Expanding Medicaid Payment for Pasteurized Donor Human Milk in High-Risk Neonates Free

New York Chapter 2 is 1 of 3 AAP chapters within New York State. The chapter includes 2 suburban counties, Nassau and Suffolk Counties, and 2 boroughs of New York City—Brooklyn and Queens. The chapter’s total population is approximately 7.7 million. Membership consists of approximately 1500 pediatricians who live or practice in the region.²³  AAP SONPM promotes the interests of neonatologists and pediatricians who care for newborns.²⁴  The group is the largest subspecialty section within the AAP and represents an estimated 4500 members, or roughly 7% of all national AAP members.

To expand legislative efforts aimed at increasing state-based coverage of PDHM for hospitalized, very low birth weight (VLBW) infants, this current advocacy work aimed to create novel policy partnerships between AAP SONPM and local AAP chapters. We completed the following advocacy steps to reach our goal: creation of a state legislative toolkit to assist neonatology advocates in all aspects of this goal, including bill creation, coalition building, and passage; recruitment and pilot funding for neonatologists at academic medical centers to collaborate with local AAP Chapters; coaching and mentorship calls to support efforts; and creation of academic deliverables such as publications. The proposed outcome was drafting or passage of a bill providing Medicaid PDHM coverage within 2 years.

Beginning in 2015, New York Chapter 2 began a 2-year advocacy effort to obtain Medicaid coverage for PDHM for infants with birthweights ≤ 1500 g (VLBW infants) or known congenital intestinal conditions (Table 1). Led by an academic neonatologist who also served as the Chapter Vice-President, this effort included: recruitment of 2 key legislators (1 a scientist, the other a new mother) to codraft legislation, a press conference to push for inclusion of this provision in the state budget attended by academic neonatologists, submitted legislative testimony, a cost-effective analysis of potential savings to Medicaid, creation of a coalition of advocacy organizations interested in newborn care (March of Dimes, New York State Perinatal Association, New York State Milk Bank etc.), and drafts of letters supporting the bill to be completed by local pediatricians, private practice and academic obstetricians, neonatologists, representatives of the coalition organizations, and parental advocates.^25,26 

Based on this work, the 2017 New York State budget required payment for PDHM to VLBW infants at a rate equal to the per-ounce price from a nationally-certified not-for-profit human milk bank plus 20% for storage, handling, and logistic costs.²⁵  New York State Medicaid, in concert with New York State neonatologists representing both private practice and academic settings, created and released implementation guidelines in November of 2017, outlining PDHM documentation requirements and the process for requesting payment.²⁷  Yet, despite the addition of New York State, ∼70% of births remained in states without PDHM coverage.

The AAP SONPM Donor Milk Toolkit was designed to assist neonatologists by introducing specific tools related to PDHM legislation created during the New York State (NYS) experience. The toolkit included a worksheet on general advocacy principles, such as collaborating with local organizations, identifying a child-friendly legislator or Medicaid official, and a list of possible coalition partners to assist in this effort (Supplemental Information 1 and 2). Suggested partners included local hospitals, the state chapter of the American College of Obstetricians and Gynecologists, March of Dimes, practicing neonatologists, NICU quality collaboratives, pediatric gastroenterologists, midwifery organizations, local volunteer donor milk banks, and parents of premature infants who had NEC. Parents were recruited via the NEC Society, a nonprofit organization dedicated to reducing the burden of NEC, which hosts a large network of nonmedical volunteers. For interested legislators recruited by this coalition, a sample bill based on the 2017 New York State law was included to expedite bill drafting. For legislators and state Medicaid officials concerned about cost, the toolkit approximated cost-effectiveness for any state based on rates of preterm birth under Medicaid, maternal breastmilk use, medical and surgical NEC rates, and state-published NICU payments.²⁵  A draft letter, outlining the rationale for PDHM use, adaptable either by physicians expressing support or legislators seeking cosponsorship of a bill from colleagues and/or Medicaid officials was also included. A bibliography of scientific papers was available.

