The Bureau of Family Health (BFH) provides services to the perinatal/infant domain through a combination of Title V, other federal, and state funding as described below. Within the BFH, programs serving this population domain are split between the Division of Newborn Screening and Genetics (DNSG) and the Division of Child and Adult Health Services (DCAHS). Title V funds the breastfeeding awareness and support program, the safe sleep program, newborn screening program staff, and the newborn screening data system. Additionally, the BFH continues to supply educational materials including a training video, pamphlets and a commitment statement to hospitals and birthing centers in accordance with Pennsylvania (PA) Law 2002-176 on Shaken Baby Syndrome. State funds are utilized for the agreement with the contracted newborn screening lab, which includes payment for the disorders on the mandatory screening panel, grant agreements with the treatment centers, and a phenylketonuria (PKU) formula program. In addition, in 2019, the DNSG received Health Resources and Services Administration (HRSA) funding for activities related to newborn hearing screening.

There are three laws that have established the newborn screening program in PA: Newborn Child Testing Act, Newborn Child Pulse Oximetry Screening Act, and Infant Hearing, Assessment, Reporting, and Referral (IHEARR) Act. These laws have provided for the creation of the Newborn Screening Follow-up Technical Advisory Board (NSFTAB) and the Infant Hearing Screening Advisory Committee (IHSAC). These committees provide recommendations, guidance and support to the newborn screening program.

 

In PA, there are 94 birthing hospitals/free standing birthing centers and 99 midwives performing deliveries. In 2018, there were 135,026 infants born in PA, with 96.4 percent of births occurring in hospitals, 1.3 percent of births occurring in free-standing birth centers, and 2.3 percent of births occurring in other settings (e.g. clinic/doctor’s office, home birth). Occurrent birth data from PA in 2019 is not yet available. Newborn screening encompasses three types of screenings: dried blood spot, hearing, and critical congenital heart defects (CCHD). In 2019, the DNSG’s contracted laboratory, PerkinElmer Genetics, performed 133,316 initial dried blood spot screenings. The number of infants receiving a hearing screening in 2019 was slightly less at 131,762. In addition, 133,594 newborns received a CCHD screening. The DNSG entered into a data share agreement with the Vital Records Registry to identify newborns with a birth certificate without the completion of the various newborn screenings. In 2019, 747 newborns were identified without a dried blood spot screening. The Community Health Nurses within the DNSG provide case management services for newborns identified without screening results.

 

The infant mortality rate for PA dropped to 6.1 per 1,000 live births in 2016; however, the rate for black infants (14.6) was nearly double the rate for Hispanic infants (7.4) and more than triple the rate for white infants (4.6). In 2016, 9.3 percent of PA babies were born prematurely, which surpasses the Healthy People 2020 goal of 11.4 percent. The percentage of low birth weight babies was 8.2 with disparities again when stratifying the rate by race and ethnicity: black (13.9), Hispanic (9.0), white (6.9). Only the rate for white babies surpasses the Healthy People 2020 goal of 7.8 percent.

 

Prematurity remains the leading cause of death for infants. Of the 490 infant deaths reviewed by the Child Death Review teams in 2017, 249 deaths (50.8 percent) were due to prematurity. The examination of the causes of death within the infant age group (less than 1 year old) revealed that the cause of half of the reviewed infant deaths was prematurity. PA’s review of infant deaths for 2017 revealed that 56 (11.4 percent) of the 490 reviewed infant deaths were Sudden Unexpected Infant Death (SUID) related cases. This is the third highest cause of death for infants. Centers for Disease Control and Prevention (CDC) WONDER data for PA shows that black or African American infants die of SUID at more than twice the rate of white infants. Although the overall rate had seen a decline over the previous five years in PA, in 2015, the rate for black or African American and for white infants rose higher than the national rate. The rate of death per 100,000 for white infants rose above the national rate for the first time in five years.

