2016 HB 399

HB 399

Update- March 28, 2016

Maryland Lyme patients LOST again, thanks to NatCapLyme and the House Bill Sponsors, Delegates Afzali and Delegate Young. They sure like the attention and the camera, don't they?

As predicted, the unnecessary and bad bill was changed from its original language with amendments supporting the "other side" and taking away the rights of Lyme patients. It was nearly totally gutted and rewritten- see below.

Added to the language was an even more dangerous provision allowing the Maryland Department of Health and Mental Hygiene (aka Hopkins, CDC, IDSA) to make any changes they want to the regulation. (And zippity do dah said the fox as he was given the keys to the hen house, AGAIN.)

"IF THE DEPARTMENT FINDS SIGNIFICANT DIFFERENCES BETWEEN THE CONTENT OF THE NOTICE REQUIRED BY SUBSECTION (A) OF THIS SECTION AND CURRENT MEDICAL EVIDENCE ON LYME DISEASE TESTING, THE DEPARTMENT MAY ADOPT REGULATIONS THAT CHANGE THE CONTENT OF THE NOTICE."

As for your rights, there was another lame compromise. A compromise is perhaps necessary in other situations, but not when your life and the life of your children are at stake. NO compromises would be necessary if NatCap would have left it alone and NOT pushed a bill for the sake of pushing a bill.

“(D) THE PROVISION BY A HEALTH CARE PROVIDER OR MEDICAL LABORATORY OF THE NOTICE REQUIRED BY SUBSECTION (A) OF THIS SECTION MAY NOT BE THE SOLE BASIS FOR A CAUSE OF ACTION.”.

This makes it difficult, if not impossible, for residents to seek legal recourse in the event they are harmed by bad doctors. Thanks to NatCap Lyme & the bill sponsors for striping you of your rights.

Bottom line- Introducing and supporting a bill by misrepresenting yourself, being sneaky, conniving, underhanded and non-transparent with the people who will be affected by it, and then lying to and disrespecting those people and others to try to get it passed is just an ugly and yes, stupid and self-promoting thing to do.

Link to Amended Version

UNDERLINES INDICATE CHANGES TO ORIGINAL BILL

AMENDMENTS TO HOUSE BILL 399 (First Reading File Bill)

AMENDMENT NO. 1

On page 1, in the sponsor line, strike “and K. Young” and substitute “, K. Young, Hammen, Angel, Barron, Bromwell, Cullison, Hayes, Hill, Kelly, Kipke, Krebs, McDonough, McMillan, Miele, Morgan, Morhaim, Oaks, Pena-Melnyk, Pendergrass, Rose, Saab, Sample-Hughes, and West”; in line 3, after “providers” insert “and certain medical laboratories”; in line 4, after “provider” insert “or the medical laboratory”; in the same line, strike “orders” and substitute “performs”; and strike beginning with “providing” in line 5 down through “notice;” in line 6 and substitute “authorizing the Department of Health and Mental Hygiene to adopt certain regulations under certain circumstances; requiring the Department to provide certain written notice to certain committees of the General Assembly before submitting certain regulations for publication in the Maryland Register; prohibiting the provision of a certain notice from being the sole basis for a cause of action;”.

AMENDMENT NO. 2

On page 1, strike beginning with “SHALL” in line 19 down through “DISEASE” in line 21 and substitute

“WHO DRAWS THE BLOOD OF A PATIENT TO PERFORM A LABORATORY TEST FOR LYME DISEASE OR A MEDICAL LABORATORY, AS DEFINED IN § 17-201 OF THIS ARTICLE, THAT PERFORMS A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE SHALL PROVIDE THE FOLLOWING WRITTEN NOTICE TO THE PATIENT AT THE TIME THE PATIENT’S BLOOD IS DRAWN”.

On page 2, in line 8, after “OR” insert “INITIAL OR”; after line 9, insert:

“(B) IF THE DEPARTMENT FINDS SIGNIFICANT DIFFERENCES BETWEEN THE CONTENT OF THE NOTICE REQUIRED BY SUBSECTION (A) OF THIS SECTION AND CURRENT MEDICAL EVIDENCE ON LYME DISEASE TESTING, THE

Supporting HB 399 at Hearing- 1st group to testify

L-R Not Shown- Gil Jannen, Lyme patient

Monte Skull, Nat Cap Lyme

Amanda Vaughn, Son is Lyme patient

Susan Green, Nat Cap Lyme

Supporting HB 399 at Hearing- 2nd group to testify

L-R Janet Jensen, Nat Cap Lyme

Robert Coultier, Nat Cap Lyme

Cassidy Colbert, Lyme patient

Karen Owen, Nat Cap Lyme- Not shown

NOTES- Delegate Afzali states this same bill has already been passed in nine different states?? Where did she hear that?

