NY lawmaker’s #GetTickedOff campaign against Lyme disease
Didi Barrett represents New York’s 106th Assembly District, which encompasses parts of Columbia and Dutchess counties. This op-ed first appeared in the Poughkeepsie Journal.
By Didi Barrett
Here’s an alarming fact: Tick-borne illnesses impact at least 300,000 Americans a year, yet receive less than $30 million per year in federal funding for research, while in contrast, Congress has appropriated $1.1 billion for research on the Zika virus, which affects less than 1,000 Americans, according to the Centers for Disease Control.
Here’s another: Columbia and Dutchess counties have the highest per capita rate of Lyme disease in New York State. And, New York has one of the highest rates of infection in the country, while appropriating only $469,000 this fiscal year on research for Lyme and other tick-borne initiatives.
Like you, I #GetTickedOff by facts like these, especially knowing how many friends, neighbors and family members in our communities are suffering with Lyme and other tick-borne diseases (TBD). Or were misdiagnosed over and over again. Or have put their lives on hold as they seek an effective treatment.
To increase awareness, educate the community, and galvanize advocacy for policies and funding to tackle this growing epidemic, my office has just launched a social media campaign that we have dubbed “#GetTickedOff”.
Our Facebook page #GetTickedOff acts as an online point of connection to share information about tick-borne diseases and provide updates on relevant legislation, education opportunities, new research and reporting from the field.
I encourage folks to “like” and “follow” our page to stay up-to-date on news, as well as use the hashtag #GetTickedOff on social media to help spread the word. Every week the Facebook page will share new “Reasons to #GetTickedOff”, with the goal of boosting advocacy efforts at all levels of government and make tick-borne diseases a public health priority.
Further, I have asked Gov. Andrew Cuomo to fund in the 2018-19 state budget tick warning signs at state parks and Department of Environmental Conservation sites, including trailheads and campgrounds. Dutchess County has similar postings at county parks, but signage educating visitors to New York’s state parks and recreation areas could be an important step in reducing the incidence of tick bites.
This legislation follows up on other Lyme and tick-borne disease bills I have sponsored over the past five years that support both patients and Lyme-literate doctors; provide students and teachers with age appropriate instructional materials; create guidelines to help residents keep ticks from their home; and study insurance policies around treatment coverage.
At the federal level, the new Tick-Borne Disease Working Group established by the 21st Century Cures Act met recently to review efforts related to TBDs and develop recommendations for a nation-wide response. Patients shared heart-breaking stories about the debilitating effects of their diseases. What was consistent in all their stories were the calls for improved testing, education and outreach.
Part of our #GetTickedOff initiative is a series of public educational forums on tick-borne diseases to be held in collaboration with local libraries. These discussions will draw from the expertise of our #GetTickedOff Advisory Board members, including well-known advocates Jill and Ira Auerbach; Dr. Richard Horowitz, a Lyme specialist from the Hudson Valley Healing Arts Center; Public Health Advisor Allison Kaufman from the Dutchess County Department of Health; Dr. Felicia Keesing, a biologist and tick specialist at Bard College; Dr. Kenneth Liegner, who has been combating Lyme Disease for a quarter century; Dr. Richard Ostfeld of the Cary Institute; Mary Beth Pfeiffer, author of “Lyme: The First Epidemic of Climate Change;” and Dr. Ananthakrishnan Ramani, an infectious disease specialist from Columbia Memorial Hospital in Columbia County.
So please join us if you, too, #GetTickedOff and want to help bring an end to this insidious epidemic.
The fact that so so little money goes toward an illness that affects so many people and has such devastating ill effects in people’s health, quality of life, social productivity and contributes to so much suffering in patients and family and loved ones alike speaks louder than any words could. It is nothing but healthcare malpractice and both an ethical and legal crime. What a slap in the face to so many of us who have lost loved one and have been devastated by Lyme disease and its complications! Shame on our government!
This has been going on for years and will continue to go on for years, unfortunately!
Phyllis Pastuzyn — Unfortunately, and unacceptably, I cannot help but agree with you. Yet I always hope. Can this abuse by the medical field go on forever? I have fought with all my energy and in as many ways as I can (no money), for the treatment I receive. I have found a few good doctors in conventional medicine. More precisely, maybe about 4 over the last 15 years. Their hands are tied so much, but these very few work within their very limited realm to do the best they can. I am so grateful to them. Yet even when I find a little success, I cannot seem to get treatment for others. We have to make our, so far small voices, heard. The louder we can scream in our own ways, the more the ground swell can be. If we can get a fever pitch going, we will be helping future generations. Just scream the loudest you can in your own little corner. Dorothy and others are the voices we hear, but our voices count too. I do all I can, even though laughed at by close friends and family to inform and let them know what is really going on. I only trust they are hearing enough to be forewarned themselves if they get struck down too. There are those who listen, even reluctantly. If we keep this up we can be successful even though it could and may take a very long time. And, it is all that we can do. I hope you and I are so wrong and that success for so many will come sooner than we think. Remember big shots are only little shots who kept shooting. We must continue to make our little shots for victims of this horrific disease.
Dear GMD, I REALLY WANT someone to tell me I am wrong! If there are truly 300,000 people diagnosed with TBIs each year, how can we allow this to continue to happen? I know how sick I am and sometimes my brain is not as sharp as it was, but how can 300,000 plus people allow themselves be treated ( or should I say untreated) in this manner?
Start by calling it Borrelia.