 

In 2019, the BFH participated in Cohort 1 of the Child Safety Learning Collaborative (CSLC). The CSLC provided the BFH with the opportunity to learn about and apply quality improvement methodologies to infant and safe sleep programming in order to prevent SUID-related deaths. The BFH also looks forward to participating in Cohort 2 of the CSLC. In Cohort 2, the BFH applied to continue learning about SUID prevention and to address bullying prevention among children and adolescents (the latter will be reported on in the adolescent domain moving forward). As new quality improvement processes related to SUID-related deaths are learned through participation in the CSLC, the BFH will identify opportunities for implementation.

 

Priority: Families are equipped with the education and resources they need to initiate and continue breastfeeding their infants

 

NPM 4: A) Percent of infants who are ever breastfed B) Percent of infants breastfed exclusively through 6 months

 

Objective 1: Increase the proportion of PA birthing facilities that provide recommended care for breastfeeding mothers and their babies

 

ESM: Percent of facilities designated as a Keystone 10 facility each fiscal year

 

Modeled after the World Health Organization’s Ten Steps to Baby Friendly Hospitals Initiative, as well as similar initiatives in other states, the PA Breastfeeding Awareness and Support Program (program) has implemented its Keystone 10 Initiative (K-10) in birthing facilities statewide. The program provides funding to the PA Chapter of the American Academy of Pediatrics (PA AAP) to administer the K-10 initiative. This voluntary initiative focuses on the adoption and implementation of the ten evidence-based steps to successful breastfeeding. The K-10 initiative began in March 2015 with 69 participating birthing facilities engaged in a three to five-year initiative to implement the ten steps to successful breastfeeding. In 2019, 84 of PA’s 90 birthing facilities were engaged in the K-10 initiative. The program’s goal was for 22 percent of K-10 facilities to be designated as completing the K-10 initiative by the end of 2019. This goal was met, as 24 percent of K-10 birthing facilities have completed all ten K-10 steps.

 

According to a national study, the effect of maternity-care practices on breastfeeding plays a major role in breastfeeding rates. Mothers in the United States are 13 times more likely to stop breastfeeding before six weeks if they delivered in a hospital not participating in the K-10 initiative in comparison to mothers who delivered at a facility where at least six of the ten steps were followed. After the completion of the fourth year of the initiative, 18 hospitals have implemented six or more steps and 20 hospitals have completed all ten steps of the K-10 initiative.

 

Facilities participating in the K-10 initiative have been grouped into five regions. Each region has an in-person biennial collaborative. The 2019 collaborative meetings focused on providing training on breastfeeding best practices and reviewing the K-10 application process. Facilities were given the opportunity to share best practices and procedures. Part of the discussion included each facility naming its greatest accomplishment and biggest barrier in the K-10 process. Facilities who have already completed the ten steps provided insight on how their program was able to successfully implement the difficult steps. Overall, the collaboratives provided facilities the opportunity to brainstorm with other facilities and share information on the K-10 process. A web-based project management tool, Base Camp, is utilized to allow the regional collaboratives to share information, best practices, and pose discussion questions. In addition to the collaboratives, the program provided a 15-hour breastfeeding management course to staff members of facilities participating in the K-10 initiative. In 2019, 412 K-10 facility staff members completed the training.

 

In June 2019, the webinar, Breastfeeding Support Through the Lens of Cultural Respect & Inclusiveness, was offered to all K-10 facilities. Breastfeeding support, cultural respect and inclusiveness in minority populations were discussed. Approximately 50 attendees participated in the webinar and 21 of these attendees received continuing education units (CEUs).

 

The most common K-10 barriers recognized are the lack of administrative support for staff implementing K-10 and the length of time required to approve and implement the evidence-based steps. Multiple efforts have been implemented to overcome these barriers. Each facility has a designated champion who is aware of the importance of breastfeeding to both maternal and infant health. These champions are the driving force of each facility’s momentum. K-10 regional facilitators are available to provide on-site technical assistance to facilities reporting lack of administrative support. In addition, there are currently 20 K-10 designated facilities available to offer guidance to the other K-10 facilities.

