LYME SCI: Re-cap of New York’s Lyme disease hearing
On August 29, the New York State Senate’s Task Force on Lyme and Tick-borne Diseases held a public hearing, with participation from many stakeholders. Public health officials, scientists, patients, and doctors from IDSA and ILADS all addressed the committee hearing, which was streamed live to a national audience.
Senator Sue Serino, who chairs the Tick-borne Disease (TBD) Task Force, along with Senator Kemp Hannon, who chairs the Senate Standing Committee on Health, did a fantastic job of moderating the hearing. Senator Serino described how her own child suffers debilitating symptoms after being bitten by a tick and her personal desire to improve care for Lyme patients.
State Health Commissioner Howard Zucker told the senators that this year, there are fewer deer ticks and fewer reported cases of Lyme disease in the state. Senator Serino questioned that assertion, wondering whether the number of illnesses is actually down or if there’s underreporting and misdiagnoses.
Other highlights
Dr. Steven Bock, a Hudson Valley physician who is Secretary of the ILADS Board of Directors, explained the two-tier test for Lyme and why it misses about half of all Lyme disease cases. He also told the story of his 9-year-old daughter, who was hospitalized with neurological damage, including loss of vision due to multiple TBDs, and subsequently recovered after 10 weeks of IV antibiotics.
Several patients including Jill Auerbach, Martin Wilson and Audrey Mitchel shared their heart-breaking stories about the painfully devastating, long-term effects of Lyme disease. In each case, a misdiagnosis prevented them from receiving early treatment.
Matthew Frye, PhD, from Cornell University, and Richard Ostfield, PhD, from The Cary Institute, presented solid information regarding the spread of ticks and new strategies for combating TBDs. The senators seemed impressed with their presentations and asked for further information regarding the ongoing pilot study on reducing ticks in neighborhoods.
Two physicians from Stony Brook University, Drs. Marcos and Donelan, said they are seeing rising numbers of Lyme, babesiosis, ehrlichiosis and anaplasmosis cases. Dr. Donelan stated that the patients she sees who are co-infected with Lyme and Babesia, or Lyme and a rickettsial illness, are “the sickest of the sick,” with many children and adults requiring hospitalization.
Dr. Robert Bransfield told the senators that many patients are referred for psychiatric consultation because of missed diagnosis for Lyme disease. He shared information from his recent study that demonstrated high numbers of suicides related to Lyme and TBDs, and called for better diagnostic tests. He commented that he thinks all Lyme testing should come with the warning that a negative test doesn’t rule out the disease.
(Unfortunately, in the video below, Dr. Bransfield’s testimony has audio problems. You can read the text of his remarks here.)
The highlight of the hearing for me was when Holly Ahern, an associate professor of microbiology at SUNY Adirondack, took the stand. After Ahern told about her daughter’s missed diagnosis of Lyme, she delivered many hard-hitting facts: why the widely touted “single dose of doxycycline” is not effective treatment for Lyme disease, why the actual number of Lyme cases is at least 10 times greater than the CDC reports, why the CDC’s two-tier test is faulty, and why New York should invest more in tick-borne disease prevention and physician education.
It was a long hearing (almost five hours!) but well worth watching. It was well-organized and full of good information, which will help educate lawmakers. Because New York is one of the most populous state in the US, with one of the highest rates of Lyme and TBDs, it can have a huge impact in setting policy. If New York raises its standards, maybe other states will follow.
Click below to see for yourself. Scroll down to see the list of speakers.
Howard A. Zucker, MD, JD
Commissioner of NYS Department of Health
Bryon Backenson
Deputy Director, Bureau of Communicable Disease Control
Center for Community Health, NYS Department of Health
Dr. Ronald Limberger
Director, Division of Infectious Diseases
Wadsworth Center, NYS Department of Health
County Department of Health Panel:
Andrew Evans, Dutchess County Department of Health
Jean Ralston, RD, MSN, Putnam County Department of Health
Marianne Yourdon, RN, Broome County Department of Health
Steven Bock, MD,
Hudson Valley Physician
International Lyme and Associated Diseases Society
Patient Panel:
Jill Auerbach, Patient, Chair of the Hudson Valley Lyme Disease Association
Martin Wilson, Patient, Long Island
Audrey Mitchell, (Video) Patient, Central New York
Sunil Sood, MD
Chairman of Pediatrics, Southside Hospital, Infectious Diseases Attending, Cohen
Children’s Medical Center, Professor of Pediatrics and Family Medicine, Hofstra
Northwell School of Medicine
Infectious Disease Society of America
Craig Hersh, MD
Chief Clinical Officer, Empire Blue Cross/Blue Shield
Matthew Frye, PhD
Community IPM Extension Area Educator
Cornell College of Agriculture and Life Sciences
Luis Marcos, MD, FACP, MPH
Stony Brook University
Christy Beneri, DO
Assistance Professor of Pediatric Infectious Diseases Stony Brook Children’s Hospital
Susan V. Donelan, MD
Attending Physician, Infectious Disease Stony Brook University Hospital
Holly Ahem, MS
Associate Professor of Microbiology, SUNY Adirondack
Robert Bransfield, MD, DLFAPA
Department of Psychiatry, Roger Wood Johnson Medical School, Rutgers University.
