(3rd of 5 articles I am posting)
Jenna Luche-Thayer, former Senior Advisor at the United Nations
July 15, 2016/www.linkedin.com/pulse/cdc-evades-accountability-lyme-epidemic-jenna-luche-thayer?articleId=6159589785028542464#comments-6159589785028542464&trk=prof-post
Over the last 40 years, the Lyme epidemic has expanded from a neighborhood cluster in Lyme Connecticut to being recognized as a national and global epidemic.
Nevertheless, the CDC has misrepresented the scale and scope of the Lyme epidemic. In CDC’s ‘2016 Justification of Estimates for Appropriation Committees Report to Congress’, the CDC states that Lyme disease is the seventh most-commonly reported infectious disease in the country. According to the CDC’s own calculations, Lyme is estimated to be the third most common infectious disease in the country.
The CDC does not make routine requests for Lyme resources. Furthermore, the CDC’s pattern of resource al
location for Lyme differs significantly from that of other infectious diseases, including vectorborne diseases. For example, the 2004 CDC tax dollar al
locations for West Nile Virus was approximately $11,300 per WNV case compared to the estimated $26 to $30 for Lyme cases.
Additionally, the estimated 1000 percent increase in Lyme infections did not result in the CDC allocating more monies to Lyme. Despite being a national epidemic and being a disease that can be debilitating, disabling and fatal, Lyme has received a low percentage of CDC resources and low amounts compared to other diseases with similar symptoms.
Unlike the other diseases, the CDC does not measure the people level impact of Lyme. This means that important Lyme disease control measures are overlooked, e.g. reducing the time between infection and diagnosis.
In addition, the lack of Lyme-related people level indicators contributes to making Lyme patients invisible to the readership of official documents. Such persons would include policymakers, elected representatives, government officials, medical societies and healthcare professionals.
In addition to making Lyme patients less visible than other patient groups, the CDC has dismissed the strong evidence of persistent Lyme infection and chronic Lyme. Most CDC material states there is no chronic Lyme and that patients with symptoms after treatment have a post treatment Lyme disease syndrome. They recommend palliative care rather than active treatment for infection. They recommend such patients ‘share their feelings with a counselor’ and consider taking antidepressants, powerful and addictive pain medications and hydrocortisone. Recommending a path to immune suppressing steroid treatment for a Lyme patient with persistent infections shows a lack of medical knowledge - such a recommendation can be interpreted as reckless endangerment.
The CDC’s dismissal of persistent infection, apparent ignoring of Lyme patients and low resource al
location to the epidemic demonstrate institutionalized practices of bias against Lyme patients. This bundle of behaviors and outcomes appear unique when comparing Lyme to similar CDC efforts in other infectious diseases. In addition to this institutional bias, the poor performance of the CDC’s Lyme program indicates its activities are ill conceived and/or poorly implemented.
Over the past 25 years, the CDC Lyme program has shown little demonstrable progress regarding advancement on Lyme diagnostics, prevention and treatments. Such failures and waste of resources will continue until the CDC acknowledges how people are affected by the Lyme epidemic.
In 2001, the GAO Lyme Report did not distinguish between program implementation versus program effectiveness. In this case, the GAO Lyme Report did not assess whether the CDC Lyme programs met its mandates to protect the public.
Over 25 years, the CDC Lyme program has evaded numerous efforts by Congress to hold it accountable. Furthermore, multiple Secretaries of the Department of Health and Human Services appear to have had no influence over the Lyme program’s squandering and inferior performance.
In addition, repeated formal complaints to the Inspector General regarding the CDC’s preferential treatment for the noncompliant IDSA Lyme Guidelines have yielded no visible actions or changes; the CDC continues its exclusive promotion of the IDSA Guidelines. It is well documented that the CDC’s preference for the IDSA Lyme guidelines contributes to denying Lyme patients access to federally sanctioned, evidence based and patient-centered Lyme treatment protocols.
The CDC Lyme program has shown a clear pattern of discrimination against patients handicapped by persistent Lyme infection and Lyme and coinfections and in this regard its officials “do not adhere to all laws and regulations that provide equal opportunity for all Americans regardless of race, color, religion, sex, national origin, age, or handicap.” The term equal opportunity includes equal access to federally sanctioned Lyme treatments.
The CDC Lyme program shows no indications for course correction. The time has arrived for the Department of Justice to investigate the CDC Lyme program for Waste and Institutionalized Discrimination."
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.
Jenna's other articles:
Link to 1st article + thread:
"CDC Sabotages State laws to protect Lyme patients" (7.25.16)www.healingwell.com/community/default.aspx?f=30&m=3672003&g=3672003#m3672003
Link to 2nd article + thread:
"CDC Rejects Evidence-based medicine for Lyme patients" (7.8.16)www.healingwell.com/community/default.aspx?f=30&m=3672006
Link to 3rd article + thread:
"CDC Evades accountability in Lyme epidemic" (7.15.16)www.healingwell.com/community/default.aspx?f=30&m=3672010
Link to 4th article + thread:
"Lyme Patients Stigmatized and Scapegoated with Federal Support" (7.25.16)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" (8.9.16)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" (3.21.16) 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" (3.22.16) https://www.healingwell.com/community/default.aspx?f=30&m=3683435
Links to 10th article + thread:
"CDC Lyme Programs Routinely Flout Federal Procedures" (3.22.16)www.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?" (4.1.16)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" (4.6.16) 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?" (4.10.16) 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?" (4.15.16) https://www.healingwell.com/community/default.aspx?f=30&m=3683559&g=3683559#m3683559
Links to 15th article + thread:
"CDC & Lyme Oversight Required" VIDEO Part 1 of 3 (5.23.16) https://www.healingwell.com/community/default.aspx?f=30&m=3684065&g=3684065#m3684065
"CDC & Lyme Oversight Required" VIDEO Part 2 of 3 https://www.healingwell.com/community/default.aspx?f=30&m=3684091&g=3684091#m3684091
"CDC & Lyme Oversight Required" VIDEO Part 3 of 3www.healingwell.com/community/default.aspx?f=30&m=3684161&g=3684161#m3684161
Links to 16th article + thread:
"Office for Medicare & Medicaid Services & Office for Civil Rights Reviews Discrimination Against Lyme Patients" (8.18.16) https://www.healingwell.com/community/default.aspx?f=30&m=3689306
Links to 17th article + thread:
"CDC Employs Denial to Downplay Lyme Epidemic" (8.22.16) https://www.healingwell.com/community/default.aspx?f=30&m=3689326&g=3689326#m3689326
Links to 18th article + thread:
"CDC Global Credibility in Jeopardy over Lyme Policy" www.healingwell.com/community/default.aspx?f=30&m=3683408
Links to 19th article + thread:
"Global Antibiotic Stewardship Denies Native Americans Lyme Treatment Options" https://www.healingwell.com/community/default.aspx?f=30&m=3689347&g=3689347#m3689347
Links to 20th article + thread:
"NIH Grants Used to Claim Lyme Patients are Looney" www.healingwell.com/community/default.aspx?f=30&m=3689363
Post Edited (Pirouette) : 8/24/2016 2:49:36 PM (GMT-6)