Tag Archives: Secretary Sebelius
HHS Adopts Recommendation to Screen Newborns for Heart Defects

HHS Adopts Recommendation to Screen Newborns for Heart Defects

Word came late this afternoon that HHS Secretary Sebelius has adopted the recommendation to add Congenital Cyanotic Heart Disease to the Recommended Uniform Screening Panel.  You can see the formal newborn screening for CCHD recommendation here.

This has been a long time coming.  Many good people and organizations were working toward the early detection of heart defects for many years before Eve Isley was born…but her life, and her spirit helped inspire many to move this down the pipeline toward a federal recommendation to screen every newborn in this country for heart defects using pulse oximetry.  It’s a good day for babies and families.

Many thanks and  gratitude to the countless individuals and organizations who supported this – in the early days, and just recently.

Many thanks to Secretary Sebelius and her staff for taking the initiative to dig deeper and get the answers required to ultimately back a population health issue that will save and improve lives.

Many thanks to the federal advisory committee (SACHDNC) – and it’s diligent, poised and passionate leadership – that voted to recommend this screening one year ago (Dr. Howell, may your commitment to newborns and children will be emulated by many).

Many thanks to the CDC, HRSA, NIH, AAP, AHA, ACC, March of Dimes, and countless physicians, advocates and public health professionals who stepped up last winter to work on a strategic framework for implementing this screening.

And many thanks to this community.  Through 1in100, we have known the grace and strength of families willing to drop everything and help each other through the unthinkable.  Continued hope and healing to all those touched by this wicked disease.

This was a battle worth winning.  The war continues.  We are ready.  #1in100

Louder Voices.

Louder Voices.

Let there be no mistake.  Early detection of heart disease in newborns is essential.  I mentioned to someone yesterday that sometimes families feel like it falls on our shoulders to advocate.  These letters sent to HHS Secretary Sebelius this week show we’re all in it together.  Inspiring to see physicians, patient safety advocates and hospitals weighing in on this important issue.  Profoundly grateful.  Share these with your own hospitals and docs – they might want to add their voices too.

Letters in support of Newborn Screening for CCHD to the Department of Health and Human Services

Children’s National Medical Center, Washington DC

Darshak Sanghavi, M.D., UMass Memorial and University of Massachusetts Medical School Letter

Patient Safety Advocates Letter