2016 Bill- Delaware

June 5, 2016- From the LDA of Delmarva group

DELAWARE LYME BILL HEARING THIS WEDNESDAY. The Delaware Lyme bill that proposes the establishment of an Oversight Board to educate medical practitioners about Lyme disease is going before the Senate Natural Resources Committee this coming WEDNESDAY, JUNE 8th, at 2:00 p.m. at Legislative Hall.

We are opposed to this bill in its current form, because there are no safeguards to prevent this oversight board from creating educational programs which strictly follow the Center for Disease Control and IDSA's standards. It is imperative that any educational program include the guidelines established by the International Lyme and Associated Diseases Society (ILADS).

Currently, the wording of the bill and the proposed make-up of the board does not lead us to believe that a balanced educational program will result. THIS IS VERY DANGEROUS and the citizens of Delaware could see things deteriorate where the diagnosis and treatment of Lyme disease is concerned. Please see our April 29th post for the language of the bill.

We have a panel of speakers who will spell out our position and make recommendations for amendments to the bill. WE NEED TO HAVE DELAWARE LYME PATIENTS ATTEND TO SHOW SUPPORT FOR OUR POSITION.

This is your chance to help prevent a probable bad situation. If amendments are not made to the current bill, the Delaware medical community will most likely have more CDC/IDSA training - backed by the State of Delaware. This will make it even harder to get diagnosed and treated properly.

The Senators will take greater notice of our position if many of their constituents are attending in support of our opposition to the bill in its current form. With needed amendments, the bill can be good for the citizens of Delaware. Please make an effort to attend if you can.

Link Here- https://www.facebook.com/easternshoremdlyme/

Comments

Delaware Legislative Hall

Capitol Building in Dover, DE

FOURSQUARE.COM

Like · Reply · June 5 at 6:17pm

Erika Walks This stinks

Like · Reply · June 5 at 7:04pm

Mary Anne Magness LeRoy Any update from today?

Like · Reply · June 8 at 5:24pm

Debbie Fleshman Sorry I couldn't make it

Like · Reply · June 9 at 7:15am

Mimi Sharkey Eastman Darn!! I wish I would have seen this earlier! I could have attended! So sorry I missed this Marilyn Williams and Pamela Andrews

Like · Reply · June 9 at 3:32pm

ATTENTION DELAWARE RESIDENTS – URGENT ACTION NEEDED. There is a bill being introduced to the Senate Natural Resources Committee on Wednesday, May 4th, that we believe is very dangerous to Lyme patients and other citizens living in Delaware. It has already been passed by the Delaware House. PLEASE READ THIS POST and if you agree that this bill (House Bill 291) has dangerous implications, please contact the senators listed below.

OVERVIEW: At the last meeting of the Delaware Lyme Disease Task Force, a bill was proposed to create an oversight board whose responsibility it would be to develop educational programs for the public and the medical community. Sounds good, right? Education for doctors…right? Well, we voiced our concern at that meeting because such a board could actually be very dangerous to Lyme patients and to the citizens of Delaware if the board members choose to develop an educational plan which favors the policies of the Centers for Disease Control (“CDC”) where Lyme disease is concerned.

While the CDC is charged with monitoring the nation’s health, this agency is not above reproach and some of its philosophies about Lyme disease have proven unfavorable for Lyme patients, resulting in controversy where Lyme disease is concerned. For example, the CDC continues to recommend the use of a two-tier blood test – if the ELISA test is negative, then they suggest that a Western Blot test is not needed. They have held fast to this testing philosophy even though many peer-reviewed research studies have proven that the ELISA test can miss as many as 60% of active cases of Lyme disease.

The CDC’s approach to Lyme disease is outdated in light of the many new scientific discoveries concerning the bacteria. A main reason why so many Delawareans go undiagnosed for so long and improperly treated for Lyme disease – leading to months or years of pain and sometimes debilitating symptoms – is because much of the Delaware medical community follows the outdated guidelines.

The language of the Delaware Lyme bill says that the Governor is to appoint 5 positions on the board, and the heads of the House and Senate will each get another appointment. An amendment also adds the Director of Public Health to the board. If those board members create an educational program straight from the CDC, then the Delaware medical community will continue to be ill-informed and things could get really, really bad for those living in the First State. We fear that it will be even harder for patients to get a diagnosis and that treatment will be further limited.