 

Objective 2: Starting with reporting year 2017, annually increase number of counties with a breastfeeding rate at or above the 2016 statewide average of 81 percent

 

ESM: Percent of counties with breastfeeding rates at or above the 2016 statewide average of 81 percent each fiscal year

 

The program aims to increase the percent of counties with breastfeeding rates at or above the 2016 statewide average of 81 percent each fiscal year. The 2019 goal required 52 percent of counties to have a breastfeeding rate of 81 percent or higher. This goal was not met, as the number of counties with a breastfeeding rate at or above the statewide average increased from 42 percent to 45 percent. While the number of counties meeting the statewide average did not meet the goal, the overall statewide breastfeeding rate increased to 82 percent.

 

In state fiscal years 2018-2020, the program is conducting a pilot project where community-based organizations in counties with a breastfeeding rate below the statewide average will receive a mini-grant to provide breastfeeding education and outreach to help raise breastfeeding rates. In the first year of the project, five community-based organizations were selected and approved to receive mini-grants. The services were provided in the first half of 2019. In the second year of the project, 10 community-based organizations were selected and approved to receive mini-grant funds to increase county breastfeeding rates and provided services through the second half of 2019 and the first half of 2020. Mini-grant activities will be monitored and analyzed to determine if the outreach was successful.

 

The program also provided funding to the PA AAP to develop the Educating Physicians in Communities-Breastfeeding Education, Support and Training (EPIC BEST) program. The EPIC BEST program provides breastfeeding promotion activities focused on increasing breastfeeding knowledge in community-based healthcare settings so that these settings can become a source of information and support for pregnant women and new mothers. EPIC BEST trainings are conducted in primary care, OB-GYN, family practices and other locations. EPIC BEST trainings include education on breastfeeding best practices, prenatal education for mothers, common problems for breastfeeding mothers, education for mothers going back to work and where to find breastfeeding educational resources. Health practices located in the northeast, northcentral, northwest, and southwest counties, as well as practices in low breastfeeding areas such as north Philadelphia and Chester county, received breastfeeding communications on upcoming EPIC BEST trainings via email, fax, and regular mail. K-10 facilities in these counties were also used to promote EPIC-BEST in their communities. As a result of the outreach, EPIC BEST held 14 trainings and trained 155 total healthcare professionals. Of the 14 EPIC BEST trainings, eight trainings were held in counties with a 2016 breastfeeding rate lower than 81 percent: Berks, Fayette, Jefferson, Luzerne, Washington, and Westmoreland counties. Of the 155 healthcare professionals receiving EPIC BEST training, 98 were in these six counties. The professionals attending these trainings were encouraged to take education gained back to their practices and apply it to their county and community.

 

Objective 3: Annually identify and develop a minimum of one collaborative opportunity with programs serving MCH populations

 

ESM: Number of new collaborations developed (between breastfeeding programs and other programs)

 

In 2019, the program provided mini-grant funds to four community-based organizations to provide breastfeeding education and support in areas with a low African American breastfeeding rate. Specifically, funds are being used to provide one or more of the following services: education on the benefits of breastfeeding for African American mothers and their family members, support for African American mothers who choose to breastfeed, the creation of peer support networks for African American breastfeeding mothers, and/or, faith-based health promotion and education on breastfeeding in African American communities. Funds were provided to four partners in Fall 2018 and services were provided in the first half of 2019.

 

In 2019, the Einstein Healthcare Network provided a support group for mothers, offering professional and support services to women who plan to breastfeed or have initiated breastfeeding. The group provided mothers with parent-to-parent support and discussed barriers like milk supply concerns, nipple injury and weight gain challenges. The group met every Tuesday, totaling more than 40 collaborative visits with the International Board-Certified Lactation Consultants (IBCLC) through the first 17 sessions. On average, each session consisted of approximately three to four participants.

 

The Hamot Health Foundation also provided breastfeeding education and support through Erie High School student parenting classes during the 2018-2019 school year. The classes provided education to 13 pregnant or nursing students on the benefits of breastfeeding and made an experienced lactation consultant available during all classes. Through education and counseling, the breastfeeding initiation rate at the Erie High School increased from 17 percent to 67 percent during the project period. In the future, resources will be used to help develop individual plans for each student. Attending sessions was difficult for some students, as their classes and work schedules changed during the school year.

