(15th of 20 or so Jenna Luche-Thayer articles I'm posting - I started with her most recent articles but now I'm going back in time and posting several other articles she has created - also posting in its entirety since some might not want to access through LinkedIn) Youtube version - Jenna Luche-Thayer CDC & Lyme Oversight Required PART 3 of 3
by Jenna Luché-Thayer
April 10, 2016/www.youtube.com/watch?v=bWJm24mtaEA
Greetings from Jenna,
I returned late May 21st, 2016 from a Lyme advocacy effort in Washington DC. It was wonderful to work with such dedicated and talented advocates. We had a series of useful meetings with legislators and their staff and held a Lyme Disease Science and Policy Challenges Forum in Congress’s Rayburn House Office Building. I want to give special thanks to Dan Byers and Bruce Fries who really made this happen.
The group included
- Allie Cashel, Author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial;
- Ronald Stram, MD, Stram Center for Integrative Medicine;
Holly Ahern, Associate Professor of Microbiology, SUNY Adirondack speaking on Microbiological Challenges of Tick-Borne Infections,
- Tammy Crawford, from Focus on Lyme and representing Translational Genomics Research Institute;
- Lance A. Liotta, MD PhD, Medical Director Clinical Proteomics Lab, George Mason University;
- Bruce Fries, President of Patient Centered Care Advocacy Group;
- Dan Byers, Senior Director for policy at the U.S. Chamber of Commerce’s Institute for 21st Century Energy and myself speaking on Government Oversight and Policy Challenges.
The Lyme forum presentations will be released in a video. However, I wanted to give my complicated topic more time than the 20 minute video. And so, Sunday I put together this video based on my detailed notes and research.
The topic of this video is CDC & Lyme - Oversight Required. This video was done at home and my dog Moon decided to participate in the third part of the video. I hope you find it informative. Here follow the three links – one to each part of the video:Part 3 of 3 CDC & Lyme - Oversight Required 2016
by Jenna Luché-Thayer
[urlhttps://www.youtube.com/watch?v=bWJm24mtaEAAntibiotic Stewardship Initiative
Lyme patients are being restricted from Federally-sanctioned treatment options, through the ABI, with regards to the Native Lands.
1.5 million American Indians and Alaskan natives, 557 Federally-recognized tribes through a network of 37 hospitals, 60 health centers, 3 schoolhouse centers, 46 health stations and 34 Indian health centers.
The Health and Human Services provides care to this population through the Indian Health Service, which is using pharmacists as primary health care providers under the Stewardship program called the Indian Health Services, HIS. The nation Pharmacy Council Antibiotics Stewardship Program (ASP) for ambulatory care is being implemented by the IHS pharmacists and is focused on specific infections:
- Helico pylori bacteria
- And one sole tick-borne disease listed in these guidelines: Lyme diseaseLyme is the only vector-borne disease listed under the guidelines for IHS, which is very interesting because Native Lands have many other vector-borne diseases including Rocky Mountain Spotted Fever and West Nile Virus.
Within this compendium of guidelines on treatment options, all of the diseases listed have a number of recommendations that make up the body of treatment options, why these options are available, and you have choices between them and there are many different reference sources. However, LD has one sole references, which is the IDSA Lyme guidelines, which as we know are not compliant, substandard and outdated.
Why did this happen?
There is one particular actor involved with this perhaps, most probably, who has worked with the CDC, co-authored the ASI guidelines with the IDSA, is a consultant to the Indian Health Services (IHS), is a member of the Antimicrobial Resistance Working Group (President’s Council Advisors on Scientific Technology), created and manages and leads the California Antimicrobial Stewardship Program Initiative (CA is the first and remains the only state to enact antimicrobial stewardship legislation).
Altogether this actor is placed to create circumstances that have combined to place Native Americans who, contract LD and coinfections, in harm’s way. Basically what they have done is they have used the IHS to institutionalize discrimination against LD in Native American Lands (this discrimination has now been extended, specifically, into Native American Lands, which is very disturbing because this group is always so vulnerable and underrepresented in many, many ways).Universal Declaration of Human Rights
What’s going on is not only against Federal statutes, laws, good common sense, ethical and moral compasses, but involves the Universal Declaration of Human Rights.
Article #5: No one should be subjected to cruel or degrading treatment.
Being given a treatment option that is outdated and noncompliant with Federal advisory bodies is a cruel and degrading treatment. Not only that, often Lyme patients are being told they have a mental illness, a somatic disorder known as “medically-unexplained symptoms” or MUS – and this mental illness is called “an overreaction to pain, irregular heart beats, neurological twitches and ticks, shortness of breath, organ malfunctions and the symptoms that happen with chronic and systemic Lyme. To be told that you have a mental illness when you have these symptoms is a cruel and degrading treatment.
#2(?) All persons have a right to equal access to public service.
