The Washington Report
The following reports are from our friends and partners in Washington, D.C. It is vital that the essential tremor community stay front and center in the minds of legislators, pushing for further scientific exploration into the causes of neurological conditions like essential tremor.
In the United States, the government’s fiscal year begins October 1. In order for the wheels of government to keep turning, funding needs to be provided each year to cover the costs of running the country. While lawmakers are still negotiating appropriations for the next fiscal year, a Continuing Resolution (CR) has been recently passed by Congress to prevent another government shutdown. This short-term solution will continue defense and non-defense funding at the same level as in 2015, until a final appropriations bill can be passed.
However, with this being an election year, final action on an appropriations bill may not happen until sometime in 2017. Historically, in four out of the last five presidential and congressional election cycles, final action on appropriations did not come until the following year.
Although a CR will help keep the government working post-election, as the details of the final bill are finalized, carrying over the same amount of funding does not address either additional funding needs or inflation. The recently passes CR contains a .5% cut across the board.
How does this impact those with essential tremor?
The CR cuts will also impact the work of NIH (National Institutes of Health) and NSF (National Science Foundation). Even a .5% cut equates to millions in lost funding, which could severely affect biomedical research. Supporting scientific research, especially neurological research, is vital to finding the cause of and cure for numerous neurological conditions, including essential tremor. The work being done at these institutions is critical to move medical progress forward in order to improve the lives of millions of people in the U.S. and around the world.
Please take a moment and write to your congressional representatives using this form provided by the Society for Neuroscience. Let them know science is important to you and the millions of other people around the world affected by essential tremor. Tell them how ET impacts your life and how research may find the cause of and a cure for this life-altering condition.
Even in the midst of the all the Presidential campaigning, work continues on the passage of Senate Bill 849: Advancing Research for Neurological Diseases Act of 2016. Introduced by Senator Johnny Isakson (R-GA) in March 2015, this act would amend the Public Health Service Act to require the Centers for Disease Control and Prevention (CDC) to enhance and expand its infrastructure and activities in order to study the cause and transmission of neurological diseases, and to incorporate information obtained through those activities into a National Neurological Diseases Surveillance System.
S. 849 requires the Department of Health and Human Services (HHS) to ensure that the Surveillance System facilitates further research on neurological diseases, including the incidence rates, prevalence, and other critical demographic information. The Act also requires the HHS to ensure privacy and security protections are as stringent as the protections found under the Health Insurance Portability and Accountability (HIPPA) Act.
In February 2016, S. 849 was referred to the Health, Education, Labor, and Pension Committee for review. And although only about 21% (1 out of 4) of all legislation that goes before committee ever make it before the full Senate for a vote, the voices of all those who contacted their Senators to urge their support for this act were heard. The committee has issued a report to the full chamber, recommending that the bill be considered further. This act is identical to the version approved by the House (H.R. 292) last summer.
This brings S. 849 one step closer to being the law of the land. Remember, a bill must be passed by both the House and Senate in identical form and then be signed by the President to become law. Although we have a long way to go, our Washington, D.C. liaison, Tom Bruderle, continues to meet with influential lawmakers, educating them on essential tremor and garnering their support for this important legislation.
You can still help move this bill forward. If your Senator is not listed among the co-sponsors for this bill, please contact them and ask for their support (contact Senators of the 114th Congress). If they are on the list, be sure to drop them a line to thank them. Here is a sample letter you can use: sample letter – Word document.
In December, Congress passed the 2016 Omnibus Spending Bill providing appropriations for most of the federal government through the end of the fiscal year, September 30, 2016. This bill sets money aside for specific federal government departments, agencies, and programs, to cover the costs of operations, personnel, equipment, and business activities. Regular appropriations bills are passed annually, with the funding they provide covering one fiscal year. The fiscal year (FY) is the accounting period of the federal government, which runs from October 1 to September 30 of the following year. The FY 2016 Bill sets aside approximately $1.15 trillion for this purpose. It was passed in the House 316 to 113; and in the Senate 65 to 33, and has since been signed into law by President Obama.