Susan Green and Monty Skull are behind the bills wording, introduction and support. They pushed the bill in Maryland even though it failed in Virginia to accomplish its goals. It also angered regular doctors who might have been swayed to help patients, and riled up nasty doctors, causing our doctors to be targeted again.

Another Virginia bill Green and Skull (NatCap) supported this year, which was an attempt to fix their original unsuccessful 2013 Virginia Lyme Test Notification bill, also failed to move forward. The question remains- since it failed in Virginia so badly it required a second "fix-it" bill (that failed to pass), WHY WAS IT SUBMITTED IN MARYLAND by NatCap? Don't we have enough problems already?

IMPORTANT LESSON- Once a bill is passed, good or bad, it is very difficult if not impossible to get the sponsors to admit it was flawed and want to have it changed or voided. That action is similar to giving a very excited kid an award for fishing and then taking it away from him, but much more serious. Passed bills are often the "rewards" legislators use to judge their own success, and/or their colleagues success, a badge of honor if you will. That is why it must be exact and we are ALL sure it will help and not hurt us now or in the future.

Notes, Comments, Facts & Opinions

Afzali- "We are so desperately behind in the State of Maryland.” No, actually we are far ahead of most states, nearly all in fact, and right now we don't have bad bills that have passed into law that we are trying to fix.

Afzali- “she lost her opportunity to treat the Lyme.” Technically, you don’t lose the opportunity to treat Lyme, unless you die first, of course.

Afzali- “The key issue that is harming people in the State of Maryland and that is the inaccuracy of the Lyme test.” No, that isn’t the key issue as we discussed last year. And handing out a piece of paper saying the tests may not be accurate won't give us better tests. It won't give us improved tests. At best it is like a Dora the Explorer bandaid being applied to fix a severed leg.

A poor test is only one of many ongoing issues that needs to be addressed, which includes giving patients and doctors a choice of a standard of care such as ILADS vs. IDSA (patient autonomy), insurance coverage, doctor protection, increased educational efforts, better reporting practices, better studies, more funding for studies, improved prevention measures, etc. Using any favor we may have in Annapolis for this purpose- well, this bill is likened to asking Santa for a stick of gum when we could have gotten a new Mercedes.

Young- She repeated the “tests are not accurate” line, as Afzali mentioned several times. Tip- You probably shouldn't say that (although it is very true) when all officials- CDC/IDSA/Hopkins, etc.- are saying otherwise. You only ruffle feathers and appear uneducated about what most will believe are "the facts" because those claiming tests are good are the "officials".

Ask yourself- who is generally considered more credible when it comes to medical and scientific topics, a small group of sick patients with no medical degrees, or top government officials who've been in the business for decades? (Not fair, but that is the way it is.)

Young- Rather than her personal mammogram test being shared publicly and entered into the record, a Lyme lab test should have been used (there are plenty of them around) because the Lyme tests are the basis for the bill.

OH! But, wait. Lyme tests already have a disclaimer on them! That fact should have sent up a flare to bill sponsors and supporters saying that a bill forcing doctors to tell patients the same thing as the test results already do shouldn't be used as the basis for legislation. That was another one of our points in our testimony when opposing the bill.

Young- For future reference- the Delegate referred to Lyme patients as "victims" which most patients don't usually appreciate.

Green- Again, we shouldn't say the test is “woefully inadequate” (it is, but we shouldn't say that), especially when officials claim it is acceptable and promote it, and they hold more weight than we do. It makes a patient or advocate's position appear inaccurate when it goes totally against the official position. It is counter productive. If you must say anything, say it can be inaccurate or often is inaccurate, or it is inaccurate x% of the time, not that it "is" inaccurate.

Green- If doctors are so “unaware” of the facts as Green points out (and many surely are), we need to educate, not legislate! For example, we don't legislate using a bill that forces parents to hand out a piece of paper with tire changing instructions to everyone if their kids can't change a car tire. We educate the kids. We don't legislate that instructions must be handed out on a piece of paper when someone doesn't know how to snow ski, we teach them how to do it. Same concept when dealing with what doctors and patients should know about lab tests. Educate first. Legislate only as a last resort.

