The Washington Report Archive 2011

December 2011

Congress adjourned for the year shortly before Christmas and will return in mid-January.  In the meantime, the number of cosponsors of the National Neurological Diseases Surveillance System Act (HR 2595) now stands at 54.

Earlier this month I met with the health staff of Reps. Chris Van Hollen (D-MD) and Michael Burgess (R-TX), the bill’s lead cosponsors. The purpose of the meeting was three-fold: to introduce myself to them; put a “face” on the IETF as the organization generating the recent interest in cosponsorship, and get staff guidance on how best to proceed in recruiting new supporters. Other neurological groups are backing the bill but they have not been as active in soliciting cosponsors as the IETF.

Both meetings were friendly and helpful – and recommended identical tactics. The staffers suggested that I identify the supporters of the identical bill introduced in the last Congress, which generated more than 200 cosponsors and led to House passage prior to Senate consideration. Unfortunately, that bill, which is identical to HR 2595, was never considered in the Senate.

With this suggestion in hand, I have eliminated those cosponsors from last year who are not in the current Congress and have begun contacting the others asking for their support of HR 2595.

November 2011

The number of cosponsors of the National Neurological Diseases Surveillance System Act (HR 2595) has climbed to 49.  I continue to send repeat emails to congressional health staff asking for their support of the legislation but many of these requests have been “lost” in the volume of communications they receive.

I did learn from several sources that staffers have seen them but, owing to the press of other Hill business, they have not been able to discuss them with the members of Congress. They encouraged continuing, and multiple, contacts. There are at least eight offices, that I am aware of, interested in becoming cosponsors.

I have been particularly interested in getting the support of the 21-member bipartisan congressional Neurological Caucus, nine of which are cosponsors. In recent days I visited the offices of the other 12 members providing information on the bill and essential tremor, and followed up with an email.

At Cathy’s request, I attended a luncheon presentation sponsored by the Caucus and the American Brain Coalition, as well as the  ABC’s fall membership and board meetings held in conjunction with tne annual meeting of the Society for Neuroscience.  I provided her with copies of the hand-outs and intelligence I collected.

September 2011

Washington, D.C. liaison Tom  Bruderle continued to build relationships with congressional staff on behalf of the IETF.

In early August, he met with Allison Steil, Legislative Director with Rep. Paul Ryan (R-WI), a member of the Ways & Means health subcommittee and chair of the House Budget Committee. He asked her for Ryan’s support of the National Neurological Diseases Surveillance System Act of 2011 (HR2595).  She appeared interested in it and knew the health legislative assistant (LA) of Rep. Michael Burgess (TX), the lead Republican cosponsor.  Any progress on co-sponsorship would not come until after Labor Day when Congress returns.

Bruderle also emailed health staffers that he met with in summer 2011 to ask for their support of HR2595.

He spoke with the Republican staffer on the Appropriations Labor/HHS subcommittee about adding report language in the authorization bill encouraging NIH research funds for essential tremor among other neurological disorders.  Subcommittee member Rep. Lucille Roybal-Allard (D-CA) is willing to support such language if the Republican members propose it. The process for considering the appropriations bill is uncertain, but the groundwork for 2012 has been prepared.

Bruderle met with Patrick Carroll, the Legislative Director with Rep. Kevin Yoder (R-KS), the Foundation’s member of Congress and a member of the Appropriations Committee. They discussed the inclusion of a few words in the report accompanying the legislation. Report language typically accompanies legislation and provides a section-by-section analysis of the bill, its meaning and implications, as well as an explanation of how it would affect or amend existing legislation.  While making no promises, Carroll said a statement in the report has a greater likelihood of success.  Such a mention in the funding bill for NIH and other federal agencies would likely provide heightened visibility for ET.

