A father from Voorhees, N.J., is pushing for changes to the patient privacy rules known as HIPAA. He wants parents of children up to the age of 26 to have access to their kids’ medical records when issues of substance abuse or mental health issues become life-threatening.
For Gregg Wolfe, the effort is fueled by personal tragedy. He was the one to discover the body of his 21-year-old son, Justin, in December.
“He was home for winter break … it was around 5:30 in the morning,” Wolfe said. “When I was lying on my bedroom floor crying after I found Justin, and the paramedics came and found the four packets of heroin and told me it was a heroin overdose, I was in total disbelief.”
Wolfe knew his son, a Temple University student, had been struggling with Percocet and Oxycontin addiction. He did not know Justin had been using heroin for almost two years, but his doctors did.
“If the (doctor) would have told me, or his mother, that he was doing heroin,” Wolfe said, “it would have prevented his death — not to 100 percent certainty, but a greater chance of his survival of getting the necessary help that he needed.”
Wolfe has written to the White House and Capitol Hill, asking for changes in federal medical privacy rules to allow addictions to be disclosed to parents of adult children.
But Wolfe’s idea is in tension with premise behind the law: that patients will get worse care, or no care, if they suspect what they tell doctors isn’t confidential.
“People may not see their health-care provider, they may not be completely frank with them, and then the provider can’t give them appropriate treatment,” said Drexel University health law professor Rob Field.
Field said Wolfe is not the first to ask for changes to the 1996 law.
“But nothing has been changed along the lines of making it easier to release information. It’s generally making it harder,” Field said.
Wolfe hopes his plea bucks the trend. He partly blames the death of his son on what he sees as overzealous privacy regulations.