 

The Healthy Start Center for Urban Breastfeeding provided a series of breastfeeding and childbirth education classes to African American women in Allegheny and surrounding counties. Classes were held in April, May and June of 2019, providing education on topics such as: maternal and child health, breastfeeding anatomy and physiology, benefits of human milk, social and cultural norms around infant feeding, impact of a support system, supporting all women who desire to breastfeed, and, lactation issues and resolutions. Healthy Start’s breastfeeding initiation rate increased by 11 percent to 75 percent in 2019 as a result of breastfeeding classes and education provided through this project.

 

In October 2019, the program collaborated with the DCAHS. The DCAHS invited the program to the quarterly County Municipal Health Department (CMHD) Title V meeting. At this meeting, program staff presented an overview of the PA Breastfeeding Awareness and Support program, discussed opportunities to collaborate and provided information on future breastfeeding education and support funding opportunities.

 

Three of the CMHDs provided breastfeeding support and education to over 800 women served at the local level. Services offered through these programs include home visits from Certified Lactation Counselors (CLC) or IBCLC to assist mothers with any challenges they encounter with breastfeeding, referrals to breastfeeding support groups and community resources as well as providing loaner breast pumps to women who are unable to access one otherwise. Allegheny County Health Department offers a breastfeeding helpline to County residents, which is staffed by CLCs and Registered Nurses. In 2019, the helpline answered 115 calls. Bethlehem Health Bureau (BHB) provides both home visits and telephone consultations for women enrolled in their home visiting program and to women referred from local hospitals and organizations such as WIC. In 2019, BHB’s breastfeeding program received almost 40 referrals with each referral receiving an informational packet containing program details and breastfeeding education. Every woman that is referred receives a follow-up call to offer an in-home visit from a CLC.

 

The Philadelphia Department of Public Health (PDPH) has a breastfeeding taskforce led by an IBCLC. The taskforce aims to provide training to healthcare professionals and other community groups to better equip them with tools to support the breastfeeding women they encounter. Additionally, consultations to providers caring for pregnant and lactating women and their families are offered to medical schools, nursing schools, hospitals, public health centers and community-based agencies. In 2019, training was provided to 441 professionals and students. In order to provide direct support to women in Philadelphia, four credentialed breastfeeding counselors and consultants provide education, counseling and consultation to pregnant women and mothers with infants at City Health Centers and, as needed, at home visits. The team receives referrals from pediatricians and other clinic staff for women who are interested in breastfeeding or who have already started breastfeeding. Along with common questions related to milk supply and latch, team members educate mothers about their right to breastfeed in public and help mothers talk to family members about the benefits of exclusive breastfeeding. In 2019, 426 women received services from this program. PDPH also partnered with the Breastfeeding Awareness and Empowerment (BAE) Café to encourage and support breastfeeding among African American women living in Philadelphia. Offered twice a month at a library in West Philadelphia, the group provides support to mothers for breastfeeding and allows the women to make connections with other moms and their infants in the community. The group is free to attend, provides breastfeeding supplies, and mothers are welcome to bring their children, which reduces barriers to attending the group.

 

Objective 4: Annually implement a minimum of one media opportunity promoting breastfeeding as the infant feeding norm for the state

 

ESM: Number of new media opportunities implemented promoting breastfeeding per fiscal year

 

In 2019, the Foundation for Delaware County (foundation) launched the “Bring Baby to Breast” campaign to promote breastfeeding in the Philadelphia area. Through providers, mothers, advocates and health care professionals, the foundation utilized mini-grant funds from the program to support two major projects: a full-day breastfeeding conference and a promotional campaign designed to support breastfeeding among African American mothers. The campaign included parent focus groups comprised of new and expecting mothers. Feedback was used to develop the “Bringing Baby to Breast” educational cards. Four thousand cards were printed and delivered to local partners like WIC and Healthy Start, as well as local hospitals, providers and community partners. Additionally, the cards were distributed to mothers and community partners during the “Bringing Baby to Breast” conference. More than 90 people attended the conference. Topics included a discussion on institutionalized racism, engaging fathers in supporting breastfeeding, the role of the community-based doulas and panel discussion.

