Many of our country's leading doctors are ignorant of this disease. Most people with this disease are unaware due to being misdiagnosed with other diseases. This disease is devastating to all who obtain it.
gay allgood
March 25, 2009, 7:07pm (report abuse)Please say yes to this bill. This disease is so devastating, and many have suffered.
John Brian
April 1, 2009, 2:52pm (report abuse)Both my wife and daughter have this disease. The effects have destroyed their quality of life and caused pain and suffering that has caused them to lose hope in it being cured.
Please pass this Bil and give them the hope that they need to continue the fight against Lyme.
Kathryn Abernathy
April 3, 2009, 1:12am (report abuse)For over 8 years I took my daughter to local pediatricians for round red rashes (that only went away while on antibiotics, joint pain and fatique. I would ask about Lyme - and the reply was "we don't have Lyme in Tn". WRONG! If she had been treated correctly then, she would not have spent the lastll 8 years with increasing symptoms and the last 18 months at home, missing school, and taking over 100 pills a day. She is recovering - but the emotional, physical and financial costs are staggering. We had to go to the North East to finally get diagnosed and treated. The medical community is really letting us down - due to their ignorance and lack of intelligent curiosity when it comes to hard-to-diagnose cases. Education is the key to ending this "silent epidemic". Please get the bill passed so that other families won't have to go through the heartbreak and diffculties we are going through.
David Cummines
July 10, 2009, 8:05pm (report abuse)I was dianosed with lyme and then RMS Fever with poor lagcorp blood test. Treated for 4wks then suposedly cured. From that time to 4months later I became very ill untill I got to a Lyme Dr..I'm getting better slowly but surely. I truely believe the later Dr. has saved my life.The IDSA 4wk protocol left me for dead. Thank God for the Dr.'s who see cronic lyme and treat it.Please pass this bill and help continue to save my life as well as thousands of others with Lyme.
Mark H.
July 29, 2009, 6:20pm (report abuse)I hope this legislation passes. So for those of you who have the obligation to vote on H.R. 1179 PLEASE vote YES
I am a suffering chronic Lyme Disease patient. Who was misdiagnosed for 4 year from when I had the Bell's Paisley. By the time I was properly diagnosed It was completely bed ridden, and could not even do daily functions, such as bath or eat. I had to go to Wilton Ct. to find a doctor who knew enough to run the proper test on me. If I had gone another 4 months I would have died from this terrible disease. It is very important that doctors are ordered to learn about Lyme, and know how to treat it. If I was diagnosed early I would not be in the state I am in now. Which is unable to work, or take care of myself, I can't even think about going on a vacation, because it is completely impossible for me to even leave my house. This Disease has distorted my life and alienated my children, and friends from me because I am so sick all the time.
Please look for my next post
mark H.
July 29, 2009, 6:22pm (report abuse)I did not have health insurance when I first got sick, then I tried for years to get health insurance and kept getting turned down for preexisting condition. So I had it spend my life's savings and all of my of retirement to the sum of $130,000.00. Now I am unable to work and completely out of money with medical bills piling up. The only hope I have is that the law's change for Lyme disease and the come up with a better treatment. But the way government works it doesn't look like it will be any time soon. So I have to suffer day after day in excruciating pain that is so intense that beads of sweat roll off of my forehead, and make me feel like vomiting. which makes it so my stomach is so upset that I can't hold down food. This disease even with treatment is still slowly killing me. The insanity that is associated with the pain is bound it put anyone in the hut house.
Please look for my next post
Mark H.
July 29, 2009, 6:28pm (report abuse)So please every one call the State House and tell them to past H.R. 1179. So others don't get undiagnosed or misdiagnosed and have to suffer like I do. By the way I am only 55 and have no idea how I will live with no money or a way to make any for the rest of my life because of Lyme Disease. I am so happy with the medical profession I could just laugh. HA HA. What a joke. I thought it was a docotrs job to find out what is wrong with a patient if they did not know. Not for the patient to have to find out them selves. One last thing. I like to know why doctors still get paid for when they don't know what is wrong with you, and run up your bill by runing all the test in the world and in the end look you in the eye and say "I don't know whats wrong with you". I my line of work I didn't get paid if I didn't know something. So we should all get together and refuse to pay our medical bills if the doctors don't know what wrong. WHO"S WITH ME ON THIS? elliot274@hotmail.com
Kristen N
August 10, 2009, 4:02pm (report abuse)I am in Central Virginia, where Lyme is growing, yet the doctors don't realize it. They are following protocols and guidelines that are not back by the hard evidence and research. Both me and my daughter have had Lyme for 3 months. My Lyme killed my unborn (4th child) baby this past month because my doctor wasn't aware of it's prevalence or risks or even symptoms!!!
We are now fighting to be treated effectively as we were lucky enough to catch the disease early. However, none of our doctors can or will treat us with the meds we need! The evidence is out there! We need to be treated with what works. We need to be on antibiotics for more than 3 weeks! We need to be taken seriously. Doctors need to make clinical diagnoses based on symptoms and evidence, not just the highly unreliable blood tests!
Say yes to H.R. 1179!!!!
mccall
September 3, 2009, 9:44am (report abuse)After watching Congress hearing on this disease in 1994, I am appalled in the United States Government. Here we sit over 15 years ago with this disease. No change! The disease count is rising. Its time to be a catalyst for change in the face of this disease. Do the right thing and pass this bill.
sarah middleton (UK)
September 4, 2009, 11:46am (report abuse)At least in the UK chronic fatigue is recognised as past possible Lyme infection, especially where the characteristic rash is present. We can get metronidazole (flagyl and clindomycin). Read Dr Scott Taylor. I was a horse rider who suddenly became ill 12 years ago with a transient rash and was never ever to return to full health. I suffer relapses of chronic fatigue and realise that the part of Kent (UK) I lived in was rife with the tick borne disease (Borellia, which is like a syphillitic spirochete). I don't understand how it can be so expensive to treat. It is only a sulfonamide.....
ssnyder
September 17, 2009, 4:14pm (report abuse)I have this disease and now believe I have had it since childhood. A surgery in recent years caused it to come out of dormancy. I have known cancer sufferers who suffered less than what I have in the 2 years since my surgery. The rate at which Lymes Disease is spreading is simply too significant to ignore any longer! Please help the human race by taking this disease seriously WASHINGTON!
LizG
(logged in user) September 25, 2009, 9:39pm (report abuse)I am 38 years old, just diagnosed with Lymes and very angry that a correct blood test 20 years ago could of changed my life for the better. At 17, I was very athletic but than I became very sick -diagnosed as epstein barr. After my (epstein Barr???) I have been to numerous specialists all to find out that nothing is wrong with me. And was told this was all in head.I cried. I suffered with panic attacks, joint pain, brain fogs, numbness, depression, etc and was not getting any better just worse as I grew older. At the age of 30 - I was diagnosed with Fibromyalgia. No meds ever helped and I still was not getting any better. After the birth of my son - My symtoms were magnified!!! I felt the worst I ever did and everyday I worried - how am I going to take care of this child. God carried me through it!! A Friend advised me to see a lymes specialist-tested positive have lymes!! most likely for the last 20 years. At least now I can be treated and have hope that I will get better!!
Tom Savage
September 30, 2009, 4:54pm (report abuse)HELP!!!!