A decades-old provision designed to protect the privacy of patients with drug and alcohol addictions is hampering efforts to coordinate their care and potentially putting those patients at risk. But the considerable stigma around substance use disorders has many in the recovery community worried about lifting that protection.
That has led to a fierce debate as Congress attempts to address the opioid overdose epidemic. Proponents of changing the provision say health care privacy laws are sufficient to protect patients’ health information and that doctors are forced to make treatment decisions based on an incomplete picture. Critics warn that eliminating the current protections would discourage people with addictions from seeking help.
“I’ve passionately argued both sides of this,” said Rick Treleaven, executive director of Best Care Treatment Services in Redmond. “With any social reform, the hardest part is managing unintended consequences.”
The statute was established more than 40 years ago to prevent drug and alcohol treatment providers from disclosing treatment information without the express consent of the patient.
When broader health information privacy laws were passed in 1997, it created a dual system for protecting patient records. Even within the same clinic, primary care providers can’t always see their patients’ substance abuse treatment records. That raises the possibility they can make inappropriate treatment decisions, leaving patients at risk for major problems.
“It’s hugely problematic for us,” said James Wilson, quality and data manager for Clackamas Health Centers. “We unquestionably find ourselves in the complicated situations of the people in our behavioral health services not being able to effectively communicate with the people in our primary care and dental services.”
The federally qualified health clinic provides primary care, dental and behavioral health services, and has had multiple cases of patients with addictions being prescribed opioids by primary care doctors or dentists who had no idea patients were also in substance use treatment.
“The dentist is now in a place where totally unknowingly they are dangling the addictive substance that this person is struggling with in front of them,” Wilson said. “And now, it leaves it up to the person, they can either disclose to the dentist, ‘I struggle with addiction to opiates and no, please don’t prescribe that to me,’ or not. And what a difficult place for them.”
Wilson lives in fear that a patient being treated with the addiction medication Vivitrol, which blocks the effects of opioids, ends up in a car accident and is unable to communicate. That patient could be taken into surgery and given painkillers that would have no effect.
“What a nightmare,” Wilson said. “To overcome that, we literally suggest that people wear bracelets. In today’s day and age, that’s just not the way to be doing it.”
Some electronic health records have what’s called a break-the-glass provision in case of emergency. That allows doctors in the emergency room, for example, to access substance abuse treatment records in emergency situations without the patient’s consent. That functionality signals to doctors reading the record in other situations that a patient has some protected substance use records available.
“Substance use is the only condition for which, from a compliance standpoint, we need providers to break the glass,” said Kim Swanson, director of behavioral health with Mosaic Medical. “In essence, that’s labeling that population as a substance use population whether or not we are breaking the glass.”
Some medical records might provide other hints a patient is in addiction treatment, such a list of the medications that patient is taking. Experts say that can leave doctors guessing at the full picture.
“You’re only getting bits and pieces of it, and you’ve got to extrapolate it out,” said Jennifer Stoll, vice president of government relations and public affairs for OCHIN, a nonprofit that helps hospitals and clinics implement electronic health records. “In order to effectively treat the patient, you need to allow patient sharing information, not just using a patchwork of information that’s in there.”
The rule has been interpreted differently by different organizations, making sharing health care data a nightmare. Different hospitals and clinics have adopted different ways of protecting substance use information in their electronic health records. Some small clinics have even resorted to keeping paper records for their substance abuse patients to prevent any unlawful disclosures.
“We have worked to find work-arounds, but they are not very efficient and not consistent,” said Janice Garceau, program manager for outpatient services at Deschutes County Behavioral Health. “So we are concerned that at times, a medical provider may not be able to see what they need to see.”
Other providers argue that while the provision was well-intended, the law may be adding to the stigma around addictions.
“It’s almost as if it’s taboo; it’s shameful. We can’t talk about it,” said Dr. Michael Franz, medical director of behavioral health at PacificSource Health Plans. “That perpetuates the stigma of people suffering from substance use disorders.”
Franz says it also interferes with good medical care. Many substance use disorders exacerbate conditions such as diabetes, heart disease or lung problems.
“If we ignore that a substance use disorder is the fuel fanning the flames of the underlying medical conditions, we’re not actually treating their other medical conditions, as well,” he said.
While clinics generally have a way for patients to authorize the release of their substance use treatment records to other providers, it adds to the paperwork burden and sometimes things fall through the cracks.
“It may sound simple, but in clinical practice … that’s a barrier,” Franz said. “Things get lost on the fax machine, or it’s sitting on someone’s desk for two weeks.”
Patients may sign a release at one clinic that another clinic could find insufficient. Franz says that’s bled over into other treatment areas, where providers treating anxiety or depression still believe they need additional permission to share that information.
Still, many addiction treatment providers worry how people will be treated if health providers know about their substance use history.
“There is still considerable stigma for people with substance use disorders and very little education among physicians about substance use disorders,” Treleaven said. “Given the level of ignorance and general bigotry that exists in the medical community, I would have a hard time telling a client to go tell your doctors everything. This goes in your medical record, and it stays there.”
Earlier this year, the House of Representatives passed measures that would address the restrictions as part of its opioid package. Those measures would align protections for addiction treatment with privacy protections for other types of health care information, and strengthen the penalties for inappropriate disclosures. The bill stipulated that treatment information could only be used for health care purposes.
“We were trying to make the point — this isn’t about housing; this isn’t about your employment; this is about treatment,” Rep. Greg Walden, R-Hood River said in a roundtable with medical providers in Bend earlier in the summer.
The Senate is due to consider its own opioids legislation in September, and that measure will need to be reconciled with the House version. Many provider groups are actively lobbying to have the fix for substance abuse treatment records included in the final version of that legislation.
“This will be one of the most controversial provisions within the Senate,” Walden predicted.
— Reporter: 541-633-2162, email@example.com