 

In 2019, the PA AAP developed a quarterly newsletter for distribution to all K-10 facilities and community partners. The newsletter provides information on upcoming regional collaborative meetings, webinars, and training opportunities. Additionally, the newsletter is used to disseminate feedback and information from past meetings and trainings and provide K-10 step completion support and resources.

 

Priority: Safe sleep practices are consistently implemented for all infants

 

NPM 5: (A) Percent of infants placed to sleep on their backs (B) Percent of infants placed to sleep on separate approved sleep surface (C) Percent of infants placed to sleep without soft objects or loose bedding

 

Objective 1: Beginning in the second year of the grant cycle, annually decrease the rate of mothers who report sleeping with their baby in the first year of life

 

Objective 2: Annually decrease the percent of infants who are strangled or suffocated due to unsafe sleep environment

 

ESM: Number of hospitals recruited to implement the model safe sleep program

 

ESM: Percentage of infants born whose parents were educated on safe sleep practices through the model program

 

ESM: Percentage of hospitals with maternity units implementing the model program

 

ESM: Number of social marketing messages disseminated

 

Sleep position and environment are modifiable factors for infants and can have a direct result in reducing infant mortality. A multitude of challenges must be overcome to change the collective knowledge and practice to achieve safe sleep practices for all infants at all sleeps. In 2019, the Philadelphia Fetal and Infant Mortality Review (FIMR) team made four specific observations around infant death and safe sleep with associated recommendations and actions for possible preventive measures. The observations were as follows: 1) Grandparents may be protective of the mother/caretaker and act as a gatekeeper for safe sleep education and services after a sleep-related infant death; 2) Substance use and smoking has a high coincidence with infant mortality cases; 3) Many families have DHS involvement prior to infant death; and 4) Many infants have previously stayed in a neonatal intensive care unit (NICU). Respective recommendations include: 1) Continue outreach and teaching to entire family; 2) Incorporate safe sleep education in new Plans of Safe Care initiative; 3) Partner with DHS to ensure safe sleep environment is part of assessments & education and; 4) NICUs should model safe sleep conditions in the hospital.

 

A study showing increased adherence to safe sleep practices in the hospital setting when a bundled intervention was implemented at room orientation rather than hospital discharge prompted the BFH to support development of such a model program. The development and implementation of a hospital-based model safe sleep program is supported with a social marketing approach targeting Philadelphia.

 

The grant with the Trustees of the University of Pennsylvania continued successfully for the infant safe sleep initiative during 2019. The grantee was fully engaged in recruitment and implementation this year and efforts extended well beyond the southeastern corner of the state. All components of the hospital-based model safe sleep program, including training modules, patient education materials, implementation forms and guides, and evaluation instruments are available online at www.pasafesleep.org. After implementing the hospital-based model safe sleep program, the grantee has been able to strengthen the evidence base used to develop the program. The dedication to supporting the model with ongoing data adds to the strength and validity of the model resulting in greater interest in the model from birthing hospitals throughout the state.

 

By the end of 2019, the hospital-based model safe sleep program was fully implemented in nine of the 101 birthing hospitals (nine percent) which exceeded the ESM goal of four percent of birthing hospitals with implementation. Over 23,000 infants or 17 percent of the births in 2019 had parents who received safe sleep education through the model program exceeding the nine percent goal.

 

The grantee recruited six hospitals with maternity units to implement the model safe sleep program in the next year which surpasses the ESM goal of three for 2019. These hospitals are located throughout the state, in a variety of health systems, and encompass small rural hospitals as well as academic medical centers.

