Embedded Files
Here We Go Again...
As a Maryland Lyme patient, support group leader or doctor- Were you asked for input regarding a bill introduced in the Maryland legislature by those in Washington DC (NatCap Lyme) who claim to represent you or want to "help" you?
Were you informed in advance by email or other method that the NatCap Lyme group had Lyme related bills in the making? Were you given the bill's language or a simple breakdown of the bill? Or asked for your thoughts or input? Were you provided with a draft or even a final copy?
If not, you are not alone. For a number of years the same handful of people associated with the NatCap Lyme group (Washington DC/McLean, VA) continue to approach and/or support Maryland legislators in an attempt to get some sort of bill passed.
One year it was a bill to make Lyme disease reportable. Problem was, it already was reportable and had been for YEARS! So what's that about?
Another time it was to try to protect doctors in Maryland when we already had the best doctor protection of all states. The only thing they managed to do was get the previously established protection policy removed.... and, and, and... have Maryland placed under the IDSA standard of care when before we'd always had a choice! OUCH!!!
(And yes, I get upset when I think about how many Maryland health care professionals got burned by this action and how many patients suffered as a result, and how many patients now have to ONCE AGAIN, travel out-of-state for a doctor to treat them and their children, and there are many who are now having to do this.)
Another bill was introduced in Maryland to create a task force. We'd already had a task force and their full report was shared with all! NatCap Lyme KNEW that because for a short time one of their representatives was on the task force and just up and quit mid-stream. HUH?
Each time NatCap Lyme, their close buddies and a handful of doctors get involved in a Maryland bill they have failed to notify many of you and/or ask for your input or assistance. They have failed to advertise their intentions and explain what the bills entail. They just seem to pop up one day to say rah, rah, rah, support this bill, rah rah, rah! IF they do that much.
There usually are no press releases, email notices or tv/radio announcements to educate or inform you or the public. And often this small group purposely hides their actions from everyone they can, including those who are experienced in dealing with Maryland and other states Lyme related bills and Maryland legislators.
Well, sorry to say they are at it again! Unless you faithfully read their facebook page (and/or eventually their website) you wouldn't have known about their latest 2018 attempts. Actually not "attempts" since the bills have already been introduced. This time they seem to be doing better in letting people know (after the fact of course), but still. rah... rah... rah? uggggggg.
And if these bills are suppose to be a good thing, why for so many years did they hide what they were doing?
Their website states in large bold writing on the main page that they are "Your Voice For Lyme" & they are "Keeping You Informed". But, it is not until after the fact (2/17/18) do they ask on their website for you to contact your legislators to push their agenda, all the while providing little information about the actual bills.
Nat Cap Announcement
https://www.votervoice.net/NATCAPLYME/Campaigns/57027/Respond?vvsn=Bs2BAg9aACD7NA-OUGS7BAA
In their facebook announcement and website blurb...
No link to either bill was provided.
No quotes with specific wording was provided.
They ask those who are sick and not experienced with Lyme related bills to blindly support them by contacting their own legislators with a canned message they have written. The legislators should have been educated about this topic and their intent to introduce a bill in advance. They weren't.
Only two NatCap “chapter” leaders seem to be involved with this situation in Maryland. One woman is in Harford County. FYI- this is not the long time, well established, reputable Harford County Lyme Disease Support Group, Inc. that is a national LDA associated group, but a new group that once had a few, but no longer seems to have upcoming meetings or events listed; and one man in Anne Arundel County who also has no meetings or events listed on the NatCap Lyme site).
New Harford County Group Leader- new group leader Janet Jensen seems to have (or does have) serious problems staying on tract, telling the truth and treating others respectfully. For example- to see her testimony before legislators go to “Time” slide 3:57:52 on the video where Jensen provides strange testimony in grandiose, self-serving fashion, in part about the letter someone sent to legislators that she claims she doesn't know (shake head and act stunned to really drive home the point why don't you?).
