Health Reform
A Vision for the Future
Check back for updates on our process and activities.
Genetic Alliance celebrates this historic moment with President Barack Obama, his family, and the new administration as we begin our journey together. As we embark on the process for transformation in the health system, we applaud the President’s commitment to infusing openness and transparency into his process, which we have witnessed throughout the campaign and transition and will continue into the presidency. Through Whitehouse.gov, the administration connects individuals to the political process and empowers them through the amplification of their voices. Genetic Alliance believes, as President Obama does, that wide stakeholder engagement and disruptive innovation are required to improve our health system.
Over the past several months, Genetic Alliance has actively contributed to requests and opportunities for the health reform process through a variety of media and meetings, including position papers and recommendations, blog postings, and presentations at external meetings and conferences. Through this website, we will continually provide updates to reflect our process and activities, invite stakeholder input, and inspire and engage in dialogue.
- Genetic Alliance Speaks at FDA Transparency Task Force Meeting - June 24, 2009
- The Food and Drug Administration (FDA) Transparency Task Force held a public meeting in Washington, DC on Wednesday, June 24, 2009 to receive feedback from interested individuals on how the FDA can make information on its activities and decision-making understandable and readily-accessible to the public. Kristi Zonno, Genetic Alliance’s Director of Genetics and Health Policy, provided testimony and proposed that the FDA create a public registry for all genetic and laboratory tests to enable transparency and promote informed decision-making for consumers and providers.
- Read Genetic Alliance’s testimony.
- Read the notice in the Federal Register about the June 24 Public Meeting.
- Urgent Meeting: The Future of Advocacy and Health During Healthcare Reform
- The impetus to pass comprehensive health reform legislation continues to grow as an energetic Congress and new leadership in our federal health agencies provide unprecedented support for expanding access to quality healthcare. The road ahead is both exciting and full of the unknown. Congress is promising passage of healthcare reform this summer. Now is the time for us to come together in urgency and openness to articulate our shared principles that focus reform on what truly matters: improved health for individuals, families, and communities.
- Please join us on Wednesday, June 17, as we use our collective voice to inform health reform.
- Learn more.
- Sharon Terry Testifies at House Appropriations Committee Hearing - March 18, 2009
- On Wednesday, March 18, 2009, Sharon Terry, President and CEO of Genetic Alliance, provided public witness testimony at a hearing of the House Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. Sharon discussed the necessity for harnessing the potential of health IT; developing a strategic, long-term plan to enhance the clinical adoption of discovery research; and crafting better oversight frameworks for genetic technologies, rare diseases, and orphan products. Most notably, however, Sharon called for an end to disease-specific earmarking and a shift to utilizing the energy inherent in networks to benefit all stakeholders.
- Read the testimony.
- Genetic Alliance Releases Statement on Earmarks - March 18, 2009
- On Wednesday, March 18, 2009, Genetic Alliance released its Position Statement on Congressional Earmarking, calling for a shift away from allocating money to one organization or disease, to harnessing the incredible power of 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. Genetic Alliance calls for the elimination of silos that have ultimately stifled progress. We are poised to synergize efforts to benefit all stakeholders; we must carve a new path to achieve the greater good for the collective community, requiring deep and meaningful collaboration.
- Read the Earmark Statement.
- Genetic Alliance Writes About Privacy and Access
- The Health IT Now! Coalition has launched a new, interactive website designed to engage health information technology (IT) stakeholders. The enhanced website now includes a blog as a forum for idea-sharing and brainstorming surrounding moving health IT forward in Congress. As an author of one of three early posts to the blog, Genetic Alliance submitted a piece titled “Transforming the Privacy Dialogue.” The submission explores the current dichotomous debate between privacy and access in health IT and discusses how the debate can be refocused on what matters: improved health. We strongly encourage the health community to visit the new blog, read the posts, and engage in the dialogue.
- Read the Genetic Alliance post.
- Recommendations on FDA and NIH
- Prior to the inauguration, like many health-related organizations, Genetic Alliance submitted recommendations to the Obama Transition Team on the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). We hope our comments will benefit the structure and function of the agencies. In the interest of transparency, Genetic Alliance will post all submissions to the new administration on this website. Per the administration’s commitment to transparency, they can also be found here:
- Recommendations for FDA
- Recommendations for NIH
- Disruptive Women in Healthcare
- Sharon Terry, President and CEO of Genetic Alliance, is a member of Disruptive Women in Healthcare and contributes regularly to the Disruptive Women in Healthcare blog. Amplified Public Affairs launched the platform with a press briefing at the National Press Club in September 2008, where the members could meet one another. The blog is a space for provocative ideas, thoughts, and solutions in the health sphere. Thus far, Sharon has written posts about innovation, dissolving boundaries, the impact of the election for previously-marginalized health conditions, and the spectrum of healthcare.
- Read Sharon Terry’s submissions to the blog.
- Genetic Alliance Holds Healthcare Community Discussion
- Before the holidays, Genetic Alliance staff members came together to participate in shaping the health reform process through a Healthcare Community Discussion, encouraged by the Obama Transition Team. Through our discussion, we drew profound conclusions and developed a new collective awareness and motivation. Most remarkably, we determined that we must be the change we want to see in healthcare. At the end of the process, we had developed a strategy for providing forums to fuel, inspire, and share the responsibility for improving the health of individuals and families and outlined how the Obama administration can develop an improved infrastructure for health systems.
- Read the summary of our Healthcare Community Discussion .
- Genetic Alliance Establishes Office Health Committee
- Like all of the other transformation we seek, Genetic Alliance has decided that change must begin with us—that we must seek out answers to our healthcare system on a very personal level. Our Healthcare Community Discussion inspired us to integrate “health” into our lives, both personally and professionally. To that end, Genetic Alliance staff members have volunteered to serve on an office Health Committee, which, among other initiatives, would seek to promote healthy lifestyle choices both within our office and externally.
Genetic Alliance Health Committee Goals- Interested in starting your own office Health Committee? Contact Vaughn Edelson at vedelson@geneticalliance.org for tips!
