Stakeholders Renew Push to Align Treatment of Substance Use Records With HIPAA

Last year, as part of an opioid crisis package, the U.S. House of Representatives passed a bill committed to aligning regulations concerning substance use treatment records with HIPAA for the purposes of treatment, payment, and healthcare operations, but it didn’t make it through the Senate. This year healthcare stakeholders are urging Congress to renew these efforts. During a Feb. 19 press briefing, clinicians and advocates explained the urgency of their appeal.

First the background: The 42 CFR Part 2 (Part 2) federal regulations that govern confidentiality of drug and alcohol treatment and prevention records require limiting the use and disclosure of patients’ substance use records from certain substance use programs. Patients are required to give multiple consents, which health systems say creates a barrier for integration and coordination of care. The barriers presented by Part 2 can result in the failure to integrate services and can lead to potentially dangerous medical situations for patients. Most health information exchanges have found Part 2 consent too difficult to navigate, so most of not shared data from federally recognized substance use treatment organizations.

The Partnership to Amend 42 CFR Part 2 is a coalition of more than 40 national healthcare organizations representing a wide range of stakeholders, including patients, clinicians, hospitals, biopharmaceuticals, the mental health community, pharmacists, electronic health record vendors, and payers, committed to aligning Part 2 with HIPAA to allow appropriate access to patient information that is essential for providing whole-person care.

R. Corey Waller, M.D., M.S., chair of the Legislative Advocacy Committee of the American Society of Addiction Medicine, said he is coming at this from a clinician standpoint and as someone who works to build out the addiction treatment ecosystem at the county and state levels.

“What I find is that those of us who see patients on a regular basis understand more than most the role stigma and discrimination play. Patients worry about this in a number of realms,” Waller said. “We work hard overall to protect our patients. But sitting on other side of this is the real risk to patient safety. I have seen this firsthand, with patients in the emergency department, where we don’t know if they are in treatment and if they don’t disclose that in the emergency department for one reason or another, usually because of that worry of stigma, we may end up going down a pathway that ends up being the worst possible pathway for them for pain management of an acute injury or operative management or giving them medications that may interact with the other medications they are on.”

Waller said clinicians need access to the information about what is going on with a patient so they can develop the appropriate risk-benefit analysis of how to approach someone. “Without access to medical records in an integrated fashion, what we end up giving them is only a partial risk assessment,” he explained. “If I am looking at someone who comes in with a fever, there is a completely different workup for a patient who has a history of injection with heroin as opposed to someone who doesn’t, as far as where the fever may be coming from, and it entails a whole lot of things that if they get missed are fatal. And that puts patients at definite risk.”

He also noted that Part 2 also is a barrier to the expansion of health systems. He said he has spoken to CFOs and CIOs of large health systems who say one of the reasons they are not trying to build out a large line of service dedicated to the treatment of addiction is specifically because of Part 2. “They say if Part 2 is the law of the land, and they hold themselves out to be providers of addiction care, then the entire health system falls under Part 2,” he said, “and the internal counsel and CFOs and CIOs are unwilling to invest billions of dollars in order to train people and implement Part 2 compatibility, when the clear majority of people in a hospital do not have to have that type of coverage.”

Waller closed by saying the way Part 2 was written and the way it is siloing out addiction treatment from the rest of healthcare, “it is the last bastion of a large brick barrier that is keeping us from implementing integrated care for one of the most complex diseases we have, which is addiction.”

Jeremiah Gardner, a recovery advocate and counselor who works as director of public affairs for the Hazelden Betty Ford Foundation, stressed that there are legitimate concerns on the part of people who are wary of any changes to Part 2.

Folks on both sides of this issue tend to agree on the need for more coordinated and integrated care, less discrimination against patients with substance use disorders and appropriate patient privacy, he explained. “This has never been a question of privacy vs. no privacy or care coordination vs. no care coordination or discrimination vs. no discrimination. It’s more nuanced than that. It is a tough issue,” he said. The essential question has always been: Does HIPAA provide sufficient privacy protection to warrant removing Part 2 barriers that get in the way of efficient coordinated care? “Here is why we think the answer is yes. First, Part 2 only applies to federally assisted addiction treatment facilities and providers. Many others are already in alignment today with HIPAA and we have heard no reports of heightened privacy concerns coming from patients treated at those facilities. Congress exempted the VA in 2017 without controversy and to our knowledge no harm has been manifested there either. So those are a test case, in essence.”

A valid concern, Gardner said, is that bad or uninformed actors in the healthcare profession will discriminate based on the knowledge that the patient has been treated for addiction. “Our view is that good policy cannot be rooted in that kind of distrust. It is true that mainstream healthcare has neglected addiction for generations and that medical schools still don’t devote enough attention to it. It is true that discrimination in healthcare is real. But is it acceptable anymore to solve that with a policy that says addiction is different than other healthcare conditions, and that it is something that warrants extraordinary secrecy? That it is something so stigmatized among healthcare professionals that you may want to compromise your own care by withholding critical information? We don’t send that message as it relates to other stigmatized conditions, and long term, we think it only perpetuates the problem, institutionalizes the stigma, impedes progress, and puts the onus on preventing discrimination on the patient rather than on the profession. That is wrong. Regardless of what happens with Part 2 and HIPAA, what we feel strongest about is not wanting people to feel they have to hide anymore. We have to move beyond that.”