An Open Letter to The New York State Senate Task Force

An Open Letter to The Members of the New York State Senate Task Force,

 

The New York State Senate released a press release on June 20, 2018 stating that they had allocated a “record” $1 million dollars to combat “the scourge” of tick borne disease. The opening paragraph refers to the need to “combat the ongoing increase of TBD’s in New York State”. How can lawmakers acknowledge the very real ongoing increase in tick born diseases without acknowledging that the lack of proper data on the incidence of these diseases creates multiple problems?

Senator Sue Serino, Co-Chair of the Task Force said, “With the State Senate successfully securing an unprecedented $1 million in this year’s budget to bolster awareness, prevention and research initiatives, we are sending a strong message to New Yorkers who have spent years grappling with the devastating impacts of Lyme and tick-borne diseases.”

The Senators are providing all these sound bites claiming to fix the problem. As usual when it comes to Tick Borne diseases they are hoping they can make it appear that they are doing something about the problem while actually doing nothing. As more and more people are suffering with these diseases and the inability to get proper diagnosis and treatment and restored health and quality of life, more and more people are concerned about the issue and worried about the many people most New Yorkers know who have experienced these problems. Lawmakers claim they are doing record things to change the terrible outcome of this disease and slow the spread.

“This critical funding will play a direct role in helping us to combat the spread of Lyme and TBDs in the state, and with the Hudson Valley sitting at the epicenter of this epidemic, I am especially proud to have secured funding that will go directly to our local community. I thank Senator Kemp Hannon, Chair of the Senate’s Health Committee, who has partnered with me to continue building momentum on this important issue. Working together with partners at all levels, we can ensure that New York has an effective statewide action plan in place to empower patients and better protect residents against the scourge of Lyme and TBDs.”

The press release also quotes Senator Betty Little who admits the severity of the problem and the Senator’s awareness of it. ““The good news is we are making progress and the Senate task force is playing a major role. We’ve secured funding and spearheaded legislation. We have taken our direction from the public we serve, from those leading the effort to improve diagnosis and treatment and from the incredible insight of patients themselves. This additional funding will make an impact in the North Country and I am very grateful to have helped secure it as part of this year’s budget.”

One of the Male American Dog Ticks that was crawling on my partner that we stuck in a jar

They admit the problem. They admit the real fact that cases are increasing and that it is a very real threat to the pubic health of the state. Yet still estimation remains the common practice, in the hardest hit counties.

The truth is you can not change the outcome of a disease on public health when you don’t even have an accurate measure of how many people are affected

A public Health system is designed to protect public health and safety through keeping track of the data and incidence of diseases. These numbers then serve to help make the public aware of the dangers, doctors aware of the threat, and help secure funding. In these ways residents are more properly prepared to fight the danger as they live their lives, public health officials know where to focus their efforts to increase education about the strongest threats, doctors should be more educated and properly prepared to handle the dangers, etc. In New York, this hasn’t happened for years. Yet the Senators did not address this issue at all, or do anything to fix the problem.

Lyme Disease is considered a reportable condition in New York State. This means that Doctors who diagnose Lyme disease should report it to the state. The state should then verify the report, and then the state controls that data while also passing on that data to federal officials at the CDC. Instead, because New York data is only estimated, the CDC will not even accept these numbers as they do not accept data from any state that uses an estimation system. Ironically many states that only estimate cases are actually the states where Lyme is most prevalent…like NY. So they have this high incidence of a supposedly reportable disease but nobody bothers to keep track or monitor the danger. On June 22,2018, The Wall Street Journal published an article titled Lyme Disease: An Even Bigger Threat Than You Think. They clarify why the practice of counting cases is so important to public health and safety and shows some results of this practice on the numbers. “in New York, counties with the largest Lyme burden investigate only 20% of positive laboratory reports and then extrapolate to estimate the full number of cases. But the CDC won’t accept estimates. Consequently, in 2016, New York recorded 6,597 Lyme cases, but the CDC listed only 2,623 for the state.” This creates so many problems and such a skewed view of the risk. Yet an entire Senate Task Force actions didn’t do a single thing to address this most basic problem with TBD’s. No other changes can make a difference when we don’t even track the facts and statistics.

The Senators can not claim ignorance of these very real facts. The evidence has been right there in the numbers since Estimation began when the numbers very sharply and instantly dropped. This has been written about and reported. In December of 2016, the Poughkeepsie Journal investigated New York’s switch from counting cases to estimating them. They found that in my county, Ulster, where estimating began in 2010, the county fell to just 269 reported cases of Lyme. In 2009 before estimation began, Ulster county was ranked 10th nationally with 582 CDC accepted cases. Nearby Dutchess County was ranked first in the nation before estimation began there with an average of 1,145 cases per year between 2000 and 2008. In 2009 they began estimating and cases fell to just 413 that year. Meanwhile the estimated numbers paint a false picture of the reality of an increasing epidemic and lawmakers pretend they are exacting meaningful change with pretty sound bites and ignore the facts.

The State Senate had a real opportunity to create meaningful change in the tick born disease epidemic; instead they chose to not even address the most fundamental problem. It is impossible to slow an epidemic without accurate numbers to guide the change.

Please call them and let them know you think estimation of TBD’s needs to be abolished immediately. Let them know their sound bites ignore the facts and simply reflect their desire to garner your vote while doing little to change the reality on the ground. Thousands of your fellow New Yorkers are suffering. We need your help to enact change that matters. The lawmakers are obviously not going to properly address this without an outcry.

 

 

 

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