When it comes to substance use and addiction, frontline healthcare providers are often in the dark.
As our country battles opioid addiction, the healthcare data that doctors, hospitals and public health professionals need is inaccessible. Separate privacy laws that govern access to medical records for substance-use disorders, versus every other medical condition, including HIV/AIDS, mental health and cancer, are affecting how providers treat patients suffering from addiction.
The Health Insurance Portability and Accountability Act is the privacy law governing medical record and healthcare data. HIPAA fines can range from $1,500 to $1.5 million for violations, privacy breach consumer notification requirements and an explicit prohibition against anyone except for healthcare providers, insurers or healthcare clearing houses from accessing medical records for the purposes of treatment, payment and healthcare operations.
42 CFR Part 2 (Part 2), the federal law that governs the privacy of substance use disorder records, came into existence in 1972, predating HIPAA. This was a time when medical providers used paper records and substance use patients were often limited to either 12-step Alcoholics Anonymous programs or methadone clinics. Part 2 has a maximum fine of only $500, has no requirement to notify the public when there is a breach and is only enforceable by a U.S. attorney.
Consequently, a doctor may not know anything about a patient's substance use history because the Part 2 law requires substance use medical records to be separated from the rest of the patient's medical history. Trying to solve for addiction without seeing a patient's full record is like flying a plane blindfolded.
While industry research and reports published over the past two decades have shown how a fragmented and segmented healthcare system is harmful to patients and the public it serves, the perils of a siloed system are starkly and tragically on display in the opioid crisis.
This lack of data is impacting our most vulnerable populations and their ability to achieve health equity or optimal health.
This 1970s law creates fragmented care coordination which has resulted in inequality and the ever-increasing presentation of opioid overdoses in emergency departments across the U.S.
Only providers that participate in Medicare and Medicaid apply to Part 2 laws, which has essentially created a two-tiered system of care. Medicaid and low-income Medicare patients, known as dual-eligibles, face many health risks and require careful care management. And while Medicaid is one of the biggest providers of addiction treatment, Part 2's mandate to segment substance use history limits healthcare professionals' ability to coordinate care for this population.
Moving beyond the challenges with social determinants of health, under Part 2, states lack pertinent data to improve public health across urban, rural and suburban communities. This is why the National Governors Association has sent multiple letters to Congress urging changes to the law. It's also why the American Medical Association's House of Delegates supported a resolution to align Part 2 with HIPAA.
A group of 50 national organizations, including patient advocates, providers and payers formed the Partnership to Amend Part 2 three years ago in a concerted effort to align Part 2 laws with HIPAA's treatment, payment and healthcare operations provisions and protections. The partnership is hopeful that Congress will soon enact these changes. Eleven Republican and Democratic senators are supporting the Protecting Jessica Grubb's Legacy Act (S. 1012) and more than 40 members of the House have renewed the push to pass the Overdose Prevention and Patient Safety Act (H.R. 2062), which passed in the House but stalled in the Senate last year.
Ultimately, one standard of privacy for health information is needed to improve equity of care, prevent the tragic loss of those succumbing to opioid-related deaths, and achieve better outcomes.