Green- Mentions Hopkins in a positive light. Oh joy! Most legislators and the public, due to prior and ongoing educational efforts, already know for Lyme disease they need to avoid Hopkins. Touting Hopkins as a positive confuses the issue and gives the appearance Hopkins treating doctors are Lyme literate and Lyme friendly, when the majority are not and should be avoided at all costs. There are many other examples that could have been used.

Green- "This bill screams out for support..."- then was interrupted by a legislator and asked to move along, summarize. Might consider keeping testimony short and to the point.

Green- refers to herself as a “victim”. Certainly her choice to do so, but I for one cringe when I hear that word used to describe our patients.

Skull- “I’m not going to even spend time telling you….” Then perhaps don't say that and don't go ahead and do it anyway. (A minor public presentation point.)

Skull- Talks about another state’s task force and her personal experiences there, rather than providing Maryland related information in the time allowed.

Skull- “ALcott"? Try Aucott.

Skull- "We have 4 or 5 chapters in Maryland." Forgot to list them?

Skull- The bill introduced in VA isn’t the one that passed. It was altered. Be sure that is clear and expect that if HB 399 has a chance to move forward it will likely be altered too.

Tip

Know what state you are in and the bill number when testifying.

Smiling moment- Could this be a new transmission method? "When you obtain this disease"- said by Delegate Young in her introduction. "OBTAIN" the disease? That's a new one, and kind of cute. ~smile~

Owen (A/A County- NatCap)- "... the one that we've got [test], is 50 years old and is it pretty useless." Useless, yes, fifty years old, not quite. Please check the facts.

Studebaker (Board Member Delmarva Lyme Disease Association/Centreville Support Group) testified- Told legislators about her son with Lyme disease and the difficulty getting diagnosed.

Ellen Flynn (Maryland Association for Justice) testified- The Association OPPOSES HB 399 as written on the grounds Lyme patients and families would have their ability to take legal actions against doctors who misdiagnose them "shut down" with no recourse if this bill passes (Section B- immunity provision), one of the same points we made in our testimony opposing the bill.

OPINION- We REALLY need to retain our right to take legal action (medical malpractice) when we are injured by doctors who have misdiagnosed or mistreated us, and Lyme patients rights shouldn't be compromised or blocked by this or any bill. Why sponsors and bill supporters did not notice this important point, or would ignore it if they had, I have no clue?

Pam Casemeyer (Maryland State Medical Society) testified- The Society OPPOSES HB 399 also. Medical care is not static. This bill is a "very prescriptive notice" that at any time could be outdated. Even if you give a notice you may not follow standard of care. This is also one of the points we made in our testimony opposing the bill.

Supporting HB 399 at Hearing

L-R Gil Jannen, Lyme patient

Monte Skull, Nat Cap Lyme

Amanda Vaughn, Son is Lyme patient

Lesson # 1 (for those testifying at hearings)- Stay on topic, be sure you know what you are talking about, be brief and tell the truth.

Monty Skull says to legislators concerning our testimony- "The Medical society of ILADS contacted us that she [me] sent that [our testimony] to them. They [ILADS] have voted her down on what she is saying.”

True, I did send our testimony to ILADS (2/11/16) as I always do (keeping them informed- it's called working together and transparency). Now, in the middle of a public hearing, we hear from Monte that ILADS "voted down" Maryland patients and their groups testimony? Really?

If that is true, ILADS never informed me or any of our Maryland groups/patients of this action. They certainly may have "voted down" the testimony which is certainly their option, but it is hard to believe ILADS members, both nationally and internationally, actually took a vote for that specific purpose, and made a decision to purposely go against Maryland patients and groups.

And, if they did take a vote and "voted down" our testimony without consulting any of us or even telling us, it is concerning that ILADS members would then hide that fact from all of our patients and groups. And if they purposely hid that from all of us, it is surprising they would then want Monte, while under oath and supporting a bad bill, to share their private business with the world.

We will have to check with ILADS to clarify Monte's statement. We know she hides important information from all of us all the time, like this and many other bad bills she's been behind in Maryland, but according to her ILADS is now doing that too? Good grief.

Talking about ILADS, where were they? As far back as I can remember, with good bills we've wanted to pass they have testified for us.