Richard Otsfeld, Ph.D., Senior Scientist
Cary Institute of Ecosystem Studies
Christina Fisk, President
Lyme Action Network
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org .
this is almost 5 hrs. long!! plan accordingly; interesting of what i’ve heard so far!
betty gordon, iowa activist
Thank you for posting this excellent summary and video. Some of the testimony at the very end of the video should also be of interest to patients.
At 4:30, Rick Otsfeld of the Cary Institute of Ecosystem Studies speaks on the need to control tick populations and describes the Cary Institute’s multiyear, multimillion dollar study on neighborhood tick-control methods.
At 4:45, Christina Fisk, President of the Lyme Action Network, speaks about Lyme patient’s rights to be informed of all treatment options as well to receive insurance coverage for the clinically-based treatments as stipulated by the federally-sanctioned International Lyme and Associated Disease Society, (ILADS) treatment guidelines.
Thank you Karla. I will submit all my documentation as you suggested. I am getting all the papers together ASAP. Takes me a while to get things done. I am presently helping my nephew who was sued, and lost due to TBI’s! Have a lot of paper work, etc. BUT I AM going to follow through! May take me a little time. Isn’t it wonderful? Rather than concentrating on getting better, many of us have to deal with debt collectors, how we will pay our medical bills, regular bills and insurance premiums. Most of us cannot afford to go to doctors, IF the doctors are even willing to teat us. What a disgraceful situation!
This is excellent! This has to happen on a federal level. Medicare and Medicaid DO NOT pay or reimburse for TBI. If Medicare does not pay, no other private insurance pays. I learned the hard way and can no longer receive treatment because everything I have is attributed to TBI! Another family member is a college student, lost insurance due to TBI is on Medicaid and is unable to receive treatment. We had to pay doctors and for hospitalization, drugs, etc. out of pocket. Disgraceful! Maybe we now have a chance! Thank you, thank you to all who worked for this breakthrough.
Are you in New York? The NY Commissioner of Health stated that in New York, Medicaid will pay for Lyme treatments. All insurance denials for Lyme treatment should be reported to your state Attorney General. There are forms to do this. Under the Afordable Care Act, they are supposed to investigate any discrimination that results in loss of health care.
I live in New York. In 2015 when I was diagnosed with TBIs, I got the shock of my life when Medicare, Blue Cross/Blue Shield, GHI, SHIP, and my AARP/Met Life Long Term Health care policies all refused to pay or reimburse once I was diagnosed with “possible Lyme Disease”. I appealed to Medicare. I contacted Chuck Schumer’s office and K. Gillibrand’s offices. I contacted State Senators, and Representatives along with newspapers, etc. I recently was contacted by Gillibrand’s office and told to submit my Medicare denials, etc. and her office will help me appeal the decision made by Medicare. This was after two years! Other offices ignored me or was told it was a federal issue. I contacted the State of New York’s Attorney General’s Office, by phone and was “fluffed off” once I mentioned TBI. My nephew is in Pennsylvania, was in college and had to drop out for awhile because of his TBI. Medicaid does not pay for TBIs. I had to pay out of pocket for his hospital stay, when he became so very ill and no doctor would treatment him beyond initial diagnosis and 27 days of antibiotics. With both of us sick we have lawyers and collection agencies contacting us. I also joined a support group and I am shocked at the number of people who are embarrassed that they have TBI’s. We did nothing, engaged in no behaviors to bring on this disgusting illness. I cannot believe that 300,000 people are allowing themselves to be treated this way! I am watching these “hearings” and I furious with them. Affordable Care Act???? I chose a World Famous Board Certified Lyme Specialist to treat me, because I HAD insurance coverage. A doctor who has treated president’s, their families, and wanabe presidents and their families. I had to pay out of pocket and Medicare refused to reimburse me! Now I will leave my soapbox.
I am totally with you, but please don’t leave your soapbox until you have sent your story of insurance denials and documentation to both Senators Serino and Hannon. Like the Massachusetts’ state legislators who recently passed the Massachusetts insurance bill, they are actually in a position to help New York State residents get insurance coverage for tick-borne illnesses.
In terms of Medicare and Medicaid denials, human rights expert, Jenna Luche Thayer has filed a complaint with the federal HHS and she is asking patients to send examples of health insurance denial discrimination to their regional Health and Human Service offices and to contact her at her should if they wish to have copies of her supporting analyses to go with their letters.
https://www.linkedin.com/pulse/office-medicare-medicaid-services-civil-rights-lyme-luche-thayer?trk=mp-reader-card
If you are in New York and you are getting insurance denials, I would also send your story and documentation to Senators Sue Serino and Kemp Hannon.
the committee had an insurance exec from the company that denied Vicki Logan (spinal tap cdc confirmed post idsa treatment) and didn’t ask about her case?