The letter was from me, Lucy Barnes- and to clear up some inaccuracies- the Director of the Lyme Disease Education & Support Groups of Maryland for the past fifteen years, and founder and leader of three support groups, and founder of AfterTheBite that was established in the 1980's. True, I don't hold monthly meetings anymore (been there done that for many years), nor do I ask people to sign up to "belong" to me, or ask them to donate so I can do my volunteer work, but I am quite active in the community doing research, educating, writing and publishing articles, etc. and do what I can do while being totally disabled. Anyhow...
When everyone was sitting there under oath Jensen asked if others in the audience knew of Lucy Barnes. Surprisingly, Susan Green shook her head no, and Robert Cloutier didn't acknowledge otherwise. I couldn't believe it!
The fact is, Susan Green had a number of discussions with me, some that were posted publicly and for which Green became so ugly and hostile she was apparently kicked off the board by the moderators (?). She knows of Lucy Barnes most certainly and has for many years, which is documented in personal emails and publicly. Why would she lie under oath about something that stupid?
To Note- Everyone at the legislative hearing had full access to Lucy Barnes' written testimony in advance (and it was posted publicly) and they could have easily contacted her with questions or concerns, and they simply chose not to.
People attending hearing
Testimony Video
More twists and self-serving promotions by NatCap Lyme at “Time” on the slide 3:34:56.
One reason I didn’t attend the hearing that day was because I was very ill (bed bound at the time) and didn’t have access to a wheelchair. In my absence you'll notice Monte Skull of NatCap Lyme volunteered to address my written comments, many coming from patients, group leaders and doctors in Maryland- and then brushed them off and/or argued against them. Why would anyone try to dismiss Lyme patients and their doctors concerns?
Robert Cloutier from Anne Arundel County (previously of Howard and Frederick Counties) falsely indicated under oath in all these years he hadn’t heard of me either when Jensen asked about me in front of legislators (“Time” slide on video 3:58). He simple nodded "no". Perhaps he doesn't want to admit it in front of legislators, but his personal emails (written records) to Lucy Barnes began back on May 11, 2012, at 1:27 PM and continuing. He knows of Lucy Barnes most certainly. So what's that about?
Anyhow, enough of my questions, concerns and opinions for now. Here is the scoop on the most recent Maryland bills (2018) brought to you by none other than the NatCap/Susan Green duo, et. al.
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The Bills
SB 793
Link Here- http://mgaleg.maryland.gov/2018rs/bills/sb/sb0793f.pdf
Sponsors- Senators Feldman, Astle, Benson, Guzzone, Hershey, Jennings, King, Klausmeier, Lee, Mathias, Oaks, Pinsky, Rosapepe, Smith, Young, and Zucker
HB 880
Link Here- http://mgaleg.maryland.gov/2018RS/bills/hb/hb0880f.pdf
Sponsors- Delegates K.. Young, Afzali, Angel, Arentz, Barron, Barve, Brooks, Carozza, Carr, Chang, Ciliberti, Folden, Gutierrez, Hettleman, Hornberger, Impallaria, Kelly, Kipke, Kramer, Lisanti, Mautz, McComas, McDonough, Metzgar, Miele, Moon, Morgan, Pena – Melnyk, Platt, Robinson, Rose, Sample – Hughes, Shoemaker, Tarlau, Vogt, Waldstreicher, West, Wilkins, and P. Young
Concerns/Suggestions/Opinions/Comments....
1. No sunset clause. In case the bill is passed with undesirable wording- very likely to as no Lyme related bill ever has ended up as it started out- it must have an endpoint so we can stop any damage that occurs. The date can be extended if it is a good bill and is actually working for us. Without a sunset clause we are stuck with what ever the final bill states as being the law, when we don't have to be "stuck".
Example- what if Hopkins, insurers, etc. have wording added that requires Lyme patients to be seen by an Infectious Disease doctor in Maryland before they are covered? It has happened in other states, so it is something that needs to be addressed.
2. The bill fails to specifically name Maryland Worker’s Compensation insurance companies They cover the majority of outdoor workers and State employees. Many seasonal and part time people (and even full time) are not covered under regular insurance plans and only have Worker’s Compensation Insurance to depend on.
