Please contact your US Representative asap and ask them to vote YES to the 1st Century Cures Act. This bill has Lyme legislation that will help patients.
The vote will be at approximately noon today.
http://www.whoismyrepresentative.com If you are unsure who your Representative is, you can find them here with your zip code.
Published on Nov 28, 2016
LymeLight Foundation grant recipients share about their treatment grants and describe symptoms of Lyme disease.
November 30, 2016
Lyme community leaders are pleased to announce that language on tick-borne diseases (TBD) will be included in the 21st Century Cures Act (the House Amendment to Senate Amendment to HR 34). The inclusion of this language was achieved after 2 days of intense negotiations with Congressional offices. The language will be included in the House version of the bill which is expected to pass easily due to its broad bipartisan support. The signatories listed below mutually agreed upon the new TBD language that will now be included in the bill.
Yesterday and early today, Leaders put out calls to the community to have them contact their federal Senators and Representatives to pull out congressionally proposed Lyme language that would have contradicted the bill’s intent. Thank you all for those efforts. Congressional leaders responded by indicating a willingness to work with the Lyme community. That effort was successfully concluded at 5pm today when the Rules committee met and the proposed language agreed upon by both sides was incorporated into the large 21st Century Cures amendment legislation.
We would like to thank House Majority Leader Kevin McCarthy, Chairman Fred Upton of the Energy & Commerce Committee, and Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus, for their efforts to make this happen. We also thank Congressman Chris Gibson whose work in having Lyme language inserted into the original Cures Act which passed the House enabled us to move forward with this groundbreaking effort. A vote on the Rules portion and then on the Managers Amendment will take
place Tomorrow Wednesday, midday, and will be broadcast on CNN. Final times will be available in the AM.
Patricia Smith, President, Lyme Disease Association, Inc.
Jill Auerbach Chair, Hudson Valley Lyme Disease Association
Phyllis Mervine, President, LymeDisease.org
Ira Auerbach, Hudson Valley Lyme Disease Association
Christina T. Fisk, President, Lyme Action Network
David Roth, Founder of Tick Borne Disease Alliance and Global Lyme Alliance
Bruce Fries, President, Patient Centered Care Advocacy Group
Holly Ahern, Vice President, Lyme Action Network
Dorothy Leland, Vice President, LymeDisease.org
Timohy Lynagh, Board Member, Lyme Disease Association, Inc.
The Lyme Disease Association (LDA) reports that the total number of Lyme cases in the US is now approaching 400,000 per year.
The report is based upon the just released CDC’s MMWR final reported Lyme
case numbers for 2015.
http://r20.rs6.net/tn.jspt=o5mq4ezab.0.0.gothlzcab.0&id=preview&r=3&p=http://www.cdc.gov/mmwr/volumes/65/wr/mm6546a9.htm?s_cid=
The three states with the highest case numbers are from the Mid-Atlantic region: Pennsylvania, New Jersey and New York. These three states constitute 48% of the Lyme case numbers in the US. LDA president Pat Smith said “Lyme case numbers continue to surge, yet government is doing little to combat this massive epidemic, which destroys families and costs lives.”
The LDA has ranked the top 15 states based on those CDC reported Lyme case numbers.
The table below has state, followed by CDC reported number, and the number
adjusted by a factor of 10 for underreporting.
Total US
38,069 – 380,690
1. Pennsylvania 9,048 – 90,480
2. New Jersey 4,855 – 48,550
3. New York 4,314 (combined NYC & upstate) *43,140
4. Massachusetts 4,224 – 42,240
5. Connecticut 2,541 – 25,410
6. Wisconsin 1,894 – 18,940
7. Minnesota 1,805 – 18,050
8. Maryland 1,728 – 17,280
9. Virginia 1,539 – 15,390
10. Maine 1,201 – 12,010
11. Rhode Island 904 – 9,040
12. Vermont 710 – 7,100
13. New Hampshire 529 – 5,290
14. Delaware 435 – 4,350
15. Iowa 318 – 3,180
* Many counties (19 in 2014) in New York State investigated a sample of
positive laboratory results. The number of Lyme cases was then extrapolated
to generate estimates of the total number of cases in that particular
county. The CDC says it cannot publish averages, thus many counties in NY do not have their numbers reported out by CDC. The LDA does not know how many NY counties in 2015 are contained in the CDC numbers above.
http://www.ecowatch.com/cdc-corruption-robert-kennedy-jr-2096438139.html
CDC Scientists Expose Agency Corruption
Robert F. Kennedy, Jr.
EcoWatch
Nov. 21, 2016
Last month, The Hill published a letter
http://thehill.com/blogs/pundits-blog/healthcare/301432-the-cdc-is-being-being-influenced-by-corporate-and-political sent by “more than a dozen” senior Center for Disease Control (CDC) scientists charging the agency with nursing an atmosphere of pervasive research fraud.
The group, which claimed to represent scientists across the CDC’s diverse branches, calls itself SPIDER (Scientists Preserving Integrity, Diligence and Ethics in Research). The letter to CDC Chief of Staff, Carmen Villar, expressed alarm “about the current state of ethics at our agency.” The scientists complained that “our mission is being influenced and shaped by outside parties and rogue interests” and “circumvented by some of our leaders.”
