CHEYENNE – Kala McWain didn’t know she would be lobbying federal lawmakers after the birth of her youngest son, or that she would fail to receive their support.
She was in Casper at the Wyoming Medical Center two years ago, when medical staff came into her hospital room to take her son for a newborn screening. It was the same step taken there after her first son was born, and she had no concerns when she and her husband Jake were told they would get the results in a few days.
The tide shifted when McWain received a call from a nurse the next day.
She was informed her son had tested positive for a genetic metabolic disorder called phenylketonuria, often referred to as PKU. She was asked to return to the hospital for additional tests, given little information except that it was a rare condition, and told to wait at home through the weekend for more information.
McWain turned to Google for answers. She was left with fear of breastfeeding and with little hope.
This prompted a journey for her to push for more people with the disorder to be covered by insurance for medical food and formula. As one of the sponsors of a pending bill in Congress to do just this noted to the Wyoming Tribune Eagle, getting the necessary nutrition, which is expensive, could be a matter of life or death.
Her son is either missing or has a malfunctioning enzyme that is required to break down a part of protein known as phenylalanine. He’s one of roughly 16,500 people in the U.S. who can’t eat or process regular foods, according to the National PKU Alliance.
If the condition is not detected, or a newborn screening is not performed, McWain said, a child might not meet the first-month mark or many other important growth milestones.
It doesn’t get easier after the diagnosis.
“It’s a pretty traumatizing introduction into parenthood. My first child had PKU, so I was learning how to be a mom and learning how to take care of these really special needs,” said Heidi Maxfield, director of the Intermountain PKU and Allied Disorders Association. “And then you also have other parents who have had a couple of children, and they’ve never known they carried the PKU gene, and they get thrown into this world of raising a child with a metabolic disease.”
There’s no treatment except through proper nutrition. If untreated, individuals with PKU will develop high levels of phenylalanine in their blood, and their brain development and function will be affected. McWain, the Casper mother, described the possibility of seizures, institutionalization, an inability to walk or develop fine motor skills and, in some cases, death.
As patients grow older, they should maintain their diet. Teens and adults will have difficulty performing jobs and getting good grades, while suffering from fogginess, irritability, headaches and overall sickness without it.
The price of avoiding these consequences is high. McWain’s son will have to live off of formula and medically approved foods for the rest of his life, which can cost well over $1,000 per month. Although her family has insurance that covers the formula, it does not cover medical foods such as bread or pasta, and he will not be covered after a certain age once he is an adult.
“A loaf of bread is $16,” McWain said. “But if he were to eat those foods from the grocery store, like you and I do, he would suffer brain damage.”
McWain considers herself relatively lucky.
Wyoming self-insured health care plans are exempt from providing coverage due to a federal Employee Retirement Income Security Act exemption, and public insurance is limited to certain diagnoses. There are some states where it is even harder to get coverage.
McWain scheduled meetings with Republican Wyoming lawmakers Rep. Liz Cheney and Sens. John Barrasso and Cynthia Lummis, asking for them to co-sponsor the Medical Nutrition Equity Act. She encourages other residents to ask their federal lawmakers to support the bill, which was re-introduced last year by Rep. Jim McGovern, D-Mass.
“This food is medicine for people, and without it, their health situation gets worse,” McGovern told the WTE. “Or, in some cases, they could die.”
The bill would require private insurance and federal health programs such as Medicare, Medicaid and the Children’s Health Insurance Program to provide coverage for medically necessary nutrition when it prevents severe disability and death. There are more disorders than just PKU that require patients to survive on medical food and formula, and have been proven to lack coverage on health insurance plans.
She wants support for not just her own family, but the thousands across the nation who are dealing with these hurdles.
Despite signatures from more than 90 representatives and 22 senators, both versions of the bill have sat in committees since last June.
McGovern said he is trying to gain traction on the bill, and political pressure from constituents on their elected officials is an important component.
“The more co-sponsors we have, and the more support we can demonstrate, the more effectively we can push off jurisdiction to report them out and bring them to the House floor for voting,” he said.
McWain said she was disappointed with the fact her own representation in Congress has not co-sponsored the bill, or openly supported it. She spoke with a spokesperson from each of the Lummis and Cheney offices, and they took the information back without action last year.
She also met with Barrasso, who she thought she would feel more comfortable with because of his background as an orthopedic surgeon for two decades. She said it was an emotional experience, and she left feeling particularly defeated.
None of them agreed to co-sponsor the bill, but she said she plans to meet with them again this month to re-address the issue. McWain said she wants to know why they haven’t supported it at this point, especially as they have all taken pro-life stances.
“You say every life is important,” she said. “Then why aren’t you supporting the needs of these communities?”
Barrasso and Lummis both responded to inquiries from WTE on their position, and Cheney did not comment.
The spokespeople said the U.S. senators would monitor the bill’s progress closely as it moves through the legislative process, and understand how important the issue is. Lummis confirmed she will not co-sponsor the medical nutrition equity bill at this time.
“Sen. Barrasso appreciates the McWain family for meeting with him and raising awareness about this important issue and legislation,” a spokesperson said. “As co-chair of the Senate Rare Disease Caucus, he understands how critical it is for families in Wyoming to have access to medically necessary foods and supplements.”
McWain isn’t alone in her efforts. Health organizations around the U.S. and those impacted by rare digestive and metabolic conditions have rallied for more than a decade to have similar legislation passed.
In May, Dr. Moira Szilagyi, president of the American Academy of Pediatrics, sent a letter to the leaders of Congress urging action. She said Congress should require both public and private insurance to cover medically necessary foods as a treatment option, not just pharmaceuticals or biologics, because many of the families who are searching for specialized formulas are the ones facing denials for coverage.
“Congress has previously recognized the importance of providing coverage for medically necessary nutrition and required TRICARE coverage for such therapies in the 2016 National Defense Authorization Act,” she wrote. “We urge Congress to expand this requirement for other insured populations with rare digestive and metabolic conditions.”
The Intermountain PKU and Allied Disorders Association’s Maxfield said this bill is necessary for individuals to lead normal lives. It is already a difficult condition to live with because it is so rare, and expensive because there’s no market for pharmaceutical companies to produce in large quantities. This becomes more difficult in rural areas, such as Wyoming, because there are few families who are able to afford thousands of dollars in medical food, and are traveling far for their treatments in other states.
She doesn’t want to see individuals grow up without the resources they need, suffer neurological damage, and possibly risk becoming a burden on the state and the taxpayer because they end up in institutions.
“It would be great if we could get the Wyoming delegation onboard,” she told WTE. “It’s really nice when representatives who are voted in by constituents are willing to talk to their constituents and hear their stories, because they have a big job as people who represent our states, and we need their support for this Medical Nutrition Equity Act.”