And Monte (NatCap) made it a point to tell legislators who were referring to our written testimony (about the author of the testimony- me)- "that particular advocate is not affiliated with any group". HA- and HUH? Gotta laugh there too! First, what does that have to do with the price of eggs (even if it were true and everyone knows it isn't), and second, is there a full moon out tonight?

True, I didn't become a member of Nat Cap years ago when they first got started and I was asked to join. To be honest, I was very ill at the time, wasn't able to work at all and was totally broke as a result. It was all I could do to keep a local support group up and running and write articles for publication. I couldn't afford the fee charged to attend her meetings- I believe it was $5.00 back then- and make the trip back and forth to Washington DC from out near Delaware (bridge tolls, gas money, and forget that traffic). But, that doesn't mean I am not affiliated with ANY groups.

I have a long time working relationship in Maryland and other states with patients, advocates, support groups, doctors and legislators, and for decades we've been working together to help each other.

We don't charge money for meetings or require donations from sick patients to support our work. We don't require patients to fill out special forms or provide their personal information so we can use it later to ask for donations.

We don't require formal legal contracts, have a need for secrecy clauses, have a need for liability disclaimers, or take a portion of any groups hard earned fund raising income for ourselves.

We don't require dues for membership into a "club". We don't pay fees to be affiliated with each other either. We are friends working together. We just do it the old fashion way, the right way, the friendly way, the nice way. Everyone is free to come to us and get what help and information is needed, stay as long as they'd like, and walk away at any time.

Everyone is informed of what we are doing and they are kept updated throughout the process. For those we don't have direct contact with on a regular basis, we publicly post our information on websites for all to see.

Everyone is encouraged to share any thoughts or concerns they have and are always encouraged to ask questions. This has been going on since the late 1980's / early 1990's. We've welcomed more groups into our circle to work with us and we compliment each others efforts. Together we've personally assisted national organizations and numerous state groups for decades and I have always been on call, along with our other group leaders, to jump in and do more whenever needed.

Skull- Another comment blurted out by Skull to legislators concerning the author of our testimony (me), that really has nothing to do with anything- "Eight bills she has opposed!”

Maybe, if that point was even relevant to the Lyme test notification bill (and it wasn't), she should have said we've opposed x number of stupid, redundant and bad Lyme bills. For example...

Maryland

2010- HB 2 Requiring mandatory reporting of Lyme cases in Maryland when it has already existed for nearly two decades- OPPOSED (Why would someone introduce and then support something like that?)

2010- HB 290- Lyme doctor protection bill that was opposed by Lyme doctors (ILADS), Maryland doctors, Lyme organizations, Maryland patients, advocates and our support groups (along with all of the bad boys)- OPPOSED

2010- HB 798- To establish a 2^nd task force shortly after the previous task force released its final report, but had not had time to accomplish their goals- OPPOSED

2012- HB 1168- To declare May is Lyme Disease Awareness Month when it had been official for 20 plus years in Maryland- OPPOSED

2012- SB 891 Lyme test notification bill that failed to meet its goals and caused problems in neighboring Virginia- OPPOSED

2016- HB 399- another Lyme test notification bill- OPPOSED

Virginia

2010- HB 36 requiring mandatory reporting when it already exists and HB 512, HB 897, HB 1017, HB 1288 again, requiring mandatory reporting when it exists

2013- HB 1933- Lyme testing bill that had wording changed and still failed to accomplish its goals.

When approached and asked by legislators, after their bills had already been introduced, we fully supported three bills in Maryland until they were gutted and made dangerous for our patients and doctors.

In Virginia we supported one Lyme related bill (HB 1284) in 2016. It was, unfortunately, reported to be killed by NatCap on purpose and didn't need to be? See below.

From a VA legislator concerning Virginia HB 1284 (February 2016)- Washington Capitol Lyme group asked the legislator to make the request to the HWI Committee to table the bill. The Washington Capitol Lyme group felt the House version would most likely be killed at the HWI committee level if it went to a vote.

They felt this could [have] a negative impact on how the Senate voted and believed the Senate version had a better chance of getting it out of the Senate committee with out a record of the House Committee Action.

Janet Jensen (3:57:33 on video she starts testimony)

How About Them Heads?

Shake 'em to the left, Shake 'em to the right

No, we don't know her.

Janet Jensen (LF)

Robert Coultier (RF)

Susan Green (Back Row)

And one of Robert Cloutier's emails to me, someone he supposedly claims now he doesn't know, never heard of...