Compared to 2014, the Spending Bill increases the total funding in seven agencies and decreases funding in four. Most importantly, the bill provides more than $32 billion in funding for the nation’s medical research agency, the National Institutes of Health (NIH). This is an increase of $2 billion over 2015. The bill provides an additional $150 million to the NIH for the Brain Research through Application of Innovative Neurotechnologies (BRAIN) Initiative, an increase of $85 million above 2015, to be pooled from various NIH institutes and centers. This is $15 million more than the amount the President initially requested to fund this important research initiative. The bill also includes an increase of $350 million for Alzheimer’s disease research. This is a welcome sign that advancements in the understanding of the brain and medical research are still a priority.
Another sign of the importance of research is the nearly $7.5 billion allocated for National Science Foundation (NSF), an increase of $119 million. NSF is the source for approximately 24 percent of all federally supported research conducted by colleges and universities in the U.S. NSF funding includes $146.9 million (as recommended by the House) for the neuroscience and cognitive science research done through NSF’s Understanding the Brain (UtB) activity, which includes the BRAIN Initiative noted above. It also clarifies that $3 million of the funds provided for UtB will support NSF’s participation in the interagency National Brain Observatory (also recommended by the House).
“Good health, including supporting research, is bipartisan,” said Mark Hallett, MD, Senior Investigator of the Human Motor Control Section of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, and Chair of the IETF Medical Advisory Board. “It is great to see more funding for NIH and NSF. The funds may well help support essential tremor research directly, but it is important to recognize that basic research should also produce information that may eventually be applicable to essential tremor including treatment.”
In order to find a cure for neurological disorders like essential tremor, it is imperative to understand the cause. It is the trial and error of research, the scientific method, which will lead the way. But research takes funding. And the IETF is pleased to see this spending bill, with its robust research funding, pass. As our understanding of the inner-workings of the brain moves forward, an untold wealth of scientific discovery lay before us. Better treatment options and a cure may be just around the corner. The funding is there, now the real work begins.
Tom has been hard at work, making contacts and getting the word out about essential tremor and the IETF among influential leaders in Washington, DC. In October, he met with the Director for Patient-Centered Policy at the Coalition for Imaging and Bioengineering Research (CIBR) to help facilitate continued conversations between CIBR and the new leadership at the IETF. The Academy of Radiology Research created the CIBR in 2006 to bring together numerous patient-centered organizations, like the IETF, with the goal of helping educate the public about imaging research and advocate for federal support of that research.
With the hiring of a new IETF Executive Director, it was important that our Washington partners felt comfortable with the leadership change. Tom made it a point to reaffirm the IETF’s commitment to collaboration and participation in all activities that support advancements in our understanding of neurodegenerative disease.
Tom also reached out to the American Academy of Neurology (AAN), publisher of the magazines Neurology Now and Neurology Today. The October issue of the Neurology Now listed numerous neurological disorders, but excluded the most common of them all, essential tremor. Tom was able to ascertain who the IETF needed to contact to ensure this type of oversight does not happen again in the future.
After the September Senate briefing on neurological disorders, Tom participated in two conference calls aimed at organizing grassroots and lobbying activities in order to recruit additional supporters for the Senate’s Advancing Research for Neurological Diseases Act of 2015 (S. 849). Sponsored by Senator Johnny Isakson (R-GA), this act amends the Public Health Service Act to require the Centers for Disease Control and Prevention (CDC) to enhance and expand its infrastructure and activities in order to study the cause and transmission of neurological diseases, and to incorporate information obtained through those activities into a National Neurological Diseases Surveillance System.
The act requires the Department of Health and Human Services (HHS) to ensure that the Surveillance System facilitates further research on neurological diseases, including the incidence rates, prevalence, and other critical demographic information. The Act also requires the HHS to ensure privacy and security protections are as stringent as the protections found under the Health Insurance Portability and Accountability (HIPPA) Act.
Contact your Senator today and ask them to support S. 849 in order to move neurological research forward and make research information accessible to scientists looking into the causes of and treatment options for neurological disease.
With 10 other patient advocacy groups, Tom represented the IETF in a Senate briefing in support of legislation that would direct Centers for Medicare & Medicaid Services (CMS) and Centers for Disease Control and Prevention (CDC) to collect patient-centered data on a variety of neurological disorders, including essential tremor. Without basic data concerning the size and makeup of people with neurological diseases, researchers are working at a distinct disadvantage. A better understanding of incidence and prevalence rates, genetics, and environmental risk factors, could lead to better treatment options and, ultimately, a cure for these conditions.
