TOUCHED BY LYME: Requiring CDC to use its Lyme funding effectively?
“Performance indicator” is a business term. It’s basically a way to measure how well an organization meets a key objective.
In Congress, performance indicators can be tied to funding. If an agency gets taxpayer money to accomplish something, it’s supposed to show that it’s using the money productively.
Guess what? There have never been any meaningful performance indicators attached to Lyme disease funding for the CDC. (Seems like a pretty big oversight, yes?)
Now, a bipartisan group of lawmakers wants to change that. In a letter recently sent to Acting Health and Human Services Secretary Eric Hargan, they state:
“These indicators will help Congress better understand the impacts of tick-borne diseases and the effectiveness of agency programs for surveillance, prevention, and control. These indicators will also help improve health outcomes for patients impacted by this rapidly growing epidemic, thereby reducing the burden on our economy by reducing health care and disability costs.”
They want these indicators included in the CDC’s Fiscal Year 2019 Congressional Justification. This is a document that outlines the goals and objectives of the coming fiscal year.
Here are the indicators these legislators would like to see for Lyme disease:
(]) Decrease the incidence of Lyme disease in the United States.
(2) Reduce the average time between onset of symptoms and diagnosis of Lyme disease.
(3) Increase the number of tests performed for Lyme disease that can confirm the presence of infection.
Spelling out strategic objectives
In addition to these performance indicators, the group recommends including the following strategic objectives for tick-borne diseases:
- Increase collaboration between HHS agencies and state and local health departments to prevent and control tick-borne diseases.
- Promote the development of innovative diagnostics and treatments for tick-borne diseases and co-infections.
- Increase research aimed at controlling or reducing the population of ticks and reducing their ability to transmit disease.
- Increase research on methods of prevention for stopping the transmission of tick-borne diseases to host reservoir animals and humans.
- Promote personal protection methods to prevent tick-borne diseases.
The letter was signed by the following members of Congress:
Rep. John Faso (R-NY), Rep. Scott Peters (D-CA), Rep. Elise Stefanik (R-NY), Rep. John Katko (R-NY), Rep. Grace Meng (D-NY), Rep. Dan Donovan (R-NY), Rep. Claudia Tenney (R-NY), Rep. Collin Peterson (D-MN), Rep. Barbara Comstock (R-VA), Rep. Ryan Costello (R-PA), Rep. William Keating (D-MA), Rep. Sean Patrick Maloney (D-NY).
The letter is a request from these legislators. It’s up to HHS to decide whether or not to include these items in the Congressional Justification. Still, it’s progress that 12 representatives from both parties have come together to ask for this.
This development came about via the collaborative efforts of Lyme advocates, painstakingly working behind the scenes to educate members of Congress and their staffs about the needs of our community. It’s an ongoing process.
Read the letter sent to HHS Secretary Hargan
Read press release from Congressman John Faso’s office
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org
Drug addiction…. a disease, treatment paid for by all insurance! Drug addiction…. a disease, treatment paid for by all insurance!
Tick Borne Illnesses…. made up in our heads because we need pity and we seek attention!?!?
CDC needs to recognize chronic Lyme disease. This is my third year to be diagnosed with lyme…that is chronic. Until CDC makes that recognition, most insurance won’t pay for treatment. Bettye Jones
John & other house reps listed above,
Thank you all for taking the above action on behalf of over 1 million tick-borne patients who are CHRONIC; many of us for decades vs. months or years. Hundreds of thousands are NOT correctly diagnosed nor treated.
We look forward to productive meetings in the future to change our lives of what we go thru and the prevention of others being bitten!
I’ve had chronic lyme disease 48 years this christmas; 35 yrs. misdiagnosed by 40-50 drs; unacceptable.
My late husband, Jack Gordon’s brain autopsy made WORLDWIDE HISTORY 11.22.2015 showing he had 2 diseases NEVER found together before in an autopsy:
LYME diseaes and LEWY body dementia causing visual & very VIOLENT hallucinations like actor Robin Williams had.
They also found a filarial nematode parasitic worm that also had Lyme disease; another major discovery.
I’ve looking forward to his case being written and PUBLISHED in a scientific journal in the future to make all aware of this and helping other families as myself.
The above autopsy was performed by Dr. Alan MacDonald, now retired FT in Florida.
Our heartfelt thanks to all of you above for caring about our health and others! God bless you all.
