Critical role of the March of Dimes in the expansion of newborn screening

Abstract

Expansion of newborn screening (NBS) has been driven primarily by a combination of advances in technology and medical treatment, and the sustained advocacy efforts of consumers and voluntary health organizations. The longstanding leadership of the March of Dimes has been credited by many as a critical factor in the expansion and improvement of state NBS programs. From the historic vantage point of four decades of March of Dimes involvement with newborn screening, this report reviews the unique origin of the first newborn screening test, and identifies from this point of origin several of the elements which still define the evolution of advocacy for NBS today. It also documents activities at the federal level and in seven states that have lead to expanded screening for newborns. Advances in NBS technology and medical treatment have informed policy development. Mobilization of volunteers and focused advocacy activities have brought about expansion of screening opportunities for newborns across the United States. But more work is needed. Continued application of the effective strategies identified in this report will help assure that all families have the best possible chance of assuring that their newborns do not have to suffer the complications of conditions that we know can be treated effectively.

Affective Economies and the Politics of Saving Babies’ Lives

“…The March of Dimes Foundation had endorsed a preliminary version of the ACMG report even before it was officially published, organized publicity campaigns in local newspapers, and fielded expert and lay testimonies at hearings -such as that of Nathan Schubert, the parent in our study. In many states, March of Dimes representatives were members of state NBS advisory committees (Howse, Weiss, and Green 2006). These efforts helped establish broad-based support for the expansion of NBS (Paul 2008: 11 -12).…”

Patient advocacy in newborn screening: Continuities and discontinuities

“…As the comments submitted by the Hunter's Hope Foundation and Genetic Alliance suggest, advocacy groups have played a crucial role in recent efforts to expand the number of conditions for which newborns are tested, efforts that have also prompted media stories that stress how a simple test could have prevented heartbreaking health problems in newborns and hence reinforced pressures on policy‐makers and administrators [CDC, 2001]. (For a discussion of March of Dimes strategy see Howse et al, 2006.) A commentator who generally applauds this trend and considers opposition “quixotic” notes that each proposal to add a new condition “is driven by a disease‐focused group of physicians and professionals who believe that their disorder belongs on a higher level of societal attention and to see the patients receive earlier and more effective therapy.…”

Newborn screening: Experiences in the Middle East and North Africa

“…Our ability to screen for more diseases, the advances of molecular techniques and preimplantation genetic diagnosis put in question the dogma that it is appropriate to screen only for conditions for which effective treatment already exists (Alexander and van Dyck 2006). The argument for broadening the concept of benefit from screening for the child to include the family also came from parents with affected children, those who lost children owing to inequity, and parent support groups such as the March of Dimes (Howse et al 2007).…”