NEWS: House passes Lyme legislation; now on to the Senate
The bipartisan bill prioritizes federal research on Lyme and related diseases and gives patients, advocates and physicians a seat at the table.
From the office of Congressman Chris Gibson:
September 9, 2014
Washington, DC – Congressman Chris Gibson (NY-19) announced a major victory in the fight against Lyme disease.
Today the House passed H.R. 4701, the Tick-borne Disease Research Transparency and Accountability Act of 2014, a bill authored by Congressman Gibson.
The bipartisan legislation, which passed the House Energy & Commerce Committee in July, prioritizes federal research on Lyme and related diseases and gives patients, advocates, and physicians a seat at the table.
“Passage of this constituent-driven bill represents a real victory for Lyme sufferers and the people of Upstate New York,” said Congressman Gibson. “As Lyme becomes even more prevalent in the Hudson Valley and spreads to new regions, it is imperative that the federal government adopt a more aggressive strategy to improve detection, treatment, and prevention of these tick-borne diseases. Our legislation requires action from the research community, and it brings together stakeholders from across the Lyme community.”
H.R. 4701 forms an interagency working group consisting of federal agencies and non-federal partners, including experienced Lyme physicians and patient advocates with a broad spectrum of scientific viewpoints. The working group is tasked with ensuring coordination among federal agencies to maximize research priorities.
H.R. 4701 requires the Secretary of Health and Human Services to consult with the working group to submit a strategic plan to Congress within three years that includes benchmarks to measure progress. The plan must include a proposal for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms, infections, and co-infections.
In August 2013, the Centers for Disease Control and Prevention estimated that the number of Americans diagnosed with Lyme disease each year is approximately 300,000.
“The passage of H.R. 4701 in the House marks a turning point in a national effort to better understand and ultimately conquer these complicated tick-borne diseases,” said Christina Fisk of Clifton Park, president of the Lyme Action Network. “We owe a debt of gratitude to Congressman Gibson, who invested so much time to thoroughly understand the complex issues, and we thank him for acting on the urgent pleas of his constituency. He worked with experts from across the country to collaboratively craft an impactful and sensible bill to address a rapidly growing problem. We hope to see the bill introduced in the Senate in the near future and then become law.”
The Tick-borne Disease Research Transparency and Accountability Act is the first standalone bill addressing Lyme disease to pass the House. The bill’s cosponsors include several Members of Congress from the Northeast, including Congressmen Chris Smith (NJ-4), Sean Patrick Maloney (NY-18), Paul Tonko (NY-20), and Peter Welch (VT).
“For the past few years, I have worked with advocates from throughout New York and the United States on a bill that focuses on solutions,” said Congressman Gibson. “I want to thank these good citizens 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. I also want to thank my House colleagues for their support of this legislation. By working together, we are able to give a voice to people who are suffering.”
Awesome! It’s been a long time coming – thanks to everyone who worked so hard through the years on getting a federal Lyme bill passed – champagne for everyone, real or virtual…
Thank God this passed. I was bitten in 1987 wasn’t diagnosed until 1993 Im fighting every day to stay alive. It’s a real struggle to walk. Please continue to fight for us. Carl Burrows
Thanks to all in the US Congress who were willing to stand up for all the Lyme patients. Now try AND get the main stream doctors learn and listen to Lyme patients. I feel like I know more about Lyme then they do. That is very sad to say in this day and age. Again thank you to all.
Agree !
As a chronic Lyme sufferer myself this is such great news. Hopefully this is only the beginning and more and more people will realize that Lyme and co-diseases are real and they are horrific and scary diseases. There is no help out there for chronic long time sufferers like myself so I pray that everyone affected by Lyme can start getting the help we all need from this debilitating, life changing disease.
*Life is not so much about what you accomplish as what you overcome*
Excellent perspective, Amy.
Agreed. Great words of wisdom.
I have chronic Lyme disease and multiple co-infections and am on IV antibiotics for months now. Thank god the House passed this bill and we are finally getting some recognition and maybe some progress will be made. The CDC has made it very hard for us chronic sufferers to be treated, we have a hard time finding doctors who even believe in chronic Lyme let alone treat it….not to mention the nightmare of getting diagnosed. Let’s hope this is a big step in the right direction.
