The infant formula shortage and the breast cancer community

Breastfeeding Nash was not an option. Gebhard had been diagnosed with early-stage triple negative breast cancer in 2019, after previously testing positive for the BRCA1 gene variant. She underwent an egg retrieval process (“just in case”) before 12 rounds of chemotherapy and a double mastectomy at age 31. Following breast reconstruction, Gebhard used her stored eggs for in vitro fertilization (IVF), and Nash was born healthy and strong in July 2021. Now, with the formula plant shutdown, Gebhard found herself facing a huge question mark around her baby’s most basic need: food.

Changing formulas for a baby with digestive problems can take weeks. When Gebhard finally found a suitable alternative for Nash, that went out of stock, too. She admits, “The level of anxiety this produced has been my highest of being a new mom.”

Gebhard is not alone. Women at every stage of the breast cancer journey—previvors, survivors, and women in treatment—are grappling with the frantic search for formula or donated breast milk.

What happened to the supply of infant formula?

Like all consumer products during the COVID-19 pandemic, formula has suffered from supply chain issues. Moms report that the expensive ready-to-feed

cans are fairly available, but many types of the more affordable powder simply seemed to disappear. Experts attribute the current crisis to several factors:

• Only a small number of manufacturers make infant formula, and 90% of the more than $50 billion U.S. market is controlled by just four companies. High tariffs and other regulations make it almost impossible to import formula from other countries.
• Abbott Nutrition controls about 48% of the market, manufacturing 40% of their formula at their plant in Sturgis, Michigan.
• In September 2021, a baby contracted a dangerous bacterial infection after consuming formula made at the Sturgis plant. Three other similar incidents were then reported nationwide, and two of the babies later died. Abbott Nutrition maintains that their formula has not been conclusively shown as the source of the illness, although a whistleblower report sent to the U.S. Food and Drug Administration (FDA) in October 2021 detailed contamination and other problems at Sturgis.
• On February 17, 2022, Abbott shut down the plant and issued a recall of certain batches of its formula. The plant produces about 20% of all U.S. baby formula, including Similac and EleCare, two brands used for infants with food allergies and digestive difficulties.
• Abbott Nutrition is the only provider of infant formula for U.S. government aid programs in 34 states, seven native tribal organizations, four territories, and Washington D.C., severely impacting women who need assistance to nourish their families.
• In May 2022, President Biden used the Defense Production Act to force suppliers of ingredients for formula to prioritize baby formula manufacturers. He also authorized emergency flights of formula from Europe and Australia to the U.S.
• The Sturgis plant reopened on June 4; however, it will take weeks for formula to arrive on store shelves in significant quantities.

Women with breast cancer feel invisible in formula shortage

At age 36, Cara Scharf has been cancer-free for 11 years. She tested positive for BRCA1 at age 22, and, three years later, a Stage I triple-negative tumor led her to have chemotherapy, a double mastectomy, and breast reconstruction. Thanks to pre-implant genetic screening and IVF, she expects a healthy baby boy in late June who should not carry a known genetic abnormality for breast cancer.

Realizing that she would not be able to breastfeed, Scharf thought she had plenty of formula options and ample time to prepare. But in spring 2022, as she began seeing empty shelves in stores and grew more aware of the supply issues, she became “a little more panicked.” She feels emotionally triggered when she sees social media posts telling women to “just breast feed.” It seems that women like her are invisible.

Despite the anxiety, she is being proactive. “Before the shortage, I always thought I will use formula, and it will be fine. Now, I have done some research on milk banks, and I plan to bring that option up at meet-and-greets with pediatricians.” Milk banks store donated breast milk that has been screened, pasteurized, and tested for the primary consumption of premature babies or those whose mothers who are unable to produce sufficient milk for them. Scharf’s impression so far is that regional milk banks require an extensive application process and put more emphasis on the baby’s health status than on the mother’s ability to breastfeed—as if they weren’t related!

Healthcare professionals weigh in

Lack of control and loss of options are common feelings among women with a history of breast cancer who are pregnant or raising infants, according to Dr. Helen L. Coons, associate professor and director of psychology in the Department of Psychiatry at the University of Colorado School of Medicine. Dr. Coons, who is a member of LBBC’s medical advisory board, notes that this loss comes on top of the possible loss of one or more breasts and breast sensation, threat to body integrity, and sometimes an impaired sense of sexuality and femininity that breast cancer treatment can produce. “There is inordinate pressure to breastfeed in the United States, and some women are treated as ‘lesser’ or feel criticized and marginalized for using formula,” says Coons. “We are not well designed to feel different, and this can trigger intense feelings of being less adequate as moms. People are not kind.”