To promote use of the toolkit, the AAP SONPM conducted outreach efforts to identify early-career neonatologists with an interest in advocacy. Outreach efforts included posting the pilot funding opportunity in all-section member communications and social media outlets. A podcast was recorded to review the New York State experience, discuss the urgency for other states to adopt this policy, and potentially recruit neonatology leaders in several states from either private or academic practice. AAP SONPM funded 2 pilot grants of $5000 to selected early-career neonatologists in Ohio and Georgia to advance insurance coverage of PDHM in VLBW infants, awarded after a competitive grant process. In 2019, Georgia and Ohio represented 3945 total VLBW births or 8.1% of all US VLBW births.²⁸  Funding required partnership with the local AAP chapter, encouraged use and adaptation of the toolkit, and recommended recruitment of coalition partners. Though neonatal physicians from any practice setting were eligible, both grants were ultimately awarded to academic neonatologists. Grant funding supported time creating partnerships with coalition members suggested in the toolkit, offset any administrative support the state AAP chapter may need to assist the awardee, and supported travel to the state capital for legislative meetings and testimony. Coaching calls with AAP SONPM executive members provided guidance and tracked progress toward the deliverables, which included 2 peer-reviewed publications.^20,21  To allay concerns from academic department chairs that time advocating for PDHM coverage would impede traditional work products, grantees collaborated on a peer-reviewed paper summarizing the national landscape of donor milk coverage and highlighting disparities based on Medicaid-coverage status.²¹  Peer-reviewed work was important to obtain support from academic chairs reluctant of allocating time for early-career faculty to work on advocacy issues. Research questions were raised during the timeline of the grant, such as determining differences in access to PDHM based on percentage of Medicaid patients served. A state-based timeline of legislative activities related to this project is shown in Table 1.

Local research demonstrated Georgia had the third highest NEC-related infant mortality in the nation, and that NEC was the ninth leading cause of infant mortality in the state, accounting for 2.3% of infant deaths.^29,30  High rates of preterm birth, low rates of maternal milk usage, and racial disparities in both these areas were possible drivers of NEC rates and mortality.^31,32 

Advocacy for Medicaid coverage of PDHM in Georgia relied on close collaboration between the neonatology grant recipient, other neonatal physicians, and the Georgia Chapter of the AAP (GA AAP) and included adaptation of the toolkit for local use. GA AAP identified local legislators and officials supportive of the bill and created a legislative strategy for passage. Presentations to the Chapter’s Legislative Committee and Committee on the Fetus and Newborn recruited general pediatricians to the coalition.

AAP SONPM grant funds supported chapter staff in advocacy efforts and allowed for the creation of a single page handout for dissemination to legislators and department leaders (Fig 1). This handout used the format of the chapter’s prior advocacy tools, and thus was a familiar format to legislators. Five bulleted points outlining the case for Medicaid reimbursement in Georgia were included: (1) education on prematurity and human milk, (2) a direct request for Medicaid reimbursement, (3) relevance to Georgia’s families, (4) the cost of NEC, and (5) potential cost-savings and life impact of providing PDHM. Adapted from the toolkit’s cost-effectiveness worksheet, advocates calculated the potential cost-savings of PDHM using Georgia-specific VLBW births, local PDHM use rates, and cost per ounce of PDHM from a local milk bank (Fig 1).

Efforts in Georgia involved both the state’s legislative and executive branches. State lawmakers introduced House Bill 825 at the end of the 2020 to 2021 legislative session, establishing the fiscal request for PDHM payment.³³  With the bill introduced but awaiting the start of the 2021 to 2022 legislative session for consideration, GA AAP advocated directly with the Department of Community Health, which oversees the state’s Medicaid program, and the Governor’s office to earmark $469 138 for Medicaid PDHM reimbursement in the 2023 state budget. Work with state Medicaid officials and NICUs continues to create a framework for implementation.