The language of the bill gives no control over who gets appointed to this board - their experience, knowledge or beliefs concerning Lyme disease - and to the information they choose to teach the medical community and the public. The two amendments already passed by the House further weaken the bill.

Since the governor is responsible for appointing most of the board, I called his office today and spoke with a legislative liaison. This gentleman was very nice, but he had never heard about a controversy concerning Lyme disease. He admitted that the Governor will most likely not get involved in this bill until it comes to his office for signing. The liaison stated that if they receive this bill for the Governor’s review, they would most likely rely on their “experts” – the Division of Public Health. I explained that this statement only fueled my fears as the Public Health employees I have met strictly follow the CDC’s approach where Lyme disease is concerned.

We will be sending the Governor’s liaison information regarding the controversy surrounding Lyme disease over the next couple of weeks and helping to educate that office in the hopes that – if this current bill does get passed by the Senate – the Governor will be educated about the huge responsibility he will have toward whether the people of Delaware continue to suffer mis-diagnosis and a lack of treatment from this endemic health concern (and the disaster that will ensue with an all-CDC medical education program).

HB 291 does not provide any assurances to the membership or the content of the educational programs. We believe it has a high probability for being dangerous to the citizens of Delaware. For this reason, the Lyme Disease Association of Delmarva, Inc. is formerly opposing this bill.

The language for HB 291 is shown below. If, after reading the bill and the two amendments, you, too, feel that this bill could be bad for the citizens of Delaware, PLEASE CALL OR E-MAIL the following members of the Senate Natural Resources Committee. IT IS IMPORTANT THAT THE SENATORS HEAR YOUR OPPOSITION BEFORE THE MAY 4th MEETING. That only leaves this weekend to send an e-mail or Monday and Tuesday to call and talk with their staff.

The issue at hand is that the bill does not include language to control the make-up of the board (they could all be pro-CDC and have no personal experience with Lyme disease) and it does not control the content of the educational program from being pro-CDC philosophy. We feel that No Bill is Better Than a Bad Bill. WE ARE HOPING THAT THE SENATE NATURAL RESOURCES COMMITTEE TABLES THIS BILL FOR NOW.

The May 4th meeting is open to the public and is scheduled for 2:00 p.m. at the Legislative Hall located at 411 Legislative Avenue in Dover, Delaware in the JFC Hearing Room. If you plan to attend, please allow time to go through the security checkpoint. A picture ID is required.

If you have any questions, or need any additional information, please contact us at easternshoremdlyme@yahoo.com or by calling Marilyn Williams at 410-726-4573. THANK YOU FOR YOUR TIME AND ATTENTION TO THIS IMPORTANT MATTER.

MEMBERS OF THE SENATE NATURAL RESOURCES COMMITTEE:

Chairman David McBride

Phone: 302-744-4167

E-mail: david.mcbride@state.de.us

Ernie Lopez

Phone: 302-744-4136

E-mail: ernesto.lopez@state.de.us

Karen Peterson

Phone: 302-744-4163

E-mail: karen.peterson@state.de.us

Bruce Ennis

Phone: 302-744-4310

E-mail: bruce.ennis@state.de.us

Gerald Hocker

Phone: 302-744-4144

E-mail: gerald.hocker@state.de.us

Robert Marshall

Phone: 302-744-4168

E-mail: robert.marshall@state.de.us

If you are a Delaware resident and you oppose this bill, please call or write to all of these senators. The more calls and correspondence they receive the better.

LANGUAGE OF HOUSE BILL 291 AND THE TWO AMENDMENTS:

HOUSE OF REPRESENTATIVES

148th GENERAL ASSEMBLY

HOUSE BILL NO. 291

AN ACT TO AMEND TITLE 16 OF THE DELAWARE CODE RELATING TO THE CREATION OF AN OVERSIGHT BOARD TO EDUCATE HEALTH CARE PROFESSIONALS ABOUT LYME DISEASE.

BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF DELAWARE:

Section 1. Amend Subchapter II, Chapter 1, Title 16 of the Delaware Code by making deletions as shown by strike through and insertions as shown by underline as follows:

§ 140. Lyme disease education oversight board.