Many who spend a percentage of their time indoors (not full time outdoors) are being denied coverage even when they are outdoors working and exposed to ticks. They need to be covered. Will they be if this bill passes?
QUOTE- "One hundred two insurance groups offer workers’ compensation insurance to Maryland employers.” Link Here- http://insurance.maryland.gov/Consumer/Appeals%20and%20Grievances%20Reports/workers%27-compensation-report-2013.pdf
3. The bill's contents are issues that should have been discussed with insurers, the Board of Physicians (medical board), the national Lyme groups, the Maryland state Lyme groups, Med-Chi (Maryland medical society), labs, pharmaceutical companies and most importantly Lyme patients, etc. before it was introduced as a bill.
There are alternatives to having a bill, but true, none that come with as much fan fare or possible donations as getting a bill passed would bring to a group.
OPPORTUNITY IS MISSED BY MOST PEOPLE
BECAUSE IT IS DRESSED IN OVERALLS
AND LOOKS LIKE WORK.
(Thomas Edison)
4. ALL, not just some legislators should have been educated in advance of any attempt to present a bill. EDUCATE BEFORE YOU LEGISLATE!
5. Page 3, line 1. Spotted fever should specifically be named as a related tick borne illness. (517 reported cases in Maryland between 2000 and 2007, and some deaths in Maryland have been reported). It often requires lengthy treatment regimens. There is also a nasty chronic form of RMSF and new spotted fevers being discovered at an alarming rate.
6. Page 2, line 14. Should consider either "Borrelia" and/or "Relapsing Fever Borrelia", and/or even listing known strains (stating "known" and unknown), such as: B. miyamotoi, B. mayonii, Borrelia garinii, Borrelia afzelii, Borrelia recurrentis, B. valaisana, B. Lusitaniae, B. andersoni, 25015, DN127, CA55, 25015, HK501, B. Miyamotoi, and B. Japonica, or use wording that encompass them all- Borrelia burgdorferi sensu lato and/or Borrelia burgdorferi sensu stricto. And yes, there is wording in the bill that includes other strains, but it needs to be more specific. Close up the loop holes.
The reasoning behind this suggested change is that the CDC currently recognizes only a Borrelia burgdorferi, and more recently Borrelia miyamotoi and Borrelia mayonii (2016) as the agents that cause actual "Lyme disease" after years of knowing about them; and B. mayonii is thought to only occur in the upper mid-west (according to the CDC) so if it isn't in Maryland, should it be covered by a Maryland policy? (<Insurers may bring that up?).
Borrelia miyamotoi is a strain that causes "Lyme disease" and has been detected in a number of US States. Patients have been found with this strain in Maryland, PA and VA and a number of other states.
Additionally, some strains thought not to cause illness in humans have since been discovered to produce symptoms. This list will probably continue to grow even though there are no names assigned for the illnesses these strains produce.
Another point- if we must wait until the CDC "recognizes" these strains (as the bill language states) as existing in North America or causing illness many people could be denied on that basis. It could also stifle research and/or be the basis for manipulation. (Remember it took about two decades for the CDC to admit the actual cases of Lyme disease were 10 times more than reported and they still won't admit chronic lyme exists and refer to it instead as PTLS, a disorder that doesn't require treatment.)
7. The bill intent should have been considered to be worked on in some other format and efforts should have been made to address the situation BEFORE the topic was introduced as a bill. Educate before you legislate! Make a concentrated effort to fix the problem first, which was not done here. Regulation instead of legislation. Even the legislative committee members feel this is an important part of the process. (Time 3:43:45)
8. The risk of receiving long-term antibiotics can be high and can cause some serious problems. Get documentation together that supports their use for Lyme and other diseases and send it to officials with ways, if any known, to reduce the risks.
9. Sponsor an anonymous survey asking doctors in Maryland how often they prescribe IV antibiotics? Not many do any more, so is a bill really necessary to cover IV's?
