Amid a national opioid epidemic, should family members have the right to know when an adult child has been revived from an overdose?
The right to medical privacy is enshrined in the Health Insurance Portability and Accountability Act (HIPAA) and a host of other confidentiality rules. But a White House-appointed panel is now considering whether to recommend that those privacy regulations be relaxed in a bid to help contain the country’s rising tide of opioid overdoses.
New Jersey Gov. Chris Christie, who is leading President Trump’s opioid task force, this week told reporters the panel is discussing ways to ensure family members know when a person is revived with naloxone following an overdose. The goal would be to ensure that, after a near-death experience, those struggling with addiction have a support system to help steer them toward treatment.
“There has got to be a way that we can let parents and loved ones know when people have been reversed with Narcan,” Christie said Monday, using a brand name for naloxone. “Overdose is often a cry for help whether it’s intended to be that or not, so we need to find our way around it.”
An aide to Christie told STAT that families of people with addiction had brought up the issue with the Republican governor as he met with them at treatment facilities and support groups. Parents who lost their young adult children, some 18 and 19 years old, to fatal overdoses have told Christie that they didn’t know their children had previously overdosed and been revived because of privacy issues, the aide said.
It’s unclear whether Christie’s panel would recommend pursuing federal legislation or administrative changes to permit parental notification in the case of opioid overdoses.
Congress has not shown much willingness to engage on efforts to relax medical privacy laws. Last year, both chambers rejected an effort that would have loosened HIPAA rules for individuals with certain medical conditions and would also have changed another federal regulation that governs confidentiality for substance abuse treatment records, like opioid addiction treatment.
Republican Rep. Tim Murphy of Pennsylvania had championed the effort to relax the rules as part of a legislative overhaul focused on mental health, which he spearheaded for Republicans as a response to concerns about gun violence. He said the changes would have helped improve treatment outcomes and communication among clinicians and caregivers, and added that he’s working again on legislation on the issue.
But disability advocates and other patient privacy groups opposed such changes. Along with many congressional Democrats and some Republicans, they suggested people might not seek treatment if they were concerned about the disclosure of their illness.
Jay Stanley, a senior policy analyst at the American Civil Liberties Union, echoed those concerns in regards to Christie’s idea. He said in the case of an overdose, people who are with the person who needs to be revived may be hesitant to call for help if they’re worried the person’s family will be notified.
“There’s a real danger that a lot of people won’t seek care if they can’t do so confidentially,” Stanley told STAT.
Asked about the possibility of relaxing privacy rules in the case of overdoses, a Democratic congressional aide said existing privacy rules, including HIPAA, don’t prevent providers from sharing information in every situation, suggesting that loosening rules seemed like a “shortcut” that could exacerbate other treatment issues.
“Similar proposals to Governor Christie’s were floated during the mental health and opioid debates last year and Congress decided on a bipartisan, bicameral basis to go in a different direction,” said Rep. Frank Pallone (D-N.J.).
Ron Honberg, the senior policy adviser at the National Alliance on Mental Illness, said Christie’s proposal could help provide caregivers with useful information to help their relatives. But he said that whatever the recommendation looks like, doctors should be given some leeway about what they disclose to families.
“I’m not sure a blanket rule is the way to go,” Honberg said. “You really need to leave some room for provider discretion.”
Some public health officials and experts questioned whether a change is necessary: Beyond the privacy issue, they said that in many cases, families already know when a relative is struggling with addiction.
“Breaking medical confidentiality is almost never a good idea, and particularly bad for drug users,” Scott Burris, co-director of the Temple University Center for Health Law, Policy and Practice, wrote in an email. “Our focus has to stay on making the health care system safe and supportive in its treatment of drug users, and to end the shortage of slots for effective treatment like methadone and buprenorphine. Family support is important, and sadly most families already know that their loved ones are using. They need affordable naloxone, not notification.”
Dr. Leana Wen, Baltimore’s health commissioner, said it was “a tricky issue,” arguing that disclosure to family members in the case of an addiction could take away a person’s right to privacy in a way that wouldn’t be permissible with other diseases. When people with diabetes struggle to control the condition and repeatedly show up in emergency departments, clinicians never consider unilaterally telling their families.
“For us to see addiction in a different light is to stigmatize the disease of addiction and categorize it differently than any other illness,” Wen said.