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The Protecting Jessica Grubbs Legacy Act (S. 3374) has been reintroduced by Senators Joe Manchin (D-W.V.) and Shelley Moore Capito (R-W.V.). The Protecting Jessica Grubbs Legacy Act aims to modernize the 45 CFR Part 2 regulations to support the sharing of substance abuse disorder treatment records and improve care coordination.
42 CFR Part 2 regulations restrict the sharing of addiction records, which makes it very difficult for information to be shared about patients who are recovering from substance abuse disorder. Currently 45 CFR Part 2 regulations only permit substance abuse patients themselves to decide who has access to their full medical history. While the sharing of highly sensitive information about a patient’s history of substance abuse disorder and treatment is intended to protect the privacy of patients and ensure they are protected against discrimination, not making that information available to doctors can have catastrophic consequences, as happened with Jessica Grubbs.
Jessica Grubbs was recovering from substance abuse disorder when she underwent surgery. The discharging doctor prescribed oxycodone and Grubbs returned home with 50 oxycodone pills. She later died of an overdose. If the discharging doctor was made aware that Grubbs had a history of substance abuse disorder, a different medication could have been prescribed.
Medical providers are responsible for providing care to patients, but without access to their full medical histories, they are doing so blind. It is difficult for medical providers to make correct decisions about patients’ care if they only have access to incomplete medical records.
The Protecting Jessica Grubbs Legacy Act was introduced to ensure medical providers have access to all the necessary information, so they do not accidentally give opioid drugs to patients in recovery from substance abuse disorder. The Protecting Jessica Grubbs Legacy Act will help to ensure tragedies such as the death of Jessica Grubbs are prevented.
“No family or community should ever have to go through the senseless and preventable tragedy that Jessica Grubbs and her family had to endure,” said Sen. Manchin. “This bipartisan bill is essential to combating the opioid epidemic and ensuring that these painful deaths are prevented.”
Healthcare industry stakeholders have been pushing for changes to 42 CFR Part 2 regulations for several years and Congress has been petitioned to make changes to the regulations. In 2019, the National Association of Attorneys General wrote to House and Senate leaders calling for changes to the regulations, which were called cumbersome and out of date. 39 state attorneys general signed the letter. The HHS also proposed changes to 45 CFR Part 2 last year to align the regulations more closely with HIPAA.
The reintroduced Protecting Jessica Grubbs Legacy Act includes several revisions to the original act, S. 1012, which was introduced in April 2019. The language of the bill has been changed to require a patient to give their affirmative, written consent to opt-in before their information may be shared. An educational component has also been added that requires patients to be informed about exactly what they are consenting to before a final determination. An opt-out clause has also been added that allows patients to opt out and rescind their consent at any time. The revised Protecting Jessica Grubbs Legacy Act also calls for Part 2 regulations to be aligned more closely with HIPAA.
To ensure the privacy of patients is protected, enhancements have been made to current protections to prevent discrimination in relation to access to treatment, termination of employment, receipt of worker’s compensation, rental housing, and federal, state, and local government social services benefits.
The Secretary of the Department of Health and Human Services will be directed to consult with appropriate legal, clinical, privacy, and civil rights experts when updates are made to the Code of Federal Regulations to implement the changes proposed in the bill.
“This is an ideal compromise that alleviates the roadblocks to care coordination, while providing strong protections, and more importantly providing those suffering with substance use disorder, more comfortable in knowing they can share medical records in a protected manner and enforced with real penalties to prevent misuse of sensitive medical information,” said Sen. Manchin in a statement.
The revised bill has received considerable support from industry stakeholders and the bill has been co-sponsored by Sens. Sheldon Whitehouse (D-R.I), Kevin Cramer (R-N.D.), Dianne Feinstein (D-Calif.), Doug Jones (D-Ala.), Chris Murphy (D-Conn.), Thom Tillis (R-N.C.), Susan Collins (R-Maine), Kamala Harris (D-Calif.), Bill Cassidy (R-La.), Amy Klobuchar (D-Minn.), and Jeff Merkley (D-Ore.).