10. Find out how many Maryland Lyme treating doctors take insurance before you try to pass a bill that demands treatment be covered. I only know of two doctors who accept insurance, so is this bill absolutely necessary and will it actually help?
11. What will be done with the pharmacies that are refusing to fill or refill antibiotic prescriptions for Lyme patients? And more are denying them as time goes by.
12. Will the price for those who pay cash be increased to supplement the low reimbursement rate that is paid by insurers to pharmacies for antibiotics?
13. Page 2, line 15 and 16. You need to have Post Treatment Lyme Disease Syndrome added in there so when doctors who are trying to protect themselves, or just plain old don't know better, or who are fighting us, diagnose a patient with it, coverage for it too will be included in the bill.
14. Page 2, line 17. Only includes complications related to Borrelia burgdorferi, not the other strains and not the other tick borne diseases.
15. Page 3, lines 1-3. Loop hole. According to the CDC only certain ticks carry certain diseases so if someone has Lyme disease (B. burgdorferi) and only reported one tick bite, could they also have certain other tick borne diseases according to the CDC? Watch for denials there.
OPPORTUNITY IS MISSED BY MOST PEOPLE
BECAUSE IT IS DRESSED IN OVERALLS
AND LOOKS LIKE WORK.
(Thomas Edison)
16. Page 3, lines 4-6. For many years Johns Hopkins has refused to admit Bartonella can be found in ticks, then, that it could be transmitted by ticks. Might this be better worded if it says "tick or vector borne diseases"?
17. Page 3, lines 21-22. What about the doctor who orders multiple IV antibiotics and/or orals? What is the end point that would keep patients safe while being treated?
18. Page 3, lines 23-26. Isn't this dangerous to have as a law? What about the doctor (bad example, but to make a point) who orders IV oatmeal infusions for 9 months? How does that protect patients? You are right, it doesn't.
19. Page 3, lines 27-29. Does this mean a Maryland resident who works in Delaware, Washington DC, Pennsylvania or Virginia who is insured in one of those places by their employers plan or a private plan, or Workers Compensation is not able to see the benefits? Or what about policies that are issued by companies doing business out-of-state that cover Maryland residents? I don't know the answer, but I have to wonder.
In lieu of a bill, a few suggestions...
Approach the Board of Physicians, the Maryland Department of Health and Mental Hygiene and discuss getting both ILADS and IDSA guidelines on equal footing in the state. That is needed more than any other remedy we can hope for today.
Save the opportunity to get a bill passed until it is totally necessary, all other avenues have been exhausted and it will help more than a minority of patients and doctors.
Spend more time educating rather than fund raising and legislating. Put some ELBOW GREASE into your educational efforts!
Educate physicians and other health care professionals so more who can/will accept insurance will treat patients adequately.
Educate patients and the public and have them carry the message to their doctors that both guidelines are available for use and they chose ILADS guidelines.
Get the facts and figures together and send letters to insurers, the State and the federal government indicating how much each of them could save if they would approve treatment as doctors ordered it, rather than deny patients who then become chronically ill and/or disabled and still require treatment at even longer intervals and often repeated treatments for a life time.
*** Please excuse typos, repeats, minor errors, etc. I was working on this during commercials while listening to the Xfinity race and the Daytona 500.
*** Questions about the bill? Please contact Natcap Lyme at 703-821-8833 (toll call- Virginia extension) or email them at natcaplyme@natcaplyme.org
*** The above is my opinion and you may or may not like it, but I am allowed to have one. It is based on facts presented and my experiences after almost twenty years of working with state and federal Lyme related legislation.
And please, NatCap Lyme- don't encourage your friends or members to write me nasty notes again for sharing my opinions while trying to watch out for our patients and doctors. If I do receive any they will be posted publicly.
~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~
Start at Minute 11:45
Hearing Notes
Proponents
Senator Brochin
Susan Green
Sam Shor
Olivia Goodreau 13 years old
Monte Skull- 2 videos- can’t hear them
(looks like Dr. Spector in first one?)
