I was encouraged at the Tick-Borne Disease Working Group meeting to write all concerns to the following email address, firstname.lastname@example.org.
I BELIEVE in democracy, and in one new member this year. I was very impressed particularly with Commander Rebecca Bunnell, who is on the federal side.
She is a Senior Advisor at CMS (Medicare and Medicaid). I spent some time talking with her and she is genuinely pushing for a PATIENT CENTERED TBDWG! I believe she has a very powerful impact potential for patients.
This is, I believe where we need to focus as patients and activists. Once Medicare and Medicaid approve covering a treatment and recommended tests etc., the private sector (insurance!) usually will pick up and follow, historically. That’s our goal is better tests, treatment, and insurance coverage.
Here is a sample letter you’re welcome to copy, paste and share in your groups. Add your name at the bottom, take mine off, and email it off to the TBDWG.
DON’T UNDERESTIMATE WHAT YOUR IMPACT CAN HAVE! THINK ACTUP! from the AIDS fight for medical justice. Lyme advocates are involved, strategic and TOGETHER WE CAN do this!
TO WHOM IT MAY CONCERN,
The Lyme and associated diseases community are pressing for a congressional hearing on the mishandling of Lyme disease of the leadership of NIAID, NIH, CDC and HHS.
We will continue our efforts from across the globe until our demands are met for quality diagnostics, guidelines for treatments that work, and insurance coverage for effective treatments.
We have organized information chronologically from when the CDC took over in the late 1980’s until current time. This revealed inadequate studies were at the source of ineffective guidelines to patient’s detriment and in contrast, to develop a vaccine.
We need funds for research on infection persistence, with special attention be given to drug studies that consider the following:
1.The unusually long replication cycle of the organism
2. Borrelia’s stationary growth pattern, which allows for the formation antibiotic tolerant persister cells, once the stationary phase is reached
3. The tropism of the organism
4. The varied abilities of medications to pass the blood-brain-barrier
5. The formation of biofilm colonies that prohibit medication accessibility
6. The ability of the organism to compromise the immune system, likely necessitating the complete eradication of the organism from the body
7. The non-cultivability of the organism, once it experiences, even a limited exposure to an antibiotic
Advocates around the world are outraged by the conflicts of interest allowed at the table so far, including and especially Dr. Shapiro. We now have almost 23,000 signatures on our change.org petition written by Dorothy Leland of Lymedisease.org requesting his removal from the TBDWG.
Lyme patients worldwide DEMAND he be removed immediately!
Electing him is no approach to a “fair and balanced” working group makeup. He has proven to be against patients’ needs year after year. Another assessment by Mrs. Leland is at this link https://www.lymedisease.org/shapiro-tbdwg/.
As a result of this groups history, public participation has been poor, and faith never established. Allowing IDSA to continue to keep their admission of Shapiro’s appointment on the Tick-Borne Disease Working Group two weeks prior to what the public saw violates your transparency goals outlined in your charter, among many other violations.
IDSA publicly made a shocking omission on their website that they disagree with the TBDWG recommendation to Congress for insurance coverage for Lyme patients. The TBDWG was formed for the patient group not IDSA, correct? This is blatant medical discrimination violating our dignity and human rights. Would they say this about a child with cancer?
We ask the following:
A congressional hearing on the mishandling of Lyme from 1980 to current.
IDSA trained Dr.’s should be denied a place at the table until they prove to incorporate a patient focus to reinforcing the medical human rights of Lyme patients. The WHO’s constitution states that every person has the RIGHT to their best attainable health.
It’s the obligation of the TBDWG to make that happen.
Every member on the TBDWG who has conflicts of interests need to step down, so the direction is squarely centered on the patients without a payday for players. All conflicts of interest of the TBDWG need to be fully disclosed and transparent to Congress and on public record.
We ask for a public announcement for the termination of the use of the term PTLD/PTLDS. It has no scientific backing and negates the user’s credentials immediately to the reader.
Lyme constitutes 80% of all Tick-borne diseases the CDC estimates, therefore Lyme should make up 80% of the subcommittees.
All pregnancies need tested for Tick-borne diseases right away, and ILADS guidelines the standard treatment allowed.
States need to require Doctors to be educated in Lyme and Tick-borne diseases before graduating medical school. It is shameful that didn’t happen out of the first meeting. AMA approved CME’s (Continuing Medical Education credits) offered at ILADEF.org need to become required immediately by all medical personnel.
We ask you protect our Dr.’s. No physician adhering to a reasonable protocol backed by peer reviewed studies should be under scrutiny or harassment by any medical board.
Dr Walker at meeting #9 posed the question,
“what caused the increase in Tick-born disease?”
The answer is in bioengineering the fertility, and force-feeding of pathogens to ticks admitted by government employee, Doctor Willy Burgdorfer for NIH. Per his own account and made public (BITTEN, by Kris Newby), this was the big turn for an increase in the tick population.
The government is responsible for fixing this epidemic today, starting with patients already infected.
Please respond to this email addressing my concerns outlined above and commit this to public record.
Kristina Bauer, Texas Lyme Alliance and GOTCHA, Global Oversight for Transparency against Corruption in Healthcare Alliance
While I agree with Ms. Bauer on most points, I am concerned that many of these action points could backfire against patients and doctors. It’s a very delicate situation.
Doctor protection laws have inadvertently put practitioners under the spotlight and they are being singled out and scrutinized more after the so called ‘protection’ than before it. Politics are often counter intuitive.
I’m concerned about the comment that 80% of the subcommittees should be singularly focused on Lyme disease. Many of the coinfections are not reportable diseases and there is absolutely no record of prevalence. In my opinion, the entire Lyme paradigm needs to shift from a singular entity into a far more complex, systemic illness often accompanied with other pathogens either directly transmitted by ticks OR that are reactivated via tick bite, vaccinations, or other assaults on the immune system.
In short, few have ‘just Lyme’ anymore.
Part of the current problem is the continued myopic definition of the disease.
Either Lyme has evolved into this complex monster, or it was always present yet under-appreciated. According to many ILADS trained doctors with decades of experience, coinfections weren’t as prevalent years ago as they are now. They admit it it used to be much simpler to treat.
Now, cases are extremely individual and complex.
This is where we can cut our nose off despite our face with legislation that continues to pigeon-hole this beast into something it’s not.
The longer I observe, the more I’m convinced we need to fund our own work to get to the bottom of the chronic/persistent issue as well as recognize concurrent infections, create proper testing that takes both these issues into account, find all the transmission modes, and effective treatments. Notice treatments is plural. The only box this fits into is Pandora’s.
The answers for some of these issues are going to be extremely individualistic. We should quit putting this into a 2-minute sound-bite and mandating a “specific” treatment to all or we will end up no better than we started.
Somehow we need to continue to allow Lyme-literate doctors to treat this appropriately without infringing upon their rights, while encouraging other doctors to become trained. The problem I see is we will never fit into a Western medicine paradigm and a 10-15 minute appointment. This complex disease is far too sticky. So, even if insurance covered it and mainstream medicine treated it, the entire formula wouldn’t work unless it’s a simple acute case. My first appointment with a LLMD was 90 minutes long and I filled out medical chronology going back to infancy. Do you seriously think medical monopolies are equipped for that kind of detail and introspection?