December 2009

A Look Back on 2009

As 2009 draws to a close, it is an appropriate time to reflect on the work of ACT-AD and recognize some key steps that were taken this year to help facilitate patient access to new therapies for Alzheimer’s disease.

In July, Alzheimer’s researchers, FDA officials, ACT-AD members, the Alzheimer’s Association and Leaders Engaged in Alzheimer’s disease (LEAD) came together in Rockville, MD to continue a discussion which began in March of 2008 around how to determine clinical meaningfulness in the development new Alzheimer’s therapies. The meeting was a success in that it generated consensus in key areas, most notably that measuring clinical changes in the progression of Alzheimer’s is very difficult due to the individual nature and course of the disease, but it must be done in order to enhance the quality of clinical trials for a new generation of AD treatments. ACT-AD is working to build off of the momentum from this meeting and is making plans for a follow-up discussion with FDA officials and other stakeholders.

In September, ACT-AD commissioned a public opinion survey to gauge voter’s attitudes towards Alzheimer’s disease, the importance they place on finding a cure for the disease, and what policies they would support to ease the burden of the disease on patients and their families. The survey, presented as a part of the “Rock Stars of Science Briefing” on Capitol Hill, found that three-quarters of Americans nationwide and across party lines feel it is personally important to them to find a cure or to prevent Alzheimer’s disease, while an even larger percentage say they look to Congress to make it “a national priority” to speed up the Food and Drug Administration’s (FDA) review process for therapies that slow, halt or reverse the disease. The ACT-AD coalition continues to use the findings from this survey to help inform the growing national debate on how best to approach the growing need for access to better treatments and care for AD.

Finally, ACT-AD again joined with more than 80 advocacy groups in urging Congress to increase funding for FDA this year. On October 16 President Obama signed the Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act of 2010 into law. In 2010, the FDA will receive an additional $306 million, an increase of 15% from last fiscal year’s appropriations. We hope that a portion of this funding will be applied enhancing Alzheimer’s therapy evaluation at FDA in an effort to ensure that patients have timely access to the interventions they need.

ACT-AD and the larger Alzheimer’s community have had a positive year. We look forward to 2010 and hope for continued success in fulfilling our mission of ensuring that more effective treatments and a cure for Alzheimer’s disease are made available to patients and their loved ones. We could not do this with out the support of our coalition members. We thank you all for your efforts.