Great! Thanks so much to everyone who worked to draft this and get it passed!
Where does it go now? I guess it has to be first assigned to a Senate Committee. Please keep us updated. I spread the message far and wide on Monday to drum up support. I want to act to rally people as soon as we have info on the next step. Thank you!
My brother died from Lymes. He was misdiagnosed for many years. He had 6 blood tests & 2 spinal taps for Lymes. All the testing came back erroneously negative.
A more accurate test for Lymes needs to be enforced like the testing IGenix Labs uses in California.
I can’t believe it! I am so grateful, especially for those who will suffer in the future from Lyme and may have a chance for recovery. I have Lyme in my nervous system, and my nerve endings have burned everyday, 24/7 for 5 yrs. & 9 mos. now. I am thankful to the Jemsek Specialty clinic in D.C. for helping my body to fight it, for keeping my pain bearable and for helping to keep me alive. I even went to Mayo Clinic in Jacksonville, and they couldn’t diagnose it! There was nothing worse than having doctors smile at me and think that I don’t know what I’m talking about or that I don’t even have Lyme! Maybe now they’ll be forced to recognize it exits.
I reallllly pray tht they will stop calling this a tick borne disease!!! It is so misleading!! Lyme can be contracted by many many other things than ticks. Even person to person!!! This has to be addressed!!!
I am SO THANKFUL that this has been put into motion! My daughter has been suffering for over 5 years, having tests and surgeries…with doctors saying, ultimately, that there is ‘nothing wrong..it’s all in your head. Let’s put you on anxiety meds’ (we didn’t do that). ONWARD!! Count us in as supporters
I’m 28 & my battle with CNS Lyme Disease starting over, that is cause finally found LLMD who wrote up plan. Tons of docs told us Conversion even w/Western Blot all +. Thank u 4 not caving in that trap. My best 4 u & her.
what needs to be done now? support…support…
To Congressman Chris Smith & everyone who worked tirelessly to make this happen, thank you so much more than you can know! I received update in my email not long ago and was brought to this site. I am in tears because I am so thankful. Continue the good work!
I hope they make changes to the IDSA guidelines with regards to bands…! My daughter had 6 IgM bands for 15 years, and was told she didn’t have lyme by ID dr’s, neurologists, our pediatrician, an endocrinologist, an orthopedist – we saw them all… It was ABL (anything but lyme)…simply because she did not have 5 or more Igg bands….In year 13, we found our llmd. Up to then, the doctors said it wasn’t lyme. She was textbook perfect for symptoms and had two tick bites. From age four on, she’s lived a life of Lyme…She is now in tertiary stage lyme with encephalopathy of the brain (with severe hypoperfusion and hypometabolism in all her lobes, basal ganglia and cerebellum diagnosed in a brain spect, pet scan and pet MRI). She also a positive blood culture with Adv Labs, and the Cunningham panel to determine the cause of encephalopathy.It is infection-induced automimmune encephalopathy from Lyme…she has Hashimoto’s as well…but it is faux Hashi’s from lyme…it’s moleculer mimicry. The doctors told us it wasn’t lyme, especially the Infectious disease doctors….Her neuropsyche report before finding our LLMD, was so bad, the evaluator said she couldn’t interpret the results because she tested worst than an alzheimer’s patient so “she must be faking it.” We didn’t have the pet scan and brain spect yet, so we didn’t know she had hypometabolism which is seen in alzheimer’s and dementia patients. The neurologist, who this neuropsyche evaluator worked for (she reminded me of the Macy’s psychiatrist in “Miracle on 34th Street” because she kept playing with her eyebrow and had a tic), turned his back on me, and he looked at my daughter and said “are you planning to go to college?” She said “yes, I hope I’m well enough to go.” He said “go as far away from your mother as you can, so she can stop taking you to doctors. There’s nothing wrong with you.” “That neurologist should have his medical license taken away!”said the head of neurology, down at a big teaching hospital in nyc, who diagnosed the encephalopathy. However, even with 13 yrs worth of Quest positive Igm tests, and the Igenex tests ordered by our LLMD that were not only Igm positive with 6 bands, Bartonella and babesia duncani, the neurologist said it wasn’t lyme simply because their hospital lab couldn’t produce any bands except a 41 Igg band…I couldn’t believe it myself, since my daughter never tested negative…. He blamed the hashimoto’s for causing the encephalopathy and said if we didn’t admit my daughter right then and there to