Approx. 9 Min.
Monte Skall, executive director of NatCapLyme, interviews Jenna Luche-Thayer – ILADS 12-11-2017
§ discusses some of the concerns related to the newly forming ‘Working Group for Tick-Borne Diseases’ being implemented under the 21st Century Cures Acts
§ presents some of the impact of the work by the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes
To summarize, the following critical information is ON RECORD AT THE UNITED NATIONS:
( I.) Ten human rights violations against Lyme borreliosis (LB) or Lyme disease patients.
Human rights violations of Lyme and relapsing fever borreliosis patients include policies recommending practices that:
1. prevent proper diagnosis and treatment for many patients
2. promote discrimination based on illness manifestations
3. misapply defunct somatic diagnosis to deny medical care**
4. obstruct treatments based on illness manifestations
5. promote discrimination based on financial status
6. support attacks on human rights defenders —including medical practitioners, scientists and researchers who act on behalf of this vulnerable patient group
7. restrict information regarding treatment options
8. routinely exclude key stakeholders from decision-making venues —making them invisible to policy makers, economists and practitioners and researchers
9. sick children under treatment are forcibly removed from their parents
10. in certain countries, there have been alarming cases where euthanasia is offered in place of treatments that have meet internationally accepted standards —such treatments are obstructed and denied
**MUS has been repudiated by the APA and removed from the DSM.
( II.) Hundreds of peer reviewed publications identifying many previously ignored, serious and potentially fatal complications from LB are on record at the UN:
Congenital Lyme disease, persistent infection, Borrelial lymphocytoma, Granuloma annulare, morphea, localized scleroderma, lichen sclerosis and atrophicus, Lyme meningitis, Lyme nephritis, Lyme hepatitis, Lyme myositis, Lyme aortic aneurysm, coronary artery aneurysm, late Lyme endocarditis, Lyme carditis, Late Lyme neuritis or neuropathy, Meningovascular and Neuroborreliosis – with cerebral infarcts, Intracranial aneurysm, Lyme Parkinsonism, Late Lyme meningoencephalitis or meningomyelo-encephalitis, Atrophic form of Lyme meningoencephalitis with dementia and subacute presenile dementia, Neuropsychiatric manifestations, late Lyme disease of liver and other viscera, late Lyme disease of kidney and ureter, late Lyme disease of Bronchus and lung and seronegative and Latent Lyme disease, unspecified.
( III.) Tens of thousands of chronic LB patients have been successfully treated with longer term care that meets internationally accepted standards … so that they may live, have a decent quality of life and be productive.
https://www.linkedin.com/pulse/commentary-21st-century-cures-act-working-group-lyme-luche-thayer/ by Jenna Luche-Thayer, Nov. 14, 2017
Commentary: 21st Century Cures Act ‘Working Group for Tick-Borne Diseases’ & Lyme Patient Human Rights
Dr. Richard Wolitski, Director of the HHS Office responsible for the 21st Century Cures Act Tick-borne Disease Working Group, addressed participants at the International Lyme and Associated Diseases Society (ILADS) annual scientific conference, held in Boston November 2017.
During his presentation, Dr. Wolitski outlined the Working Group’s ‘plan for dialogue with the larger community, operating procedures and goals’. Based on my experience with federal government, here follow some observations on the subject.
Tick-borne Disease Working Group
Transparency, Representation and Accountability Concerns
As I understood Dr. Wolitski, the plans and procedures are viable regarding the main Working Group. I say this because there will be some members on the Working Group who recognize chronic and complicated cases of Lyme.
However, it is by no means a fair representation from the perspective of the human rights abuse on record at the United Nations (UN). Skills to represent and integrate this record of human rights abuse should be part of the Working Group’s capacity.
According to Dr. Wolitski, the subcommittees will be made up of the ‘true experts’ who will then forward their recommendations for review by the Working Group. Therefore, the undermining of the somewhat fair representation of the main Working Group can be easily achieved due to the lack of required representation and transparency that may shape the multiple ‘subcommittees’.
According to Dr. Wolitski, the true experts will work on the various subject-specific items listed on the Working Group’s agenda. In other words, it will be the sub-committees that do the ‘expert reviews’ of the diagnostic tests, the guidelines and the science informing the Working Group’s decisions.
In this case, the subcommittees will have significant power to shape the outcomes of the Working Group —for example, a strong bias can come out of any one of these subcommittees leaving no ‘expert-researched’ alternatives for the Working Group to discuss. In this case, the Working Group may feel pressure to choose from ideas that are biased and opinion-based rather than relevant and diverse ideas. For example, choose between similar opinions A1, A2 and A3 rather than the criteria that is met by A, B, and C.
Regarding transparency, the Working Group meetings are to be videoed and probably live-streamed. In contrast, Dr. Wolitski said that the subgroups meetings’ minutes and discussions might not be videoed or shared … with either the Working Group or the public. Dr. Wolitski indicated that costs may be the reason for this lack of transparency.
This lack of transparency on the subcommittees is very concerning, particularly given:
§ there is no requirement to have representation of patient realities with persistent and complicated forms of LB on the subcommittees
§ the continued ignoring or suppression by the CDC of the hundreds of peer reviewed publications that describe the many serious and potentially fatal complications caused by LB
§ the CDC’s impunity with regards to breach of federal law —breaches include: collusion with and preferential promotion of one medical society’s outdated LB guidelines and attacks on viable diagnostic technologies that compete with patents of (unreliable) diagnostics held by CDC officials
§ the NIH’s impunity with regards to formally filed complaints that show inexcusable breaches in research ethics —breaches include: allowing certain grantees to misuse over 30 million dollars to support publications that fail all grant objectives and are filled with slander, slurs and defamation such as Lyme patients and their human rights defenders are dangerous, anti-science, nefarious, to be pitied, delusional, promoters of fake news, undeserving of engagement with policy makers and undeserving of medical treatment for persistent infection
I have participated in a number of federal working groups —some have been very task oriented to address a situation… and others are formed more to ‘demonstrate political attention to a subject’ but don’t necessarily intend to change a situation. I have also participated in federal Working Groups that shared both kinds of objectives.
I have seen federal Working Groups set changes in motion, however, I can honestly say I have never seen a federal Working Group change reality. Changing reality requires many other state actors, political will, public support and agreement by special interests who were benefiting from the situation.
Furthermore, in my experience change does not occur when marginalized and abused people wait for others to draft their future.
Change happens when it is demanded — widespread public understanding and opinion must shift, almost every political and legal mechanism must be challenged and then used to correct injustice, and those responsible for and benefiting from the related human rights abuses are named, shamed and removed from positions of influence.
In the next few days, I will be posting a video named Addressing Systemic Obstacles in the Borreliosis Pandemic. This video shows the full presentation given to an international audience of over 700 medical and scientific professionals concerned with the Lyme and relapsing fever borreliosis pandemic and other tick-borne diseases at the Boston ILADS Conference. Every one of us concerned with this pandemic can use the information in this video to make change. Its content can help to require accountability from our government officials, elected officials, legal systems and medical systems.