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Personal information requirement for drug could hamper opioid crisis effort

Naloxone, available in Arizona without a prescription as an injection or nasal spray, reverses opioid overdoses. The state requires pharmacies to report the names, addresses and dates of birth of people who pick it up to an Arizona Department of Health Services' database. (Photo by Rachel Leingang, Arizona Capitol Times)

Naloxone, available in Arizona without a prescription as an injection or nasal spray, reverses opioid overdoses. The state requires pharmacies to report the names, addresses and dates of birth of people who pick it up to an Arizona Department of Health Services’ database. (Photo by Rachel Leingang, Arizona Capitol Times)

Gov. Doug Ducey’s requirement that people give their personal information to a state database when they pick up a life-saving drug for opioid overdoses at a pharmacy may actually jeopardize lives, say those who help people with drug addiction recover.

The drug, naloxone, saved 28-year-old John Koch’s life three times.

“It’s saving lives left and right,” he said.

Naloxone reverses the effects of overdoses from opioids like heroin or prescription painkillers. It’s available as an injection and nasal spray and commonly referred to by its brand name, Narcan.

Koch moved in and out of prison and jail dozens of times while he used opioids for more than a decade. His family eventually cut ties with him after watching him overdose multiple times, including once in his parents’ basement over Thanksgiving weekend.

“My mom just ran out of tears. My dad ran out of anger,” Koch said.

Koch, now a peer specialist at Community Medical Services, a statewide addiction and treatment center, has been in recovery since 2013. He said he’s proof people can change.

And he thinks everyone should have the opportunity to access life-saving treatments like naloxone without any barriers. He now keeps naloxone on hand, and so do his family members.

But some groups that work with people who have opioid addiction say requiring a name, address and date of birth could deter people from trying to get naloxone.

The stigma surrounding drug addiction and illegal drug use, criminal histories, and the fear for parents of getting their children in trouble might make people who need naloxone wary of putting their names into a government database.

And while the state requires personal information for pharmacy purchases of naloxone, a nonprofit, which buys the drug with state money, distributes thousands of doses without obtaining personal information, meaning data the state uses for tracking the opioid epidemic is incomplete.

In a June executive order, Ducey declared a statewide health emergency because of increasing opioid overdose deaths. A state Department of Health Services report showed deaths rose from 454 in 2012 to 790 in 2016, or 74 percent.

A week later, the governor issued an executive order calling for new reporting requirements on opioids designed to better track the drugs’ effects statewide.

The Arizona Department of Health Services tracks data weekly and reports the numbers of suspected overdoses, naloxone doses dispensed by pharmacies and used by first responders, and suspected overdose deaths.

Nearly 1,500 suspected overdoses occurred statewide since mid-June, according to the Health Department’s reports.

One of the new requirements asks pharmacies to report on the naloxone doses they sell, including the names, addresses and dates of birth of those who pick it up. It’s now possible to get naloxone without a prescription because of a 2016 law sponsored by Rep. Heather Carter, R-Cave Creek.

Since mid-June, nearly 1,400 naloxone doses have been dispensed at pharmacies across the state, according to the Health Department’s data.

But, despite the 2016 law allowing over-the-counter sales, naloxone may not be as easily accessible as officials hoped.

On August 11, the Arizona Capitol Times tried to purchase naloxone to see how the process works. Two major pharmacies near downtown Phoenix did not have any available in any form. One pharmacy had one dose of the nasal spray available, at a price of nearly $150. The injectable form of the drug is much cheaper, typically less than $50. At one pharmacy, the technician said one form of opioid antagonist cost $4,000.

Emily Jenkins, president of the Arizona Council of Human Service Providers, said the over-the-counter access and reporting requirements are both still new, so it’s unknown whether having to provide names and addresses is keeping people away from naloxone.

“This may have a chilling effect because people may not want their names in a database,” Jenkins said.

Plus, there’s still a stigma around opioid use, Jenkins said. Families who want to have naloxone on hand in case of emergencies may worry that giving their names and addresses could put them in legal jeopardy, since using illegal drugs is still, of course, illegal, she said.

“Would a mother think, well if I get this, is somebody going to come and investigative my family or my teenagers? … I think that’s enough for people to not take that risk,” Jenkins said.

And it hasn’t been clearly communicated why the data is needed, she said.

“These requirements were published two days before they went into effect,” Jenkins said. “We had no opportunity to comment. I would really appreciate it if the Health Department and the Governor’s Office would really ask themselves, what do they really need in order to track these efforts? Do they really need the name for that?” Jenkins said.

Perhaps the state could collect zip codes and ages, but keep names and addresses out of the equation, she said.

Koch said he’s lucky his family lived so close to a fire department unit, giving him quick access to first responders. Naloxone wasn’t as readily available then as it is now, he said.

