West Virginia’s two senators, Republican Sen. Shelley Moore Capito and Democrat Sen. Joe Manchin, have reintroduced legislation aimed at modernizing 42 CFR Part 2 regulations.
The bill, known as the Protecting Jessica Grubb’s Legacy Act, would change practices for data sharing and levels of privacy for substance use disorder patients’ medical records. It is named for a Charleston, West Virginia, woman in recovery from substance use disorder who was prescribed oxycodone after surgery. The discharging doctor who wrote the prescription was unaware of the patient’s substance use history. The woman later died from an overdose.
The language of 42 CFR Part 2 has been under ongoing scrutiny. In August 2019, a letter from the National Association of Attorneys General called the rules “cumbersome” and “out-of-date.”
Several changes have been made to the legislation since it was previously proposed, as detailed by Manchin’s office:
- Initial consent: Affirmative, written consent from each patient wishing to opt in for having their information shared is required. Patients must be educated on what they are consenting to before making the decision, and an opt-out clause has been added if patients decide to later rescind their consent.
- Anti-discrimination: Existing patient protections will be enhanced to prevent substance use disorder patients from discrimination in relation to: access to treatment, termination of employment, receipt of worker’s compensation, rental housing and government-provided social services
- Collaborative rulemaking: The bill directs the U.S. secretary of Health and Human Services to consult with relevant legal, clinical, privacy and civil rights stakeholders before updating the Code of Federal Regulations affected by the provisions in the bill.
Clif Gaus, ScD, president and CEO of the National Association of Accountable Care Organizations, said in a statement that while the legislation falls short of providing full alignment with HIPAA regulations, it would improve treatment for patients with substance use disorders.
“After decades of obstacles to providing coordinated care for these patients, it is critical that barriers from outdated laws be removed, which this bill would do,” Gaus said in the statement.
Meanwhile, the Legal Action Center, a not-for-profit law and policy organization that advocates for preventing discrimination against people with histories of addiction, HIV/AIDS or criminal records, said in an email to BHE that it is not on board with the bill.
“Unfortunately, the legislation is not responding to a patient privacy problem, since it relies on the weaker HIPAA standard…to transmit and access substance use disorder information,” LAC said in the email. “Instead, the Legal Action Center urges the use of current federal and state laws that are more stringent to protect this information and coordinate care.”
LAC said the reintroduction of the bill “suggests that various healthcare industry stakeholders have not received sufficient training about recent updates to 42 CFR Part 2 that facilitate sharing substance use disorder records to providers in electronic health networks and other settings, while safeguarding sensitive health information.”