Last fall, Summer Mills awoke in the middle of the night in excruciating pain. Her upper canine tooth was throbbing, and eventually, she couldn’t take the pain anymore.

“Four o’clock in the morning, I had to wake the entire house up so that I could go to the ER,” Mills said. “I had to drag all the kids with me.”

Mills has four children, now ranging in age from 2 to 14. All four went with her to the ER, where she was given pain medication and sent home. The medication helped a little, but it was a Band-Aid for a bigger oral problem that was getting progressively worse, and the amount she needed to take to mask the pain made her feel sick to her stomach.

That came to a head the following week when she almost fainted in a Walmart because she was on so much medication and the pain was so bad.

“I had to leave two carts full of groceries in Walmart,” she said. “I couldn’t even function anymore, that’s how bad it was.”

She visited her dentist and discovered she had a cavity so big that it had damaged the root of her tooth. She needed a root canal, but like 1.6 million adults in Pennsylvania, Mills is on Medicaid, which doesn’t pay for the procedure. The public insurance plan used to, but in 2011 Pennsylvania cut dental benefits, partly due to budget constraints and partly in anticipation of the state’s Medicaid expansion under Obamacare. Now, Medicaid plans are required to provide adult patients with only the most basic dental care — services such as cleanings, X-rays, fillings, and extractions.

For her Medicaid insurer, Aetna Better Health, to consider covering a root canal, Mills would have to file something called a benefit limit exception, or BLE, and hope her plan approved it.

That’s what Mills did. A few months later, her insurance company got back to her: denied.

‘It’s like a tight gate’

It happens all the time, said Amid Ismail, dean of Temple University’s Kornberg School of Dentistry.

“The rejection rate on the benefit limit exceptions for these procedures exceeds 95, 96 percent,” Ismail said. “It’s like a tight gate. You cannot get through it unless you meet some certain, very specific criteria.”

Aetna Better Health declined to put forward someone to comment for this story. But the company outlined circumstances under which a BLE would be approved, including situations where the member’s life would be in danger, where the member has a serious or chronic condition like diabetes or severe illness that necessitates the service, or where the member would need more expensive treatment if not granted the request.

But Ismail said insurers often argue that a tooth can be pulled, so a procedure like a root canal isn’t technically medically necessary. What the companies don’t account for is the social stigma associated with missing teeth, or the fact that Medicaid won’t pay to replace the tooth with an implant, which costs thousands of dollars.

“Ideally, they should reinstitute adult Medicaid because it increases the chance of people on Medicaid to get jobs, to look better, have a better quality of life because if they do not have teeth they cannot really work,” Ismail said.

Mills does work, and she’s proud of that. She is a social worker with Philadelphia’s Community Umbrella Agency, which works with the Department of Human Services to provide resources to families who are involved with the department. She is also taking an online course to get a degree in criminal justice. Her employer offers private insurance, but Mills can’t afford the monthly premium on a social worker’s salary.

“I work hard, like I work 50, 60 hours a week,” she said. “And to be penalized for this and to be told like, ‘Oh, well, you’re sick, but you’re not sick enough’ … it’s extremely frustrating.”

She sees her dentist for yearly checkups, and her dentist has said the problems with her teeth are probably genetic. That has her worried for her 8-year-old son, Chase, who seems to have inherited her oral-health problems. He has been to the dentist 10 times since December and has already had extensive dental work, including a pulpotomy, which involves scraping out the diseased inner pulp of a tooth. Medicaid covers dental care for children, but under the current setup that will change once he becomes an adult.

“His adult teeth are coming in, and I’m like, what’s going to happen when he becomes an adult in the next 10 years?” Mills said. “Am I going to be stuck having to help him try to pay for all these things?”

As it is, Mills has paid more than she can afford on her own teeth. She paid $200 out of pocket for a pulpotomy on the rotting tooth while she waited to hear about the BLE. But eventually, her pain got so bad that she couldn’t eat on one side of her mouth and had to stop breastfeeding her youngest because her milk supply dried up. She was also missing work when the pain was too unbearable for her to meet or speak with clients.

Her dentist told her the options were pulling the tooth — which Medicaid would pay for — or paying more than $700 out of pocket for a root canal.

She and her dentist agreed pulling the tooth wasn’t an option. It was a front tooth and would affect her appearance and ability to do her job. So she decided to take out a care credit card, a special credit card for medical procedures with a 25% interest rate.

“To have to get credit cards and things, and that hurts my credit score, and then now I’m in debt … it’s horrible [that] these companies do this to people.”

Advocacy group steps in to help

While all this was going on, Mills appealed the BLE rejection and enlisted the help of Put People First Pennsylvania, a health-care advocacy group. Jacob Hope is a member and worked with Mills to help her navigate the BLE appeal process. He said Put People First is pushing for an appointed official who would advocate on the behalf of patients like Mills, much as a public advocate does when it comes to utility issues.

“When our electric company or our water company is doing something wrong, we actually have an advocate for us with these utilities,” Hope said. “There isn’t one with health care, so we think there should be one.”

Put People First organized a “call-in day” for Mills, in which a group of volunteers called her insurer on her behalf, asking that they cover the procedure for her.

Eventually, Mills’ insurer approved the root canal — two months after she had the procedure. Mariya Samoylova, billing manager at Prime Choice Dental, Mills’ dental practice, said she was shocked the company ultimately approved the procedure.

“It’s a first in my case,” she said. “Everyone is denied unless you’re a child.”

The dentist refunded Mills’ money, and she was able to pay off the care credit card. But Mills found out she needs another root canal on the tooth next door, and the insurer has denied her BLE for that.

She also needs a special type of crown, called a crown bridge, that will connect both damaged teeth to keep them in place. The insurer won’t pay for that either, and Mills can’t afford the $2,000 it will cost for both procedures. In all, she estimates she needs more than $8,000 in dental work, none of which she can afford out of pocket, so she is appealing the rejection.

“Even if they fix it for me, it doesn’t solve it for everyone,” she said. “I’m one in probably thousands of people that need this kind of stuff done.”

In the meantime, Mills continues to chew only on one side of her mouth. She is eating less and can manage only soft food. She also discovered she has three cavities on the other side of her mouth — the “good” side she uses for chewing.

If those cavities progress, she’ll need root canals on those teeth, too, and the process will start all over again.

This article was updated to offer more detail about Pennsylvania’s cut of dental benefits under Medicaid.