The language we agreed to, and which Bruderle presented to Carroll, stated:  “NIH shall consider Parkinson’s disease, Alzheimer’s disease, Down’s syndrome, essential tremor and other neurological disorders when reviewing appropriate funding proposals.” If Rep. Yost does offer to add it to report language, then he will need the approval of both the Appropriations Committee chair and the minority Democrats, i.e. Rep. Lucille Roybal-Allard (D-CA). It is clear that ET is eligible for federal research dollars from NIH, but inclusion in report language would provide a “bump-up” in its profile.

Carroll said he would solicit Rep. Yoder’s co-sponsorship of HR 2595. Bruderle will follow-up with Carroll on the above after Labor Day when Congress returns to town.

August 2011

Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation, met with more health legislative aides of congressional representatives to further build awareness and support for ET-related funding and legislation related to neurological studies. Last year, Rep. Michael Burgess (R-TX) introduced a bipartisan bill that didn’t pass in Congress requiring federal agencies funding neurological studies to share their findings. Recently, Burgess reintroduced the National Neurological Diseases Surveillance System Act of 2011 (HR 2595), with 24 bipartisan cosponsors, and there is an identical bill in the Senate, S 425, introduced by Sen. Mark Udall (D-CO) with 13 bipartisan cosponsors.

During July, Bruderle met with Greg Sustrum, health LA with Rep. John Dingell (D-MI), the second ranking member of the House Energy & Commerce health subcommittee; Emily Khoury, Legislative Director, and a health professional summer intern, with Rep. Edolphus Towns (D-NY), a member of the Energy & Commerce health subcommittee; and Melanie Rhinehart Van Tassel, Legislative Director with Rep. Mike Thompson (D-CA), a member of the Ways & Means health subcommittee. Van Tassel and Khoury expressed interest in the Burgess bill and would follow up to learn more.

Bruderle also met with Kimberly Betz, Legislative Director with Rep. Cathy McMorris Rodgers (R-WA). She is a member of the House Republican leadership, serves on the Energy & Commerce health subcommittee, and is cochair of the Congressional Neuroscience Caucus. He discussed ET within the context of other neurological disorders with regard to her work in the Caucus. She was also interested in the Burgess legislation and offered to be of assistance.

A meeting with Larry Charleston, MD, a health fellow with Rep. Wally Herger (R-CA), chair of the Ways & Means health subcommittee, generated more interest in the Burgess bill. Charleston, a neurologist with a degree from the Baylor Medical School, was familiar with ET and has treated patients. Additional meetings and discussion about the Burgess bill included Schylr Greggs, health LA with Rep. Pete Sessions (R-TX), a member of the House Republican leadership; Anne Fultz, Chief of Staff with Rep. Jim Gerlach (R-PA), a member of the Ways & Means health subcommittee; Luke Hatjis, health LA with Rep. Peter Roskam (R-IL), a member of the Ways & Means health subcommittee; Rose Hacking, health LA with Rep. Bill Pascrell (D-NJ), a member of the Ways & Means health subcommittee; and Elizabeth Brown, the health LA with Rep. Kathy Castor (D-FL), a new member of the Energy & Commerce subcommittee. Elizabeth’s grandfather had Parkinson’s, giving her a good understanding of neurological disorders in general.

Bruderle also met with Kristin Smith, Deputy Chief of Staff with Rep. Denny Rehberg (R-MT), chair of the Appropriations subcommittee that recommends funding of NIH and several other federal agencies and departments. They had a good discussion and she asked several questions. She is Rehberg’s staffer on the subcommittee. When Bruderle mentioned the IETF’s request that ET receive some recognition in legislative language, as appropriate, in consideration of NIH funding she agreed to review the existing provisions in the subcommittee’s proposal.

A meeting with Kristyn Vermeesch, health LA with Rep. Jack Kingston (R-GA), who serves on Rehberg’s Appropriations subcommittee, and chairs another subcommittee that recommends FDA funding, was positive and engaging for Vermeesch. The IETF support group in Savannah, she said, may be in Kingston’s district. Julie Hart, Senior Legislative Assistant with Rep. Henry Gonzalez (D-TX), a member of the Energy & Commerce health subcommittee, expressed interest in the Burgess bill.

