The Tick Bytes Clinical Data Repository is an initiative to organize clinical information from the ten best tick-borne disease physicians across the nation within a privacy-protected database, enabling researchers to analyze and publish best practices for treating patients.

With this precision medicine approach, more quality evidence will reach physicians, insurers, and the government, leading to better patient outcomes, insurance coverage, and a deeper understanding of tick-borne diseases.

Based on prior work by Dr. Nevena Zubcevic and Dr. Charlotte Mao at the Dean Center for Tick Borne Illness in Boston, it’s anticipated that it will take 12 months for database set-up, and 24 months for data collection, analysis, and publication. To move forward, all we need is funding from people like you. Please help us launch this important initiative.

A new survey of 155 Lyme doctors who treat patients with persistent and chronic Lyme disease reveals the significant challenges to providing patient care that is local, timely, and affordable, published in the journal, Healthcare.

Analysis shows that a primary barrier to affordable care is an insurance reimbursement system that doesn’t acknowledge the time and real costs associated with treating complex, chronic diseases. A secondary barrier is the professional stigma associated with treating chronic Lyme disease, a disease where persistent symptoms are often dismissed as “all in the head” and where the use of long-term antibiotics—even when necessary—are demonized by the medical system. Many Lyme-treating physicians are subjected to investigations by state medical boards, insurers, and hospital committees, pressures that result in physicians leaving this specialty. A shocking three-quarters of the physician-respondents have been treated disrespectfully by professional colleagues because they treat Lyme patients.

Authors Lorraine Johnson, JD, MBA, of MyLymeData, and Elizabeth Maloney, MD, Invisible International’s Education Co-director, both veterans at exploring solutions to the Lyme disease problem, explain the impact on patients here:

“Because the traditional economic model of medical provider compensation relies heavily on insurance coverage and working in-network, when clinicians opt out of the insurance model, it shifts the economic burden of care to patients.”

Zoonotic diseases are transmitted between animals and people and can impact health, livelihoods, and global health security. A One Health approach is necessary to address such complex heath threats at the human-animal-environment interface. In 2019, the Tripartite organizations – the Food and Agriculture Organization of the United Nations (FAO), the World Health Organization (WHO), and the World Organization for Animal Health (WOAH) – developed the Tripartite Zoonoses Guide (TZG), to provide guidance and explain best practices for addressing zoonotic diseases in within countries.

This coalition has just released two tools to facilitate these efforts within countries, which include models for standard operating procedures and processes, data collection and reporting templates, and other practical resources. These include:

• The Multisectoral Coordination Mechanisms Operational Tool, supporting national authorities to establish or strengthen their mechanisms for coordination across groups.

• The Surveillance and Information Sharing Operational Tool, supporting national authorities to establish or strengthen their coordinated, multisectoral surveillance and information sharing across groups.
  

Invisible International supports this initiative as a way for the world to respond more effectively to animal-human disease threats, because diseases like Lyme and Bartonellosis don’t respect borders.

The filmmakers behind the latest documentary on Lyme disease have launched a Lyme disease awareness campaign that we can all participate in. Here are a couple things you can do to get the word out about the tick-borne disease epidemic and request more research funding from Congress:

Action #1: Sign up to host a community screening in 2023

Educate and activate your local press, policymakers, medical professionals, school teachers, friends, family and more by hosting a screening and optional panel discussion.

Action #2: With one click, send a pre-written letter to Congress

For decades, federal funding for Lyme and tick-borne diseases has gone to the same scientists who have not produced benefits for patients. Right now, you can send a letter to Congress with a simple demand: research funding must be given to new scientists who will advance the field. You also have the option to add a personal story.

Anyone who has lived through a serious case of Lyme disease has probably experienced true despair and hopelessness. In the eyes of the medical system, you are invisible. Invisible International’s team is dedicated to righting these wrongs, by delivering the best diagnostic and treatment evidence to the frontlines of medical care. As we learn how to break through the walls of ignorance, we humbly offer up some ideas on how individuals can save lives from the plague of chronic Lyme disease and other tick-borne diseases.