 

To support the messaging provided in the hospital setting, the grantee implemented a social marketing campaign using social media posting and advertisements, public transit advertisements, and email blasts. The social media advertisements engaged the target demographic populations and drove traffic to the PA Safe Sleep website. The simple and consistent messaging supporting safe sleep practices now reaches families in both the hospital and community settings. Previous implementation of the social marketing plan demonstrated that there was greater impact with quality and placement of messages rather than quantity of messages. As such the ESM targets were reduced for the future period. During 2019, the strategy was adjusted again and highly focused and targeted messages were disseminated. Previously, an image and message were targeted at potential viewers in an age range. During 2019, the images and text of messages was targeted to the age range as well as gender, race, pregnancy status, or family relationship type like parent or grandparent. This allowed for the message to have a stronger impact in relaying the safe sleep message. Due to this change, more unique messages were used than were used in the prior period. Now, to target a specific age range, several combinations of images and text are used in place of one message. The previously adjusted target ESM of 86 social marketing messages disseminated was achieved and exceeded in 2019 with 166 messages disseminated. While this approach is a departure from the strategy in the prior year, the honing of the messages is expected to have better results on the individual behaviors and practices around safe sleep.

 

Priority: Appropriate health and health related services, screenings and information are available to the MCH Population

 

SPM: Percent of newborn screening dried blood spot (DBS) filter papers received at the contracted lab within 48 hours after collection

 

Objective 1: By 2020, increase the annual percentage of DBS samples with a transit time to the contracted lab of less than 48 hours by 5% each year to expedite diagnosis and treatment

 

The DNSG has continued to implement efforts to improve the timeliness of dried blood spot (DBS) newborn screening. With a baseline of 39.7 percent of DBS samples collected in 2014 received by the laboratory within 48 hours of collection, the DNSG has shown steady progress in improving the SPM. In 2019, 55 percent of samples were received at the laboratory within 48 hours of collection, which fell short of the 2019 goal of 59 percent.

 

The DNSG continues to provide quarterly reports to all hospitals, which include the average collection to receipt time and benchmarks the hospital against the state average. The reports are sent to the DBS coordinator, nursery manager and NICU manager for each birthing hospital. PerkinElmer Genetics, the contracted screening laboratory, provides birthing hospitals monthly reports which include the hospital’s average collection to receipt, the state average collection to receipt, and the hospital’s percentage of unacceptable DBS samples. Any hospital with a collection to receipt timeframe greater than 52 hours receives technical assistance from DNSG staff. The DNSG has received positive feedback and has seen increased hospital efforts due to the sharing of timeliness data. Technical assistance includes site visits to low-performing hospitals, with timeliness as a key factor, to educate them on best practices and determine barriers to meeting the recommendations. The DNSG utilizes a comprehensive site visit survey tool to assess hospital metrics. It is comprehensive across dried blood spot, CCHD and hearing screening. However, there are two sections dedicated to DBS collection and shipping, which focus solely on necessary improvements in collection and transit.

 

With roll-over Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) 360 funding, the DNSG provided mini-grants to two additional large birthing hospitals to implement a Health Level 7 (HL7) interface between the hospital and PerkinElmer Genetics. HL7 is a set of international standards for the transfer of clinical and administrative data between software applications used by various healthcare providers. The HL7 interface between hospitals and PerkinElmer Genetics allows the transfer of data between the hospitals’ electronic medical record system and the laboratory system. This is a continued effort to decrease the timeframe between collection of the DBS specimen and the release of the screening results. The identified hospitals began the planning and building of the HL7 interface and went live in 2019.

 

In 2019, the DNSG worked on the development of an online newborn screening learning module using NewSTEPs 360 funding. The development is being completed by the University of Pittsburgh via an inter-governmental agreement. The module has a focus on newborn screening timeliness. The module will be posted on the TrainPA website in early 2020.

 

The DNSG continues to release newborn screening quarterly newsletters. Newsletters provide submitters (hospitals, birthing centers, and midwives) with program updates, DBS timeliness improvement methods and highlights a hospital with an improved transit time. In addition, the DNSG held quarterly conference calls, inviting DBS coordinators, nursery managers, NICU managers, and midwives to discuss barriers, educational needs, and program updates.

 

A barrier to timely specimen transit remains the out-of-hospital submitters. Most of these submitters do not utilize United Parcel Shipping (UPS) and often batch shipments to save on costs. Both the DNSG and PerkinElmer Genetics continue to promote the use of UPS shipping and provide technical assistance on the importance of timely screening results.