(a) The Lyme Disease Education Oversight Board (“the Board”) is established to implement health care professional education on Lyme disease to improve understanding of the disease. For administrative and budgetary purposes only, the Board shall be placed within the Department of Health and Social Services. The Delaware Division of Public Health shall provide staff support for the Board.

(b) The Board shall consist of 7 members who possess the qualifications and are appointed as follows:

(1) The Governor shall appoint:

a. One member who is an advocate for the prevention and treatment of Lyme disease, such as a Lyme disease patient or patient advocate.

b. One member who is licensed to practice medicine in Delaware.

c. One member who is licensed to practice nursing in Delaware.

d. One member who is a licensed health care professional other than physicians or nurses.

e. One member who has knowledge and experience in the licensure and regulation of health care.

(2) The Pro Tempore of the Delaware State Senate shall appoint 1 member of the Lyme Disease Prevention Task Force established by Senate Joint Resolution No. 10 of the 147th General Assembly. Upon the resignation or replacement of that member, the Pro Tempore shall appoint a member to represent the public at large.

(3) The Speaker of the Delaware House of Representatives shall appoint 1 member of the Lyme Disease Prevention Task Force established by Senate Joint Resolution No. 10 of the 147th General Assembly. Upon the resignation or replacement of that member, the Speaker shall appoint a member to represent the public at large.

(c) The Board shall:

(1) Determine the content of Lyme disease medical education materials, ensuring quality and balanced medical education.

(2) Educate health care professionals in the State that Lyme disease can be diagnosed clinically based on history and physical examination, and serologic antibody testing can confirm, but is not required to make, a clinical diagnosis.

(3) Educate health care professionals to develop a high level of awareness of Lyme disease.

(4) Develop continuing medical education credits and nursing continuing education units on Lyme disease and encourage health care professionals to take the continuing education courses as soon as reasonably practicable.

(5) Host continuing medical education and nursing continuing education trainings in all three counties and, if reasonably practicable, at hospitals to encourage the largest possible attendance by health care professionals.

(6) Deliver education in a variety of methods, using professional associations, medical journals, radio, Internet, conferences, and linking medical training with a public awareness campaign.

(d) Appointment terms for the Board are as follows:

(1) The members appointed by the Pro Tempore of the Senate and the Speaker of the House and the member who is an advocate for the prevention and treatment of Lyme disease are appointed for an initial term of 3 years.

(2) The member who is licensed to practice medicine and the member who is licensed to practice nursing are appointed for an initial term of 2 years.

(3) The member who is a health care professional other than physician or nurse and the member who has knowledge and experience in the licensure and regulation of health care are appointed for an initial term of 1 year.

(4) After the initial terms, members are appointed or reappointed for terms of 3 years, but each appointing authority may appoint or reappoint members for a term of less than 3 years to ensure that no more than 3 members’ terms expire annually.

(e) The Board shall select a Chair and Vice Chair from among its members.

(f) A majority of members appointed to the Board shall constitute a quorum to conduct official business.

(g) Members of the Board shall serve without compensation, except that they shall be reimbursed for reasonable and necessary expenses incident to their duties as members of the Board. The Department shall pay such expenses.

(h) The Department shall submit to the Governor and the General Assembly an annual report that contains, at a minimum, all of the following information:

(1) The title, description, and schedule of continuing medical education and nursing continuing education courses related to Lyme disease education.

(2) Attendance of continuing medical education and nursing continuing education courses by the health care professional population.

(3) Specific accounting of fees and costs.

Section 2. This Act expires 8 years after its enactment into law unless otherwise provided by a subsequent act of the General Assembly.

AMENDMENT 1:

HOUSE AMENDMENT NO. 1

TO HOUSE BILL NO. 291

AMEND House Bill No. 291 on line 8 by deleting “7” and inserting in lieu thereof “8”.

FURTHER AMEND House Bill No. 291 by inserting the following after line 21 and before line 22:

“(4) The Director of the Division of Public Health, or the Director’s designee.”.

FURTHER AMEND House Bill No. 291 by inserting the following after line 46 and before line 47:

“(g) If a vote by the Board results in a tie, the Board’s Chair may vote a second time to break the tie.”.

FURTHER AMEND House Bill No. 291 on line 47 by deleting “(g)” and inserting in lieu thereof “(h)”.

