NY State Senate calls for action plan & funding to combat Lyme disease
From the New York State Senate
October 24, 2017:
ALBANY, NY – Senator Sue Serino (Hyde Park) and Senator Kemp Hannon (Nassau) today released a comprehensive report aimed at combating the spread of Lyme and tick-borne diseases (TBDs) in the state. Based on the findings presented at a public hearing convened by the senators, the report highlights the immediate need for a statewide action plan, as well as a legislative commitment to empowering patients and funding critically necessary research to reduce the tick population.
Senator Sue Serino, Chair of the Task Force on Lyme and Tick-Borne Diseases, said, “With yet another Powassan virus diagnosis in the state—this time in Dutchess County—and countless New Yorkers suffering from Lyme and other tick-borne diseases, it is imperative that the state makes combatting these devastating diseases a top priority. While progress has been made since the formation of the Task Force, this report provides a much needed road map to take our work to the next level, and I implore the Governor and our colleagues in both houses to join us in the fight to take control of this public health crisis.”
Senator Kemp Hannon, Chair of the Senate Standing Committee on Health, said, “With New York sitting at the epicenter of the tick-borne disease epidemic we have a duty to engage partners at every level to act swiftly and efficiently to improve outcomes for the thousands of patients suffering around the state. Armed with the information gleaned from the hearing, we have put together a comprehensive strategy that can help inform the Department of Health as they develop a critically necessary statewide action plan. We stand ready to work with them—and our colleagues in the Legislature—to see that our recommendations become a reality.”
The August public hearing convened experts in the field, medical professionals, insurance industry representatives, patients, and advocates to develop effective solutions to empower patients and prevent New Yorkers from contracting the diseases.
As tick-borne disease rates increase across the state, it is clear that New York is facing a direct threat that requires a significant investment to improve identification techniques, reporting and treatment options.
Testimony provided by patients at the hearing painted a grave picture of life with a tick-borne illness. Patients described agonizing pain, dangerous loss of memory and motor skills, financial ruin as a result of a severe lack of effective treatment options, and more. A common theme that ran throughout patient testimony was the rampant inaccuracies plaguing the test currently used to detect TBDs, with some suffering with symptoms for years before an accurate diagnosis and treatment.
To address this point, the report includes a recommendation for the state to create specific protocol when it comes to notifying individuals of their diagnoses. Senators Hannon and Serino have introduced legislation that would require the state to develop that specific protocol to guide providers in properly diagnosing and treating Lyme and TBDs and require them to provide patients with a notification form to better educate them about their test results.
It is commonly accepted that Lyme disease can be effectively treated with antibiotics if detected early. However, as was discussed by many hearing witnesses, the test used to detect Lyme disease is simply not reliable. Too often patients are led to believe that they are in the clear after receiving a ‘negative’ serology test for Lyme disease, which ultimately delays critical treatment resulting in worsening— sometimes irreversible—symptoms. The bill (S.6926) would arm patients with the information they need to more effectively advocate for themselves and receive swift, effective treatment.
Additionally, the Task Force recommends the following:
- Creation of a Statewide Action Plan and Dedication of Significant Funding in preparation for the 2019 Executive Budget Cycle;
- Re-instituting the NYS Health Quality Cost Containment Commission to accurately assess the cost of insurance and consider coverage for long-term treatment of symptoms;
- Promote testing in children who present with TBD-related symptoms to ensure swift treatment and avoid the long-term consequences of misdiagnosis;
- More effectively utilize proven information systems, information technology and social media to increase awareness about the dangers of Lyme and TBDs; and
- Actively pursue outside funding to invigorate critical research.
Click to read the whole report: NYSenate LymeReport
Click below to watch the August hearing in its entirety.
A thank you to these senators and people for the work they are doing. I would like to have them work on Medicare, Medicaid, Empire, Emblem, and other insurance companies PAY for those of us who already have TBDs. By the time our “health care issues” are addressed many of us will be dead or homeless.
the document is frightening.
does anyone else think its a bad idea to put Anthem in charge of the next Dearborn meeting, and reviewing their own claims, and possibly sponsoring a “peer” reviewed study?
wow, wow, and wow.
in addition, I am seeing a growing trend of classifying borrelia lonestari as a nuisance disease.
that needs to stop.
I agree with you that the conflict of interest here is huge and dangerous. It is documented that NY Blue Cross Blue Shield consciously chose to deny treatment to Lyme patients in the short-sighted effort to help their bottom line. It is for the same reason, that they continue to cite the out-of-date and delisted IDSA Lyme treatment guidelines and ignore the ILADS treatment guidelines when patients are denied insurance coverage for care.
One problem is that the legislators seem to be naive and uninformed when it comes to the role that those with conflicts of interest have had in creating Lyme policies that have caused decades of harm to Lyme patients, including those who wrote the IDSA guidelines and lobbied for the two-tier testing criteria.
The CDC has almost no credibility with the Lyme community and with many of the physicians on the front line of the epidemic. The New York State Department of Health has a long history of persecuting Lyme-literate physicians, and preventing New York residents from having access to tests available in every other state, often for extremely arbitrary reasons. So if the CDC and the NYS Department of Health start working together without any other safeguards in place, will we see any different results?
Where in this plan are the safeguards for patients and the few courageous doctors who are willing to treat chronic Lyme disease? Where do they have a voice to prevent more of the same from happening?