Finally, Bruderle met with Victor Castillo, Legislative Director with Rep. Lucille Allard-Roybal (D-CA), a member of the Energy & Commerce health subcommittee. Castillo asked about ET leading to Parkinson’s, and the off-label use of Inderal. He suggested contacting the health LA to develop a brief sentence or two in appropriations report language which would recognize ET and was also  interested in the Burgess bill.

July  2011

Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation, represented the IETF while attending the the first-ever Congressional Neuroscience Caucus briefing hosted by the American Brain Coalition. The event drew welcomed more than 90 attendees—over half from congressional offices.

The Caucus was established last year by co-chairs Reps. Cathy McMorris Rodgers (R-WA) and Earl Blumenauer (D-OR) to promote a better understanding of how the brain develops, functions, and ages. The Caucus also seeks to raise awareness about the millions of Americans afflicted with neurological disorders or mental illnesses.

The American Brain Coalition (ABC) works with its members to advocate for policies where there are shared interests such as NIH funding, the ethical use of animals in brain research, stem cell research and access to care for those with brain disorders. Dr. Joseph Coyle, chairman of the ABC, emphasized that when the community speaks with one mind and one voice, we have a greater impact.

Rep. Earl Blumenauer expressed his strong support for neuroscience research, citing it as the next frontier. The Congressman mentioned the high cost of neuropsychiatric disorders to families and to society. Additionally, he said that the Neuroscience Caucus is meant to address brain disorders more broadly, although there are many diseases associated with the brain that have their own Caucuses. He emphasized that this Caucus is all-encompassing in order to facilitate a broader vision and discussion. The Congressman said that brain disorders touch every family at some point in time and that there are vast opportunities for us to understand more.  Finally, Rep. Blumenauer said that brain disorders have healthcare and policy implications, and perhaps this broad issue will serve to unite Members of Congress.

For more information about ABC, please visit http://www.americanbraincoalition.org.

June 2011

Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation, met with the Erin Doty, health legislative assistant (LA) of Rep. Heath Shuler (D-NC), discussed essential tremor in detail, and pointed out the picture of the Asheville, NC, support group in Tremor Talk magazine.

He began contacting members of the House Energy & Commerce health subcommittee to schedule appointments and introduce health staff to essential tremor.

Visits with other health LAs included Liz Montgomery with Rep. Rush Holt (D-NJ) and Monica Volante, the Legislative Director with Rep. Joe Pitts (R-PA), chair of the health subcommittee.  Volante, who has at least one aunt with ET, stated that the Labor/Health and Human Services subcommittee of the Appropriations Committee is expected to begin consideration of the National Institute of Health (NIH) authorization late next month.

Bruderle also met with Johnna Carlson, health LA with Rep. Ted Poe (R-TX) who is the representative of Elizabeth Guthrie featured in the spring/summer issue of Tremor Talk. His meeting with Christina Batt, senior policy advisor, and Will Reeves, her assistant, with Rep. Eliot Engel (D-NY), was productive. Batt is familiar with neurological and brain issues, and quickly understood ET. In fact, a family member has ET. Recently she toured Columbia’s brain respository. She said that Engel, as he has done every year, signed a letter to the House Republican leadership calling for additional NIH funding for brain/neurological research.

He also met with Allison Witt, health LA with Rep. Bob Latta (R-OH), Nick DiCarlo, communications specialist with Rep. Tammy Baldwin (D-WI), Natalie Khalatov-Krimnus, a Legislative Fellow with Rep. Lois Capps (D-CA), and Aimee Hartlage, health LA with Rep. Bill Cassidy (R-LA).

In his meeting with Rebekah West, health policy advisor with Rep. Michael Burgess (R-TX), West said Burgess last year introduced a bipartisan bill requiring federal agencies funding neurological studies to share their findings. While the bill was approved in the House, it was never considered in the Senate. He is preparing an identical bill this year and will shortly request the support of last year’s cosponsors.

