Copy

LEAD Coalition
Take Action:
  • Help Define the Inaugural Innovation Challenge Prize for Dementia
  • Comment on Proposed Guidelines for Early Stage Drug Development
  • Provide Input on LEAD Letter on PET Imaging
News:
  • Mixed Signals on Fate of Federal Funds for Brain Research
  • Several Members Named to Commission on Long Term Care
  • New National Clinical Trial Network Aims to Assist Minority Recruitment
  • New Organizations Join LEAD Coalition
  • BrightFocus Foundation Kicks Off Public Service Campaign, Continues Making Alzheimer's Disease Research Grants
Good Reads/Listens:
  • National Institutional Review Board for Neurodegenerative Diseases Nears Startup
Upcoming Events:
  • March 12-16, 2013: American Society on Aging Conference
  • March 14, 2013: AFA Care Connection Teleconference: Navigating Financial and Legal Systems Related to Aging, Transitions
  • March 16-23, 2013: American Academy of Neurology 2013 Annual Meeting
  • March 21-24, 2013: AMDA Long Term Care Medicine 2013
  • April 12, 2013: Association for Frontotemporal Degeneration Education Conference and Annual Meeting

Take Action


Help Define the Inaugural Innovation Challenge Prize for Dementia

Janssen Healthcare Innovation and the British National Health Service are asking healthcare organizations, patient groups and individual stakeholders to help define the scope of their inaugural Innovation Challenge Prize for Dementia. The prize is aimed at improving the way dementia care is delivered. Submissions of 250 words or less should identify key issues in treatment, diagnosis or ongoing management of people with dementia, and are due by March 20. For more information or to submit recommendations, click here.

Comment on Proposed Guidelines for Early Stage Drug Development

The Food and Drug Administration is seeking public comment on proposed new guidelines for the development of treatments for early stage Alzheimer's disease. Public comment is due within 60 days from the February 7 release (see Federal Register notice here). If you or your organization is interested in helping the LEAD Coalition develop a sign-on public comment, please contact Ian Kremer.

Provide Input on LEAD Letter on PET Imaging

The Centers for Medicare & Medicaid Services' (CMS) Medicare Evidence Development & Coverage Advisory Committee (MEDCAC) met on January 30 to consider the use of beta amyloid PET imaging for the management of dementia and other neurodegenerative diseases. In a decision that threatens to lead CMS to deny Medicare coverage of the imaging, MEDCAC members concluded that they had only low to intermediate confidence that this technology will change health outcomes. (Click here for more details about the MEDCAC decision.) Patient advocates and clinicians are concerned that coverage denial would hinder timely and accurate diagnoses, resulting in delays in utilizing appropriate pharmacological and life-planning interventions for people with neurodegenerative diseases. CMS will issue a preliminary decision in July and a final decision in October. If you or your organization is interested in helping the LEAD Coalition craft a sign-on letter to CMS Acting Administrator Marilyn Tavenner, please contact Ian Kremer.

News


Mixed Signals on Fate of Federal Funds for Brain Research

While support is growing from key U.S. leaders for pumping up brain research, looming federal budget cuts simultaneously are threatening any potential advances. In this month alone, President Obama's State of the Union address highlighted the importance of investing in innovation and science, specifically citing Alzheimer's disease research. Soon after, news emerged that the National Institutes of Health (NIH) is working on an ambitious plan to map the human brain in order to help understand and overcome Alzheimer's disease and other illnesses. In an earlier speech, House Majority Leader Eric Cantor noted, "Long term, controlling health care costs will require smarter federal investments in medical research. Many of today's cures and life saving treatments are a result of an initial federal investment." His remarks lend credibility to expectations that the FY 2014 federal budget may include increasing funds for NIH to invest in biomedical research. LEAD welcomes these positive signs of a more vigorous fight against Alzheimer's disease, but looming budget sequestration threatens to undermine both good intentions as well as the proposed brain mapping project and the aggressive goals set forth in the National Plan to Address Alzheimer's Disease. With this in mind, 44 LEAD Coalition member and partner organizations jointly wrote to the congressional leadership urging that Alzheimer's disease research, clinical care, and patient and caregiver support programs be spared from sequestration federal funding cuts. Separately, ResearchersAgainstAlzheimer's sent a letter to Congress and placed a powerful ad in Roll Call opposing sequestration.

Several Members Named to Commission on Long Term Care

Congressional leaders recently appointed 12 members to the newly established 15-person Commission on Long Term Care. Among the announcements, House Minority Leader Nancy Pelosi appointed George Vradenburg, chairman of USAgainstAlzheimer's, which co-convenes the LEAD Coalition, and a member of the Advisory Council for the National Plan to Address Alzheimer's Disease. Senate Majority Leader Harry Reid, House Speaker John Boehner, Senate Minority Leader Mitch McConnell also made their selections. President Obama has not yet named his three appointees to the commission. The commission was established under the so-called "fiscal cliff" deal -- The American Taxpayer Relief Act (P.L. 112- 240) repealed the CLASS Act, but established a 15 member Commission on Long Term Care. Click here for the list of appointees and an opinion piece about the commission's prospects for success. If your organization would like to provide information to the commission through Vradenburg, please contact Ian Kremer.