Though Washington State was not selected for receipt of pilot grant funds, use of the AAP SONPM Toolkit assisted with identifying coalition partners in Washington State, including the Healthcare Coalition for Children and Youth, the local Washington State AAP Chapter, and a local human milk bank. Led by an academic neonatologist, outreach to the Office of the Insurance Commissioner requesting PDHM coverage via regulatory authority occurred in the spring 2021 while coalition partners simultaneously identified a legislative sponsor. State Senator M. Dingra, who serves on the state’s Ways and Means Committee, introduced Washington State Senate Bill 5702 in January of 2022. Washington State used the toolkit’s draft letters of support for insurance coverage of PDHM use. Similar to the Georgia experience, a 1-page summary abbreviated the legislative request, key data points, and estimated impact on babies statewide. Documentation of other states with similar legislation was particularly beneficial.

Cost-effective calculations provided in the tool kit were of limited benefit in Washington State, as the coalition’s eligibility requirements for insurance-covered PDHM use extended beyond the VLBW population (Table 2). Unlike the legislative strategy in New York, which focused heavily on the cost-savings argument and thus reserved donor milk for babies at highest risk for NEC, Washington State’s approach emphasized health equity as the primary rationale for this coverage.^25,35  Support for SB 5702 was considered a potential redress of racial and socioeconomic disparities in access to breastmilk and breastfeeding support. Advocates emphasized geographic variations in PDHM access, with decreased availability in rural birthing hospitals. With an estimated 15% of infants in the state receiving formula in the first 48 hours of life, overwhelmingly from mothers with labor complications who delivered via Cesarean section, Washington’s State’s coalition promoted PDHM coverage as a vehicle for maternal equity. Failure to support the bill was framed as penalizing infants born to mothers with delivery complications. Support for the measure benefitted from a greater statewide focus on maternal and infant supports occurring concurrently, including expanding postpartum Medicaid coverage to 1 year after delivery and broadening insurance support for lactation services. The law passed on March 30, 2022.³⁶ 

Though actively opposed by the coalition in Washington State, the law allowed for prior authorization for PDHM at the discretion of a covering health plan. Further, outpatient PDHM coverage, though a major aim of the coalition, remained unaddressed. Negotiations regarding reinvestment of cost-savings from PDHM use in VLBW babies into outpatient coverage are ongoing and remain an advocacy goal. Neonatal advocates’ current agenda includes implementation of billing and reimbursement models for hospital use, as well as creating a state-wide mechanism for evaluating use and public health benefits. Even among states passing similar legislation decades ago, billing and reimbursement strategies remain opaque, especially given the absence of billing codes for provision of PDHM. Sharing experiences on how states operationalize hospital payment is a crucial next step to assist with making PDHM routine.

The Ohio coalition for donor milk coverage, convened and led by an academic neonatologist, used the AAP SONPM Tookit to recruit coalition partners, including: the offices of government relations at several Ohio-based children’s hospitals, the Ohio Children’s Hospital Association, a state Medicaid director, a state milk bank, and neonatologists at other institutions. The included letter of endorsement provided talking points for nonclinical partners and the cost-analysis calculator estimated the long-term cost savings of PDHM use. Utilization of the kit was paired with access to other leaders in the field who provided expertise and support throughout the advocacy journey, including assistance with opinion-editorial writing and media interviews. Hospital dieticians, milk technicians (who order and track PDHM use from the state milk bank), business directors, payer relations officials (who create the infrastructure needed to code and bill for inpatient PDHM use), local lactation consultants and scientific researchers comprised additional recruited coalition members.

Ohio Senate Bill 314 was introduced in March 2022.³⁷  As currently written, SB 314 would make inpatient donor milk a covered benefit by all payers for high-risk infants with medical necessity. Prior authorization would, like Washington State, be at the discretion of the health plan. Eligibility criteria are similar to the expanded criteria used in Washington State (Table 2). Outpatient donor milk has been a covered benefit for medically-eligible Medicaid enrollees under Ohio rule 5160-10-26 since 2018.

