UPDATES- Following the Bill's Progress

Update- July 26, 2014

In a final vote by patient advocacy group leaders to support and try to move the latest and final version of HR-4701 forward through the next committee (House Energy & Commerce) or not, the Maryland representative voted "no" for a long list of reasons.

However, the bill IS supported by some patient groups and it will be moving forward because the "yes" votes prevailed.

The bill is currently on the Energy and Commerce Committee schedule to be heard next week on Tuesday and/or Wednesday (July 29/30, 2014).

From Sponsor Chris Gibson (R-NY), July 29, 2014 Update

    • Passed through the Energy & Commerce Subcommittee my legislation that will significantly change the way we approach Lyme disease to bring about major reforms for chronic Lyme sufferers and advance new research for cures. We anticipate full committee passage this week, and the bill is projected to be on the floor of the U.S. House in September. If passed by the U.S. Senate, which I am urging, Presidential approval could be secured by the end of the year.

Video of Bill Mark-up and Passage Through Energy and Commerce Committee. View HERE.

SUMMARY OF VIDEO

By Lucy Barnes

Into the video:

(Timing in minutes is a bit off due to movement to you-tube from the Congressional site.)

Approximately 2:30 minutes- Upton (R-MI) called it (HR-4701) a "critical" bill. Called it the "Tick Borne" bill, unlike Pallone below- referring it to as the "Vector Borne" bill. Complains some bills were considered with no hearings and or subcommittee work-ups.

Approximately 6 minutes- Waxman (D-CA)- Explains bill briefly and comments he liked bill that was passed (the wrong bill) through the health subcommittee. But, today we are presented with a new draft. Wants to be sure the bill does not politicize federal activities on Lyme disease. Said the federal agencies need to be sure scientific studies take command in these groups (my words). In other words, IDSA position brought forth and solidified.

Approximately 10 minutes- Pitts (R-PA) summarizes the bill again. Bill summarizes current federal activities. Understanding of tick borne diseases. Report will inform Secretary of Health. To improve prevention, diagnosis and treatment, etc. Called it Tick Borne.

Approximately 11:30 minutes- "Frank-I hate Lyme patients-Pallone" (D-NJ) starts his crying routine [please pass the box of kleenex]. Regular order is important, not being followed. Subcommittee had no input. Doesn't feel the right procedures were followed for several bills and the minority views weren't heard, blah blah blah. Why must we by-pass procedures? He says he just doesn't understand.

Approximately 15 minutes- Pallone still speaking/crying- now on the Lyme bill. He seems to not appreciate the fact the bill is on the calendar since committee still does not have a consensus on it. [In other words, it is not what he or IDSA wants.] But, staff continues to work through the differences. The minority (democrats) had 0% input and Pallone doesn't know why. Crying about Democrat/ Republican issues, not Lyme issues. Then says he hopes changes he made can be used so he can support at least one of these bills before them today. Called the bill "Vector Borne", not "Tick Borne". [Does he ever actually read a bill or know what is going on?]

Approximately 20:09 minutes- Jan Schakowsky (D-IL)- Supports efforts to promote Lyme disease research- BUT- concerns about changes, in other words wanted the bad bill slipped through the committee earlier. She "supports scientific" approach (IDSA views) but is concerned about new bill (?) and the non-consensus in sub-committee and has problems with changes made to bill in subcommittee. Crying in Pallone fashion this bill wasn't brought up by the rules. Hopes things can be worked out before going to floor.

Approximately 25:20 minutes- Gene Green (D-TX)- 25:31 Called it LYME'S disease. He is "concerned" about provisions new amended bill and committee must be based on best available "science" views. Lesson's learned about vaccines should not be forgotten. [Sounds like vaccines were mentioned in a letter to Congress members from IDSA and how patient advocates ruined LymeRix's chances with their non-scientitic views; the same old stuff.] Another IDSA puppet and/or just an uniformed democrat unhappy he is in the minority.

Approximately 28 minutes- Pete Olsen (R-TX)- Sponsor of 5214 (new therapies for patient care). Spoke mostly on his bill and was trying to defend it.

Approximately 30 minutes- Morgan Griffith (R-VA)- Uses Tick Borne in describing the bill. Says he is there to speak specifically on HR-4701. Mentioned Wolf and his efforts and praised him as the "champion" of the bill and past efforts. Says bill creates new federal working group and he supports that, BUT- says it offers opportunities to reestablish connections - and it should allow Congress to control appointments.

May seem to be small he said- but we need to step out of wilderness for legislative branch that we in Congress have willingly wandered into. Process does matter. This bill creates new federal working group, but these groups offer us a chance to reestablish just a little bit of the influence of the legislative branch. For too long Congress has yielded too much power over appointments to the executive branch.

Said they need to change the culture in Congress by allowing Congress to control some of the non-governmental appointments. He would argue that it should be majority, but that "may be for another day". Wants to defend advisory boards. Served for 17 years, never wanted to be a Governor, etc.

He wants to defend the prerogatives of branch "majority" to select people on the working group. Preserving powers, etc.

Approximately 32:30 minutes- Continuing, Griffith from Virginia is going to ask his staff- QUOTE- "to draft possible amendments for this bill to have even more legislative appointments because we must begin the process of standing up for the institution of the US Congress as the people's House by reasserting our legislative powers over the executive branch and NOT having unelected appointed officials selecting all these folks who are going to serve on these boards."

