19 Jan ‘Owen’s Law’ mandates coverage of donor breast milk
Pittsburgh Post-Gazette (January 19, 2024) – Amid the hum of industrial freezers, numerous state legislators and health officials packed into a back room at the Mid-Atlantic Mothers’ Milk Bank in the Strip District Wednesday. With cookies and speeches, they marked the passage of “Owen’s Law” — a state law that goes into effect Saturday mandating Medicaid coverage of donated, pasteurized human breast milk for children with serious medical needs.
The bill was named for Owen Kubalek from Indiana, Pa., who in 2018 was born prematurely at 31 weeks, but didn’t meet the criteria to qualify for donor milk. He died weeks later after developing an intestinal disease called necrotizing enterocolitis (NEC) — a condition that is 80% less likely to occur in babies exclusively fed human milk.
At the milk bank Wednesday, executive director Denise O’Connor read a statement from Owen’s mother, Annette Kubalek. “Creation of this law has been quite bittersweet for us,” she said in the statement. “We wish it would have been enacted years ago, so perhaps it may have saved our Owen. However, it was he and his life and death that was able to help demonstrate just how important a law like this is. Thanks to Owen’s law, we hope that no other at-risk Pennsylvania babies are not offered potentially life saving donor milk.”
Breast milk is beneficial for all babies but for many premature or high-risk babies, it is so critical that it is considered to be medicine, available via a doctor’s prescription. The American Academy of Pediatrics recommends it as the “standard of care” for premature babies when their own mother’s milk is unavailable or insufficient.
“Even though breastfeeding is natural, it is not always easy,” said Debra Bogen, acting state secretary of health and former medical director of the Mid-Atlantic Milk Bank. “Sometimes a parent can’t provide enough milk to meet their child’s own needs and sometimes infants are born with complex medical needs. In these cases, pasteurized donor milk can be lifesaving if the mother’s own milk is not available.”
The new law, sponsored by Sen. Michele Brooks, R-Mercer, expands the number of medical conditions that qualify for Medicaid coverage for pasteurized donor milk. Those conditions include very low birth weight, a gestational age of 34 weeks or less, neonatal abstinence syndrome and a high risk of developing NEC.
Donor milk processed through the Mid-Atlantic Mothers’ Milk Bank costs $4.50 per ounce, putting the cost out of reach for most families unless it is covered by insurance. A previous version of the bill addressed private insurance as well, but was scaled back to include only Medicaid.
“Providing pasteurized donor milk covered by Medicaid is one way to address equity issues so financial concerns don’t stand in the way of babies receiving what they need to survive and thrive, especially in Black and Brown communities,” said Pennsylvania’s second lady Blayre Holmes Davis. “This new law is an important step towards preventing infant mortality.”
Awareness and use of donor milk has exploded over the last decade. Ten years ago, none of Pittsburgh’s NICUs made donor milk available to patients, in part because no milk bank existed in the region. Now, the Mid-Atlantic Mothers’ Milk Bank, which opened in 2016, processes about 35,000 ounces of donor milk per month and serves 55 hospitals across four states.
The milk bank is expecting demand for donor milk to rise further with the passage of Owen’s Law, or Act 32 of 2023, because more people covered by Medicaid will be eligible to receive it.
To supply that milk, the milk bank is always looking for breast milk donors, said O’Connor, noting that as more people receive donor milk in hospitals, more are motivated to donate their own milk. The milk bank requires a minimum donation of 150 ounces from donors, who must go through a screening process and a blood test.
“We like to use the word ecosystem,” said O’Connor. “In an ecosystem, when we’re talking breast milk, the number of moms who have extra will certainly help the number of moms who need it for their fragile babies.”