The Advancing Research for Neurological Diseases Act (S. 849) is sponsored by Sen. John Isakson (R-GA), with co-sponsorship by Sen. Chris Murphy (D-CT). These senators are encouraging their congressional counterparts to support this Act. It is critical to gain bipartisan support for this innovative data collection solution, as the price tag for neurological disease is estimated to cost Americans $500 billion again this year.
This Act would create a centralized data collection system to securely gather information on socio-demographic, economic, geographic and other factors exhibited by patients. The House of Representatives approved its version of the bill in late July but prospects for final Senate action this year have yet to be determined.
Please take a moment to contact your senator and tell them that S. 849 is important to the essential tremor community. We need information in order to understand ET and other neurological conditions. Explain to your senator that with their support we might discover the cause of ET, which may lead to better, more effective treatment options and a cure, in the future.
The IETF was proud to send Executive Director, Catherine Rice to Bethesda, MD in May, to represent the essential tremor community as an invited guest of the National Institute of Neurological Disorders and Stroke (NINDS). At the symposium entitled “Essential Knowledge Gaps in the Field of Essential Tremor”, Catherine was asked to give a luncheon presentation about the mission of the IETF and provide a true patient perspective on the condition. You can view her slideshow presentation, here. Many scientists from around the world, representatives from pharmaceutical companies, and upcoming researchers from the National Institutes of Health (NIH) came together for two days to learn about the latest advances in ET research and to discuss the intricacies of the condition.
NINDS is working on an in-depth symposium summary of outcomes and recommendations for moving forward. This summary will help serve as a road map to finding the cause of ET that will lead the way for better treatments and a cure. The IETF was honored to be included in this important symposium and are extremely optimistic about the outcomes. As new information becomes available, we will gladly share it with you through the IETF website, social media, and our printed materials. And of course, the IETF will continue to fund critical research projects that follow this collaborative road map to success, as will NINDS.
Every six weeks Tom Bruderle, IETF DC Liaison, represents the IETF at the American Brain Coalition’s (ABC) Advocacy Committee meeting. At the May meeting, Katie Sales, ABC executive director, gave an update on the 21st Century Cures Act. This Act requires Congress to review the steps involved in bringing a new medication or assistive device to market in the U.S. They are looking for ways to streamline the regulatory process and close the gaps between scientific discovery and government regulation. Together, the IETF and the other members of ABC will continue to reach out to our respective congressional members to help move this important legislation forward.
In June, Catherine Rice, IETF executive director, will be traveling to DC to work with Tom to help encourage support from congressional leaders in favor of the 21st Century Cures Act.
In addition, Catherine and Tom will be asking the Neuroscience caucus members to support and sponsor another educational program about ET. These educational programs are held monthly so that congress and legislative assistants can become familiar with various topics.
Tom will spend a lot of time preparing for the upcoming visit and will arrange several meetings with representatives and senators. Catherine looks forward to the visit because she can stress the importance of finding the causes of neurological diseases, especially essential tremor, and finding ways to offer new hope to the millions affected by this life-altering condition.
Making these important connections in DC is vital and ensures that those affected by essential tremor are not forgotten.
When Tom isn’t making the rounds at the capitol building, educating lawmakers about ET, he is an adjunct professor at Northern Virginia Community College. Tom teaches American Government, introducing students to the structure, operation, and process of national, state, and local governments. In addition, his class includes in-depth study of the three branches of the government and of public policy. In order to offer his students a well-rounded and practical education, Tom often has his students accompany him on his congressional appointments, so they can better understand how to reach out to those in government in a meaningful way.
Tom took three of his students to visit with the healthcare staff of members of the Congressional Neuroscience Caucus. This bipartisan caucus promotes a better understanding of how the brain develops, functions, and ages. His students received not only a lesson in government communications but also in essential tremor. Both the students and officials left the meeting with a better understanding of the condition and a deeper compassion for the millions of people who live with it every day.