[NatCap Lyme from Virginia has a long history of working behind the scenes to push their own agenda. Could, as in other cases, they have worked behind the scenes once again to encourage a Virginia legislator to draft an amendment to the bill that would allow more and/or a different way of selecting members for the working group should the bill pass?

The NatCap group was fully advised of all developments as the bill progressed and they were against the bill until the last minute when the LDA reported they suddenly jumped on board, which is about the same time the Virginia legislator was drafting the amendment.]

Link Here:

http://energycommerce.house.gov/markup/markup-hr-4067-hr-hr-3522-hr-4701-hr-3670-hr-5161-hr-1575

E & C Subcommittee on Health Members

Chairman: Joe Pitts (PA-16)

Members

Public health and quarantine; hospital construction; mental health; biomedical research and development; health information technology, privacy, and cybersecurity; public health insurance (Medicare, Medicaid) and private health insurance; medical malpractice and medical malpractice insurance; the regulation of food, drugs, and cosmetics; drug abuse; the Department of Health and Human Services; the National Institutes of Health; the Centers for Disease Control; Indian Health Service; and all aspects of the above-referenced jurisdiction related to the Department of Homeland Security.

Republicans

Chairman: Joe Pitts (PA)

Vice Chairman: Michael C. Burgess, M.D. (TX)

Ed Whitfield (KY)

John Shimkus (IL)

Mike Rogers (MI)

Tim Murphy (PA)

Marsha Blackburn (TN)

Phil Gingrey (GA)

Cathy McMorris Rodgers (WA)

Leonard Lance (NJ)

Bill Cassidy (LA)

Brett Guthrie (KY)

Morgan Griffith (VA)

Gus Bilirakis (FL)

Renee Ellmers (NC)

Joe Barton (TX)

Fred Upton (MI)

Democrats

Ranking Member: Frank Pallone, Jr. (NJ)

John D. Dingell (MI)

Eliot L. Engel (NY)

Lois Capps (CA)

Jan Schakowsky (IL)

Jim Matheson (UT)

Gene Green (TX)

G.K. Butterfield (NC)

John Barrow (GA)

Donna M. Christensen (VI)

Kathy Castor (FL)

John Sarbanes (MD)

Henry A. Waxman (CA)

- See more at: http://energycommerce.house.gov/subcommittees/health#members

Jurisdiction:

E&C Membership

- See more at: http://energycommerce.house.gov/about/membership#sthash.79Kwc5qw.dpuf

July 30, 2014

Announcement from the Lyme Disease Association

The LDA is pleased to announce that the Lyme bill, HR 4701, July 23, 2014 version, passed with voice vote out of the Energy & Commerce Committee, today, July 30.

“This bill provides recognition that research is needed for Lyme disease and all tick-borne diseases and provides for a structure where the ultimate stakeholders, Lyme patients, will finally have a voice at the table in a transparent setting” said Lyme Disease Association President Pat Smith. “Additionally, the inclusion of ‘chronic or persistent infection’ finally allows that to be more fully examined as part of the federal research agenda."

The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress including "a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections.... "

The battle for passage of this bill began early this year when LDA met with House leadership to present objections to a vector-borne diseases bill from being introduced in the House Health Subcommittee that would have covered Lyme disease but had no representation at all from patients and physicians and would not have covered other tick-borne diseases because of incidence rates. The LDA provided language changes which provided patient input and transparency. The bill was brought before the Subcommittee, but an amendment in the nature of a substitute was offered and passed out instead—a substitute that was dangerous for patients.

The LDA led a nationwide campaign to bring back patient friendly language and had a letter signed by 154 groups nationwide stating what was necessary from a patient perspective which was sent to all of the Members of the Energy & Commerce Committee. We then worked with Mr. Gibson and the Committee to change the language to produce a bill which will help provide a research agenda for Lyme and other tick-borne diseases including evaluating chronic or persistent infection and co-infections.

The LDA thanks Mr. Gibson, bill sponsor; Mr. C. Smith; and Mr. Upton and all of the Committee members who supported the bill. We also thank our partner groups who were instrumental in the effort to pass this legislation, and all Lyme groups across the country, patients, and other groups who worked on this effort. The next step for the bill is to go to the House floor, which will probably occur sometime after the summer Congressional recess.

July 30, 2014

Markup of H.R. 3522, H.R. 4701, H.R. 4067, H.R. 5214, H.R. 3670, H.R. 5161, H.R. 1575

H.R. 3670 was approved, as amended, by a voice vote.

H.R. 5161, E-LABEL Act

H.R. 5161 was approved by a voice vote.

H.R. 1575, Kelsey Smith Act

H.R. 1575 was approved, as amended, by a voice vote.

H.R. 3522, Employee Health Care Protection Act

H.R. 3522 was approved by a vote of 27-20.

H.R. 4067, and a bill to provide for the extension of the enforcement instruction on supervision requirements for outpatient therapeutic services in critical access and small rural hospitals through 2014

H.R. 4067 was approved by a vote of 31-11.

H.R. 5214, a bill to require the Secretary of Health and Human Services to provide for recommendations for the development and use of clinical data registries for the improvement of patient care

H.R. 5214 was approved, as amended, by a vote of 25-18.

H.R. 4701, Tick-borne Disease Research Accountability and Transparency Act of 2014

H.R. 4701 was approved, as amended, by a voice vote.

Congressional Session:

113th