The Senators also seem to be unaware that the Dearborn Criteria was designed for surveillance purposes only and because it was so insensitive and restrictive, was never intended for diagnostic purposes. One reason that the CDC has lost credibility with the Lyme community and many treating physicians is that without any new scientific evidence to support them, the CDC is now supporting the two-tier tests as accurate after 4-6 weeks of infection and discouraging physicians from ordering any other tests, including PCR or DNA-based tests, which are considered a definitive sign of infection for virtually every other infection. Insurance companies are very aware of this history, yet they continue to use negative two-tier tests to deny care. To now say that if we put an insurance companies in charge of a new Dearborn-like conference misses the point that the Dearborn criteria was never intended for diagnostic purposes to begin with. See Dr. Steven Philips rebuttal of the CDCs positions on testing and treatment in a recent award-winning FOX 5 New York series on the Lyme epidemic: https://www.huffingtonpost.com/dana-parish/yale-trained-doctor-refut_b_11291116.html
The New York state DOH stands alone among the 50 states for banning almost all of the innovative CLIA approved tests for Lyme disease and tick-borne coinfections. It was brought up in the hearing that The Galaxy Diagnostics test for Bartonella, which is considered by many to be the best in the world is banned in NY because Galaxy Diagnostics uses a different sequencing method than the DOH. I suspect many other tests are being banned for reasons that are just as arbitrary. So essentially the CDC and the NYS DOH have been working together to prevent NYS residents from getting accurate diagnostic testing and to discourage innovation in testing.
If you look at the case of Julia Bruzzese, which both Senators are very aware of, the NYS DOH is also complicate in denying insurance appeals based on the outdated, delisted IDSA Lyme guidelines, while denying patient’s rights to have their appeal considered under the ILADS treatment guidelines, which are currently the only guidelines listed under the National Guidelines Clearinghouse and the only guidelines that meet Institute of Medicine standards: https://on-lyme.org/en/sufferers/lyme-stories/item/260-the-ultimate-lyme-test-julia-s-story
The CDC has also failed to recognize the ILADS Lyme disease treatment guidelines without giving any scientific justification for doing so.
If the Senators believe that just having the CDC and the New York State DOH work together more formally is enough, it is doubtful that anything will change. What is desperately needed is to include all stakeholders including patients, patient advocates and ILADS-affiliated treating physicians on any panels looking for solutions to these problems. The Senators have stopped short of this and don’t seem to realize that any reformative efforts are likely to fail without these safeguards in place.
In regards to Medicaid and Medicare, under Obamacare the New York State Attorney General’s office is obligated to investigate arbitrary denials of insurance coverage. Many denials have been reported to the NYS Attorney General’s office, but no action has been taken. Why wasn’t Attorney General Schneiderman asked to testify at the hearing? A formal complaint has been filed at the federal level which has been rebuffed by the federal agencies and now sits in the office of Senator Kirsten Gillibrand and other Senators. Phyllis is right that if you have had Medicaid or Medicare denials, then you should be contacting both NY Senators, the Attorney General’s office, and your regional HHS Office and asking them to take action on this complaint: http://www.healingwell.com/community/default.aspx?f=30&m=3689306
Thank you KarlaL! I contacted NYS AG Schneidermann’s Office regarding my denials for reimbursement and insurance coverage by phone. I was actually reprimanded by the “gentleman?” who answered! I was told I had the wrong Medicare coverage? Asked how was that possible? Contacted Chuck Schumer’s office numerous times, still haven’t heard from his office. Contacted Gillibrand’s office and one of her workers is helping me appeal to Medicare………..? All it is..is spin, spin, spin. Don’t understand how 300,000 people diagnosed just this year can allow this to happed!
Thank you.. however,….THE PUBLIC IS AWARE!! THE WORLD IS AWARE of how and why there is LYME DISEASE! However, Doctors Worldwide are CLUELESS as to how to recognize, treat or COMBAT the Disease. COMBAT is needed to EDUCATE and CERTIFY more Lyme Literature Doctors (LLMD’s) COMBAT is needed in getting LYME approved thru HEALTH INSURANCE!!!!! ENOUGH AWARENESS ..EVERYONE HAS HEARD OF LYME – NEW YORK open the apple and help COMBAT the NEED in HELPING TO FIND solutions AFTER THE TICK BITE. MORE DOCTORS AND HEALTH INSURANCE – PLEASE!!
Amen and amen!!! Tired of talk, want action.
When will our state senators, representatives, and other politicians look into Empire Blue Cross/Blue Shield, Emblem GHI, Medicare and Medicaid, etc not paying for nor reimbursing for TBI treatment. Most NYS/NYC employees have this insurance. Retirees, on Medicare can only change insurance every two even numbered years. Most do not predict a tick bite, when we plan retirement, and who knew Medicare and our insurance would not pay.
Action has to be taken on a FEDERAL LEVEL!! We have to contact our FEDERAL politicians Gillibrand and Schulmer Continue to remind them by contacting their offices every week that we pay for their health care, salaries and we VOTE!
Very related to Lyme and Chronic Lyme is Myalgic Encephalomyelitis, aka CFS that can have many similarities to Lyme or other tickborne disease like Bartonella (aka Cat scratch fever), Babesis. Personalized medicine type testing for antigens, antibodies, cytokines, metabolomics, genetics, epigenetics are needed to rapidly assess route cause, diagnose disease, and plan and track most effective treatments. Like Lyme, ME/CFS is one of the most discriminated against diseases by NIH and this must change for both diseases and related illnesses. See superb December 2016 article on disease burden vs funding levels at NIH at
http://www.oatext.com/Estimating-the-disease-burden-of-MECFS-in-the-United-States-and-its-relation-to-research-funding.php
Lime disease is a “rich mans” disease. without health insurance to pay the costly doctor visits and treatments, how can a person with Lime and other Tic borne diseases who has no extra money ever going to get the help they deserve.