Additional meetings later in the month included visits with Jeff Last, health LA with Rep. Leonard Lance (R-NJ) and Brenda Destro, a Professional Staff Member with the Energy & Commerce health subcommittee. She was familiar with the Burgess proposal, an example of the health subcommittee moving beyond complaining about health care reform to other issues. In time, there may be more collaborative involvement in neurological and brain research.

Bruderle also met with Meredith Downen, the health LA with Rep. Howard Coble (R-NC). Coble was an early supporter of Rep. Dennis Moore’s resolution last year officially declaring March as National ET Awareness Month. Downen seemed interested in the Burgess bill and was also responsive to the suggestion that Coble consider joining the caucus.

As the month wound down, a meeting with Keith Studdard, Legislative Director with Rep. Marsha Blackburn (R-TN), yielded interest from Studdard. He knows Rep. Yoder and Alex Porte and plans to talk with them about ET. He is also interested in the Burgess proposal, will discuss it with his staff, and will talk with Blackburn about joining the caucus.

Bruderle also met with Chris Bigelow, the Legislative Director with Rep. Nita Lowey (D-NY) who supported the Moore resolution last year. Lowey was also a cosponsor of the Burgess legislation and is interested in doing so again.

In closing, Bruderle also met with Virginia Muller, an LA for Rep John Shimkus (R-IL) and Michael Harold, the health LA with Rep. Earl Blumenauer (D-OR), the Democratic co-chair of the caucus.  Harold quickly grasped the significance of ET. He understood the importance of brain research for ET and other conditions, and lamented the lack of federal dollars for additional research.

These meetings enable the IETF to maintain a presence in the legislative assembly and keept ET in the forefront of congressmen as they sponsor legislative bills and appropriate funds for brain and neurological research that may benefit those with ET and others.

June 2011

Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation, has been active during spring-early summer 2011 by raising awareness of ET among our nation’s elected leaders and political contacts in the House of Representatives.

Bruderle has been in contact with the legislative aides and directors for multiple Representatives on the heels of the March 30, 2011 congressional reception hosted by the IETF in D.C.

For example, he met with Jacob Parker, the Legislative Director for Rep. Tom Latham (R-IA), a member of the Appropriations Committee. They discussed support for additional federal funding for neurological disorders, including essential tremor, and the need to share research findings among health-related government organizations such as Health and Human Services.

While the current climate on the Hill is contentious, such meetings provide a face-to-face opportunity to enlighten key leaders on House committees about essential tremor, the scope of the condition affecting 10 million Americans, and the work of the IETF in raising funds and awareness of ET.

Bruderle also met with Tristan Daedalus, health Legislative Assistant with Rep. Ann Marie Buerkle (R-NY), a member of the Oversight & Government Reform and Veteran’s Affairs committees.  In addition to discussing essential tremor, Daedalus demonstrated interest in pharmaceutical treatment of ET and sharing research data with respect to Buerkle’s two committee assignments.

Our liaison sought to build on the momentum of former Rep. Dennis Moore, who sponsored the House Resolution last year that designated March as National Essential Tremor Awareness Month. Bruderle met with Moore’s successor Kansas Rep. Kevin Yoder (R-KS) and his health legislative assistant Alex Porte. Porte said Yoder will look at reducing costs for research, increasing its quality and expanding its access in the neurological community. He is very supportive of efforts to aid those with ET.
Bruderle also visited the office of Rep. Pete Stark (D-CA), the ranking member of the Ways & Means Health subcommittee responsible for Medicare legislation, in response to Stark’s gracious “thank you” note to the East Bay (CA) support group recognizing him for supporting House Res. 1264.

Meeting and discussions with additional Representatives and aides ensued about securing research funds for neurological disorders, including ET, and creating opportunities for greater recognition of ET’s impact from a national to local level in Congressional districts. While Congress faces many issues and tasks in today’s highly charged political setting, the IETF’s liaison quietly and steadily has met with staff and leaders to advance the cause of better ET treatment, research, and support.