 

Objective 2: By 2020, implement a system where all newborns born in Pennsylvania are screened for all conditions listed on the Recommended Uniform Screening Panel (RUSP)

 

In PA, there is a two-panel system for newborn screening consisting of a mandatory screening panel and a mandatory follow-up panel. In 2019, newborns were screened for 10 mandatory conditions and the submitters (hospitals, birthing centers, and midwives) elected which of the 27 other conditions on the mandatory follow-up panel were screened for. The list of disorders on the mandatory screening panel and mandatory follow-up panel align with the Recommended Uniform Screening Panel (RUSP).

 

Some submitters, mainly midwives, elect to only screen for the disorders listed on the mandatory screening panel. The DNSG pays for the screening of the mandatory conditions utilizing state funds and the submitters are required to pay for the screening of the disorders on the mandatory follow-up panel if they elect to screen for those conditions. Due to the out of pocket expense, most midwives elect not to screen for mandatory follow-up disorders.

 

In 2019, there were 99 hospitals/birthing centers and 98 midwives performing deliveries in PA. Fifty midwives, accounting for 437 births, elected to only screen for the mandatory conditions; 9 hospitals/birth centers and 22 midwives elected to screen for all disorders on the RUSP except for Severe Combined Immunodeficiency (SCID), which accounted for 10,204 births; and the remaining 90 hospitals and 26 midwives screened for all conditions listed on the RUSP, accounting for 125,635 births. The percentage of hospitals and birth centers screening for all conditions listed on the RUSP increased from 78% in 2017 to 92% in 2019. This increase can be attributed to the technical assistance provided to each hospital and birth center electing not to include SCID on their screening panel. In conjunction with the screening laboratory sending notification letters to submitters, the quality assurance nurse provided verbal education to management staff at each facility regarding the importance of screening for SCID. The SCID Newborn Screening and Follow-up Technical Advisory Board subcommittee has been working with the Clinical for Special Needs and midwife community to continue to increase the number of newborn screening submitters screening for SCID. This collaboration ensured a significantly higher proportion of out-of-hospital births were screened for SCID.

 

In 2019, House Bill 730 was introduced by Representative Cruz and Senate Bill 983 was introduced by Representative DiSanto. These bills, supported by the DNSG and the NSFTAB, would require the DNSG to merge the two-screening panels and implement a newborn screening fee with funds deposited into a Newborn Child Screening Program Account. PA is one of the few states without a newborn screening fee. This has historically made it difficult to add disorders to the mandatory screening panel as the precedent has been set that the DNSG will pay for the screening of disorders on the mandatory screening panel. Therefore, to add a disorder to the mandatory screening panel, the DNSG must request an increase in the state appropriation for newborn screening. Both bills are currently in the legislative process.

 

On July 2, 2018, U.S. Department of Health and Human Services Secretary Alex Azar accepted the recommendation from the Advisory Committee on Heritable Disorders in Newborns and Children to add spinal muscular atrophy (SMA) to the RUSP. The Department of Health, with the approval of the NSFTAB and in accordance with the Newborn Child Testing Act, has the authority to establish changes to the lists of newborn screening tests, the diseases for which newborn children are screened for and laboratory screening results. On September 20, 2018, the NSFTAB recommended that SMA be added to the mandatory screening panel and that recommendation was approved by the Secretary of Health in Fall 2018. Implementation of SMA screening began on March 1, 2019. Since implementation, the DNSG has identified nine newborns with SMA. Due to newborn screening, these infants were able to receive early treatment. Beginning therapy as early as possible is the only way to prevent motor neuron loss which causes debilitating and potentially fatal muscle weakness. For newborns identified through screening, treatment should begin even before the infant shows symptoms of SMA. The addition of SMA to the mandatory screening panel has proven to be a success; had the Division not added SMA to the mandatory screening panel, these newborns would not have been identified by newborn screening and treatment prior to the development of symptoms would have been unlikely, leading to very different outcomes for these children.