I was also frustrated that the Committee members didn’t ask the Blue Cross Blue Shield representative more pointed questions, such as “How can they get away with denying coverage under the IDSA guidelines, when the ILADS Lyme treatment guidelines are the only treatment guidelines currently listed on the National Guidelines Clearinghouse?” Unfortunately the Committee members aren’t experts, but they did seem genuinely interested in learning. At the end of the hearing Senator Sue Serino said that she would accept any additional information. If anyone wants to submit info about Vicki Logan’s case or any other insurance denials, they could. I would personally hope that the family of Julia Bruzzeese would have been invited to testify and submit their documentation as at this time Julia has so much evidence of multiple tick-borne illnesses and is improving under treatment, yet continues to receive denials: https://on-lyme.org/en/sufferers/lyme-stories/item/260-both-blessed-and-cursed-julia-s-story
Just watched the end of the video and Senator Kemp Hannon also stated that he would accept any additional materials relevant to the issues raised in the hearing.
Karla, I’m glad you said there was something good on later as I had to turn it off at 4 p.m. because we could not understand a word that Bob bransfield said due to technical difficulties. He was just screeching on my end in with my line sensitive ears that are Amplified, it was way too much noise and had to be turned off.
I am surprised they didn’t stop him and correct the problem instead of letting the technical difficulties go on. I was very disappointed in that aspect for all who are listening.
Iowa activist, Betty Gordon
Why reinvent the wheel? They talk about creating things to educate the public. Wouldn’t it make sense to invite the Lyme support groups around the country and let them show what is actually working instead of wasting valuable time and energy starting from scratch. If it wasn’t for my local Lyme support group I would never have found the help I needed or countless others. These support groups are educating people, flyers are done, tick removal kits are made.
I appreciate the report. I don’t want to be mean, but OK, so they had a Lyme disease hearing. So what will come of it. Anyone with half a brain can see the effects of Lyme disease, no diagnosis, and no to extremely little treatment. Now what will happen. Hearing written down for history? I want action, I want treatment, I want diagnosis. I want the abuse of Lyme disease victims to END. What will we see as a result of this hearing.
I am impressed that the “scientists” got attention, but that the patients were barely heard, and barely noticed. Same old garbage. Sickening so far. Just plain sickening.
All of us should get together and do a class action law suit against Medicare, Medicaid, insurance companies! If there are 300,000 of us suffering from TBIs in the US alone, why is very little being done? I hear very little about TBI’s in the media. Stupid statues are getting more attention, then TBI victims. We are having our lives taken away from us! I am SICK of being SICK! I want my life back, I do not want pity, just what I have been paying for in premiums year after year! Did we engage in any behaviors or actions that brought on this disease? Did we “smoke” a tick, “eat a lot of ticks” , “inject” a tick, etc.? What happened to , choice of doctors, pre existing condition, etc.? Would we be denied treatment if we had West Nile, or Zika? Where are our basic human rights? I am SO DISGUSTED!!! yI am with you GMD. We need action, not research, meetings and surveys! God helps those who helps themselves. We are not helping ourselves. I think He has His fingers in His ears! I don’t blame Him!
Do they pay for Western Blot? Now my Dr wants me to have spinal tap to see if Lymes is in my nervous system. My Dr is under the impression my insurance will cover it? Would appreciate any comments. Thank you!!!!
I am in Wisconsin….we have many people here with Lymes….almost everyone you talk to knows someone who is diagnosed after eliminating every other type of illness. Still waiting for insurance approval for spinal tap….I’ll keep you updated.
Thank god for all of you standing up for lyme!!!! I hope god gives you a special place in heaven!!!!!
Diagnosed with Lymes for third time in 5years. Has anyone had a spinal tap to see if Lymes is in the nervous system? This might be the next step for me thinking that I need an IV antibiotic for 3weeks. I’d appreciate I ate any comments.
I just got through the first :45, but am already frustrated. The NYS Dept of Health officials glossed over some major issues. Do they really believe infection rates are declining?? Do they really believe that Medicare covers long term Lyme treatment?
They talked about the “need for improvement” in Lyme testing, and that the tests “aren’t perfect”, but then the Commissioner says that if you’re negative on an ELISA, you don’t have Lyme, unless it’s “really early” in the infection. Hmmm, I’ve never seen a single statement from the IDSA or CDC that says to test again later if Lyme is still suspected, or to continue antibiotics until additional testing is done. He also didn’t answer the question about insurance denials for additional testing, which are routine thanks to the CDC-endorsed IDSA protocol that insists that any negative ELISA is a definitive result.
Odd how so many medical officials will vaguely say we need better tests, but fail to state the corollary, which is that the current tests are inadequate and not reliable enough for definitive diagnosis or exclusion. Nor will they tell physicians or patients what to do if they suspect Lyme in the absence of positive lab tests. The IDSA still says not to diagnose it without positive lab tests, unless you live in certain counties in certain states and have a classic bulls eye rash.
I would much rather have seen a highly knowledgeable Lyme Disease patient advocate question these officials and not pull any punches.