Andrew Foote’s family can’t escape the nagging thought their son’s life-altering heroin overdose could have been avoided if insurance providers had been more cooperative. 

What’s even more frustrating, they say, is that resistance has continued in its aftermath.

“We found roadblocks everywhere,” said Andrew’s father, Lenny Foote, of North Andover. “It was very upsetting.”

In high school, Andrew was an all-star, three-sport athlete. But he encountered difficulties when he got to Springfield College and spiraled into heroin addiction. In 2014, he suffered a near-fatal overdose that rendered him disabled and unable to care for himself, or even eat without a feeding tube. 

His family’s struggles with their insurer and resulting financial hardship is a widespread experience as the opioid epidemic sweeps through the nation. 

Interviews with more than two dozen people ranging from family members of addicts and people in recovery, to experts in the field and state and national officials reveal a shared consensus that too many people who need help are unable to get it, and that roadblocks with insurance companies can be a major reason why.

Recognizing the problem, efforts from grassroots campaigns and to the nation’s top political offices are taking place.

Former New Hampshire Sen. Kelly Ayotte authored or co-signed five letters specifically addressing the subject. One went to five major U.S. health insurers, urging them not to deny coverage to plan participants needing mental health and substance abuse treatment.

Ayotte, who co-authored the $181 million Comprehensive Addiction and Recovery Act that passed in July, said getting treatment for addiction should be no different from any other injury or illness.

“If I broke my arm, I’d get covered, and you have to cover mental health or substance abuse the same way,” Ayotte said in a phone interview. “In other words, there are courses of treatment and you need to have coverage for those too, and that’s what the law says.”

The problem is, insurance companies often aren’t held to that standard, she said.

President Obama appointed a task force to study the issue in March. In October, the group released its final report, which states that several government organizations will issue new guidelines for insurers addressing parity and addiction treatment. 

Even as all this work is being done, the statistics remain grim.

Last month, the U.S. Surgeon General released a detailed report on substance abuse. Among its findings: More people now are battling substance abuse disorder than people with all cancers combined. Of them, only about 10 percent receive treatment. 

Today, more Americans die of drug overdoses than in car accidents each year, according to the CDC. Opioids are the main drugs associated with such deaths. 

And accompanying each death is a family left behind.

Losing Courtney

Courtney Griffin of Newton, N.H., was a bright, inquisitive girl with lots of friends and aspirations to join the U.S. Marine Corps and move to Hawaii, her family says.

Opioids derailed her ambitions. Over three years, her loved ones watched as heroin addiction consumed her.

The Griffins say they faced resistance from their insurance company in seeking treatment for their daughter. And when they finally did get her a bed at Anna Jaques Hospital in Newburyport, she died of a heroin overdoes just days before she was scheduled to check in.

Courtney was 20 years old.

“She almost made it. She came so close,” said Pam Griffin, Courtney’s mother. “It’s so sad to have someone want help so desperately. And there was none.”

Courtney, who died Sept. 29, 2014, started using as a 17-year-old senior at Sanborn Regional High School in Kingston. Her parents were able to check her into a program at Hampstead Hospital, which their insurance company covered for nine days. 

That wasn’t long enough, they say. Courtney needed more treatment, but the family’s coverage with Anthem was exhausted. Without guidance or even a full understanding of addiction, the family was left to try to keep Courtney alive on their own. 

Her father, Doug Griffin, said some days they would take her to the emergency room, just to keep her from using, even if only for a few hours. She would be held in a room for “observation,” then released.

When someone recommended a program at the Farnum Center in Manchester, they thought they may have found a solution. Courtney was on board.

“She asked for it; she begged for it,” Pam said. “We thought finally, she’s going to get some help. We’re going to get our Courtney back.”

When Pam and Courtney went for an intake appointment, they were met with disappointment. A Farnum representative sat down with them and asked if Courtney had any money at all. The program cost $12,000, she said, and their insurance had denied inpatient treatment.

“The woman said Courtney had been declined because it wasn’t a matter of life or death,” Pam said. “When we were told that, Courtney looked at the woman and said, ‘This drug is going to kill me,’ and those are the words that burn in my mind.”

A representative at Anthem denies Courtney was declined because “it wasn’t a matter of life or death,” saying the Farnum Center likely was told that inpatient treatment wasn’t “medically necessary.” The Griffins insist those were the exact words they were told by Farnum and have said so publicly on a number of occasions, including a recent campaign ad for Ayotte they appeared in. 

Representatives from the Farnum Center did not respond to requests for comment.

Anthem Medical Director Dr. Richard Lafleur said Courtney’s case was reviewed based on guidelines developed by the American Society of Addiction Medicine. 

“The clinical criteria was applied at that moment in time, and generally we don’t really look at the case any differently,” Lafleur said. “What we know about the case and what was supplied to us at that time, the criteria wasn’t met for that level of care. But that doesn’t mean that there aren’t other levels of care.”

According to Anthem’s records, Courtney was approved for extensive outpatient treatment, rather than inpatient. Pam said they were told by the Farnum Center that other options were available.

“She did mention something to that effect, but it was so devastating that we weren’t able to get service right then and there,” Pam said. “I didn’t understand what the options were. I didn’t know what outpatient was. We were in crisis mode, and we felt that there wasn’t an alternative.”

Doug described the experience as like living in a blender.

