Oct 06, 2008
Oct 02, 2008
Sep 30, 2008
Sep 20, 2008
Sep 19, 2008
I’m not sure anyone expected so much to be done in the last week of the 109th Congress… Fortunately, thanks to your hard work and leadership with your grassroots activists – some great things happened.
As you know 3 key pieces of legislation, directly affecting those with MS, passed in the last couple days of the 109th Congress last week:
Other bills of interest that made it through in the wee-hours of the morning include NIH reauthorization. Key provisions of the bill include:
• Overall Funding Authorization Increases
The maximum increase for the NIH budget is approximately 7% for fiscal year 2007, 8% for fiscal year 2008, and “such sums as may be necessary” for fiscal year 2009. There are a great deal of “what if’s” regarding this years’ budget – including a possible year long CR so NIH money certainly isn’t “secure” but this authorization is a good start!
• Agency-wide Reporting System
The bill creates a new electronic reporting system that will catalogue all of the research activities of the NIH in a standardized format.
• Establishes a “Common Fund” to Promote Trans-NIH Research Activities
The bill establishes a “common fund” to provide a permanent funding mechanism for trans-NIH research projects. The common fund is a reserve account, and institutes, centers, and independent investigators advancing trans-NIH research may compete for these funds. The amount reserved for the common fund may not be less than the percentage reserved during the previous fiscal year. Once the common fund reaches 5% of the total NIH budget, the Director of the NIH in consultation with an advisory council, must submit recommendations to Congress on changes to the amount reserved for the common fund.
• Empowers the NIH Director
The bill establishes a formal strategic planning process for the entire research portfolio of NIH that transcends the research planning activities of individual institutes and centers through the establishment of the Division of Program Coordination, Planning and Strategic Initiatives. The bill does not change the authority of individual institutes and centers to conduct their individual planning, priority setting and research activities.
• Scientific Management Review Board
The bill establishes a public process for a scientific management review board to evaluate the structure of NIH at least once every seven years. The board must make its first report to Congress within 18 months of the date of enactment of the bill, and may recommend creation, elimination, or consolidation of specific institutes, centers, or Offices in the Office of the Director.
• Limitations on the Size of the NIH
The bill limits the overall size of the NIH to 27 institutes and centers.
• Demonstration Programs
“Bridging the Sciences Demonstration Program.” The bill authorizes the Secretary of HHS acting through the Director of the NIH, in consultation with other agency directors, to award grants for demonstration projects at the interface between the biological, behavioral and social sciences with the physical, chemical, mathematical and computational sciences.
Melissa A. Mulcahy, MHSA
Director, Programs & Services
(407) 478.8880 x26
Fax: (407) 478.8893
|New Congress to Address Stem Cell Legislation|
|Resolve to Support MS Research this Year|
|Hot Issues of 110th Congress||
Legislators are addressing many policy issues during the initial days of the new 110th Congress that could be beneficial to people living with multiple sclerosis. This Federal Focus covers the following hot issues:
NIH Comes up Short in FY ’07 Budget
People living with multiple sclerosis and their families rely on the vital programs and research made available each year through funding from the annual Labor-Health and Human Services-Education appropriations bill. But this year, agencies that run those programs, such as the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), could come up short. Click above to Take Action and help stop this from happening!
In March of last year, a bipartisan group of 73 Senators voted in favor of the Specter-Harkin amendment to the budget resolution. That amendment provided an additional $7 billion above the President’s fiscal year (FY) 2007 budget request for a broad range of programs and services administered by the Departments of Labor, HHS, and Education. A significant number of House members as well — including the entire incoming House leadership and the Democratic leadership of the Appropriations Committee — strongly supported the additional $7 billion for these programs. That was good news for NIH funding.
More recently, Representative David Obey (WI) and Senator Robert Byrd (WV), the incoming chairs of the House and Senate Appropriations Committees, announced they will seek to pass a long-term CR to fund all 2007 appropriations through the end of the current fiscal year (September 30, 2007). However, the CR, by design, provides continuing funding at the existing levels '06 levels, which means no new funding for FY '07. That’s where things fall short and significantly impact federal programs and agencies.
A full-year CR for FY '07 would not provide the additional $7 billion for Labor-HHS and would leave those critical programs $2 billion short. It would undermine the goal of the full Senate when it adopted the Specter-Harkin budget amendment as well as the commitment made by House leadership to significantly increase funding for those priorities.
Additional CR Impact on NIH and Research
Take Action Today
Contact your Senators and Representative today. Ask them to honor the previous Congressional commitments and provide an additional $7 billion to the Labor-HHS budget resolution. Click above to Take Action.
Funding Delayed for New Respite Care Act
Hours before its final adjournment, the 109th Congress passed the Lifespan Respite Care Act. Many calls and e-mails from MS activists helped secure this success for people living with MS and their family caregivers. The Act provides $30 million in the first year and almost $300 million over five years for competitive grants for states to increase the availability of respite care services for family caregivers of individuals with special needs regardless of age. The bill also promotes a coordinated system of accessible respite care at the state and federal level. This success has made many headlines. Read a related letter to the editor in the Raleigh News & Observer and front-page article in the Wall Street Journal.
Unfortunately, the year-long CR impacts the new Respite Care Act as well. Given the current budget scenario and the fact that FY '07 will be administered under a year-long CR, no budget will be available until FY '08 for this program.
The Department of HHS is responsible for implementation of this new law. It will require states to build networks with organizations within the community to deliver respite services and ensure that proper funding is secured (the program will provide 75% funding from federal monies but states will need to come up with the rest). That arrangement should allow for the Society’s Chapters to be active in helping states to secure respite grants. Details of exactly how the program will work should be coming soon from HHS. We will follow developments of this law closely and will update Chapters so they can develop the best strategies to pursue funding with their states.
Stem Cell Legislation Moves Forward
On Friday, Congress re-introduced the Stem Cell Research Enhancement Act (H.R. 3 and S. 5). The bills are expected to move quickly through both chambers. In fact, the House has announced its intention to vote on H.R. 3 on January 11. MS activists were immediately alerted to take action on this issue. If you have not already contacted your elected officials to support this bill, please do so today. Click here to Take Action.
As the stem cell legislation pressed forward, a new stem cell study in the scientific journal Nature Biotechnology caused a stir this week on Capitol Hill as supporters and opponents alike tried to interpret what it meant for the bill. The research found that stem cells taken from amniotic fluid, obtained in routine prenatal testing, could be coaxed to make nerve, liver and bone cells — versatility also found in human embryonic stem cells. That is exciting news and the Society is looking closely at the development. But it is important to note that this discovery is very early and has not been subject to peer review.
In the mean time, this new study does not change the Society’s position on stem cell research or our support of the Stem Cell Research Enhancement Act.
Even top researchers urge caution in interpreting the research:
According to news reports, the head of Wake Forest’s regenerative medicine institute and a senior researcher on the project, Dr. Anthony Atala, wrote to sponsors of the stem cell legislation on Monday after the study was released: “I understand that some may be interpreting my research as a substitute for the need to pursue other forms of regenerative medicine therapies, such as those involving embryonic stem cells,” Atala wrote. “I disagree with that assertion.” Advances in embryonic stem cell research, he reportedly said, could help advance studies into amniotic stem cells and other forms of the cells. Click here to read the Associated Press story.
Harvard University researcher Dr. George Daley said in a January 8, 2007, MSNBC.com article: “While they are fascinating subjects of study in their own right, they are not a substitute for human embryonic stem cells, which allow scientists to address a host of other interesting questions in early human development.”
The Society supports the conduct of scientifically meritorious medical research, including research using human cells, in accordance with federal, state and local laws and with adherence to the strictest ethical and procedural guidelines. Research on all types of stem cells is critical because we have no way of knowing at this point which type of stem cell will be of the most value in multiple sclerosis. Stem cells – adult or embryonic – could have the potential to be used to protect and rebuild tissues that are damaged by MS, and to deliver molecules that foster repair or protect vulnerable tissues from further injury. Many advances in research and treatment are moving us closer to a world free of MS.
MS Research Petition Drive Update
We are in the final stretch of the MS research petition drive and need your help during this last month to add as many signatures as we can by February. All signatures will be used to help support a significant increase in federal funding for MS research when we take the petition to Capitol Hill in March. To sign your name, post a petition in your community, or follow the progress of your local chapter, visit http://msactivist.blogspot.com/.
|MS Action — House Passes Stem Cell Legislation|