The Maine Department of Health and Human Services is prohibiting the release of statistics compiled by a researcher that show how many people had contact with a doctor soon before dying of drug overdoses in 2016, a year that set a third consecutive all-time record for overdose deaths.
The information, which would not identify individuals, could help improve the way doctors care for people with addiction or influence public policy, but the department has declined to allow the researcher and family physician, Dr. David Loxterkamp, or the BDN to publicize it.
The data cannot be automatically released because it is property of the state’s prescription monitoring program, which is overseen by DHHS. The program tracks prescriptions for medications with potential for abuse or addiction, such as oxycodone or codeine.
Even aggregate data derived from the prescription monitoring program doesn’t necessarily qualify as a public record as most other government records do. Disclosure of prescription monitoring information is a Class C crime, punishable by up to five years in prison.
However, there is an exception. The law states that DHHS may allow prescription monitoring information to be disseminated for “public research, policy or education purposes as long as all information reasonably likely to reveal the patient … has been removed.”
Loxterkamp, who is co-medical director of the Seaport Community Health Center Recovery Program in Belfast, compiled the data by examining various records of 338 of the 376 drug overdose deaths in 2016 at the state’s Office of Chief Medical Examiner, which falls under the direction of the attorney general’s office and which provided him with access to the records.
Of the 376 total drug overdose deaths in 2016, 330 were accidents, 38 were suicides, and eight were not determined. Loxterkamp examined the records for all of the deaths except for the 38 suicides.
Loxterkamp then asked DHHS on July 17 for permission to publish the findings from a portion of the information he had collected, which had originated with the prescription monitoring program, as he was writing an article on overdose deaths for a medical journal.
“I will use no identifying information, only aggregate data,” he wrote in an email.
On July 20, former DHHS spokesperson Samantha Edwards replied that the findings from his data collection could not be released. The prescription monitoring program data “is confidential information and is not to be disseminated. It is for this reason that I would say no,” she wrote.
A couple weeks later, on Aug. 7, the BDN asked Edwards if it could publish Loxterkamp’s results, citing the statute that allows DHHS to share such findings. Upon request, the BDN also shared with Edwards the dataset, which does not contain names, dates of birth or the addresses where deaths took place.
On Aug. 15, Edwards wrote that DHHS “cannot consent” to the publication of the findings derived from the data because the data were not compiled with the prior authorization of the department.
“More significantly, even assuming the information is accurate, the information appears to be identifiable information,” she wrote.
The BDN asked Edwards for clarification since neither Loxterkamp nor the BDN intended to publish the data wholesale, just the overall statistics derived from it.
In addition, the dataset does not contain details about individuals. It includes the county and month in which the person died, the relationship between the deceased person and the person who found him or her, and if or when the deceased person was last prescribed a drug that is prone to abuse.
Edwards did not respond.
The ability to analyze and publish de-identified data from the prescription monitoring program should not be an exception to the law; it should be the norm, Loxterkamp said.
“In the midst of an escalating opioid overdose epidemic, we must use every tool at our disposal to save lives,” he said.
The BDN is not publishing the aggregate findings to remain within the bounds of the statute and on the advice of the BDN’s attorney.
“It strikes me as legally unfathomable that at a time when Maine is experiencing a growing and deadly opiate epidemic, state agencies and departments are apparently reluctant to facilitate the release of research data that could lead to improved physician treatment and patient outcomes and reduce the carnage,” said the BDN’s attorney, Bernard Kubetz with Eaton Peabody.
“This is not a situation where legitimately protectable personal or confidential information — such as the names or identifying information about patients or doctors — would be exposed.”
Some of the statistics Loxterkamp compiled are overseen by the medical examiner, not DHHS, and are public. They reveal that 82 percent of the 338 people who died of non-suicide-related drug overdoses last year died alone. That fact indicates the limits of naloxone, which is administered by someone present to reverse an opioid overdose.
Loxterkamp said the figure likely skews high, since overdose death witnesses sometimes do not report their presence to the authorities for fear of being arrested or implicated in the death.
In addition, 89 percent of the deaths occurred in a private location such as a house, and most victims were discovered by a family member, close friend or significant other after they died.
The vast majority — 84 percent — of all overdose deaths in 2016 were caused by at least one opioid, such as heroin, fentanyl or a prescription medication. The remainder were caused by drugs such as cocaine or methamphetamine.
The fact that most people died alone in private quarters, and that they were found by friends or family, suggests a need to adapt the way organizations in the state currently distribute naloxone, commonly known by the brand name Narcan, Loxterkamp said. There are typically just minutes between when a person stops breathing due to an overdose and when they die.
“Given the narrowness of the window for Narcan to work, it really has to be in the hands of people who live with those who are addicted or who are around them a lot,” Loxterkamp said.
There are regional efforts, but no state strategy or funding currently exists to distribute and provide training to family and friends on administering Narcan. Attorney General Janet Mills distributes Narcan to Maine police departments free of charge, but the program does not extend to the public.
This year Gov. Paul LePage resisted making Narcan available at pharmacies without a prescription, and he proposed forcing communities to charge people who overdose more than once and are saved with Narcan. He successfully vetoed a “good Samaritan” bill that would have allowed people to seek help for drug overdose victims without fear of being arrested themselves. Last year LePage vetoed a bill to allow the attorney general to buy Narcan in bulk to distribute to first responders; the Legislature overrode the veto.
“The fact that through the Maine Department of Health and Human Services there hasn’t been any community-based distribution is certainly troubling and speaks to the lack of response among DHHS generally to the entire epidemic,” said Ross Hicks, harm reduction coordinator for the Health Equity Alliance based in Bangor.
Compared with the 376 overdose deaths, 160 people died in car crashes in Maine last year.
One way providers can respond to the opioid crisis is to become trained to provide medication-assisted treatment, which combines drugs such as Suboxone with counseling, Loxterkamp said. Yet fewer than 12 percent of Maine’s health care providers who could prescribe the medication have the required waiver to do so, according to federal data released in June.
“It’s hard to be optimistic about the future of this overdose epidemic,” said Loxterkamp. “A lot of people are still going to die.”
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to firstname.lastname@example.org.