Cure SMA has announced a new partnership with the District Policy Group, a boutique lobbying, public policy, and advocacy practice, to advocate for several key policy areas on behalf of the SMA community.

With seven drug programs now in clinical trials, the Patient-Focused Drug Development emphasis of PDUFA V, and the progress toward passage of 21st Century Cures, now is the opportune time for us to maximize our influence with government and regulatory bodies, in order to speed our path to a treatment and cure for SMA.

When we changed our name to Cure SMA last year, a primary goal was to broaden our community to attract even more people to be a part of our mission. Families remain at the heart of what we do, and we are focused on accelerating momentum toward a treatment and cure.

The partnership with the District Policy Group provides a unique opportunity to continue our expansion by bringing key influencers in the FDA, Congress, and state and local legislatures into our community.

Advocating for Change

The District Policy Group will be working with us on five major areas:

  • FDA Engagement Initiative. Pursue timely and safe approval of SMA drugs by the FDA, and making sure the patient perspective is properly represented to the FDA during these discussions.
  • Newborn Screening Program. Gain broad support for newborns to be automatically screened for SMA.
  • Legislative priorities. Advance key initiatives such as the 21st Century Cures Initiative.
  • Grassroots advocacy. Focus on both local and national opportunities for our community to get involved.
  • Medical reimbursements. Find opportunities within Medicare, Medicaid, and the Affordable Care Act for more families to obtain the equipment and care they and their children need.

About District Policy Group

The District Policy Group is a bipartisan boutique lobbying practice within Drinker Biddle & Reath that has deep experience – and a long record of success – in advancing health care clients’ interests before the legislative and executive branches of government at the federal level. The District Policy Group team, comprised of a dozen lobbyists, public policy specialists, and grassroots coordinators, has extensive expertise in government relations, advocacy, Capitol Hill policy and politics, federal agency rulemaking, grassroots organizing, social media, and coalition building. The District Policy Group is particularly skilled at assisting not-for-profit patient advocacy organizations in understanding the political and policy landscape, and with that information, helping clients in developing creative legislative and regulatory strategies, achieving their public policy goals, and operating effective grassroots and grasstops advocacy programs. In addition, the team assists clients in building and maintaining direct, close, and productive relationships with Members of Congress, Congressional staff, federal agency officials, and key thought leaders and stakeholders in the health policy arena.