History of the Other Work of the SACHDNC Alex R. Kemper, MD, MPH, MS September 22, 2011.

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Presentation transcript:

History of the Other Work of the SACHDNC Alex R. Kemper, MD, MPH, MS September 22, 2011

All Rights Reserved, Duke Medicine 2007 Background The SACHDNC has addressed broad issues related to improving health outcomes through newborn screening Many active subcommittees –Surveys –White papers –Recommendations to the SACHDNC Focus: Recommendations made to the Secretary, HHS, from the SACHDNC

All Rights Reserved, Duke Medicine 2007 Chartered in 2003

All Rights Reserved, Duke Medicine 2007 Newborn Screening Saves Lives Act

All Rights Reserved, Duke Medicine 2007 SACHDNC Activities: Newborn Screening Saves Lives Act Make systematic evidence-based and peer-reviewed recommendations Develop a model decision-matrix for newborn screening expansion, including an evaluation of the public health impact of expansion Consider ways to ensure that all states attain the capacity for screening, short and long-term follow-up Standardize language and terminology used by state newborn screening programs Quality assurance, oversight, and evaluation Education Assessment of costs and effectiveness Coordination of surveillance activities

All Rights Reserved, Duke Medicine 2007 Summary of Activities Topics to discuss today –Health Reform, including Coverage for Medical Foods –Education –Long-Term Follow-Up –National Contingency Plan –Sickle Cell Disease

All Rights Reserved, Duke Medicine 2007 Health Reform: Letter to the Secretary, HHS, May 19, 2009 The committee desires –A more uniform approach toward coverage by health care payers of medical foods and foods for those conditions recommended by the Committee –Specific amendments to Medicaid legislation to ensure more uniform coverage by State Medicaid Programs

All Rights Reserved, Duke Medicine 2007 Health Reform: Letter to the SACHDNC, October 2, 2009

All Rights Reserved, Duke Medicine 2007 Health Reform: Letter to the Secretary, HHS, March 23, 2010

All Rights Reserved, Duke Medicine 2007 Health Reform: Response from the Secretary, HHS, September 23, 2010 The first 3 recommendations were accepted –The lack of coding and billing is an administrative burden –Medical home models were specifically highlighted –The benefit of electronic exchange of data was seen as a way to improve care coordination –But, what about medical foods?

All Rights Reserved, Duke Medicine 2007 Health Reform: Response from the Secretary, HHS, September 23, 2010

All Rights Reserved, Duke Medicine 2007 Health Reform: Response from the SACHDNC, June 14, 2010

All Rights Reserved, Duke Medicine 2007 Health Reform: Response from the Secretary, HHS, December 14, 2010

All Rights Reserved, Duke Medicine 2007 Health Reform RCs –Have conducted a survey of barriers to the receipt of medical foods –Will address these barriers at a local level, with lessons learns summarized in partnership with the NCC

All Rights Reserved, Duke Medicine 2007 Health Reform Illustrates how the SACHDNC works with subcommittees –Defining LTFU (care coordination through a medical home, evidence-based treatment, QI, new knowledge discovery) –Facilitating assessment in partnership with the RCs and the NCCs

All Rights Reserved, Duke Medicine 2007 Education The early work of the SACHDNC anticipated the Newborn Screening Saves Lives Act

All Rights Reserved, Duke Medicine 2007 Education Education Subcommittee developed a report describing the need for primary care education that was endorsed by the SACHDNC Led to the funding, through HRSA, of a Genetics in Primary Care Training Institute Illustrates –Active role of subcommittees –Action through funding

All Rights Reserved, Duke Medicine 2007 National Contingency Plan Presented to the Secretary on August 6, 2010 Each state to have a newborn screening contingency plan CDC, with support from HRSA, will lead efforts to coordinate implementation with the Assistant Secretary for Preparedness and Response RCs have taken an active role in disaster planning

All Rights Reserved, Duke Medicine 2007 Sickle Cell Trait: Response from the Secretary, HHS, June 27, 2011

All Rights Reserved, Duke Medicine 2007 Sickle Cell Trait: Response from the Secretary, HHS, June 27, 2011

All Rights Reserved, Duke Medicine 2007 Dried Blood Spots States develop policies related to –Access –Disposition –Education of health care professionals –Education of families –Documentation of parents’ wishes Facilitate a national dialogue Explore the utility and feasibility of a voluntary national repository

All Rights Reserved, Duke Medicine 2007 Dried Blood Spots: Response from the Secretary, HHS, April 13, 2011

All Rights Reserved, Duke Medicine 2007 Dried Blood Spots Area of intense work by –RCs –NCC –NNSTRN –Subcommittees of the SACHDNC –Projects funded by HHS

All Rights Reserved, Duke Medicine 2007 Summary SACHDNC and its subcommittees are active and productive Work has led to improvement in the care that children and their families receive There are many important areas to address Model of Success: –Under guidance from the SACHDNC, the subcommittees develop reports –If approved by the SACHDNC, these reports are used to Inform recommendations to the Secretary, HHS The implementation activities of the RCs and NCC