The scientists told Villar that, “questionable and unethical practices, occurring at all levels and in all of our respective units, threaten to undermine our credibility and reputation as a trusted leader in public health.” The letter charged that staff level scientists “are intimidated and pressed to do things they know are not right,” and that, “Senior management officials at CDC are clearly aware and even condone these behaviors.”
The scientists cited several recent scandals involving scientific corruption at CDC.
• They describe a “cover up,” by officials, of mismanagement in CDC’s Wise Woman Program, which provides screening in low income neighborhoods for heart disease, diabetes and other chronic health disorders. According to the letter, CDC officials purposefully misrepresented screening numbers in documents they sent to Congress to conceal failures in the multimillion dollar project. “… definitions were changed and data ‘cooked’ to make the results look better than they were.” The scientists accused high level CDC bosses of suppressing the results of an internal review, involving staff across the CDC, “so media and/or Congressional staff would not become aware of the problems.” As part of the systematic cover up, CDC then engaged in a coordinated effort to “bury” these deceptions. “CDC staff has gone out of its way to delay FOIAs and obstruct any inquiry.”
• The scientists also complain about the “troubling” adventures of Dr. Barbara Bowman, director of CDC’s Division for Heart Disease and Stroke Prevention, and Dr. Michael Pratt, Senior Advisor for Global Health at the NCCDPHP. Bowman recently left the CDC following shocking media disclosures that the pair had manipulated scientific studies on soft drink safety in collusion with Coca Cola. The CDC flimflam was part of Coke’s campaign to pressure the World Health Organization to relax guidelines for sugar consumption by children in developing nations where the soda industry is aggressively expanding its markets.
The scientists complain that the “climate of disregard” at CDC puts “many” agency scientists in difficult positions. “We are often directed to do things we know are not right.” The public record supports SPIDER’s allegations that scientists who insist on research integrity suffer persecution by CDC supervisors.
• On Sept. 27, the Office of Special Counsel, an independent federal investigative and prosecutorial agency, announced further investigation of corruption in the agency’s Zika testing program. That investigation arose from disclosures by laboratory chief Dr. Robert Lanciotti, supervisor of the CDC’s prestigious Fort Collins, Colorado lab, that his CDC supervisors were deliberately using a Zika test that agency officials knew would underestimate the number of Zika cases nationwide by some 40 percent. Dr. Lanciotti initially raised the issues internally at CDC and in an email to state public health officials in April 2016. In May, his CDC supervisor responded to this boat rocking by demoting Lanciotti to a non-supervisory position within his lab. Dr. Lanciotti filed a whistleblower claim alleging that his punishment was retaliation for his disclosures. After its initial investigation, the U.S. Office of Special Counsel forced the CDC to reinstate Dr. Lanciotti as lab chief.
• In a 2010 scandal that predated the Flint, Michigan tragedy, Congress found that the CDC had deliberately manipulated scientific documents and purposefully made inaccurate claims about the safety of Washington, DC drinking water in order to mislead DC residents into believing that their water was safe. The congressional committee found that the CDC’s deceit had caused thousands of DC residents to drink water highly contaminated with lead for years to the detriment of their health. As with the Coca Cola and Wise Woman Program scandals, the immediate victims of CDC scientific fraud and mismanagement were disproportionately poor and minority.
• In August 2014, CDC senior vaccine safety scientist, Dr. William Thompson, invoked federal whistleblower status and testified to Congressman William Posey that his CDC supervisors had ordered him to destroy data and manipulate studies to conceal injuries to black children from certain vaccines. According to Thompson’s testimony to Congressman Posey, data analyzed by Thompson and a team of scientists for a key study showed that black boys who received the MMR vaccine on schedule, had a 250% increase in autism diagnoses. The data also pointed to the vaccine as a culprit in the epidemic of regressive autism in both white and black children. A high level CDC official, Dr. Frank DeStefano, ordered Thompson and his fellow scientists to destroy that data in a large garbage can and omit the damning findings from the published study. That study has been cited more than 110 times in published studies on PubMed, and forms the cornerstone of the CDC’s orthodoxy that vaccines don’t cause autism.
• One of the key figures in the cover up described by Dr. Thompson is the Director of the National Center on Birth Defects and Developmental Disabilities, Dr. Colleen Boyle. Boyle’s seminal career coup at the CDC was orchestrating the cover up of Agent Orange and dioxin toxicity in the 1970s. Boyle’s handiwork deprived thousands of Vietnam veterans of health benefits until her fraud was uncovered and exposed in comprehensive investigations by Congress and the Institute of Medicine (IOM). Instead of punishing Boyle for corruption and scientific fraud, the CDC rewarded her with a powerful directorship. From that platform, Boyle has managed the CDC’s cover up of the vaccine-autism connection.
The recent SPIDER letter highlights the culture of deep-rooted scientific corruption that has metastasized across CDC and become the subject of a decade- long parade of investigations.
