May 2009

New Funding and Leadership for the FDA

President Obama’s proposed fiscal year 2010 budget, which was formally released earlier this month, incorporates an increase of $295 million for the U.S. Food and Drug Administration (FDA).  Of note, approximately $131 million has been marked for the Human Drugs Program, and $34 million increase for the Biologics program at FDA.  The ACT-AD coalition applauds the President’s commitment to providing a much needed investment for the Agency at a critical time.  We hope that Congress will give equal consideration to important role FDA plays in facilitating patient access to new treatments for diseases like Alzheimer’s and grant increased appropriations to help the Agency equip itself to adapt changing science.

Also this month, Dr. Margaret Hamburg was confirmed as the new FDA Commissioner by a unanimous vote in the U.S. Senate. Dr. Hamburg brings a wealth of experience to the FDA having previously served as a founding Vice President of the Nuclear Threat Initiative’s Biological Program and as a New York City Health Commissioner. In a recent New England Journal of Medicine article, Dr. Hamburg and Deputy FDA Commissioner Dr. Joshua Sharfstein outlined their vision for the future of the FDA and how best to focus it as public health agency that promotes drug safety and faster approval, “the FDA should always ask whether delays in approval or safety problems can be prevented…We look forward to working with the National Institutes of Health, the pharmaceutical and biotechnology industries, academic medical centers, and research universities to accelerate the development of cures”, they said. ACT-AD looks forward to constructively engaging Dr.Hamburg on ways to enhance and promote the capabilities of the FDA’s Neurology program.

To read the New England Journal of Medicine article by Drs. Hamburg and Sharfstein, click here.

Campaign Launched to Urge Family Discussions about Alzheimer’s Disease

This month the Alzheimer’s Disease Screening Discussion Group (ADSDG) launched an online resource to facilitate family discussions around Alzheimer’s disease.  Studies have shown that when symptoms of memory loss surface, discussing the memory issues with the affected family member and his/her physician early on can lead to a faster Alzheimer’s diagnosis.  An early diagnosis can help family and friends cope financially and emotionally with the impact of Alzheimer’s disease.  Often times, families delay addressing Alzheimer’s symptoms for fear of offending loved ones or a general lack of understanding about the options available to them.

The online tool presents conversation starters, topics of discussion, and scenarios to actively engage a family member about his/her memory issues.  It also has information aimed at increasing understanding of AD progression and what to expect moving forward from the moment of diagnosis.  The National Alliance for Caregiving, an ACT-AD advisory committee member is actively engaged in the ADSDG’s efforts.

GQ and the Geoffrey Beene Alzheimer’s Initiative Honor “Rock Stars of Science”

In an effort to bring public attention to the individuals who conduct Alzheimer’s disease and other important research, GQ will publish a pictorial spread in their June issue that includes 11 scientists they have named the “Rock Stars of Science.” Alzheimer’s researchers such as Dr. Jeffrey Cummings, UCLA; Dr. Ron Petersen, Mayo Clinic; Dr. Rudy Tanzi, Harvard University; Dr. Steven DeKosky, University of Virginia Medical School; Dr. Sam Gandy, Mount Sinai; and Dr. Dale Schenk, Elan Pharmaceuticals will be featured in the piece along with Sheryl Crow, Josh Groban,, Joe Perry, and Seal.  On June 1, a website will be launched in conjunction with this effort The campaign is supported by the Geoffrey Beene Alzheimer’s Initiative

Legislative Update-Independence at Home Act

On May 21, 2009 Representatives Ed Markey (D-MA) and Chris Smith (R-NJ) reintroduced H.R. 2560, the “Independenceat Home Act.” Senators Ron Wyden (D-OR), Ben Cardin (D-MD) Sheldon Whitehouse (D-RI) and Richard Burr (R-NC) introduced its companion bill, S. 1131 in the Senate. If enacted, the “Independence at Home Act “would provide certain Medicare beneficiaries suffering from multiple chronic conditions with access to primary care medical services in their homes or other care settings, under a plan of care developed by a team of health care professionals. The chronic conditions covered under the bill include Alzheimer’s disease and other dementias. The Act would result in less fragmented care for chronically ill patients, reduce unnecessary hospitalizations, and provide relief to family caregivers.

To view the legislation, click here.