(Under Our Skin Trailer- 2nd one)
Opponents
Stephen ? We Love GMO’s and Vaccines Organization
Wow on the misinformation- chronic Lyme doesn’t exist
Vaccine promotor- quotes Paul Awful Offit
Micael Wynberg- supports science and medical ethics
Want to protect children and others
Pseduo science- not real
Lyme lures you in
Slammed Bartonella
Lyme and Babesia easy to cure
Over 99% accurate tests
No evidence Bartonella is not tick borne so says CDC
TV Star 20 diagnosis
Australia there is no Lyme
No one borne with Lyme- falsely diagnosed
Saunas, hyperbaric, bees stings, herbs, homeopathy
ILADS practitioner
Debbie Riffkin- Blue Cross, Blue Shield
“understand the pain”
BCBS is not old company
“never do what previous witness spoke of”
studies sow no better than placebos
Johns Hopkins- Auwaerter- says CDC says nothing appropriate long term anti for Lyme disease
NIH allergy division says it is dangerous
Risks outweigh benefits
Do not have Lyme but believe they do
According to Hopkins- 75% don’t have Lyme at all says Hopkins
Adverse drug reaction, clots, sepia, antibiotic resistance
No pre-auth
Matt- says "me too" to what BCBS says (legal health and life insurers)
Fake News and Lyme Disease article
DEB comes back- guidelines
They believe based on national guidelines- no evidence IV or any treatment for chronic Lyme
Lyme does not have a reliable test, false positive and false negative
Sure treated appropriately- may have another illness
Don’t deny chronic Lyme
All chronic Lyme, no. Hopkins referred to again
allow 1st 4 weeks, make decision.
No guidelines show value to long term antibiotics
BCBS has never been overturned on appeal
Senator Hershey- asks insurer do you know what a “high ignore list”
NIH letter- Mandates mentions 7 times
Matt- quotes study saying long term antibiotics are harmful
any mandated policy will increase premiums
Deb- thinks it is a quality of care issue
“extremely controversial”
Jim Mathias- can we fix the bill?
Deb responds she will look at it.
New Panel of Proponets
Allowed ONLY 2 minutes
Cassidy Colbert
Brittany Goff- Dr. J’s office
Karen Chaffey- fraud waste and abuse for insurance company
Ashey Simmons- father diagnosed with Lyme- $90,000 in 1st year treatment costs
She was also diagnosed
Kathleen Ridgley- nurse with Lyme
Kelly Knott- has Lyme denied by insurance
Christine Murphy- vaccine
Next Panel
Donna Enestonia
?? Wants research and control for vectors- funding
Donna Anastasia- patient
Brandy Brown- Maryland Nurses Association- conflicting guidelines
Gil Jen- insurance paid IDSA doctors to confirm are valid, Burrascano, Jemsek
CDC pulled guidelines
13 cents increase
Andrew Levine- Senator Brochin asked him to be here. Has had Lyme.
It’s a mysterious disease- antibiotics work.
Randy Brown- ?
Hearing Notes
Hearing Notes
Sorry to say, in my opinion, this bill has about a 15% chance of passing (as is).
SENATE BILL HEARING
Start Minute 4:06:00
Link To Video- http://mgahouse.maryland.gov/mga/play/da9a525d-c687-4bb3-8c46-97f1b220d4bf/?catalog/03e481c7-8a42-4438-a7da-93ff74bdaa4c
Legislator- Delegate Young
Susan Green
LiveLyme Foundation
Repeat presentations of earlier in the day.
Many same people as in the Senate hearing…
Opposing
Same stuff as earlier
Debbie Rifkin again
Not about disease- she believes disease is real- “it’s not about money”.
Then again states… "I want to be clear this has nothing to do about money."
Placebo same outcome as antibiotics.
Quoting same garbage as previously- CDC, etc.
Problem with this is not recommended treatment.
Antibiotic resistance.
Treatment NOT appropriate for disease.
Matt - group pushing vaccines and GMO foods.
Same stuff as earlier.
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