do massive IV steroids, that the inflammation my daughter had would start causing seizures, stroke-like symptoms, psychosis, hallucinations, paralysis and she’d wind up in the ER in a coma…he was shocked she hadn’t already with how bad her brain was…. When I told our llmd, he laughed and said “tell him you can’t wait.” I must admit I was frightened…but our LLMD said once we treat the lyme with IV ceftiaxone, the hashi’s will remit, because it’s not true Hashi’s… My daughter has been on IV for 7 months now… The insurance committed to paying 6 months of IV;however, we started three months after the approval, because I had to have surgery and there were major complications. They wouldn’t tack on the extra three months… So we’ve had to self-pay $4000 a month for IV since July. We chose to pay for medication over the mortgage, so we are fighting foreclosure now. I am on my 6th and last appeal. The good news is that our lyme dr was right…the anti-thyroid peroxidase antibodies causing the Hashimoto’s, went from 650 before IV and are now down to 84 as of last month! Norm is below 5…it’s incredible. My daughter, who had deferred college last year because she could barely move off the couch, went blind in one of her eyes three times, had head and eye pressure so severe, she thought her brain would crush, her skin was so sensitive to the touch as was her scalp, she had hair loss and was light and sound sensitive, and her cognition was awful…Her neuropsyche tests (from an ILADS neuropsychologist who tests patients with encephalopathy) corroborated the imaging studies…she had 23% ability to process information and only 37% working memory…She felt so good after starting IV in April that she started college in September. The dr wrote the insurance and told them that if she stops the IV prematurely, she will relapse and the encephalopathy might become irreversible. That is the sole reason for the IV to reverse the damage in the brain. Our last appeal over the summer was done by an ID dr. I had written a five page letter to the external reviewer requesting they consider a different standard-setter’s guidelines, in particular ILADS, and that I wanted an ILADS dr to review our appeal. I have now come to find out the external review would not consider the parent or patient’s input only; medical records. The result? The ID dr’s whose only mission was to consider getting the IV extended, came back and said Igenex is not an FDA approved lab. They have false positives on all their babesia tests, and therefore, she doesn’t have lyme, never did and doesn’t have any infection! He didn’t address the positive results from Quest and most certainly didn’t address the imaging studies of all things! Every article and abstract I sent, I’m sure he didn’t read. He picked one by Dr Stricker and said it was unscientific. He said our llmd had too many diagnoses and that since she doesnt have lyme (he reiterated it three times in the denial), that this medication was harming her. He didn’t suggest what was causing the encephalopathy or how the medication could harm her. I had addressed all that upfront when I sent in 300 pages to the external reviewer (they did a page count!). I talked about how she has nursing visits twice a week for dressing changes; has biweekly blood draws to check her liver and other functions; has a monthly gallbladder u/s and is on gallbladder meds prophylactically. All was ignored. So this last appeal now will again be through a different external reviewer (who will get to see the ID dr’s denial). They were hired by my husband’s company, because they agreed the last appeal was horrible. They took our call and agreed to let an ILADS dr review this last appeal.I was ecstatic. I gave them the President of ILADS name and number, because I knew it would be difficult to find a longstanding member who agrees with IV treatment…there are some members who are just chiropractors who do not treat lyme, but treat lyme patients who have headaches for example. The next thing I know, I get an email from the company saying per the Affordable Care Act, we can have a one panel review with a neutral dr, who will reach out to both an ilads dr and an ID DR!!!!! (AGAIN!)…the last denial clearly said that Ilads guidelines are not acceptable and only the CDC/IDSA guidelines would be used to determine further treatment, and these guidelines are widely accepted by neurologists as well as everyone in the medical community domestically and internationally. So whose side do you think this neutral dr will fall on…I smell yet another denial…I think it’s time for a civil suit and hopefully I can try and use the New Mexico case as precedence… I have extreme appeal-fatigue having been at this since 2012… I think this last appeal is just a CYA appeal sadly.