But asking people to put their names and addresses into a government database doesn’t help, he said. Many people who use opioids have had trouble with the law and are uneasy with authority figures. And there is always the possibility someone doesn’t have an address.

“It will divert moms and dads from helping their child,” he said.

Ducey spokesman Patrick Ptak said the additional reporting requirements, including the names and addresses, aims to identify where additional resources may be needed to address the opioid epidemic

The data collected by the Health Department will be used to map where naloxone is dispensed and help the state and community organizations identify where more naloxone kits could be needed, Ptak said.

“The bottom line is this: ADHS’s resources, which include actual naloxone kits for distribution, are limited. By collecting and analyzing the data about where and through which medium naloxone is being dispensed, ADHS can best leverage its resources and that of the community to be as effective as possible at saving lives,” Ptak said in an email.

The personal information was already required for people to give if they picked up naloxone at the pharmacy, Ptak noted, though the governor’s order added the requirement for the Health Department to create a database of this information.

The same information is required, if it’s available, for all prescription orders, according to Elizabeth Dodge, deputy director of the Arizona State Board of Pharmacy. Additionally, a naloxone purchase won’t show up in a person’s profile in the prescription monitoring program, so other pharmacists and prescribers cannot see previous orders of it, Dodge said.

The data could also help community organizations or law enforcement identify where to use their resources because the addresses could give insight into where the need is, Ptak said.

The Governor’s Office and the Department of Health Services haven’t heard any concerns about the data collection, but they are sensitive to security and privacy, Ptak said.

“Any information that might be used to personally identify an individual that’s received by the department is kept confidential,” Ptak said.

The Ducey administration treats the opioid epidemic as a public health emergency, and the efforts to track and address it stem from that perspective, Ptak said. The scope of the crisis requires a robust response, which is why the surveillance is robust as well, he said.

“We’ve done everything we can to make this about saving lives — to not make this about arresting people, but to do what we can to give people a second chance at life,” he said.

Lee Pioske, the director of Crossroads, which runs six residential treatment centers around the Valley, served on Ducey’s substance abuse task force. He said the governor’s thinking — to collect better data and report it faster — is well intended.

But, Pioske said, there’s a “reasonable question” as to whether requiring names and addresses will actually prevent people from picking up naloxone at a pharmacy. He said that, from his experience working with people who use illegal substances, he believes the reporting requirements will affect access, though it’s not clear how much.

“If I was dictator of the world, I would be on street corners handing it out. … I’d just be out there giving it away, and I wouldn’t be taking names,” Pioske said.

In many respects, Arizona’s policies designed to fight the opioid epidemic are ahead of other states, Pioske said, with the statewide emergency declaration and real-time reporting on overdoses. The governor has also instituted a pilot program in prisons to allow people upon reentry to use Vivitrol, a drug that blocks the effects of highs.

But, as far as the naloxone reporting requirements, “only time will tell whether things like this will be good or bad,” Pioske said.

It’s still unclear what the ultimate effect of the reporting requirements may be, considering the nascent rules for pharmacies. And pharmacies aren’t the only, or even the major, route people take to get naloxone.

Much of the naloxone used throughout the state comes from first responders or community organizations that distribute doses for free. The Health Department reports nearly 1,200 naloxone doses were administered by paramedics or law enforcement since mid-June.

But the Health Department data tracking will likely be an incomplete picture of naloxone’s use statewide.

Haley Coles, director of Sonoran Prevention Works, said her nonprofit group has given out more than 11,000 naloxone kits since September 2016.

Sonoran Prevention Works has a $500,000 annual contract with the Arizona Health Care Cost Containment System to distribute naloxone kits and educate the community on the drug, according to AHCCCS spokeswoman Heidi Capriotti. The group purchases naloxone directly from the manufacturer.

Capriotti said the naloxone given out through the contract isn’t tracked because it’s distributed at the “street-level” so it isn’t feasible to track.

“Part of the reason this distribution is working is because it’s non-judgmental and no questions are asked,” Capriotti said in an email.

They know at least 1,000 of those have been used, though it’s likely much more, Coles said. The group doesn’t collect any personal information from people, so it’s hard to follow up and know if the doses are used, she said.

The point is to get the life-saving drug out as widely and quickly as possible, she said.

The vulnerable population her group serves, like people who are homeless or low income, isn’t the same population that would access naloxone through pharmacies, she said, so it’s hard to know if people are concerned about the reporting requirements.

Arizona has worked hard to expand access to naloxone in the past year, including making it available without a prescription, Coles said.

For Koch, access to naloxone is obviously personal. Now that he’s in recovery, he has repaired his relationships with his family. When the 2016 law for naloxone without a prescription came up, he testified in favor of it, reading a letter from his father that detailed Koch’s journey through addiction and how naloxone kept him alive.

“Narcan saves lives. My son is proof,” the letter said.

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