Temple University student Justin Wolfe suffered a fatal heroin overdose in December. The ambitious business major was just 21 years old.
"No one in the family knew he was doing heroin," his father Gregg said. "We weren't allowed to be told because of HIPAA regulations. He would not sign a waiver to allow us to be aware of this."
Gregg Wolfe found out last summer Justin was addicted to prescription opiate painkillers Percocet and Oxycontin when his son began attending outpatient rehab. But he says Justin told two different doctors he'd also had a heroin habit since May of 2011.
Though Justin was covered under his father's health insurance plan, patient privacy laws prevented the doctors from telling family members about his addiction because he was a legal adult.
"If you are mentally disabled and have a disease of the brain – and heroin, I've learned since then, does twist the brain to a certain degree, making it numb to feeling – they should have it where HIPAA laws are changed or revised for mentally disabled individuals, as well as drug addicts, in order have their parents made aware of their problems," Wolfe said.
Wolfe believes had he been given more information about his son's addiction, he may have been able to prevent his death. "Heroin withdrawal, from what I understand, is much worse than Oxycontin or Percocet because you need a much longer duration of a stay at an inpatient rehab – six to nine months versus just a month," he said.
"If I knew [Justin] was on heroin, he never would have gone back to college. I would have demanded he go into inpatient rehab and make sure, based on what he was doing, that he stayed in inpatient rehab for several months."
Justin instead returned to Temple, where he joined a fraternity and appeared to be doing well. But during winter break six months later, he took what turned out to be his final dose of the drug.
"He overdosed in my house and in his pockets were found four packets of heroin," Wolfe said. "To say the least, we were all shocked he was doing heroin and we weren't apprised and weren't allowed to be apprised of any of this."
Wolfe thought he was taking the proper precautions to monitor his son's addiction, but says he learned too late the degree to which drug use can be concealed.
"Justin always said he would never touch heroin or crack cocaine," he said. "I checked his body for needle marks and there were none – he was deathly afraid of needles.
"For every 10 people I talk to, nine people are unaware you can snort heroin. Most people think you have to shoot it and unfortunately what he was doing was snorting it. From what I've learned, the most powerful or potent heroin in the country is sold in Camden, which is where he was going to get the heroin and how he was able to snort it."
He said the manipulative and deceitful behavior associated with addiction makes it even more important for health care providers to be able to share information about the condition of addicts with guardians, even in the absence of patient consent.
Wolfe has since embarked on a legislative letter writing campaign urging patient privacy laws be revised to allow more disclosure when it comes to addicts and mentally disabled patients. He said he's already contacted President Barack Obama, governors Tom Corbett and Chris Christie and various state Congress members representing Pennsylvania and New Jersey.
"It's not only in honor of my son, but to help many other individuals who have addicts or mentally disabled children, who are in the same position or could be in the same position and who don't know where to turn," he said.
"And they can't get through because their child – even though they're not 21, they're not emancipated in the sense of being out on their own, they're still living within a person's household – is a legal adult. We are taking care of them under our insurance, therefore it should be the obligation of physicians to be able to apprise us of what's going on."
"Also, some patients do not wish to share their information even with family as part of their treatment. Yet there are other interests, such as those raised by this father. The law must balance all of these interests and in the privacy and security arena, the law is changing all the time to accommodate the concerns of various parties."