When Michelle Marciniak’s daughter Marie was 4 years old, a preschool teacher noticed a change in her behaviour. She was losing her speech and crying during circle time with the group.
Her parents found out that their daughter had been unable to hear them for six months because of damage caused by a virus.
“We were devastated that my baby had not heard the words ‘I love you’ for six months from the two people who loved her the most,” said Marciniak, from Orange County, California.
Hearing loss affects thousands of children each year and is one of the most common conditions present at birth, according to the US Centers for Disease Control and Prevention. The National Institutes of Health says that about 2 or 3 of every 1,000 children in the US are born with a detectable level of hearing loss in one or both ears.
Marciniak says the problem was compounded when they learned her daughter needed hearing aids, but insurance companies in California are not required to cover them.
“We were told that hearing aids for children were considered ‘cosmetic’ or elective by the insurance company. I could not understand that,” she said.
A pair of hearing aids can cost about $6,000, and children typically need new ones every few years throughout childhood.
Marciniak says she and her husband were able to afford them, but she has met many other parents who say the cost would bankrupt their family if their child had to go without. Without treatment, hearing loss can affect a child’s ability to develop speech, language and social skills, according to the CDC.
Marciniak and other families have formed a grassroots group called Let California Kids Hear, with the goal of getting the nation’s most populous state to require insurance companies to cover hearing aids for children from infancy to age 21.
At least 26 states have hearing aid mandates. New York, Hawaii, Nevada and Arizona are all considering similar legislation this year.
Marciniak and Let California Kids Hear helped introduce a bill in the California legislature in 2019, but it was set aside due to opposition from insurance companies. The California Association of Health Plans opposed the bill, fearing it would drive up premiums.
In 2021, Governor Gavin Newsom’s administration set up a programme to help pay for hearing aids, but only for families who meet income eligibility guidelines and have no or limited insurance coverage.
The state of California says it spends an estimated $400 million each year to educate 14,000 children who are deaf or hard of hearing.
Let California Kids Hear and its affiliated doctors say some of these costs could be mitigated if children had access to hearing aids at an early age.
Dr. Daniela Carvalho, a paediatric otolaryngologist at Rady’s Children’s Hospital-San Diego, said the state program is not a sufficient solution and that thousands of children are still going without the hearing aids they need. Even with years of speech therapy and special education, they’re at risk for continued delays and mental health problems.
“These children without access to hearing aids will have significant delays in speech, academic delays and social interaction,” she testified before the California State Assembly in July in support of a new Senate bill. “Paediatric hearing loss is a developmental emergency.
This year, the legislature passed Senate Bill 635, which requires insurance companies to cover hearing aids for all enrollees under the age of 21 when medically necessary.
“The only thing left is for the governor to sign it,” Marciniak said. “I don’t see what would stop him from helping thousands of children in the state who need hearing aids.”
Newsom’s office said it doesn’t normally comment on pending legislation, and the governor has until 14 October to act.
As for Marie, once she got her hearing aids, she was back to her old self. Now 13, she is learning alongside other children her age.
“She is doing great. But it could have been a very different story without the hearing aids,” Marciniak said.
