Declaration of 1000 Medical, Scientific, and Human Rights Leaders Demanding Changes to Address the Borreliosis Epidemic
The report UPDATING ICD11 Borreliosis Diagnostic Codes: Edition One was entered into record on June 7, 2017 by Dr. Dainius Pūras, the United Nations Human Rights Council’s Special Rapporteur for the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.
Therefore, it may be cited and quoted as a reference for many purposes including medical, scientific, legal, human rights, public health and economic analysis. It lays the medical, scientific, and human rights foundation for stakeholders to formulate and implement a comprehensive response to the global Lyme Borreliosis pandemic.
This approach is summarised in the declaration below and we ask for your recommendation as a medical professional, scientist or professionals in a relevant other field to endorse these actions.
*Declaration of 1000 Medical, Scientific, and Human Rights Leaders Demand Changes to Address the Borreliosis Epidemic*
We represent 1000 medical professionals, scientists, legal and human rights advocates from around the world. As such, we demand that key institutions responsible for public health and public welfare recognize and respond to the seriousness of the borreliosis epidemic.
We now provide these institutions the following solutions and state our willingness to help them meet these goals.
1. Provide public funding to improve borreliosis diagnostic tests, which are currently unreliable. There should be a portion of this funding set aside for new innovators.
2. Until such tests are available, honor, support and accept the clinical diagnosis of Lyme borreliosis.
3. Create enabling environments for multiple innovative diagnostic tests to compete with those patents and reagents held by the CDC and other institutions holding outdated patents.
4. Change the laws so that government institutions and officials responsible for promoting scientific and medical innovations cannot be patent holders in the same arenas of any competitor they review or access.
5. Modernize the WHO’s ICD codes for Lyme borreliosis to reflect the complexity and seriousness of the disease.
6. Modernize the WHO’s ICD codes for relapsing fever borreliosis.
7. Utilize the improved ICD codes to enhance the quality of borreliosis surveillance to:
- inform public health policy
- strengthen the ‘One Health’ synergy - to obtain optimal health of people, animals, and the environment
- understand and prepare for the impact of climate change
8. Official recognition of complicated and persistent Lyme borreliosis is required.
9. Official recognition of disability, including episodic disability caused by Lyme borreliosis is required.
10. Require national health systems and private insurers to recognize and provide treatment coverage for complicated and persistent forms of Lyme borreliosis. Qualifying treatments would include those that meet the international accepted standards such as the Institute of Medicine (IOM or US National Academies of science and medicine) 2011 criteria for evidence based guidelines development.
11. Stop the persecution of doctors who utilize clinical diagnosis and treatments that meet IOM criteria for Standards for Developing Trustworthy Clinical Practice Guidelines.
12. Penalize the slandering, libeling, stigmatizing and bullying of Lyme patients.
13. Make the differential diagnosis of Lyme borreliosis part of standard medical assessments in countries where the diseases have been identified. The lack of differential diagnosis is particularly problematic for certain groups – such as the elderly. For example, untreated Lyme borreliosis symptoms can mimic conditions associated with aging, e.g. arthritis, dementia and vision and hearing loss.
14. Honor patients’ rights to choose among all treatment options that meet internationally accepted standards and require medical professionals to inform patients of these choices.
15. Increase public funding for patient-centered research to improve diagnosis and treatments for borreliosis, other tick-borne diseases and co-infections.
16. In many countries, children are among in the highest risk groups for Lyme borreliosis. Organize collective attention as to how the long-term health of these children can be preserved and their lives advanced so that their potential and dreams will be fulfilled.
17. Require public schools and universities to develop plans to accommodate students learning and living with complicated and persistent forms of Lyme borreliosis.
18. Require public institutions to accommodate their employees living with this complex illness as well as ensure the delivery of their services to patients living with Lyme borreliosis
19. Engage private business and corporations in developing employer approaches to support employees who have debilitation or other limitations due to Lyme borreliosis.
20. Require that all standing governmental committees for borreliosis research and policy have patient and caretaker stakeholder representation.
If you are a professional concerned with the improper response to the global Lyme Borreliose epidemic, we ask for your endorsement for this action plan.
At this point in time we are not collecting from Lyme advocates or patients, as we are demonstrating that those concerned with borreliosis include a much wider group than Lyme advocates and patients. Although anyone who is an advocate in addition to being one of these professional categories is most welcome!
You can add you endorsement on this page.