Donna Rose’s 21-year-old son is addicted to heroin.
 
“Trying to navigate through the insurance requirements and time delays is a nightmare,” Donna said.
 
Kathy’s 21-year-old daughter is also a heroin addict.
 
“If I go to my primary care and give her the card, they swipe it and say here’s your co-pay. It’s not the same with addiction,” said Kathy.
 
Becky’s son died of an overdose two months ago.
 
“It was almost a full-time job. Seriously, I spent hours on the telephone fighting with the insurance companies,” Becky said.
 
Kathy and Becky did not want to share their last names. All of the women wanted to protect the privacy of their children. 
 
The mothers met at a support group for parents of children struggling with addiction. They have a shared complaint: dealing with insurance companies and the cost of treatment.
 
“It has to be $20,000 to $30,000 over two to three years,” said Donna, referring to how much she’s spent on her son’s treatment. “Three months ago I drove with a check for $13,000 to Clifton Springs hospital to pay for our son’s inpatient.”
 
“When you’re doing outpatient. they recommend 5 days a week. Your copay is $25 a day, so you’re paying $125 a week,” Kathy said. “We just had no more money left.”
 
Denials or partial coverage was common. Donna’s son has Excellus. She showed us a plan booklet offering unlimited treatment for addiction. But there’s a caveat: the treatment has to be deemed medically necessary. Her son’s inpatient treatment was denied. The denial letter cited the fact he has strong support at home.
 
“Legally insurance companies are to treat addiction as they treat any other disease, any other medical concern, and they’re not,” Donna said.
 
Last year, New York State Attorney General Eric Schneiderman found Excellus and other major insurers wrongly denied addiction treatment to thousands of people. The companies agreed to reform their claims review process. Schneiderman’s office continues to monitor the insurers for potential violations.
 
“There still are questions. The denial rates may be improving, but for some families they don’t see that difference because there are still denials happening,” said Lisa Landau, chief of the Health Care Bureau.
 
Excellus said in a statement it follows the law.
 
“To ensure that requested services are medically necessary, which is required in our member health plan contracts, we use processes that adhere to the New York State Insurance Law.  We also use objective clinical criteria that are developed and updated annually by a national, reputable third party,” said spokesman Jim Redmond in an email.
 
Donna, Kathy and Becky say treatment providers advised them to kick their children out and put them on Medicaid, which covers treatment in full. Kathy, out of money and desperate to get her daughter help, deliberately made her daughter homeless.
 
“You’re just trying to figure out how to help your child survive, to live. Really, you don’t have any time,” Kathy said.
 
Becky’s son ran out of time.
 
“If we caught it sooner and we didn’t have to battle the insurance back when it first started, then maybe, yeah, it could have made a difference,” Becky said.
 
The moms are now fighting back. They want better insurance coverage and more resources for addiction treatment. They organized a town hall meeting at Genesee Community College on May 17 at 6:30 p.m. A representative from the State Attorney General’s office is attending.
 
“We moms, we are friends. We are in this battle, holding each other up, fighting for the lives of our loved ones,” Donna said.
 
“The system is more than broken, and it’s not just in Rochester and it’s not just in New York State. It’s everywhere and things have got to be fixed,” said Becky.
 
Anyone with complaints about insurance coverage can call the State Attorney General’s hotline at 1-800-428-9071.