On May 8th, NAMI Ohio Policy Director, Dustin McKee, testified before Congress in support of fair and equal treatment of health information across all conditions. Speaking to the House Energy and Commerce Committee’s Subcommittee on Health, McKee expressed support for a bill that would update an outdated federal regulation known as 42 CFR Part 2. This regulation stopshealth care providers from accessing important information about a person’s substance use disorder history.
Health care providers need to know if a person has a substance use disorder in order to treat all health conditions appropriately. Current substance use or a history of substance use can change a treatment plan. Without knowledge of a person’s substance use, health care providers might:
- Inappropriately prescribe opioid medications
- Inadvertently trigger substance use relapse
In many cases, these unintentional actions have led to harmful health consequences and even drug overdose deaths. Sharing a moving story about his brother, McKee illustrated the challenges with 42 CFR Part 2 during his testimony:
“According to the Centers for Disease Control and Prevention, 10,383 people have died from opiate overdoes in Ohio since 2014. One of the people who died of an opiate overdose in 2014 was my big brother, Brandon Johnathan McKee. He was 36. He was the father of three sons, ages 4, 11 and 16 at the time of his death.
Brandon’s death was preventable. However, in part because of the antiquated provisions contained within 42 CFR Part 2, the medical professionals that prescribed him opiate-based pain medications were not able to identify him as a high-risk individual with a history of substance use disorders, substance use treatment and countless relapses.
Brandon was a talented salesman. By age 21, he was making a six-figure salary as a sales manager at a car dealership in Mansfield, Ohio. However, despite his career success, his addictions constantly plagued him. Even after receiving two courses of residential substance use treatment, and ongoing outpatient treatment, his substance use led to several eventual job losses, multiple DUI’s, family strife and an eventual divorce.
After his divorce, Brandon moved into my mother’s basement in Wooster, Ohio. He was 35 at the time. Although he was trying to get sober and going to meetings, he relapsed one night. He took his truck to the bar after taking some mixture of tranquilizers and alcohol. He drank until the tavern closed, and then tried to drive his truck home. That night, he passed out behind the wheel and crashed into a large post, shattering several vertebrae in his back.
After the accident, he was taken to Wooster Community Hospital and was eventually transported to Cleveland Metro Hospital where he would have back surgery to repair his spine. Because of 42 CFR Part 2, his orthopedic surgeon had no way of knowing that Brandon had a serious opiate-related substance use disorder. Brandon did not sign a waiver, nor would he ever sign such a waiver if he had a chance to get a long-term prescription for opiate pain killers. These medications made him feel perfect, and he couldn’t resist such an opportunity.
After the surgery, his surgeon gave him a prescription for a high dose opiate-based pain medication, with multiple refills. Four months later, he fell down and broke the titanium screws in his back. This second accident required a second surgery. Due to 42 CFR Part 2, the surgeon was once again unable to see that Brandon was an addict with a long history of substance use disorder treatment. Unsurprisingly, this lack of care coordination led to yet another prescription for a high dose opiate-based pain medication with multiple refills.
After Brandon’s pain medication prescriptions were used up, he turned to street heroin. However, until his fatal overdose, none of us knew that he was an intravenous drug user. He was going to work every day, selling cars and living in his own apartment.
Three days before he died, he called me. He finally admitted to me—and only me—that he was struggling with narcotics. He never told me he was addicted to heroin; he was too ashamed to say so. However, he said he’d been taking opiate-based pain pills and had been off of them for a week and a half.
He was crying. He told me he had made it through the “dope sickness” of withdrawal and would be attending an N.A. meeting that evening. Ironically, during our conversation, the battery in his phone was drained and his phone cut off before the conversation was finished. The last words he said to me was: ‘I’m going to go to that meeting brother, I promise.’ And then the phone shut off. Three days later, he died of a heroin overdose.”
Brandon’s tragic story demonstrates how 42 CFR Part 2 is a significant barrier to integrating physical and behavioral health treatment. It’s also a major patient safety issue. NAMI believes that 42 CFR Part 2 should be changed to align with the Health Insurance Portability and Accountability Act (HIPAA), the law that governs information-sharing for all health conditions. This change would align 42 CFR Part 2 with HIPAA only for the purposes of treatment, payment and health care operations; it would not place an individual’s records at risk of being used for other purposes, such as housing, employment or law enforcement.
On May 17th, thanks in part to Dustin’s powerful testimony, a bill (H.R. 6082) that will update the 42 CFR Part 2, passed the House Energy and Commerce Committee by a vote of 35-17. The bill will now be voted on in the full U.S. House of Representatives in mid-June.
You can help. Contact your U.S. Representative. Tell them to pass H.R. 6082 to support the equal treatment of health information.
Jessica Hart is senior manager of field advocacy at NAMI.
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