In April, Tom represented the IETF at the American Academy of Neurology’s (AAN) Brain Health Fair in D.C. Tom graciously gave up his Saturday to man the IETF booth and help educate the public about essential tremor. He passed out lots of educational materials and helped direct people who were interested in learning more to the IETF website. Soren Christensen was one of those interested individuals Tom met. This high school freshman caught Tom’s attention because he was wearing a lab coat that said “Winner of the 2015 U.S. National Brain Bee” on it. The Brain Bee is a neuroscience competition for high school students. And being the consummate educator, Tom chatted with the young man for some time about the exciting world of neuroscience, neurological disorders and essential tremor.
Tom also represented the IETF and the essential tremor community at the American Brain Coalition advocacy committee meeting, which was held in conjunction with AAN’s national meeting. Tom continued to push for more ET funding and recognition, so that better treatment options and a cure can be found for this life-altering condition.
It was another busy month in Washington DC. March was National Essential Tremor Awareness month, and Tom was hard at work building awareness among our congressional leaders.
Tom met with several members of the Congressional Neurosciences Caucus in March. This bipartisan caucus promotes a better understanding of how the brain develops, functions, and ages. Co-chaired by Representative Cathy McMorris Rodgers (R-WA) and Representative Earl Blumenauer (D-OR), the caucus seeks to raise awareness about the millions of Americans afflicted with neurological disorders or mental illnesses. It is imperative that our senators and representatives understand what essential tremor is and how it affects the people of their states in their everyday lives. We need them to help us advocate for greater ET awareness and more funding for ET research.
Building awareness takes time. But, slowly, awareness is happening. As Tom made his visits, he called upon Mr. Jason Spear, the health legislative assistant for Rep. Eleanor Holmes Norton (D-DC). Mr. Spear had not only heard of essential tremor before, but had a very good understanding of what it was and why it was important that we learn all we can about the brain. He agreed that it was vitally important to develop and promote legislation that will further advance neuroscience research. It was probably the easiest appointment Tom has had to date.
Tom also participated in the American Brain Coalition (ABC) advocacy committee teleconference in March. The advocacy committee’s focus for 2015 includes four challenging priorities. They would like to discover ways to increase funding for biomedical research at the National Institutes of Health (NIH), improve health care for chronic conditions particular to the brain, eliminate restrictions on federally funded stem cell research, and support the ethical use of animals in research. Tom’s participation in these important discussions ensures that the voice of the essential tremor community continues to be heard.
Tom is looking forward to another busy month in April. His wonderful disposition and outgoing personality are contagious, and his knowledge and personal experience of essential tremor make him the perfect person to represent the ET community in Washington. Everything from congressional appointments to manning the IETF’s booth at the ABC Brain Health Fair, Tom is out there working for you. And the IETF is thankful to have him on our team.
Tom met with Jennifer Palute in February, the Parkinson’s Action Network (PAN) government affairs representative. Tom and Jennifer discussed two pieces of proposed legislation that may have a substantial impact on those affected by essential tremor: the 21st Century Cures proposal and the Advancing Research for Neurological Diseases Act of 2015.
With the 21st Century Cures proposal, Congress will look at all the steps involved in bringing a new medication or assistive device to market in the United States. They will be looking for ways to streamline the process; close the gaps between advances in scientific knowledge and regulatory policies created to save lives. Over the next several months, members of Congress will examine the whole process, from the discovery to development to delivery, to determine what steps can be taken to keep scientific innovation moving forward at full speed; opening the door to faster FDA approvals for potentially ground-breaking research.
The Advancing Research for Neurological Diseases Act (H.R. 292), introduced by Reps. Michael Burgess (R-TX) and Chris Van Hollen (D-MD), will guide the Centers for Disease Control and Prevention (CDC) in tracking the occurrence and frequency of neurological diseases, including essential tremor. The goal of H.R. 292 is to find ways to better understand future health care needs, note overall changes in health practices, assess disease burden, promote education and support neurological research. More than half of the co-sponsors for this bill were recruited by Tom working on behalf of the IETF.
Tom and Jennifer agreed that each of these bills are significant to both the essential tremor and Parkinson’s disease communities. Tom offered to join forces with Jennifer on any visits they have to Congress, to help educate members of Congress and their staff about how these important pieces of legislation may profoundly impact the essential tremor community.