Erin Fitzpatrick and Justin Wolfe were, for the most part, normal young adults. Erin had been an honor student and a softball player. She was a junior dog handler and regularly competed in dog shows. Justin was a sports fan, popular and charismatic. He attended Temple University, joining a fraternity and studying risk management.
Erin and Justin never met. Justin died of a heroin overdose in December at the age of 21, and Erin, also 21, is undergoing treatment in a rehab facility, waiting for a court date to face burglary charges. Both were ostensibly successful young adults. And both were addicted to heroin.
Drug-related deaths have risen steadily over the last 11 years, according to a study from the Centers for Disease Control. In 2010, drug overdoses killed 38,329 people, making drugs a more common cause of death than car accidents, guns or alcohol. Nearly 60 percent of those deaths were from pharmaceutical drugs, the majority of which were opioids.
Now, Erin's mother, Maureen Fitzpatrick of Pitman, and Justin's father, Gregg Wolfe of Voorhees, are advocating for changes to health care regulations that they say prevented them from getting the treatment their children needed.
Wolfe wants the Health Insurance Portability and Accountability Act (HIPAA) changed so that any mental health or addiction treatment records of young adults can be shared with their parents as long as they remain on the parents' health insurance. Current federal health care regulations include privacy measures that are intended to protect patients. Though Fitzpatrick does not specifically want to alter HIPAA, she does want parents to have more access to their children's medical records - currently, drug treatment records of teens are only available to parents with the minor's consent - and to give parents the right to place teenage addicts in a long-term treatment facility without the consent of the child.
Both parents point to the manipulative nature of addiction and the limited decision-making capabilities of young adults and adolescents as part of the reason parents should have more control.
Erin was able to refuse long-term addiction treatment at the age of 16. And because her drug test results were not disclosed to her family, her parents continued to seek mood disorder treatment for their daughter, rather than treatment for addiction.
“It was a vicious cycle,” Fitzpatrick told the South Jersey Times.
She takes particular issue with 42 CFR, the federal statute that includes, among other things, a measure outlining confidentiality in substance abuse treatment. The family made repeated trips to local emergency rooms and crisis centers in response to Erin's erratic and sometimes destructive behavior. It took burglary charges this past February to get her to enter long-term treatment, which Fitzpatrick wrote about in a letter to the Times.
“She'd stay for three days, come home and a couple weeks later she'd go back,” Fitzpatrick said of her daughter's stints in crisis centers. “When she was coming off the heroin was when she'd go crazy. She always calmed down at the emergency room.”
After the family found out about Erin's addiction, they sent her to a treatment facility in Florida in 2011. She ran away from the facility and was missing for several weeks afterward.
“A mentally ill drug addicted child should not be allowed to take care of herself,” Fitzpatrick said.
Wolfe told the South Jersey Times he didn't know his son had been using drugs until last June. And while he was aware that his son was abusing prescription opioids, he didn't know Justin was snorting heroin until after his death. Justin had told doctors as well as his therapy group about his heroin use, but the fact that he was a legal adult meant the information would not be shared with his father without his say-so.
Not knowing just how deep Justin's problems ran, Wolfe had his son enroll in outpatient rehab. Justin had told his father that he feared in-patient treatment would expose him to harder drugs than Percocet and Oxycontin, which, as far as Wolfe knew, were the only drugs his son was taking.
“I believed Justin,” said Wolfe. “There was a lot of deceit back then, looking back.”
In addition to sending Justin for treatment, Wolfe cut off his son's cash flow and took away his cellphone. Since Justin was 21, Wolfe couldn't force his son into inpatient rehab, and even if he had, Justin had the legal right to sign himself out. As the academic year got under way, it looked as though Justin had made it back on track.
“Even the day he passed, somebody asked how he was,” said Wolfe. “I said, ‘he's wonderful.’ I found him overdosed Dec. 19.”
Wolfe said the confidentiality regulations set by HIPAA prevented him from receiving valuable knowledge that might have saved his son's life. He has written to President Barack Obama as well as numerous legislators about his cause.
“The key is to stick with mental disorders and addiction,” he said, explaining that he does not want to change privacy laws regarding sexual or reproductive health for teens and young adults. “They can't think rationally. At least they have a head start with a parent involved.”
Fitzpatrick, meanwhile, wants to change federal legislation that requires written consent from a minor to disclose drug or alcohol treatment to parents.
“It's been doors closed in our face,” Fitzpatrick said. “And I really blame some of these laws for not allowing me to get my daughter the care she needed.”
“A lot of times people look at you and they say, ‘If I was her parent, I would have done this.’ But they don't know we tried everything.”
Margo Kaplan, an assistant professor at Rutgers-Camden who specializes in health law, said that while she supported the intentions of the parents, she opposed altering privacy laws, which are designed to protect patients - and teens in particular - from possible abuse.
“It's important to note that weakening these protections will also affect minors with far less supportive parents - minors who want to seek help, are getting treatment, but only feel safe doing so if they can do it without their parents being notified,” said Kaplan.
She said that changing privacy laws could discourage the recovery efforts of teens and young adults who want to get clean, but fear reprisal from their families.
“Imagine a 16-year-old who seeks drug treatment but knows his parents will kick him out if they find out. His losing his home is only going to put another obstacle in the way of successful treatment. In his situation, confidentiality is key to his health. Doing away with (privacy policies) may result in some parents receiving more information; most parents won't be any better informed because their teens will simply hide their addiction rather than seek help. At the end of the day, the main effect it will have is that teens will receive less treatment.”
Wolfe, however, sees a possible breach of privacy as a minor infraction if it helps a parent save a child's life.
“A parent has to have the right to save their child,” he said. “We're their guardians.”
Fitzpatrick argued that people suffering from addiction are unlikely to change of their own accord.
“In my experience, kids who are addicted to drugs are not going to seek help,” she said. “Parents at this point have to think for them, because drug addicts die. Of course she doesn't want to stop; she doesn't care about anything else. I should have the right to say ‘I don't care if you want to stop.’”
Although Kaplan disagrees with Wolfe and Fitzpatrick on policy, the three all concur that the national dialogue on how society views addiction needs to change.
“One of the conversations we need to be having is how to reduce the stigma of getting help for drug use,” said Kaplan. “The majority of our approach to drugs in this country is a punishment approach. It's a failing approach, and it's compounding the drug problem by limiting the ability of people who have a drug problem to improve their lives. Prison is simply not a good place to get drug treatment.”
That stigma, Fitzpatrick pointed out, affects parents as much as it does the addicts themselves.
“Parents really need to not be embarrassed,” she said. “It's affecting more people than they realize. They need to know they're not alone.”
Wolfe hopes his son's story will serve as a message to other families.
“If we save even one life, we'll have done something,” he said.
For Fitzpatrick, it's not too late.
“Erin was and still is a wonderful girl,” she said.
“Any more, I can't tell the difference between who's heroin and who's Erin. But I haven't given up hope that she'll come back to us.”