• On Aug. 23, 2000, following a three year investigation, a House Government Reform Committee staff report criticized the U.S. Food and Drug Administration (FDA) and the CDC for routinely allowing scientists with conflicts of interest to serve on two influential advisory committees that make recommendations on vaccine policy. The report concluded that, “the majority of members of both committees have financial ties to vaccine manufacturers or hold patents on vaccines under development.”
• Three years later, a 2003 investigation by UPI’s Mark Benjamin found that CDC had ignored Congress’s recommendations for reform, which stated: “Members of the CDC’s Vaccine Advisory Committee get money from vaccine manufacturers. Relationships have included: sharing a vaccine patent; owning stock in a vaccine company; payments for research; getting money to monitor manufacturer vaccine tests; and funding academic departments.”
• A year later, in May of 2004, Special Counsel Scott Bloch, of the U.S. Office of Special Counsel, sent a letter to Congress urging congressional action on evidence of scientific fraud in the CDC’s vaccine division. Bloch described possible collusion between CDC officials and pharmaceutical companies to manipulate and destroy data in order to conceal the links between mercury-preserved vaccines and the exploding incidence of pediatric neurological disorders including autism.
• A month later, on June 18, 2004, Congressman Dave Weldon, MD took to the House floor to accuse CDC of failing to reform: “A public relations campaign, rather than sound science, seems to be the modus operandi of officials at the CDC’s National Immunization Program.” Congressman Weldon concluded that, “The CDC is too conflicted to oversee this vaccine safety function.”
• In January 2006, amidst the corruption scandals, the prestigious journal Nature editorialized in reference to vaccine safety that, “there is a strong case for a well-resourced independent agency that commands the trust of both the government and the public.”
• A year later, in 2007, Weldon and Democratic Congresswoman Carolyn Maloney introduced the Vaccine Safety and Public Confidence Assurance Act of 2007, a bill to create a new agency to supervise vaccine safety that reported directly to the Secretary of U.S. Department of Health and Human Services (HHS) and to mandate independent vaccine safety research. Weldon declared that, despite all the scandals and investigations, there were no signs of reform at CDC. “Federal agencies charged with overseeing vaccine safety research have failed,” he said. “They have failed to provide sufficient resources for vaccine safety research. They have failed to adequately fund extramural research. And, they have failed to free themselves from conflicts of interest that serve to undermine public confidence in the safety of vaccines.”
• In June of that year, U.S. Sen. Tom Coburn, of the Senate Subcommittee on Federal Financial Management, published “CDC Off Center,” yet another lengthy exposé of corruption and mismanagement at CDC. The report detailed “how an agency tasked with fighting disease has spent hundreds of millions of tax dollars for failed prevention efforts, international junkets, and lavish facilities, but cannot demonstrate it is controlling disease.”
• In December 2009, the HHS Inspector General published the results of a lengthy investigation of corruption in the CDC’s vaccine division. That shocking report painted the CDC as a hopelessly corrupted arm of the pharmaceutical industry. It described, in detail, mismanagement, dysfunction and the alarming conflicts of interest that suborn the CDC’s research, regulatory and policymaking functions. The report discloses how CDC allows vaccine industry profiteers to make millions of dollars by serving on advisory boards that add new vaccines to the schedule. In a typical example, Dr. Paul Offit, in 1999, sat on the CDC’s vaccine advisory committee and voted to add the rotavirus vaccine to CDC’s schedule, paving the way for him to make a fortune on his own rotavirus vaccine patent. Offit and his business partners sold the royalties to his rotavirus vaccine patent to Merck in 2006 for $182 million. Offit told Newsweek, “It was like winning the lottery!” HHS investigation revealed that 97% of CDC’s scientific committee members failed to complete the mandatory conflict of interest disclosures and that as many as 64% of committee members disclosed conflicts of interest that were not acted upon by the CDC.
• In 2014, the chief of the HHS Office of Research Integrity (ORI), David Wright, announced his resignation in a scathing letter that characterized HHS as a remarkably dysfunctional agency. ORI’s function is to monitor research misconduct including, “falsification” and “fabrication” of science at the CDC, FDA and other public health agencies. Calling the post, “The very worst job I’ve ever had,” Wright decried an “intensely political environment” where his supervisors told him that his job was to be a “team player” and “to make my bosses look good” and where he spent “exorbitant amounts of time in meetings and in generating repetitive and often meaningless data and reports to make our precinct of the bureaucracy look productive,” rather than pursuing its mission of detecting and punishing scientific fraud.
Given this long history of deeply entrenched scientific chicanery at the CDC, it’s no surprise that scientists are now complaining. If Donald Trump is sincere about his promise to “Drain the Swamp” in the federal bureaucracy, he should begin by appointing an honest and able CDC director who can restore transparency, credibility, robust science and regulatory independence at the agency and who will turn around the culture of corruption that has been so damaging to children’s health.
Robert F. Kennedy, Jr.
Robert F. Kennedy, Jr.’s reputation as a resolute defender of the environment stems from a litany of successful legal actions. Kennedy was named one of Time magazine’s “Heroes for the Planet” for his success helping Riverkeeper lead the fight to restore the Hudson River.