“It was all happening fast and it was new to us. We didn’t know where to go or who to turn to. It’s like an accident happening. You just respond and do the best you can,” Doug said. “If I had known then what I know now, I could have kept her alive.”

Trying to save Andrew

When Andrew Foote’s family discovered he was addicted to opioids in 2009, they sent him to treatment twice. When he continued to struggle, they tried methadone, a heroin replacement drug that alleviates withdrawals without providing a high.

The nearest methadone facility was Habit OPCO, an outpatient clinic in Lawrence that did not accept the Foote’s Blue Cross Blue Shield Massachusetts insurance. While appealing to their insurers, they paid out of pocket, and eventually did received $5,000 in back payments. 

Andrew’s visits to the clinic were nearly daily and the costs mounted with each $20 co-pay. The family says after that initial reimbursement, they were denied further payments. 

“We told them we need some help with this because he’s coming off this medicine, and he has a possibility of dying if he comes off this program,” his father, Lenny, said.

Blue Cross Blue Shield representatives said they could not comment on Andrew’s case due to privacy laws, which the Footes declined to waive.

Speaking more generally, Dr. Ken Duckworth, medical director for Behavioral Health at Blue Cross Blue Shield Massachusetts, said complaints about co-pays and deductibles with methadone treatment are frequent. He said the company has changed its policy: As of July 1 this year, Blue Cross no longer requires co-pays or deductibles for people seeking methadone treatment, he said. 

After his overdose, Andrew spent 155 days at Mass General and the Spaulding Rehabilitation Center in Cambridge and Charlestown, including 12 days in the Intensive Care Unit.

The family’s insurance covered all of those expenses, as well as physical and occupational therapy when he went home. Through multiple visits a week, Andrew made slow, yet remarkable, progress. He was not expected to walk or talk, but over time he regained the ability to do both with some assistance.

On Jan. 28, 2016, the family received a letter from Blue Cross. 

“You have exceeded the maximum number of visits recommended by the criteria we use, hence the therapy is not considered medically necessary short term rehabilitation therapy,” the letter stated.

His parents say they were stunned. 

“Without even examining Andrew, they wrote letters saying ‘nope, he doesn’t meet our criteria,’ even though the doctors all said ‘no, he needs this treatment,’” Lenny said. “As soon as the therapy stopped, his condition worsened.”

The family filed a grievance, to no avail. Despite the protests of his medical team, Andrew stopped therapy.

Duckworth said all criteria used by Blue Cross for making decisions regarding medical necessity are developed by an outside company. He added that those guidelines are a framework, and before any decision can be made, the company has to do its due diligence. 

“In Massachusetts, insurers don’t have to evaluate and interview the patient, but they have to gather all of the information possible,” Duckworth said. “So in our situation, we call the therapists, we call the psychiatrists, we talk to the highest licensed person we can get, usually a doctor, and try to gather all the information we can.”

As a stopgap, the Footes set Andrew up with a chiropractor to keep his muscles from atrophying. 

In addition to Blue Cross Blue Shield, the family also applied for and obtained secondary insurance through MassHealth. But as they tried to get Andrew enrolled in a program, they found a lot of them wouldn’t take him because of the nature of his injury.

“The type of brain injury he has is an acquired brain injury, and a lot of the programs the state runs are for people who have brain injuries from blunt trauma to the head, like an accident,” Andrew’s mother, Linda Foote, said.

They eventually connected with state Rep. Diana DiZoglio, who helped enroll Andrew in Career Resources in Haverhill, which accepts MassHealth. He has attended since July, three times a week for five hours a visit.

“They do activities, more like social activities. It’s a group setting, so he’s with other people. And it’s wonderful,” Linda said. “They’re great there, but he’s not getting that one-on-one time with a therapist.”

Since his therapies stopped, Andrew’s condition has steadily deteriorated. The family worries that if they can’t get him back on the upswing soon, it may prove to be too late. 

The larger picture

In the two years since Andrew’s overdose and Courtney’s death, the devastation wrought by the opioid epidemic has begun to move out of the shadows and into the mainstream view.

The Griffins have become tireless advocates for people affected by drug addiction. Among other efforts, they founded a nonprofit — Project Recovery — through which they hope to one day open a recovery house in Courtney’s name.

“We really want to buy a farm, and we want to have people come out of the 28-day cycle who haven’t been to college, who don’t have any assets, to come be part of the farm and grow crops and share in the earnings of the farm and be part of the farm for two years, so they can learn and work and do something,” Doug said. “We could partner with UNH, animal husbandry and the horticulture people. We can do farmer’s markets and sell the food.”

Improving access to treatment is key, Griffin said, because while insurance companies might make for an easy target, the truth is that there are plenty of other roadblocks.

First a family will go to get treatment, but the facility won’t take their insurance, or the insurance will deny the claim. Next, the family will get a list of places that do take the insurance, but then there will be other issues.

Sometimes a facility is too far away. Sometimes a patient will only receive treatment if he or she just overdosed. Still other times, prior authorization is necessary for a certain treatment. That’s when an insurance company has to pre-approve a medical service, a process that sometimes takes days or weeks.

But most of the time, Doug stressed, even when everything else falls into place, there just aren’t enough beds. The patient has to wait.

“When an addict is ready you have about 15 minutes, because they’re going to go use,” Doug said. “And I’m talking minutes, literally minutes. But if you can get them locked into a program, if you can get them treatment, they can survive.”