New National Clinical Trial Network Aims to Assist Minority Recruitment

The National Minority Quality Forum and Microsoft will introduce a new project later this year to accelerate clinical trial recruitment and increase diversity among clinical trial participants. The new National Clinical Trial Network (NCTN) will be a nationwide searchable database, providing an interactive platform for clinicians serving diverse communities to interact with researchers engaged in clinical trial efforts in the hopes of offering proposed therapies to appropriate patient candidates.

New Organizations Join LEAD Coalition

The LEAD Coalition has grown to 55 member organizations with the recent addition of two new participants: the University of South Florida Health Byrd Alzheimer's Institute, Tampa, FL and Cognition Therapeutics Inc., Pittsburgh. The Byrd Alzheimer's Institute is the world's largest freestanding structure dedicated to translational research on Alzheimer's disease, with the scientists, physicians and staff committed to the prevention, treatment and cure of Alzheimer's disease. Cognition Therapeutics is a drug discovery and development company that uses proprietary biology and chemistry platforms to discover novel drug targets and disease modifying therapies for disorders of the central nervous system.

BrightFocus Foundation Kicks Off Public Service Campaign, Continues Making Alzheimer's Disease Research Grants

The BrightFocus Foundation (formerly the American Health Assistance Foundation; see press release) has redoubled its commitment to advancing innovative research and educating the public through three programs: Alzheimer's Disease Research; National Glaucoma Research; and Macular Degeneration Research. Recently, it kicked off a public service campaign (television and radio spots in English and Spanish), Now Is the Moment, as part of its commitment to informing and educating the public about Alzheimer's disease and encouraging action. BrightFocus continues to award Alzheimer's disease research grants; for more information about past grantees and how to apply for funding, click here.

Good Reads/Listens


National Institutional Review Board for Neurodegenerative Diseases Nears Startup

The LEAD Coalition partnered with ResearchersAgainstAlzheimer's to host a special conference call presentation on February 7 by Ara Khachaturian, Ph.D., the chair and interim president of the National Biomedical Research Ethics Council (NBREC), about ongoing work to start a National Institutional Review Board for Neurodegenerative Diseases (NIRB-ND). The presentation slides and audio recording are available on LEAD's Web site. If you or your organization would like more information about the NIRB-ND or to become involved in the effort, please contact Khachaturian at ara@pad2020.org or 301-294-7201.

Upcoming Events


March 12-16, 2013: American Society on Aging Conference

Join a national conversation to shape the current and future course of aging at the American Society on Aging Conference in Chicago, March 12 through 16. The multidisciplinary conference is expected to draw more than 3,000 professionals and will feature sessions on public policy, diversity and inclusion; an exhibit hall; networking opportunities; and site visits. For additional information or to register, click here.

March 14, 2013: AFA Care Connection Teleconference: Navigating Financial and Legal Systems Related to Aging, Transitions

The Alzheimer's Foundation of America presents Care Connection, a free teleconference designed for both family caregivers and professional caregivers of individuals with Alzheimer's disease and related illnesses, each month. These one-hour teleconferences feature guest speakers, and provide the opportunity for questions and answers -- and sharing. On March 14 at 1:00 p.m. (ET), Amy Lieberman, president of Estate Matters LLC in Minneapolis, will discuss how to find your way through complex financial and legal challenges associated with aging and care transitions. For more information, click here.

March 16-23, 2013: American Academy of Neurology 2013 Annual Meeting

More than 10,000 neurologists and neuroscience professionals from across the globe will converge on San Diego from March 16 to 23 for cutting-edge scientific presentations and comprehensive educational programs at the 65th American Academy of Neurology Annual Meeting. The program will provide attendees with information on the latest research, tips for using new therapies and hands-on training in interactive workshops. For additional information or to register, click here.

March 21-24, 2013: AMDA Long Term Care Medicine 2013

The entire interdisciplinary team – medical director, attending physician, practitioner, nurse, administrator, consultant pharmacist, dietician and rehabilitation professional – is invited to attend the AMDA Long Term Care Medicine 2013 educational and informational forum in suburban Washington DC on March 21 to 24. The forum will share the latest clinical developments in geriatric medicine, best practices in medical management and direction, policy and regulatory updates, advances in translating research into practice, and practical tools to help implement new ideas and projects in the practice setting. For additional information or to register, click here.

April 12, 2013: Association for Frontotemporal Degeneration Education Conference and Annual Meeting

The Association for Frontotemporal Degeneration (AFTD) welcomes individuals with frontotemporal degeneration (FTD), families and professionals to its Education Conference and Annual Meeting in Salt Lake City on April 12. AFTD's daylong event provides valuable information that individuals can use while affirming their experiences with this rare disease. The program structure, breakouts and social reception are deliberate efforts to invite informal networking among participants, facilitators and AFTD board and staff. Break-out sessions include such topics as adjusting to a new diagnosis, managing with the challenges of living at home, partnering with a care facility, and understanding hospice and end stage decisions, as well as a session specially designed for people living with FTD and independently participating in the conference. For additional information or to register, click here.

For more information about topics addressed in the February 2013 LEAD monthly newsletter or to submit material for the March edition, please e-mail ikremer@leadcoalition.org.

Copyright © 2013
The LEAD Coalition, All rights reserved.


Email Marketing Powered by Mailchimp