Prescription Baby Formula Nearly Bankrupted My Family
By Lindsay Brown, Prescription Justice Board of Directors President
In honor of my daughter’s first birthday later this month, I’m going to take the month off from reporting on Republican action on drug prices to share why prescription drug price reform matters to my family.
After a 28-hour induction, labor, and delivery, Hanna Grace was born on May 24, 2020 at 2:45am. An annoying and long but medically uncomplicated pregnancy turned into a complicated birth and Hanna spent her first few days in the NICU before we could bring her home. I gave the NICU permission to feed her formula while I pumped because my milk wasn’t in yet and we had a tricky time establishing breastfeeding, especially because we missed the “golden hour” when Hanna had to go right to the NICU. I knew before giving birth that I wanted to “combo feed,” or both breastfeed and give her formula, because I knew that there are so many benefits to breastmilk but establishing a good supply is hard and can be very emotionally taxing on families, especially during the immediate postpartum recovery period.
Starting at her very first formula feeding, Hanna started projectile vomiting. This wasn’t normal infant reflux—most babies spit up and all babies have some degree of reflux—this was like the Exorcist. The NICU nurses experimented with giving her smaller amounts with more burp breaks, burping her more gently, and switching to a “gentle” formula but the vomiting persisted until we switched to a formula with hydrolyzed milk protein, Similac Alimentum.
Alimentum is gross. It’s thick and it smells weird and probably doesn’t taste great compared to other formulas or breastmilk. It’s expensive, too. It’s available over the counter and is more expensive than standard formula. Our pediatrician offered to write us a prescription for the Alimentum if our insurance would cover some of the cost. Fortunately, it did, and we started to save some money.
I kept trying to establish breastfeeding and pumped milk, hoping that Hanna could just have breastmilk and we wouldn’t have to worry about filling a formula prescription. We worried about the supply chain for baby formula with Covid and we had concerns that our insurance may not continue to cover the costs for us. Every time we fed her pumped milk or she managed to breastfeed without falling asleep as soon as she latched on, she screamed in distress from gas and digestive upset for hours. My daughter was allergic to my breastmilk. I had two options: I could play Diet Detective and eliminate every potential allergen from my diet and reintroduce them one by one, experimentally, until Hanna had another reaction or I could throw the towel in on breastfeeding and commit to feeding her exclusively formula. I struggled with a lot of emotions (and hormones) around the decision but switching exclusively to formula was going to be the best path forward for my whole family.
Hanna did pretty well on Alimentum for a few weeks. She still spit up like normal babies do and she had colic/indigestion that we resolved with probiotic drops. We switched to vented bottles and held her upright after meals and made sure she was well burped. She was a pretty happy baby and she loved eating. She’s definitely my kid.
Her pediatrician suggested we try switching to an elemental formula since the hydrolyzed milk proteins in the Alimentum might still be too difficult for her to digest if she had a true milk protein allergy. We switched first to PurAmino, which insurance quickly covered and the pharmacy filled, but didn’t see much of an improvement in her reflux so we went back to the Alimentum. Hanna had a noticeable allergic reaction to going back to the larger proteins and was still miserable from the reflux.
We got a referral to a pediatric gastroenterologist and badgered the office until they were able to get us in. Three weeks for an appointment doesn’t sound long in real world time but in miserable infant time with 5-6 hysterical feedings a day, it’s an eternity. The pediatric GI was lovely and explained that Hanna tolerated the Alimentum for a few weeks but switching to the elemental formula and then switching back to the hydrolyzed protein was a shock to her little system and what was a mild allergy became much more symptomatic.
She would need to be on an elemental formula for the rest of her first year and we could revisit introducing cow’s milk protein when she’s closer to a year old since many infants outgrow the allergy. This particular doctor prefers to use EleCare, the other elemental formula on the market, and wrote us a prescription and sent us with some sample cans. The doctor also wrote a prescription for a compounded formulation of lansoprazole, which is off-label for infant reflux.
The doctor’s office got to work talking to our insurance and the medical supply company that contracts with Abbott Laboratories to distribute EleCare. We got a pre-authorization for EleCare through our insurance and the medical supply company started shipping us cases of formula on a monthly basis with a $10 co-pay. Great!
Until it wasn’t great. My husband’s company was acquired recently and as part of the integration, his insurance changed. EleCare isn’t on any normal formulary so the new insurance rejected the claim for our daughter’s prescription formula. We were almost out of formula and needed more so I reached out to the medical supply company to see what we can figure out. Sure, they can send out a case ASAP but if insurance won’t cover it, it will be $933 for a month’s supply.
$933 a month for infant formula without insurance
Fortunately, Hanna is now nearly a year old and gets most of her calories and nutrition from solid foods. She’s actively weaning from formula so I opted to speed up the weaning process, make less formula, and stretch what we have left while her doctor’s office, insurance, and the medical supply company coordinate our new benefits and pre-authorization. We are in a position where we don’t need to take that financial hit to safely feed our daughter without giving her gastric distress and an allergic reaction, but many families are not.
The cruel reality, that is also not lost on me, is that the families who do not have insurance that covers prescription baby formula, who are unable to navigate the complex system of pre-authorizations and appeals to get coverage, or whose insurance has a prohibitively high deductible on prescription coverage, are the same families that cannot afford an extra $933 every month to keep their babies with dairy allergies fed. Regular baby formula is expensive. The average family could spend up to $1500 over the course of a year to exclusively formula feed a baby. But even the most prudent budgeters are unlikely to assume their child will have complex digestive needs before their child is born to set aside nearly $1000 a month for prescription formula.
Baby formula is considered a medical food, not a drug, but it’s manufactured by the same companies, insured by the same health insurance policies, and is supplied by the same providers. We need wide, systemic reform so average Americans can afford life-sustaining medications. We need that same reform to make sure average Americans don’t go broke trying to feed their infant if they can’t tolerate breast milk or regular baby formula.