FURTHER AMEND House Bill No. 291 on line 49 by deleting “(h)” and inserting in lieu thereof “(i)”.

SYNOPSIS

This Amendment adds the Director of the Division of Public Health, or the Director’s designee, to the Lyme Disease Education Oversight Board. It also authorizes the Board’s Chair to provide a casting vote in the event that there is a tie.

AMENDMENT 2:

HOUSE AMENDMENT NO. 2

TO HOUSE BILL NO. 291

AMEND House Bill No. 291 on line 29 by deleting “Develop” and substituting in lieu thereof the following:

“In conjunction with the Medical Society of Delaware and the Delaware Nurses Association, develop”.

SYNOPSIS

This amendment modifies the Lyme Disease Education Oversight Board’s task of developing continuing medical education credits and nursing continuing education credits, so that the Board does so in conjunction with the Medical Society of Delaware and the Delaware Nurses Association.

ATTENTION DELAWARE RESIDENTS – URGENT ACTION NEEDED. There is a bill being introduced to the Senate Natural Resources Committee on Wednesday, May 4th, that we believe is very dangerous to Lyme patients and other citizens living in Delaware. It has already been passed by the Delaware House. PLEASE READ THIS POST and if you agree that this bill (House Bill 291) has dangerous implications, please contact the senators listed below.

OVERVIEW: At the last meeting of the Delaware Lyme Disease Task Force, a bill was proposed to create an oversight board whose responsibility it would be to develop educational programs for the public and the medical community. Sounds good, right? Education for doctors…right? Well, we voiced our concern at that meeting because such a board could actually be very dangerous to Lyme patients and to the citizens of Delaware if the board members choose to develop an educational plan which favors the policies of the Centers for Disease Control (“CDC”) where Lyme disease is concerned.

While the CDC is charged with monitoring the nation’s health, this agency is not above reproach and some of its philosophies about Lyme disease have proven unfavorable for Lyme patients, resulting in controversy where Lyme disease is concerned. For example, the CDC continues to recommend the use of a two-tier blood test – if the ELISA test is negative, then they suggest that a Western Blot test is not needed. They have held fast to this testing philosophy even though many peer-reviewed research studies have proven that the ELISA test can miss as many as 60% of active cases of Lyme disease.

The CDC’s approach to Lyme disease is outdated in light of the many new scientific discoveries concerning the bacteria. A main reason why so many Delawareans go undiagnosed for so long and improperly treated for Lyme disease – leading to months or years of pain and sometimes debilitating symptoms – is because much of the Delaware medical community follows the outdated guidelines.

The language of the Delaware Lyme bill says that the Governor is to appoint 5 positions on the board, and the heads of the House and Senate will each get another appointment. An amendment also adds the Director of Public Health to the board. If those board members create an educational program straight from the CDC, then the Delaware medical community will continue to be ill-informed and things could get really, really bad for those living in the First State. We fear that it will be even harder for patients to get a diagnosis and that treatment will be further limited.

The language of the bill gives no control over who gets appointed to this board - their experience, knowledge or beliefs concerning Lyme disease - and to the information they choose to teach the medical community and the public. The two amendments already passed by the House further weaken the bill.

Since the governor is responsible for appointing most of the board, I called his office today and spoke with a legislative liaison. This gentleman was very nice, but he had never heard about a controversy concerning Lyme disease. He admitted that the Governor will most likely not get involved in this bill until it comes to his office for signing. The liaison stated that if they receive this bill for the Governor’s review, they would most likely rely on their “experts” – the Division of Public Health. I explained that this statement only fueled my fears as the Public Health employees I have met strictly follow the CDC’s approach where Lyme disease is concerned.

We will be sending the Governor’s liaison information regarding the controversy surrounding Lyme disease over the next couple of weeks and helping to educate that office in the hopes that – if this current bill does get passed by the Senate – the Governor will be educated about the huge responsibility he will have toward whether the people of Delaware continue to suffer mis-diagnosis and a lack of treatment from this endemic health concern (and the disaster that will ensue with an all-CDC medical education program).

HB 291 does not provide any assurances to the membership or the content of the educational programs. We believe it has a high probability for being dangerous to the citizens of Delaware. For this reason, the Lyme Disease Association of Delmarva, Inc. is formerly opposing this bill.

