Lyme Disease Victims Push Awareness, Reform

This article was originally published in The Millerton News, a New York State newspaper, in December 2013.

A year later, New York Governor Andrew Cuomo signed the Lyme Doctor Protection Act into law.

Republished with permission, copyright The Lakeville Journal Company, LLC, 2013.

Marc Miles, Lyme disease patient - Hudson Valley, NY

Marc Miles, Lyme disease patient – Hudson Valley, NY

Last month The Millerton News reported a severe case of Lyme disease in Amenia resident Marc Miles and his endeavors to raise awareness surrounding the subject.

In summary, Miles began feeling symptoms in February; saw his regular doctor; took the standard enzyme-linked immunosorbent assay test for Lyme, which came out negative; followed a prescription regardless; did not recover; and in July sought out a “Lyme-literate” doctor who diagnosed him with two strains of the illness and a related tick-borne disease, babesiosis.

Miles’ health insurance does not cover visits to or prescriptions from his Lyme specialist, Richard Horowitz, M.D., of Hyde Park. Miles currently pays up to $1,000 out-of-pocket a month for treatment, with about $14,000 spent so far, he said.

Miles said his treatment consists of self-administered Bicillin injections, three times a week, and ingesting 40 to 50 pills a day, including antibiotics and herbal, vitamin and detoxing supplements.

“The first thing that is a blessing is that I found the right doctor, the second blessing is that I can afford this right now,” Miles said, though he added with concern, “most people can’t afford that. The average person can’t even afford to be treated.”

There lies the focus of his task: to help revise state and federal Lyme disease-related medical regulations.

According to the Cary Institute of Ecosystem Studies, “The Lower Hudson Valley has long been considered the epicenter for Lyme disease in New York state.”

Residents Reach Out

After November’s article, Miles heard from a variety of area residents in similar and less fortunate situations.

“I’ve gotten so many calls,” Miles said, including one from a woman in Copake whose primary doctor doesn’t know how to help her and another from a mother in North Canaan, Conn., whose doctor insists there is no problem with her children.

“What 7-year-old complains about headaches and backs hurting all day?” Miles asked. “But the doctor says it’s not real.”

Denying Lyme’s authenticity is surprisingly common, Miles said.

He’s also received calls from families in Amenia and Salisbury, Conn., and a part-time Millerton resident with Lyme now living in Florida, Calvin Temenski, who reached out to this newspaper because he’d caught wind of the article from another sufferer and friend in Millerton.

“Lyme disease is affecting so many, it’s great to have the information,” Temenski said.

Through all the networking, Miles has discovered another local Lyme doctor, Kenneth B. Liegner in Pawling.

Pleased that word is spreading and that victims are rallying, Miles is pursuing further steps to see that action for reform is taken.

One such step came to him, in fact, as another response to the article; it was from State Sen. Terry Gipson’s (D-41) office.

In a press release sent out earlier this year, Gipson announced three proposed bills in advocacy for Lyme treatment reform.

“We need to help our citizens who are currently suffering from tick-borne illnesses — those who cannot afford the exorbitant expenses associated with long-term treatment as well as those who can’t find treatment because doctors fear retribution for treating these diseases,” Gipson stated.

In an interview, Gipson and Miles discussed the risks doctors take if they break current International Lyme and Associated Diseases Society guidelines for Lyme treatment, which limit prescription strength and dosage.

“Limited doctors are willing to engage in this,” Gipson said, citing loss of medical licensure as a palpable repercussion.

According to the senator’s Lyme legislation package, The Doctor Protection Act “would protect doctors from discipline by the Board of Medical Examiners so they can prescribe long-term treatment regimens to their patients who need that treatment.”

The Tick Borne-Illness Treatment and Education Act (TickBITE) would compliment The Doctor Protection Act, rendering New York health insurance companies accountable for tick-borne illness related medical costs.

Lastly, The Tickborne Research Aid Act (TickRAID) would provide $1 million in state grant money for relevant “research, prevention and education” purposes, Gipson said.

The senator cited Cary and Cornell Cooperative Extension Dutchess County as district organizations that would be eligible to apply for grants from this funding.

“We want to make sure the money is spent in an economically fiscal way,” he said, “organizations will have to apply for the money and specify what the money is for … [and] prove they can find preventions.”

The senator is confident this bill will pass, as $1 million is only a fraction out of New York State’s $141 million overall budget. The state currently contributes only $65,000 to such research, he said.

As for the other bills, Gipson calls for the public to speak out in support of them, to advise New York senators that Lyme is a real illness and that tick-borne diseases are a threat to public health.

The senator invited Miles to testify for him in front of the senate committee as an example that Lyme is real and taking serious tolls.

“This is a perfect example of the type of story that we need to get broadcast across the state,” Gipson said. “There are senators up in Albany who refuse to acknowledge this … [who] accuse patients of making this up.

“Do you really think people would spend $14,000 if they were making this up?” the senator asked, referencing Miles’ accumulated costs.

Miles agreed to the senator’s proposition and is planning the arrangement.

“I’m doing it because I know so many people are out there who are sick, who have no idea where to go,” he said, “and I’m fighting for them.”

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