Lucy Barnes
Talking with people about "Incentives" and "Output" and "Outcomes" for improving our situation is sweet, but unless the problems are addressed full force and head on, those doing the talking will be fighting to basically sustain the status quo. This will allow the Lyme wars to drag on with no end in sight.
If that happens, all of us will be resigned to watching the process, just as Monday night football spectators do, with no input, no room for changes and no advancements, while more and more people become ill and suffer. Enough!
*%(*&^$- If you are going to eat a cookie, EAT A COOKIE!
If you are going to do something right, DO IT RIGHT!
After THREE decades of all of us fighting and compromising we've made some progress, but so much more is needed. And now is the time! We have the science, the sheer force, the ear of those in power, the monstrous size of the community and the desperate need.
To protect the public, the patients and the health care professionals involved we need to be doing a really rowdy Peppermint Twist or some other serious foot-stomping clogging moves, not a meandering Tennessee waltz around the nit-wits and the major problems facing so many.
Here are some suggestions for how to make much needed, serious, positive changes for the better.
After all, we don't need left over crumbs the CDC & IDSA toss our way, or their stinky do-nothing attitudes any more.
If you are going to ask for something,
ASK FOR SOMETHING BIG!
Reporting
Positive cases will be determined by lab reporting using each labs in house criteria. Doctors won't be required to report cases and health department employees will no longer have the ability to discount cases for one reason or another.
The final local and state figures will be increased by 50% based on the lab test results to take the place of cases where no tests were performed (a growing trend).
No more long forms, no more probable cases, no more funds to state and local health departments for employees completing forms, etc. All data goes to central data base and the task of presenting it will go to (one rep from each state) that is a Lyme patient.
Endemic is any state where 1 cases of Lyme has been reported in the past.
Ditch the surveillance criteria totally and announce it has been done and is no longer valid on all government websites. Take the job away from the CSTE.
Prevention
Spray, bait boxes, warning signs & handouts along high use areas in schools, public parks, forests and wildlife sanctuaries in top 25 endemic states. Repellents will be offered (free) in all public buildings within those places for employees and visitors. In 3 years the other states get the same thing.
Tick removal tool and info packets, and prevention packets with repellents and info to those requesting them for free will be distributed. These packets will be assembled by Lyme patients in need of work and they will be paid 2 x that of the current minimum wage.
Public announcements for tv, radio, internet that are designed by already established Lyme related organizations that cater to chronic Lyme patients. All stations, public media outlets will be required to air the announcements 5 times per week for 5 years.
Brochures for Red Cross, Salvation Army, sheriff’s offices, aging agencies, power companies, meals on wheels, phone companies, and all outdoor working professions.
Testing
All labs must have note that only 74.5% of those infected have a positive tests- clear large lettering in red at top and bottom of all pages.
All bands will be reported on all tests (with references to meaning).
ELISA doesn’t have to be done. Doctors can pick and chose what test they want to order.
A standard TBD panel will be offered for any patient that has been in an area endemic for ticks and diseases they carry.
Training
Standardized form for all patients of TBD to explain the differences in treatment protocols when going to doctors offices and hospitals. ALL doctors offices will use them.
Hospital training for all employees.
Require CME courses for all doctors on all TBDs that offer both views. Patients must go to “certified” doctors for treatment.
All licensed health care professionals must have educational literature in plain view in their patient waiting areas at all times. Stand to hold brochures will be hand crafted by Lyme patients in need of work- 2 X minimum wage.
Studies
25 doctors from 25 states will be provided a free research analyst to review patients charts in office 4 x year for two weeks each quarter (their choice of picks), to enter stats and treatment info into a computer program to determine how many cases, what is working and what isn’t. Once a year, by June of the following calendar year, a report will be generated combining the findings state by state and nationally, and they will posted publicly.
All NIH and other government grants will NOT go to any previous grantee for a period of 20 years. That money (average for past 25 years spending) will be used to pay for this initiative.
A new online journal will be government funded and it will be specifically for publication of any and all TBD disease studies. No IDSA/CDC allowed to submit.
Medical Treatment Guidelines
Panel of 10 members (treating doctors, scientists, researchers only) each from both sides (both sides pick their own 10 people and no government employees in group) on panel to develop practical treatment guidelines for tick bites, early Lyme and chronic Lyme and TBD. Deadline 1 year to completion. Include 10 additional patient and organization reps, making total of 30 people. All patients must have experienced chronic Lyme and TBD themselves and/or have family members with chronic Lyme (more than 6 months). No IDSA guideline authors allowed. Those will be the only guidelines.
CDC & Insurers, no more consulting with IDSA guideline authors. All profits from patents CDC and IDSA guideline authors receive will go to non profit Lyme organizations for research, education and patient support. These funds will be divided into 50 state lots, based on population figures.
Schools teach about ticks and Lyme disease in every grade from K-9. Standardized powerpoint or video program, or on TV.
Patients Needs
Chronically ill patients will be provided an in-state trained (by LymeDisease.org) patient navigator free of charge, who has been certified by completing and passing LDA developed training and a test. (IDSA doesn’t do “chronic”) Lyme patients will be offered jobs (2 X minimum wage) to do this work while they are being treated.
All of the items discussed and info will be available in multiple languages and access to it will be free by way of online website.
An online doctor referral system will be offered listing health care professionals in all fields in all states with the years of experience and list of all training related to TBD that they’ve had.
Costs For Initiatives
No vaccine funding next 10 years (waiting for accurate tests to have trials), then renewal considered.
Insurers, no exceptions, pay for treatment- with patient automomy the rule.
TIP- Leave test development demands off your "Wish List" and let free market compete.
TIP- Leave FDA out of any processes due to the corruption power by Auwaerter at Hopkins, the IDSA/CDC and other seriously questionable members on the approval and review panels, and to prevent CDC from delaying the need-to-move-forward process by years while they come finish developing tests and securing patents to profit from in the future.