The language for HB 291 is shown below. If, after reading the bill and the two amendments, you, too, feel that this bill could be bad for the citizens of Delaware, PLEASE CALL OR E-MAIL the following members of the Senate Natural Resources Committee. IT IS IMPORTANT THAT THE SENATORS HEAR YOUR OPPOSITION BEFORE THE MAY 4th MEETING. That only leaves this weekend to send an e-mail or Monday and Tuesday to call and talk with their staff.

The issue at hand is that the bill does not include language to control the make-up of the board (they could all be pro-CDC and have no personal experience with Lyme disease) and it does not control the content of the educational program from being pro-CDC philosophy. We feel that No Bill is Better Than a Bad Bill. WE ARE HOPING THAT THE SENATE NATURAL RESOURCES COMMITTEE TABLES THIS BILL FOR NOW.

The May 4th meeting is open to the public and is scheduled for 2:00 p.m. at the Legislative Hall located at 411 Legislative Avenue in Dover, Delaware in the JFC Hearing Room. If you plan to attend, please allow time to go through the security checkpoint. A picture ID is required.

If you have any questions, or need any additional information, please contact us at easternshoremdlyme@yahoo.com or by calling Marilyn Williams at 410-726-4573. THANK YOU FOR YOUR TIME AND ATTENTION TO THIS IMPORTANT MATTER.

MEMBERS OF THE SENATE NATURAL RESOURCES COMMITTEE:

Chairman David McBride

Phone: 302-744-4167

E-mail: david.mcbride@state.de.us

Ernie Lopez

Phone: 302-744-4136

E-mail: ernesto.lopez@state.de.us

Karen Peterson

Phone: 302-744-4163

E-mail: karen.peterson@state.de.us

Bruce Ennis

Phone: 302-744-4310

E-mail: bruce.ennis@state.de.us

Gerald Hocker

Phone: 302-744-4144

E-mail: gerald.hocker@state.de.us

Robert Marshall

Phone: 302-744-4168

E-mail: robert.marshall@state.de.us

If you are a Delaware resident and you oppose this bill, please call or write to all of these senators. The more calls and correspondence they receive the better.

LANGUAGE OF HOUSE BILL 291 AND THE TWO AMENDMENTS:

HOUSE OF REPRESENTATIVES

148th GENERAL ASSEMBLY

HOUSE BILL NO. 291

AN ACT TO AMEND TITLE 16 OF THE DELAWARE CODE RELATING TO THE CREATION OF AN OVERSIGHT BOARD TO EDUCATE HEALTH CARE PROFESSIONALS ABOUT LYME DISEASE.

BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF DELAWARE:

Section 1. Amend Subchapter II, Chapter 1, Title 16 of the Delaware Code by making deletions as shown by strike through and insertions as shown by underline as follows:

§ 140. Lyme disease education oversight board.

(a) The Lyme Disease Education Oversight Board (“the Board”) is established to implement health care professional education on Lyme disease to improve understanding of the disease. For administrative and budgetary purposes only, the Board shall be placed within the Department of Health and Social Services. The Delaware Division of Public Health shall provide staff support for the Board.

(b) The Board shall consist of 7 members who possess the qualifications and are appointed as follows:

(1) The Governor shall appoint:

a. One member who is an advocate for the prevention and treatment of Lyme disease, such as a Lyme disease patient or patient advocate.

b. One member who is licensed to practice medicine in Delaware.

c. One member who is licensed to practice nursing in Delaware.

d. One member who is a licensed health care professional other than physicians or nurses.

e. One member who has knowledge and experience in the licensure and regulation of health care.

(2) The Pro Tempore of the Delaware State Senate shall appoint 1 member of the Lyme Disease Prevention Task Force established by Senate Joint Resolution No. 10 of the 147th General Assembly. Upon the resignation or replacement of that member, the Pro Tempore shall appoint a member to represent the public at large.

(3) The Speaker of the Delaware House of Representatives shall appoint 1 member of the Lyme Disease Prevention Task Force established by Senate Joint Resolution No. 10 of the 147th General Assembly. Upon the resignation or replacement of that member, the Speaker shall appoint a member to represent the public at large.