Even without cancer, there’s a lot of mom guilt,” observes Lauren Cranmer, mother of eight-month-old Avery and three-and-a-half-year-old Colton. “Babies are hard to figure out and you’re extremely hard on yourself, regardless of any other factors.

Cranmer received positive biopsy results exactly one month after discovering that she was pregnant with Avery. Finding that she had the PALB2 mutation, she decided to go ahead with both the pregnancy and treatment. She underwent 12 rounds of chemotherapy while pregnant and then took a break in treatment at 36 weeks and had a scheduled C-section. Two weeks later she began four more rounds of chemo, followed by radiation, hormonal medication, and targeted therapy. In May 2022 she had a prophylactic mastectomy of the breast with cancer.

“Breast feeding was a trigger for me during pregnancy because I knew I wouldn’t be able to feed Avery,” recalls Cranmer. “I loved breastfeeding my son, and it was hard to realize that even though I still had one breast, the likelihood of success was very low due to all the chemo, which reduces milk production.” In addition, Cranmer faced the tradeoff of delaying her own treatment if she wanted to try breastfeeding. She decided to prioritize her healthcare and immediately began using the formula supplied in the hospital.

Dr. Elyce H. Cardonick, maternal-fetal medicine physician and professor of obstetrics and gynecology at Cooper Medical School of Rowan University, says that successful pregnancy and cancer now occur together surprisingly often. One in 1,000 women has a diagnosis of cancer of any kind while pregnant, and breast cancer is the most common of these. Dr. Cardonick is in the ideal position to know: she follows the annual progress of over 500 women diagnosed with cancer during pregnancy, of which 245 women had breast cancer, and their children in her role as director of the Cancer and Childbirth Registry at Cooper University Health Care. The registry keeps growing. “I hear of two cases per week, sometimes three, and many cancer survivors of different types go on to have safe pregnancies. In my registry I have one cancer survivor who is now a grandmother!”

Still, Dr. Cardonick acknowledges that not having the option to breastfeed can be a huge disappointment. As Scharf put it, “Not being able to breastfeed my own child feels like another loss I have to process. It’s a rehashing of an old trauma I thought I had dealt with.” Dr. Cardonick encourages women to take the long view: “Two years from now, if your baby is healthy, you may feel differently. Stress is not a good thing for you or your baby and the best way to have a healthy baby is a healthy mom.”

Who can breastfeed during or after breast cancer treatment?

Babies can be adequately nourished from one breast. However, Dr. Cardonick explains that it is not recommended to nurse from a breast that has had, or is undergoing, radiation therapy. The radiation itself does not make breast milk dangerous, but if mastitis occurs (an inflammation of breast tissue that may involve infection) it will be difficult to treat.

With all but one or two chemotherapy agents, breastfeeding is possible about three weeks after stopping treatment. Because chemotherapy tends to reduce the amount of breast milk produced, a woman may need to supplement with donated milk or formula, or switch to another feeding method entirely. This can happen to women who have not had cancer as well.

Low-income women of color struggle most

The formula crisis highlights additional social issues around infant feeding: persistent racial and economic disparities between mothers who breastfeed, and those who don’t; as well as discrimination around which families have ready access to formula and which do not. Low-income families in the U.S.—most of whom are Black or Hispanic—are the most seriously affected by the current shortage. Thanks to the strong influence of manufacturers, infant formula in the U.S. costs about twice as much as it does in the European Union, where there are similar or better safety standards. Fully 65% of all baby formula sold nationally is purchased through the Special Supplemental Nutrition Program for Women, Infants, and Children, known as WIC. And half of these infants rely on formula made by Abbott. State-by-state, WIC determines just one manufacturer whose products are covered, and in some places, where they can be purchased.

This prevents moms who may be really struggling financially from using generic or brand substitutions or buying formula wherever they find it. Even without WIC, low-income families and people of color often live in areas with only small grocery stores that have more limited formula supplies than large chains. In addition, “stockpiling” quantities of formula when it’s available is costly, and many families of all types cannot afford to buy large batches. No wonder desperate moms are turning to homemade formulas or watering down what they have, which can be very dangerous for babies.