Clearly in this case, the public mandate for health care protection for the Lyme patient does not matter.
Article #25: All have the right to medical care and security in the event of unemployment, sickness and disability.
Of course in this situation, many thousands of people are becoming disabled by Lyme. They can’t even access disability insurance because they’re told they don’t have Lyme and that this is simply a mental disorder, perhaps, and they are being denied care that is sanctioned by the NGC. They’re disabled by Lyme, they’re not getting disability insurance coverage, they’re not getting medical care even when they are disabled even when they’re part of a vulnerable group, they are losing their employment because of Lyme and of course there is the sickness involved that comes and goes.
Mother and children have special considerations under Article 25 of the Universal Declaration of Human Rights, and children are at particular risk for Lyme and they’re not given treatment options so this is another violation.
Article #27: All have the right to share and participate in scientific advancement and its benefits.
We have the IDH sponsoring articles that say Lyme patients are not to share and benefit in science advancement – they’re not to consult with Lyme scientists. In fact we have been excluded extensively – the good science (it does exist) of which there is quite a bit advancement of Lyme, understanding the coinfections, alternative ways in which to diagnose Lyme disease, as well as treatment options that do in fact improve people’s lives and reduce their symptoms—these things have been denied and in that way we are not sharing in scientific advancement and its benefits – particularly, it’s benefits are being excluded from us.
Article #30: No state, group or person has the privilege to destroy these rights.
In fact, these rights are being destroyed, disrupted and taken away. Every day the CDC promotes these guidelines and the two-tiered testing that are outdated and noncompliant.Summary
A group of IDSA members have used their power and connections to institutionalize far-reaching discrimination against Lyme patients. It is reasonable to assume the IDSA will exploit any opportunity to deny Lyme disease patients access to non-IDSA treatment outcomes.
For example there are 44 states that have legislation in place that can potentially use pharmacists as primary patient care practitioners (outside of the Native American Lands) and it is reasonable to assume that the IDSA will harness the ASI and the national Pharmacy Network to implement their substandard guidelines as they have the Indian Health Service Pharmacy Network. Why improve your guidelines if you can just codify them into law and regulations under the ASI.
Furthermore, there are 10 states that are designated as the CDC&P Emerging Infections Program (EIP) and the EIP states fast-track all infectious disease policies and Lyme Disease is one of the infectious diseases studied by the EIP states (CA, CO, NM, GA, MD, MN, NY, CT through the Yale EIP Program, OR and TN). The OR head of the ID policy is an IDSA member and he has used the noncompliant guidelines to reframe Lyme disease to an even stricter definition than what it currently it is in the guidelines, which means even fewer people will be diagnosed and treated. Given this case in OR, one must assume it’s happening in all the other 10 states where the IDSA has a clear presence in the EIP programs.
IDSA political influence has escalated due to global changes, concerns for epidemics, pandemics and bioterrorism, partnership with Big Pharma, ASI gives the IDSA a global platform to promote their substandard and Federally-compliant guidelines. The CDC and NIH appear willing collaborators and enablers of this very intrusive overreach. CDC Directors responsible for Lyme policies and programs are all IDSA members; all aspects and programs of these policies are therefore very compromised.The promotion of noncompliant medical guidelines for Native Americans shows poor judgment on many different levels; the political optics alone are simply stunning.Conclusions and Recommendations:
As a result of the relationship with the IDSA, the CDC routinely violates Federal laws, disregards congressional directives related to appropriations bills and undermines state laws that are there to protect constituents, particularly Lyme patients.
It is promoting policies and programs that are noncompliant to other Health and Human Services agencies and advisory institutions.
It is misinforming the public as to the complexity of illness and its potential for disability and death.
It is generating ill-conceived programs that do not meet their own strategic objectives (my note: using US tax dollars)
It ignores or discredits ground-breaking Lyme research accomplished by non-IDSA scientists and medical practitioners
It fails to advance any patient-centered outcomes
It discriminates against Lyme patients; Lyme patients who are disabled; Lyme patients who are females (since the Lyme testing is 60% insensitive to females), Lyme patients who are Native Americans, and all people who do not have the personal financial resources to pay for care outside of their insurance policy (people who cannot go to an LLMD and pay out of pocket for extended treatment, as sanctioned by the NGC, GRADE, IOM, ILADS guidelines).
It’s well known throughout the global Lyme community the CDC is proposing and promoting Federally non-compliant IDSA Lyme guidelines throughout the world. This information presented today will be shared throughout the global Lyme community.Recommendations:
1. Remove all reference to the substandard and Federally non-compliant IDSA Lyme guidelines throughout the 50 states and protectorates, the CDC global dissemination, and the Native American Lands.
2. Only incorporate Federally-sanctioned, evidence-based, patient-centered Lyme guidelines and omit the two-tiered testing and use clinically based diagnosis because it is far more accurate than the two-tiered testing, until we have a diagnostic tool that is better for testing Lyme presence.