(c) The Board shall:

(1) Determine the content of Lyme disease medical education materials, ensuring quality and balanced medical education.

(2) Educate health care professionals in the State that Lyme disease can be diagnosed clinically based on history and physical examination, and serologic antibody testing can confirm, but is not required to make, a clinical diagnosis.

(3) Educate health care professionals to develop a high level of awareness of Lyme disease.

(4) Develop continuing medical education credits and nursing continuing education units on Lyme disease and encourage health care professionals to take the continuing education courses as soon as reasonably practicable.

(5) Host continuing medical education and nursing continuing education trainings in all three counties and, if reasonably practicable, at hospitals to encourage the largest possible attendance by health care professionals.

(6) Deliver education in a variety of methods, using professional associations, medical journals, radio, Internet, conferences, and linking medical training with a public awareness campaign.

(d) Appointment terms for the Board are as follows:

(1) The members appointed by the Pro Tempore of the Senate and the Speaker of the House and the member who is an advocate for the prevention and treatment of Lyme disease are appointed for an initial term of 3 years.

(2) The member who is licensed to practice medicine and the member who is licensed to practice nursing are appointed for an initial term of 2 years.

(3) The member who is a health care professional other than physician or nurse and the member who has knowledge and experience in the licensure and regulation of health care are appointed for an initial term of 1 year.

(4) After the initial terms, members are appointed or reappointed for terms of 3 years, but each appointing authority may appoint or reappoint members for a term of less than 3 years to ensure that no more than 3 members’ terms expire annually.

(e) The Board shall select a Chair and Vice Chair from among its members.

(f) A majority of members appointed to the Board shall constitute a quorum to conduct official business.

(g) Members of the Board shall serve without compensation, except that they shall be reimbursed for reasonable and necessary expenses incident to their duties as members of the Board. The Department shall pay such expenses.

(h) The Department shall submit to the Governor and the General Assembly an annual report that contains, at a minimum, all of the following information:

(1) The title, description, and schedule of continuing medical education and nursing continuing education courses related to Lyme disease education.

(2) Attendance of continuing medical education and nursing continuing education courses by the health care professional population.

(3) Specific accounting of fees and costs.

Section 2. This Act expires 8 years after its enactment into law unless otherwise provided by a subsequent act of the General Assembly.

AMENDMENT 1:

HOUSE AMENDMENT NO. 1

TO HOUSE BILL NO. 291

AMEND House Bill No. 291 on line 8 by deleting “7” and inserting in lieu thereof “8”.

FURTHER AMEND House Bill No. 291 by inserting the following after line 21 and before line 22:

“(4) The Director of the Division of Public Health, or the Director’s designee.”.

FURTHER AMEND House Bill No. 291 by inserting the following after line 46 and before line 47:

“(g) If a vote by the Board results in a tie, the Board’s Chair may vote a second time to break the tie.”.

FURTHER AMEND House Bill No. 291 on line 47 by deleting “(g)” and inserting in lieu thereof “(h)”.

FURTHER AMEND House Bill No. 291 on line 49 by deleting “(h)” and inserting in lieu thereof “(i)”.

SYNOPSIS

This Amendment adds the Director of the Division of Public Health, or the Director’s designee, to the Lyme Disease Education Oversight Board. It also authorizes the Board’s Chair to provide a casting vote in the event that there is a tie.

AMENDMENT 2:

HOUSE AMENDMENT NO. 2

TO HOUSE BILL NO. 291

AMEND House Bill No. 291 on line 29 by deleting “Develop” and substituting in lieu thereof the following:

“In conjunction with the Medical Society of Delaware and the Delaware Nurses Association, develop”.

SYNOPSIS

This amendment modifies the Lyme Disease Education Oversight Board’s task of developing continuing medical education credits and nursing continuing education credits, so that the Board does so in conjunction with the Medical Society of Delaware and the Delaware Nurses Association.

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For those of you who can attend, there will be a Lyme Disease Prevention Next Steps press conference tomorrow, Thursday, December 10th, at 10:00 a.m. at the House Majority Hearing Room at Legislative Hall in Dover, Delaware. At the press conference, initiatives introduced by Delaware Senator Lopez and House Speaker Schwartzkopf will be unveiled. These are recommendations and legislative actions that came out of last year's Lyme Disease Task Force meetings.