Normalize it, don’t demonize it

Shocking as it might seem, Gebhard found that “most people don’t know you cannot breastfeed after a double mastectomy.” Even medical professionals can be oblivious. Cranmer recalls being in the hospital right after having her daughter.

Insurance has a strong bias towards breastfeeding. Most policies provide a free breast pump and support for lactation consultations, but there is no coverage for formula. This surprises and angers moms who don’t have a choice. Even the Affordable Care Act mandates support for breastfeeding but not formula. Many women would also like to see an increase in the number of companies producing formula and changes in policies that prevent imported products. As Gebhard concludes, “Most parents do use some formula—even if they breastfeed—but we don’t hear about it very much. We need to normalize it, not demonize it.”

How can moms help themselves manage the formula crisis?

Talk to your pediatrician first

Your pediatrician may direct you to unique sources and safe substitutions. For example, children approaching the one-year mark can often switch to the “toddler” version of the same or a similar formula. These may be more readily available, as Amanda Gebhard discovered when Nash reached 10 months.

Gebhard also found a certified infant feeding technician on Instagram who calls herself @TheFormulaMom. She offers lots of tips and strategies for managing formula feeding in the crisis. Never water down formula to stretch it or make your own formula at home. This can be dangerous for your baby.

Investigate milk banks and milk-sharing groups

Safe, reliable breast milk is available from the Human Milk Bank Association of North America (HMBANA) which currently has 31 member banks across the U.S. and Canada. Dr. Cardonick recommends Hope for Two, an online community of women who are pregnant with cancer. They have many members who donate breast milk.

It is also possible to get breast milk from informal sharing, through Facebook groups or friends or neighbors who have more than they need. This has health risks, so it is vital to talk with a doctor first.

Ask for help and support

Dr. Coons urges women impacted by breast cancer to acknowledge their feelings, whatever they may be (e.g., sad, inadequate, relieved to use a bottle) and find a safe space to share those feelings with others. Lauren Cranmer urges mothers to “communicate your needs and find support any way you can; now’s the time.” At the end of the day, says Dr. Coons, mothers will form close bonds with their infants no matter how they feed. “If you’re up at night worrying about your attachment or feel stuck processing grief over breast cancer or feeding criticism from others, that’s the time to seek professional counseling help!”

Stay in the moment and try to focus on the positive

If you have a partner, bottle feeding allows them to help with nighttime feedings and provide needed time for you to nap, exercise, catch up on work, meet a friend, or do other things away from the baby. Dr. Coons says that it’s good for your child to learn they can rely on another parent or other family members to provide nourishment. Bottle feeding fosters bonding with different adults. Lauren Cranmer struggled with postpartum depression after the birth of her first child, and she thinks it may have been related to her early difficulties with breastfeeding. Bottle-feeding Avery, she’s not having that issue.

Give yourself grace

This message comes from women and healthcare professionals alike. Dr. Coons urges women to give themselves compassion and a pep talk. “After all that you’ve been through, your body worked, and you gave birth or succeeded in adopting! Cancer doesn’t have to define you. You were a patient, but now you’re a mom.” Dr. Cardonick adds, “Give yourself credit.” Scharf finds therapy enormously helpful in balancing fear with joy. She also seeks time outdoors, exercise, and “anything that feels like normalcy.” Whether it’s meditation, biking, gardening, or home movie night, find space for relaxation and your version of normalcy.

Take action

Feeling empowered instead of hopeless is vital to your wellbeing, according to Dr. Coons. Even before you start using formula, you can preemptively educate others in your life about how happy you are regarding your plan to bottle-feed, to keep yourself and your baby healthy. This can help minimize intrusive questions or comments. Invite others to be your ally by staying on the lookout for your formula. Offer those you trust the joy of feeding your baby.

Facebook groups are plentiful for women dealing with breast cancer, for new moms, and now, for moms seeking breast milk. Some women get different types of support from different groups. “People really want to help,” says Cranmer. “There’s a community there— lean on them. This has nothing to do with you at all and you’re doing your best for your child.”

Resources mentioned

• The Breasties
• Cancer and Pregnancy
• Coping With Cancer (magazine and website recommended by Dr. Coons)
• @TheFormulaMom
• FORCE
• Free Formula Exchange
• Hope for Two: Pregnant with Cancer (recommended by Dr. Cardonick)
• Milk-Drunk