Betty Gordon
Iowa Lyme/Lewy body dementia activist
I posted the above on John’s house rep. site. fyi
Betty, thank you for your comment. However, I would like to add that there are many more than a million Lyme victims in the United States alone. There are probably that many new Lyme victims each year. There are probably 100 million Lyme victims already in the US alone. I would guess there are at least a billion victims at least in the world.
“Decrease the incidence of Lyme disease in the United States”
CDC has done this by restricting the disease definition
only to certain states
that needs to stop
I’m retired and a lot of my $$ goes to my daughters medical expenses.She was finally diagnosed with lyme 15 years ago after being mis- diagnosed for 8 years. I paid to get that completed out of my pocket. She worked for years and it took going to California from Nevada to get that accomplished …can’t believe we still do not provide for our USA citizens with medical who have worked years. Never planned on my retirement $$ to get medical for my child in her 50’s!!!
We can not solve our problems by the same thinking we used to create them !
The struggles and expenses we go through with lyme disease are outrageous and unacceptable. Lyme has four different forms and it mutates and hides. The co-infections are very dangerous pathogens. We have to search for lyme literate doctors and even they do not have all the answers. This is a very challenging disease that does not seem to go away. We need more research and attention given to this horrific issue.
You are doing a great job. The performance indicators look great. If there was more funding adding nationwide monitoring as was done in the past for mosquitoes carrying pathogens (at the time WNV) would be great. I expect the various species carrying pathogens causing tbd are much greater than some predict.
Glad to see California included, way to go Rep. Scott Peters. PLEASE be aware that the reporting for Lyme is drastically skewed out here and if money is on the line, the easiest way to decrese the incidence of Lyme in the country is to follow the California model – don’t diagnose Lyme! IF FUNDING IS LINKED TO REDUCING LYME PEOPLE WILL GET WORSE ABOUT REPORTING IT. Perhaps funding should be linked to the number of Lyme diagnoses, at least for ten years or so? The bigger the epidemic, the more money? The temptation to over diagnose might help sweep up some of the hundreds of thousands who were not diagnosed for the last several decades. Remember this – ticks can CATCH Lyme from people too! One untreated outdoors person can be the source of infection for dozens of ticks in a year. ‘ And they bit two friends, and they bit two friends, and so on…’
New York State destroys the health of it’s citizens by using a two-tier Lyme disease blood test (all other states have access to the western blot AND co-infections on first test). The result is MANY false NEGATIVES….so patients are told they don’t have it when they indeed do! Two weeks of oral antibiotics is a JOkE (a cruel joke). Whole families are suffering. Lyme literate doctors are viewed as quacks while other eras reap the financial rewards of treating “mysterious” symptoms unable to be properly recognized for what they really are-chronic Lyme disease and co-infections that cause diverse body wide suffering and deterioration including neurological damage (brain damage via spirochetes and cysts in the brain!). Spraying pesticides is NOT the answer either, so please don’t use the funding for that. Use it to give people the cardboard tubes with cotton stuffing laced with lyme killing agent that mice will take back to their nests. Rodents drive this not just deer. Give people money to keep their pets flea and tick free and to treat the Lyme if found positive….or else human families will continue to be reinfected by even flea bites of themselves and their pets. Why can our pets be properly diagnosed in NYS, but we humans are purposely misdiagnosed with the stupid two tier test? WHY? And how come insurance won’t pay for the desperately needed IV antibiotics for those of us with long term chronic suffering from untreated Lyme AND CO-INFECTIONS ( like Babesia, Bartonella, mycoplasmas, etc)? Repeal the blasted public health law that is approximately 14 years old that prohibits NYS doctors from being able to order any specialty zed testing of NEW YORK residents. We have the right to know what is causing our symptoms so we can treat the causes. Keeping us sick only benefits the pharmaceutical companies. We are suffering. Even children are suffering. The information put out by CDC and public health is wrong. You don’t need to see a tick or get a bullseye rash…..we only need the right testing and insurance to cover our IV antibiotics, pick lines, and supplies while we get well. And please….start consulting and recognizing the brave doctors who are experts in diagnosing and properly treating Lyme disease I’m
Nstead of persecuting and mi king them. Use the funding to hire them to teach the rest of our doctors about the cause, course of disease, symptoms, chronic nature, and successful treatments. The Infectious disease doctors are woefully UN prepared to solve this because they are afraid of the FDA etc. This is truly a HEALTH FREEDOM issue. ALS MS and other neurological labels are being caused by the neurological destruction that untreated Lyme and co-infections cause (as well as metal, mercury, aluminum, and other chemical toxins). We appreciate legislators stepping up to bring help and proper use of funding to our aid in eradicating this rampant scourge.