(16th 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) Office for Medicare & Medicaid Services & Office for Civil Rights Reviews Discrimination Against Lyme Patients
By Jenna Luche-Thayer
August 18, 2016/www.linkedin.com/pulse/office-medicare-medicaid-services-civil-rights-lyme-luche-thayer?trk=mp-reader-card
Greetings from Jenna,
I wanted to share with you these communications I have had with Health and Human Services. These communications took place in August 2016.
The Centers for Medicare and Medicaid Services Atlanta Regional Office (CMS). CMS has responsibility for regional adherence to the Affordable Care Act and their Office for Civil Rights will be reviewing these submissions from the perspective of discrimination against the Lyme, chronic Lyme/tickborne Illness (TBI) patient group. The HHS Office of the Regional Director has submitted these findings to both of these offices.You may want to consider sending examples of health insurance denial discrimination to your regional Health and Human Service office. If you do take this action, please take time to post it on social media and encourage others to do the same. Please feel free to message me at my Linkedin account or my public FB (Jenna Luche-Thayer) should you wish to have copies of my supporting analyses to go with your letters.
Region 1 HHS Region 1 - Boston directly serves state and local organizations in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont.
Region 2 HHS Region 2 - New York directly serves state and local organizations in New Jersey, New York, Puerto Rico, and the Virgin Islands.
Region 3 HHS Region 3 - Philadelphia directly serves state and local organizations in Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, and West Virginia.
Region 4 HHS Region 4 - Atlanta directly serves state and local organizations in Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, and Tennessee.
Region 5 HHS Region 5 - Chicago directly serves state and local organizations in Illinois, Indiana, Michigan, Minnesota, Ohio, and Wisconsin.
Region 6 HHS Region 6 - Dallas directly serves state and local organizations in Arkansas, Louisiana, New Mexico, Oklahoma, and Texas.
Region 7 HHS Region 7 - Kansas City directly serves state and local organizations in Iowa, Kansas, Missouri, and Nebraska.
Region 8 HHS Region 8 - Denver directly serves state and local organizations in Colorado, Montana, North Dakota, South Dakota, Utah, and Wyoming.
Region 9 HHS Region 9 - San Francisco directly serves state and local organizations in Arizona, California, Hawaii, Nevada, American Samoa, Commonwealth of the Northern Mariana Islands, Federated States of Micronesia, Guam, Marshall Islands, and Republic of Palau.
Region 10 HHS Region 10 - Seattle directly serves state and local organizations in Alaska, Idaho, Oregon, and Washington.
Dear Ms. Jordan,
Thank you very much for taking my call and listening to my brief outline regarding the lack of access to affordable medical care by the majority of patients who suffer from persistent or chronic Lyme and complications by other tickborne illnesses (TBIs).
As I mentioned during our telephone conversation today, I have 30 years of experience working in over 40 countries on government transparency and accountability. I have served as a Senior Advisor to the United Nations, US Government and nonprofit organizations. The emphasis of this work was to help marginalized groups gain a political voice, be represented in policy and gain access to services.
I very much support the objectives of the Affordable Care Act. Furthermore, there has been great hope that the ACA would help this patient group gain access to affordable care.
Unfortunately, the Lyme/TBI patient group has had great difficulty benefiting from this law, even in those states where there are specific laws to support Lyme patient rights and require insurance coverage for Lyme/TBI treatment options.
It is a very complex situation that I have attempted to document. As I mentioned to you during our conversation, I have only begun to document this situation, however, the findings are quite compelling. In all honesty, I find they show a clear pattern of institutionalized discrimination. Furthermore, I have already uncovered $21,490,108M in NIH grants that have supported articles and studies that dismiss, trivialize and stigmatize this patient group.
As promised, I said I would forward this documentation to you. This group of analyses include:
1 - CDC Lyme Policy Cripples Obamacare and Sanctions Insurance Discrimination
2 - CDC Evades Accountability in Lyme Epidemic
3 - The CDC Rejects Evidence-Based Medicine for Lyme Patients
4 - CDC Sabotages State Laws Protecting Lyme Patients
5 - Lyme Patients Stigmatized and Scapegoated with Federal Support ($$)
6 - CDC Global Credibility in Jeopardy over Lyme Policy
7 - NIH Grants Used to Claim Lyme Patients are Looney ($$)
I believe the titles highlight the topic of focus. These are not one-page syntheses because these topics are complex and interrelated. And, quite frankly, it is the details that show the patterns of discrimination and how this has resulted in Lyme patients being denied treatment options. In addition, you may notice some of the basic background information repeats in every analysis because I wrote them as standalone pieces.
In addition to the seven analyses I have enclosed, there are additional analyses. For example, as part of our international agreements on climate change, the US government is using data from the surveillance of Lyme in North America to inform global climate change public health policy. However, this framework and data is contaminated by the same issues driving the CDC’s national Lyme policy.
As you may well know, on July 15, 2016, Ms. Nicole Greene, Deputy Director for Office on Women's Health blogged about living with her chronic Lyme [see http://www.womenshealth.gov/blog/my-life-with-lyme.html . Kristen T. Honey, Policy Advisor to the White House Office of Science and Technology was a key speaker and mentor for the Lyme Innovation Hackathon in June 2016; Ms. Honey has now recovered from late-stage Lyme disease with related coinfections. In May, I and a number of scientists, doctors and other Lyme advocates met with members of the Senate Appropriations Subcommittee on Labor, HHS and Education; the Senate Health, Education, Labor and Pensions; the House Energy and Commerce; and the House Science, Oversight Subcommittee to discuss some of these issues. These meetings were set up a former Hill staffer who suffers from chronic Lyme.In 25 years, the CDC has not changed its Lyme policy.
There are now thousands of Lyme advocates, working to their ability throughout the country. In just the last six months, I have talked to and worked with thousands of people struggling with this epidemic. Apart from the individual debilitations from the illness, the greatest struggle is accessing accurate diagnosis and then accessing affordable treatments. I am also part of the global Lyme advocacy network. I am committed to doing whatever I can to reform the CDC’s harmful Lyme policy and help Lyme/TBI patients gain access to affordable medical care. By this I mean, I am at your service.
Please do not hesitate to contact me should you have any questions. I would very much appreciate your confirmation of this communications and attachments.
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?" (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
Post Edited (Pirouette) : 8/24/2016 2:36:13 PM (GMT-6)