3. Place a qualified nominee from the Lyme community as a voting member on the Antimicrobial Resistance Working Group (President’s Council Advisors on Scientific Technology). Place qualified nominees from the Lyme community as voting members on committees that inform the Health Evidence Review Commissioners in all 10 of the Emerging Infections Program-designated states.
4. Make official amends to all countries that adopted the IDSA Lyme guidelines according to the recommendations of the US Government and the CDC.
In closing, I hope that this informed you and helped you understand why we are in such a mess and why so many people are getting sick and disabled from Lyme disease in the US and many other parts of the world.
Background on videos:
Jenna Luché-Thayer’s expertise includes government transparency, accountability, and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries. She has extensive experience in congressional relations, testimony and legislation. She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications. Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund.
There is a correction regarding the PLEASE Study: I misstated that Arend authored the PLEASE study, the primary author is Dr. Bart-Jan Kullberg and the purpose of the study "is to establish whether prolonged antibiotic treatment of patients diagnosed with proven or presumed PLD (as endorsed by the international ILADS guidelines) leads to better patient outcome than short-term treatment..."
This Study objective is inherently flawed as International Lyme and Associated Diseases Society (ILADS) does not claim to have one particular treatment protocol for all Lyme patients. All ILADS protocols are patient centered to the patient. Therefore, the treatment protocol the PLEASE study uses does not represent ILADS nor prove or disprove any ILADS protocols.
For those of you who would like even more information on this topic I have put together some very detailed analyses I am willing to share. Please contact me with your request.
Please note that Phyllis Mervine, founder of LymeDisease.org provided the information regarding the anomalies related to the New England Journal of Medicine vol. 345(2) July 12, 2001 Two controlled trials of antibiotic treatment in patients with persistent symptoms & a history of Lyme disease.
Thank you – JennaSee Part 1:www.healingwell.com/community/default.aspx?f=30&m=3684065&g=3684065#m3684065See Part 2:www.healingwell.com/community/default.aspx?f=30&m=3684091
Jenna Luché-Thayer’s expertise includes government transparency and accountability and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries. She has extensive experience in congressional relations, testimony and legislation. She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications. Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund.
Her other articles:
Link to 1st article + thread: "CDC Sabotages State laws to protect Lyme patients"www.healingwell.com/community/default.aspx?f=30&m=3672003
Link to 2nd article + thread: "CDC Rejects Evidence-based medicine for Lyme patients"www.healingwell.com/community/default.aspx?f=30&m=3672006
Link to 3rd article + thread: " CDC Evades accountability in Lyme epidemic"www.healingwell.com/community/default.aspx?f=30&m=3672010
Link to 4th article + thread: "Lyme Patients Stigmatized and Scapegoated with Federal Support:www.healingwell.com/community/default.aspx?f=30&m=3675093&g=3675093#m3675093
Links 5th article + thread: "CDC Lyme Policy Cripples Obamacare & Sanctions Insurance Discrimination"www.healingwell.com/community/default.aspx?f=30&m=3681041
Links to 6th article + thread: Mar 17, 2016 - Update 7A - Lyme Corps Assessment Brief, part 1 of 2: www.healingwell.com/community/default.aspx?f=30&m=3683408
Links to 7th article + thread: Mar 18, 2016 - Update 7B - Lyme Corps Assessment Brief, part 2 of 2: www.healingwell.com/community/default.aspx?f=30&m=3683417
Links to 8th article + thread: Ethics Complaints - CDC's Preferential Treatment for IDSA https://www.healingwell.com/community/default.aspx?f=30&m=3683427
Links to 9th article + thread: Comments from YOU Regarding Lyme Corps & CDC's Lyme Failures https://www.healingwell.com/community/default.aspx?f=30&m=3683435
Links to 10th article + thread: CDC Lyme Programs Routinely Flout Federal Procedureswww.healingwell.com/community/default.aspx?f=30&m=3683452
Links to 11th article + thread: Will the NPR Lyme News follow that of Gawker site Jezebel?www.healingwell.com/community/default.aspx?f=30&m=3683491
Links to 12th article + thread: We may need a Whistleblower to Address the Lyme Epidemic https://www.healingwell.com/community/default.aspx?f=30&m=3683514
Links to 13th article + thread: Will Federal bill S. 1503. for Lyme and Tick-Borne Diseases end 40 Years of Marginalization? https://www.healingwell.com/community/default.aspx?f=30&m=3683524
Links to 14th article + thread: How Does the CDC & Big Pharma Alliance Drive Public Health Policy regarding Lyme? https://www.healingwell.com/community/default.aspx?f=30&m=3683559&g=3683559#m3683559
Post Edited (Pirouette) : 8/24/2016 2:37:06 PM (GMT-6)