Lyme Advocates Rally in DC Over Government Mishandling of Lyme Disease
MAY 14, 2019 —
FOR IMMEDIATE RELEASE
Contact: Mirenda Campirano
WASHINGTON, D.C. (May 13, 2019) — Lyme Disease patients with their families and friends from across the United States and Canada are converging on Capitol Hill in to convince elected officials to hold a formal investigation into the government’s mishandling of tick-borne diseases.
The group is gathering outside the Hart Senate Office Building on Friday, May 17, 2019. Three independent Lyme disease groups are banding together to lead the call.
Representatives of The Lyme Army centered in Texas, The Lyme Center of Martha’s Vineyard in Massachusetts and The Lyme Disease Foundation from Connecticut have scheduled appointments with elected officials to demand a comprehensive congressional investigation into the mishandling of this insidious disease by Health and Human Services and their divisions of the Centers for Disease Control (CDC), as well as the National Institutes of Health.
The day will culminate at Union Square with a candlelight vigil at 6 p.m. to commemorate those who have lost their lives to this horrific disease. A list of names of those who have died of and with tick-borne diseases will be read. A march to Health and Human Services (HHS) will follow.
Award-winning film producer, director, and cinematographer Andy Abrahams Wilson and another documentary crew will be there to film the day’s events.
Lyme and tick-borne diseases are not recognized by the CDC or the mainstream medical community because most Lyme patients do not meet the CDC’s current case definition, despite clinical symptoms and serologic evidence.
“Fraudulent testing criteria and an inordinately narrow case definition both promulgated by the CDC and Infectious Disease Society of America (IDSA), have led to the denial of this debilitating, incurable disease; thus, patients are left with little to no access to health care, inaccurate test results, no valid treatments, no insurance coverage, no disability insurance, and little funding for proper research,” said Mirenda Campirano, a registered nurse and advocate for those who suffer from Lyme. “We are passing these infectious diseases to our children. I know, because I gave it, along with several other tick-borne infections, to my son in utero.”
With the CDC now reporting 390,000 cases of Lyme annually, the implications of this statistic are devastating. In addition to the revised testing standards that are too narrowly defined, many Lyme strains do not test positive on the traditional ELISA or Western blot tests. This leaves millions of people infected with Lyme disease excluded.
Lyme and tick-borne diseases are not recognized as a legitimate disease and there is insufficient funding for proper research – research to elaborate more accurate criteria for laboratory testing as well as research to determine how best to treat this devastating illness.
The decision to delegitimize Lyme and tick-borne diseases have left patients’ lives in ruins as they lose their ability to work, their homes and their savings, become isolated from their family and friends, and ignored or by the mainstream medical community. Moreover, although the CDC is a United States based organization, its reach is global. Many countries that lack the resources the United States enjoys in the field of disease control look to the US for guidance. The CDC, HHS and IDSA are supposed to be the United States’ health protection agencies. They are supposed to save lives and protect people from health threats. Part of the CDC’s mission is to provide consultation and assistance to other nations to help assist in approving their disease prevention and control. Sadly, in the case of Lyme and tick-borne diseases, these agencies are withholding the truth of Lyme disease and failing citizens of the United States as well as the world at large.
ABOUT THE GROUPS:
The Lyme Army, led by Mirenda Campirano, RN BSN, is a grass roots activist group made up of individuals from across the globe fighting for truth and justice so that Lyme Disease patients can get the help they rightfully deserve. Her son contracted Lyme in utero, while she was infected. Campirano is actively working with Texas legislators to help provide pass legislation that will provide patients and doctors with more accurate Lyme testing and insurance coverage. She is also the founder of the Lyme Disease/Tick Borne Illness Group of the Rio Grande Valley, TX.
The Lyme Disease Foundation, Inc. is the first Lyme disease nonprofit in the world. It was co-founded in 1988, by a healthcare lawyer Karen Vanderhoof-Forschner, JD, LLM, BS, MBA, CPCU, CLU and a team of Lyme researchers and business people, to find the scientific truth about Lyme disease, in the hopes of saving her dying son’s life. Her son Jamie was born in 1985 and at birth had contracted Lyme in utero. He was multihandicapped from the disease. He died in 1991 during a relapse when his brain crushed itself. On autopsy the doctors found the Lyme bacterium in his optic nerve. More IV therapy was not better treatment because he died while infected. Jamie was unique because he had damage to the back of his eyes that proved he had damage from a congenital spirochetal infection.
Dr. Enid Haller is the Executive Director of The Lyme Center of Martha’s Vineyard, a free walk-in information service for Lyme and tick-borne diseases. Both Vanderhoof-Forschner and Haller are former member of the Tick-Borne Disease Working Group Subcommittee for Access to Care Services and Support to Patients. These three organizations called on their members and supporters to be present in the nation’s capital on May 17, 2019 to their members and supporters to be present in the nation’s capital on May 17, 2019 to walk the halls of Congress to demand a congressional investigation of the mishandling of Lyme and tick-borne diseases.
Visit The Lyme Army Facebook page, the Lyme Disease Foundation Facebook page, or The Lyme Center at Martha’s Vineyard.
While I won’t be there, I’m with you in Spirit!