May 11, 2012

Per his request we dedicated a webpage to him on our website found here (which, after almost 5 years, was edited today to reflect his sudden non-afiliation with our groups).

For originally adding him to our listing of support groups per his request, I received the following reply.

May 17, 2012

Since he originally contacted me asking to be listed, I've shared his group's info with the rest of our groups, and also sent him 65 Lyme related emails (with my name and/or Maryland Lyme website link containing my name and contact information) in just the last 3 years, the most recent email dated February 28, 2016- eight days before this hearing.

But, he doesn't know me, never heard of me? That's really hard to believe.

Jensen said that our letter/testimony said- "she (me) represented us".

No, our testimony never said that. Not at all. It doesn't even come close to saying that. Read it here. Where did she get that idea? The gossip mill again?

Jensen also said- "Right now I know everybody about Lyme disease in Harford County."

TOO funny! If that were true, she'd certainly know me and the highly respected Harford County Lyme Disease Support Group that's been working there for a couple of decades or longer doing a magnificent job- at least that is what patients, other group leaders, doctors and residents say, and even Congress said when they presented the leader with an award for her dedicated and long time volunteer service to the Lyme Community.

So why would Jensen make up something like that? And in front of legislators while under oath?

This amazing display of whatever it was (lies, gossip?) took away 1 minute and 30 seconds from her 5 minutes of testimony time.

Bottom line, Ms. Jensen- It's a hearing about a bill. Please act accordingly and get your facts straight so you don't embarrass yourself and patients everywhere. Stop listening to and spreading rumors and gossip because they'll eventually get you in trouble.

And just so you know, your behavior and strange (untrue) comments certainly didn't impress anyone, especially the Committee members and other legislators who've known me and our groups/patients for years, if not decades. They saw right through that garbage. Try to remember, it's not all about you. It's about the patients that need our help and who count on us to look out for their best interests.

EDITED- I've since sent a letter of introduction to Ms. Jensen & copied Mr. Cloutier- 3/12/16- with a link to this update. I welcomed any comments they might have or any corrections to the facts they wanted to make that are presented here. Guess everything is accurate and no corrections are necessary as I've not heard back from either of them.

EDITED- After considering what happened, I am actually grateful NatCap and its groupies let everyone in the world know they don't know us. It is now on the record, and helps to keep our good reputation in tact in spite of their efforts.

Lesson # 2- (for anyone testifying)- Please don't call it "Lymes" disease. It is Lyme, without the "s".

Patient Stories- as always very touching and greatly appreciated. Our best to those brave folks and their families for taking time to share their heartbreaking stories. I know it is an extremely hard job to testify (been there, and with others as they testified). The Lyme patients and the family members of patients at the March 8, 2016 hearing managed to testify and educate with class and grace. Thank you so much for your efforts. We are hoping you and your family members are on the road to wellness and feel better soon.

See HB 399 hearing video by clicking here.

OPINION- After viewing the video of the hearing it appears the bill will not pass, at least not as written.

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PREVIOUS UPDATES

UPDATE- February 12, 2016- Med-Chi (Maryland State Medical Society) is on record OPPOSING HB 399. Click Here.

Oppose HB 399- Some of the Reasons To Oppose The Bill

The Attempt to "Fix-It" Bill in Virginia- Will Maryland be next if this bill passes?

Link to Text Here

You have to ask yourself why someone would come into Maryland and push a bill that they know has failed miserably in Virginia where it originated and needs further legislative actions to try to fix it? And why would they not mention any of these actions or plans to our Maryland doctors, Lyme patients or support groups? Or mention it on their own website where all other legislative actions are announced with great fan fare? Why do they keep doing this? If you are doing something that can change the lives of people with Lyme, or the doctors that treat them, you need to let them know.

Quote from NatCap Lyme- "Here is why HB 962 is important: In 2013 Lyme patients helped to pass a Virginia law that requires medical professionals who order a Lyme test to disclose in writing, that these tests are known to be problematic and can produce false negatives. NatCapLyme has learned that many health care providers are not following this law."

Link Here- https://www.votervoice.net/NATCAPLYME/campaigns/44073/respond

Bill to try to correct the situation (2016)- https://lis.virginia.gov/cgi-bin/legp604.exe?161+sum+HB962

For Additional Updates Previously Posted Here

Click Here.