PA Public Hearing Lyme Bill HR272 Recap

Today in Pennsylvania, there was a hearing by the Human Services Committee of the PA House of Representatives on HB 272, The Lyme and Related Tick-Borne Disease Education, Prevention and Treatment Act. It was very compelling and thought-provoking.

“House Bill 272 directs the Department of Health to establish a task force to address the issues surrounding Lyme disease. This task force will make and implement recommendations regarding the gaps in education, prevention and surveillance of Lyme and other tick borne diseases in Pennsylvania. The bill will also ensure that Physicians can apply the two different standards of care that exist today for the diagnosis and treatment of Lyme disease. Insurance companies have “cherry picked” which standards of care they will approve – effectively “practicing medicine” instead of doctors. With this bill, physicians will be able to apply longer-term therapies to treat Lyme disease that does not respond to shorter courses. Research has long demonstrated persistence of these infections which are related to syphilis. Lastly the bill ensures that insurance companies will pay for the treatment the physician prescribes, putting medical decisions back in the hands of physicians and patients where they should be made.”

The hearing began with testimony from Julia Wagner of Lyme Action PA. Her testimony was very concise and informative. You could definitely see the experience of working with Fortune 500 companies and her skills of consulting and management in her verbal testimony and visual presentation. Her presentation included the story about one representative in Texas working around the current system of getting 17 different doctors to get extended antibiotic treatment for his Lyme Disease. (Texas now has Lyme legislation.)  Unfortunately, the average Joe doesn’t have those type of resources to fall upon. She gave examples of how many that did get the bull’s eye rash went untreated or diagnosed. The two standards of care were outlined but that patients were only offered one and never informed that there were two available unlike Cancer and other diseases. These patients were never given the option to choose their treatment options. She posed the question, what would we rather have individuals that are disabled and not able to be productive members of society, or victims that could get better and be able to be part of the functioning mainstream society.

Dr. Robert Bransfield, President of the International Lyme and Associated Diseases Society, added further technical medical information. This is where I wish I was able to replay so that I could reiterate better in layman’s terms for those not familiar with the complexity of this disease would be able to follow more easily. It was astounding and very compelling. What stuck in my mind from his statement was that we need to treat people and not treat statistics. Dr. Harold Smith contributed additional medical information which in a nutshell came down to reiterate that we need better testing and the current testing is inadequate because the Western Blot tests for antibodies and is open for interpretation and is not diagnostic. Some studies that were included were the Mellon v. Macuder, Barthoud, Luft and even the CDC where it stated that coinfections complicate the picture. In summary, it is hard when you have a vested interest and very hard to change because of it.

“You have the flu everyday but other days are more hell than other days.” ~ Dr. Harold Smith

How he was so right on with that comment. He truly understood what many go through each and every day. A statement was read by Julia Wagner submitted by Dr. Sam Donta, who was on the initial panel to outline the current IDSA treatment guidelines. The bottom line, his section that included chronic Lyme treatment had been replaced with a totally different one that he and his partner had outlined. Essentially, he was instructed that if his ideas and outline didn’t coordinate with their interests and hence he should consider that his ideas and concerns were unacceptable and he should move on.

There was also a victim that has recovered and is now a prominent businessman.  He shared the horror of dealing with the insurance companies and the inability to receive treatment and then have it covered by insurance.  He also touched upon the fact that many doctors were afraid of retaliation by the insurance companies if they treated Lyme Patients.  Thus, they wouldn't treat them with long-term treatment and send them on their way.  This is such a sad state of affairs. 

Josie’s mother’s plea to be able to have the choice and option to give her daughter the necessary care was very emotional for me. A parents’ worst nightmare where she cannot offer her children the best care possible because her hands are tied. She is left to work within the system and receive inadequate care. In summary, parents need options, they need them now; please help the parents of sick children with a choice to be able to treat their children with what they feel is best. There was a doctor that had travelled from New York to testify in support of this legislation. He, himself, had the same experience as many others. He had the means as a doctor to see doctors in all types of specialties and travel around the world and was dismissed when Lyme Disease was presented. He finally received his diagnosis and the adequate care and is much better after long-term antibiotics with lingering symptoms. “The abandonment and rejection by the medical community”… ultimately, “contributed to my chronic medical condition.” What is at stake is for the best interests of the public. “Ignoring the problem will not make it go away.” Another said, “I have lost many things because of Lyme Disease” and I am here so that others do not.

Of course, there was opposing comments made by representatives of the Insurance Federation of Pennsylvania, Blue Cross Blue Shield, and a member of the IDSA.  One insurance representative said he had Lyme Disease with classic symptoms and bulls-eye rash and he knows how serious it can become. However, as I watched and listened I felt that he truly did not understand how brutal it can become; my gut and his body gestures, made me feel he was part of the large majority that the standard treatment did work and was enough and he just could not understand what others are or have gone through.  (This is the same man that in the background of all the speakers was very fidgety, looking at his cell phone and his watch often.)

The IDSA member stated that HB 272 “will be harmful to those with the disease.” “Post Lyme Syndrome” has long term effects like congestive heart failure, and other similar conditions. No one was suggesting that “it is in their head” and so forth. And that there is no “evidence-based protocol” that supports long-term antibiotics or shows that it works; it only gave the patients side effects. “The CDC, NIH and IDSA” do not recommend long term antibiotics; I don’t think that long term antibiotics work. Bottom line, there should be a task force and the panel should include members from the members of ILADS, IDSA, and the Pennsylvania Medical Society.   “We would like to ensure treatment according to evidence-based medicine.” There are clear studies that it doesn’t work and it isn’t up to the legislature to mandate medical treatment.

The hearing ended with a few closing remarks and concerns from those involved with the hearing:

A concern, the system is broke and this doesn’t approach the issues to give physicians the capability to diagnosed and treat their patients adequately.

Representative Scavello-The show had more calls covering Lyme Disease than any other show they have done. This is a major issue of concern.  If we know that the test doesn’t work, why aren’t we looking into finding tests that work?

Sponsor of the bill, Rep. Dick Hess in a very determined and impassioned state: “Tell us what’s better” if long-term antibiotics is not the answer. “Tell us what’s better.” We have to use what is available to get them better; they need help now.

Tell us what's better. ~ Rep. Dick Hess

As far as what happens, I am unsure. But I’d have to say that there was some very compelling testimony in support of the bill. The opposition once again used the “no evidence-based” treatment or trials supporting long-term treatment. I also felt that the insurance representative that used the health care government package as an example and emphatically pointed out that the State would have to flip the bill to pay state mandated health care treatment, where the government would not, was a bit underhanded but did present a point worth pondering.

I’d like to thank Julia Wagner, Lyme Action PA, Rep. Dick Hess, Dr. Robert Bransfield, Joy Burdge, Dr. Harold Smith, Dr. Sam Donta, and all the others that were instrumental in these proceedings. Your efforts and time are very much appreciated by many.

----------------------------------------

PA Public Lyme Hearing (Videos)

Activism: Rebuttal: Lyme Highlight Events: