Marion County Multiple Sclerosis Self-Help Group, Ocala, Florida

Enjoying Life One Day at a Time!

NEW MS Legislation

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:

 

  • MS Centers of Excellence - Legislation was passed to codify these centers that provide clinical care, research and informational services to those struggling with MS.  This achievement basically secures future funding that will be used for treating MS and finding effective therapies and cures.
  • Respite Care – A bill authorizing $289 million for respite care finally passed both Houses of Congress.  This act will provide relief for respite care providers without narrow guidelines regarding age requirements and/or disability. 
  • Medicare physical therapy caps – The exception process for Medicare physical therapy caps was extended through 2007.  People with MS again will be able to receive the PT care they need without lengthy appeals or restrictions. 

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

Mid-Florida Chapter

(407) 478.8880 x26

Fax: (407) 478.8893

1.800.FIGHT.MS

melissa.mulcahy@flc.nmss.org

Stem Cell Legislation


New Congress to Address Stem Cell Legislation
Support the Stem Cell Research Enhancement Act

Take Action!

 
The new 110th Congress brings another significant opportunity to pass federal stem cell legislation and help us move closer to a world free of multiple sclerosis. The Stem Cell Research Enhancement Act (H.R. 3 and S. 5) has been introduced and is expected to move quickly through both chambers. In fact, the House has announced its intention to vote on H.R. 3 on January 11.

Now is the time to introduce ourselves to the new Congress and let the members know that MS activists support the Stem Cell Research Enhancement Act. The more we call and e-mail, the more we can ensure the voices of MS activists are heard.

Call Congress
As a constituent, your personal phone call to a member of Congress can make a meaningful impression. Take a moment today to call. Go through the Capitol switchboard at 1-800-828-0498 and ask for your Representative and Senators. When you reach their office, identify yourself and where you are from. Then use these talking points:

  • I’m calling to ask for your support of the Stem Cell Research Enhancement Act. Vote yes.
  • Now is the time to expand the embryonic stem cell lines available for federally funded research and move us closer to a world free of multiple sclerosis.
  • I’m an MS activist, and I urge you to co-sponsor this bill and vote yes to enact this important legislation. The promise of MS research depends on it.

These first few days of Congress will be busy and it is critical that we make a great first impression as an organization. Remember to be polite but firm. You might try several times before your call is answered, and don't be surprised if your Representative or Senator answers the phone.

Send an E-Mail
If you would prefer to send a brief e-mail, click above to take action. A thoughtful note can add emphasis to other constituent phone calls. In the event that e-mail information for a new member of Congress is not yet available, we encourage you to call instead.

Our Position
The Society believes that all promising avenues that could lead to the cure or prevention of MS or relieve its most devastating symptoms by repairing MS damage must be explored — including expanding the number of approved embryonic stem cell lines that are available for federally funded research. To help remedy the current federal policy, the Society supports this newly introduced legislation. The Stem Cell Research Enhancement Act allows new stem cell lines to be generated from embryos that have been donated for research purposes by people using the services of in vitro fertilization clinics, while establishing important ethical protections. Click here for more information on our position.

We are encouraged that the new Congress has identified federal funding of embryonic stem cell research as a legislative priority, and we feel confident in its broad support with legislators and the public. Be sure to take action today, and thank you for being an MS activist.

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MS Research Petition

Resolve to Support MS Research this Year
Help Drive the Petition to Cure MS

More Info

 

When MS activists visit Capitol Hill in 2007 to ask for increased funding for MS research, we’ll be taking all the petition signatures with us. Resolve to support MS research this year by helping us gather as many signatures as we can for this purpose. If you’ve already signed the petition, thank you. If you haven’t yet, click here, then share with friends. It only takes a minute.

We’re still striving to reach the goal of at least 200,000 signatures by February 2007. The MS research petition has tens of thousands of signers already. But we’re not moving as quickly as we’d like. We need your help.

Click here to download a hard copy of the petition and a new Web sticker. Then…

  • Give copies of the petition to friends and family to sign and share.
  • Conduct traditional petition signature gathering with a clipboard and copies of the petition. During the next couple weekends, visit a community gathering place and ask others to support MS research by signing the petition (be sure to abide by any solicitation rules).
  • Post the Web sticker on your personal blog, support group site, Facebook, MySpace, or other Web page. Encourage others to do the same.
  • For ongoing updates on state and chapter progress, visit: http://msactivist.blogspot.com/ 
  • Share this site with other MS activists you know.


More funding for medical research is desperately needed to investigate multiple sclerosis — the chronic, often disabling disease that affects at least one person every hour. Scientists do not fully understand its causes, but an investment in medical research can lead to a more treatable, and perhaps curable, disease. With your help, the petition will support our call for more funding for MS research and move us closer to a world free of MS.

Thank you for being an MS activist.

Hot Issues of 110th Congress

Take Action!

 

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 'O7 Budget
  • Funding Delayed for New Respite Care Act
  • Stem Cell Legislation Moves Forward
  • MS Research Petition Drive Update
  • Find More News at http://msactivist.blogspot.com/

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.

Continuing Resolution
However, Congress deferred passage of nearly all the FY '07 appropriations bills last year, including the Labor-HHS bill.  Prior to their adjournment, Congress passed a continuing resolution (CR) that kept government running and provided temporary funding for those agencies through February 15, 2007 (except Defense and Homeland Security, which Congress passed separately last fall).

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
In separate legislative action, the House and Senate agreed last year on a bill to reauthorize the NIH through 2009.  The authorized increase for the NIH budget was approximately 7% for fiscal year 2007, 8% for fiscal year 2008, and “such sums as may be necessary” for fiscal year 2009.  We were extremely pleased with the authorization and what it could mean for NIH programs.  However, the year-long CR  will prevent the NIH from receiving the funding increases appropriated for  FY '07.

Take Action Today
In recognition of the considerable shortfall, Rep. Obey and Sen. Byrd have indicated they would try to increase funding levels for select labor, health, and education programs. This gives us some optimism and flexibility to push for the funding we need for the programs and research that benefit people with MS.

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/.

House Passes Stem Cell Legislation

MS Action — House Passes Stem Cell Legislation
Take a Minute to Thank Your Representative

More Info

 

This afternoon, the House of Representatives passed H.R. 3, the Stem Cell Research Enhancement Act, by an impressive vote of 253-174. (For the record, last year's vote for H.R. 810 was 238-194.) Just prior to voting for H.R. 3, the House defeated a motion to recommit the bill, which would have placed severe restrictions on institutions where somatic cell nuclear transfer research takes place. This motion to recommit (sending it back to the committee for further consideration) fell by a vote of 189-238. The Senate is expected to vote on the bill within a few weeks. Click here for recent news coverage.

Your e-mails to Congress made a difference. If your Representative voted in favor of this bill, take a minute to call and say Thank You. Look up the official Roll Call here. Then, call the Capitol switchboard and ask for your Representative: 1-800-828-0498. Thank them for supporting stem cell research and its promise for people with multiple sclerosis.

We will continue to keep you updated on this legislation and on other important policy issues for people with MS. Thank you for being an MS activist.

Lower Drug Prices

Important Victory for Medicare Beneficiaries
We asked AARP members to urge their Representatives to vote in favor of H.R. 4, a common-sense bill that could lower drug prices for millions of Medicare beneficiaries. Your voice has been heard! The House has voted 255-170 this afternoon to pass the bill. Find out how your Representative voted. This is an important victory, but the fight to make health care available and affordable for all Americans must continue.

Send Info

Please contact Jean MCMSGroup@aol.com with any stories or info. you'd like shared with others.



Contact:  Jean McGrail, Facilitator        (352) 207-4251

Email:     MCMSGroup@aol.com

               Debbie Dann, Co-Facilitator   

Email:     DebbieJoDD2@aol.com