Encouraged by these efforts, other state coalitions formed, seeking PDHM coverage. Led by neonatologists and local AAP chapters, several states engaged in successful advocacy campaigns. Adapting resources created by other states, Maine obtained third-party PDHM coverage on May 3, 2022, impacting up to 150 VLBW babies per year.³⁸  Buoyed by the increasing number of bills passing in states with fewer births, Florida - which has up to 3200 VLBW infants annually out of a total of ∼220 000 births - signed SB1770/HR1333 into law on April 6, 2022, providing PDHM coverage to inpatient VLBW babies.³⁹ 

This case study demonstrates how pediatric subspecialists, by collaborating with subspecialty-focused organizations, can advance niche advocacy issues at the state level. This is important as pediatric subspecialty concerns are normally not the priority of state-based advocacy agendas, as medical societies emphasize topics that are broader across pediatric and medical practice. Further, it provides a template that subspecialty organizations may apply to leverage policy achievements in one state and export them to another, expanding influence and benefit for children.

Pilot grant funding helped identify passionate subspecialist advocates, incentivized use of the donor milk toolkit, and assisted early-career academic neonatologists in obtaining protected time to achieve advocacy deliverables – which in our case included a draft bill or similar regulation. Provision of other work products, such as review-articles, podcast appearances, and policy commentaries also allowed for grantees to work on the issue of PDHM coverage while demonstrating academic productivity. Within pediatrics, there is greater recognition of advocacy as scholarly work, and this project demonstrated to institutional leadership how to incorporate advocacy into an academic model.^40,41  Review articles that summarize the current environment for an issue such as access to donor milk and prescribing potential policy remedies can be submitted for peer-review. Deliverables during this project also included transcripts of testimony, documentation of legislative meetings, and the 1-page summaries previously described. As this case demonstrates, if advocacy is to be truly supported among academic children’s hospitals, institutional understanding of the scholarly nature of the work is essential.

This framework thus provides support from division heads and contextualizes advocacy work as a scholarly pursuit equivalent to teaching, research, or other academic endeavors. Frequent coaching calls helped grant awardees build coalitions and ensured monthly progress. Involvement with the local AAP chapter, a requirement for grant funding, allowed grantees and others who used the toolkit to access local expertise and brought increased awareness of PDHM coverage issues to AAP chapters often focused on goals aligned with general pediatric practice. Allying with patient organizations expanded the advocacy coalition beyond neonatologists and pediatricians to include allied health professions such as dieticians and midwives, as well as parents impacted by NEC. Partnerships also helped craft the most persuasive local rationale for PDHM coverage, which varied from improving equity in one state to financial cost-savings in others. Further, since subspecialty physician networks can be relatively small, work in our initial 2 states quickly grew to 3 others, demonstrating the exponential benefit of this program.

As cost-savings data from states begin to be widely shared, interest in PDHM coverage has increased. Currently the National Association of Medicaid Directors has requested access to the cost modeling in the toolkit, which may hasten adoption via regulations without requiring neonatal legislative advocacy. The AAP SONPM is considering providing an additional year of funding to neonatologists in Ohio to continue to advance PDHM coverage. Funding is also being considered for Georgia to codify Medicaid coverage of PDHM in legislation, as the current process includes discretionary funding.

Building on state-based work, Representative Chrissy Houlahan (D-PA) has introduced the bipartisan Access to Donor Milk Act to expand access to and awareness of PDHM.⁴²  Though not mandating national coverage of PDHM by health insurers, the measure would provide emergency funding for donor milk banks to meet any rapid increase in demand associated with passage of PDHM Medicaid coverage in any given state. This bill provides a national forum for advocacy by all those impacted by NEC with potential benefit for all VLBW children and supplements state-based actions.

This experience has demonstrated a roadmap to activate state advocacy among neonatologists and other subspecialists. Other subspecialty sections or independent organizations should use this roadmap to advance state-based issues related to their specific field. The AAP SONPM is also considered using the same model to recruit neonatologists interested in advancing the duration of postpartum Medicaid coverage to 12 months in states which do not currently have such provisions.

The authors acknowledge the support of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine for assistance with creation and dissemination of the toolkit described in this paper.

AAP

American Academy of Pediatrics

AAP SONPM

American Academy of Pediatrics Section on Neonatal-Perinatal Medicine

NEC

necrotizing enterocolitis

PDHM

pasteurized donor human milk

VLBW

very low birth weight