On Wednesday, March 10, the House Appropriations Committee banned all earmark requests directed toward for-profit entities. Appropriations Chair David Obey (D-WI) and incoming Defense Appropriations Subcommittee Chair Norm Dicks (D-WA) announced that businesses will still be able to apply for earmarks through a competitive process, but they will apply to the Defense Department, not Congress, to ensure earmarks are awarded on a merit basis only. Further, to enable easy public access, the Appropriations Committee will establish a one-stop link to all House Members earmark requests. Earmarks provide Members of Congress a method to secure funds for special projects, grants, or programs they deem important to their constituents. Congressional earmarks have garnered negative attention in recent years due to a lack of clarity and transparency in the earmarking process, leading to a series of earmark reforms that began in 2007.

In March 2009, Sharon Terry, President & CEO of Genetic Alliance, testified before the House Committee on Appropriations calling for a shift away from allocating money to one organization or one disease, in order to better empower networks and shared infrastructure. The information obtained through sequencing the human genome has enabled new and more effective ways to understand disease, and we can now find solutions to treatments and cures in unexpected directions, and outside of the isolated nature of Congressional earmarks.

View the House Appropriations Committee press release

View Sharon Terry's March 2009 Testimony

Department of Health and Human Services Secretary Kathleen Sebelius announced on Monday, March 15 the remaining $162 million in awards to improve the secure exchange of electronic health records between hospitals and healthcare providers within and among states. The funds are authorized through the Health Information Technology for Economic and Clinical Health (HITECH) Act, the health information technology provisions of the American Recovery and Reinvestment Act of 2009, to build infrastructure for the adoption and meaningful use of health information technology. The HHS awards will be directed to 16 states and state designated entities, recognizing the leading role states will have in the implementation of a national, widespread health information technology system. With these final awards, every state and eligible territory has received funds through the cooperative agreement program.

Access the HHS press release, including a list of state-by-state allocations

"Ideas for Change in America" is a crowd-sourcing competition that provides a platform for the public to propose ideas for addressing the challenges our country faces. Over the past several weeks, individuals and organizations proposed over 2,505 ideas and voted 209,950 times in support of action in fields from healthcare to social entrepreneurship to poverty in America to sustainable foods. The competition concluded on March 12.

On Monday, March 15, Change.org announced that Rare Disease, under an idea entitled "25 Million+, It's Time to Care About Rare Disease", is among the ten most popular ideas for change in America. Rare diseases (a disease affecting less than 200,000 people) affect in total nearly 30 million people in the United States, 15 million of whom have no treatment for their condition. In her Change.org blog post, Sharon Terry, President & CEO of Genetic Alliance, wrote that rare diseases need novel partnerships grounded in resource-sharing; decisions made on the basis of the whole; permeable boundaries; open access to both methods and data; and the evaluation of new knowledge, both process and content, to iteratively retool the effort. The 10 most popular ideas for change will be presented to the Obama Administration and will form the basis of national campaigns across the country.

View the Change.org announcement, which includes a description of all the winners.