Getting a handle on the depth of Illinois' heroin problem is a challenge.
The state department of public health acknowledges its own records from before 2008 are "virtually meaningless" because of limits in data tracking and inconsistencies in how causes of death are listed. Numbers now are better, but they are still incomplete because not all coroners test for heroin.
Despite these flawed statewide statistics, experts say local numbers show heroin overdoses aren't decreasing.
"We haven't seen the spike reach its ebb yet," said Mark Piccoli, director of DuPage Metropolitan Enforcement Group, a regional drug task force with undercover agents who work to cut off the drug's flow to the suburbs from the supply side. "For us, it's still our main focus as far as drug enforcement."
Heroin death data, however tricky to pinpoint, is going to get better in the coming months and years, say advocates for the Heroin Crisis Act enacted in September.
The law creates two requirements that supporters say will lead to a more reliable record of who is overdosing on and dying from heroin. The requirements became effective immediately upon the act's passage, but the state health department is still developing rules and procedures for collecting the information.
• Hospitals must report all overdoses -- fatal or not -- and which drug caused them to the state within 48 hours of treating the patient.
• Coroners likewise must tell the state what drug caused each overdose death -- whenever it can be determined.
These records must be posted online, including the location and age of the patient or deceased without identification or names. Anti-heroin advocates say this is a win. Better numbers can only help the state determine the scope of the problem and how to fight it.
"If that data is actually reported by all the hospitals in compliance with the law, then we will have very good real-time data across our state to see just how bad it is in all 102 counties," said John Roberts, co-founder of Heroin Epidemic Relief Organization, who pushed for hospitals to track the overdose patients they see. "And I think that will be huge for Illinois."
Implementing these data-tracking changes and other measures in the Heroin Crisis Act poses a new challenge to coroners, emergency room staffers and others active in a multidimensional fight against the deadly opiate.
"Everyone who's involved in this issue in some way, fashion or form, will have to work together if this is going to give us the kinds of reduction in heroin addiction and heroin death that we've been looking for," said state Rep. Lou Lang, a Skokie Democrat and chief sponsor of the Heroin Crisis Act. "Whether it's state agencies, local law enforcement, coroners, insurance companies, doctors -- they all have a part to play in making this work."
In addition to improvements in tracking heroin death and overdose data, upcoming changes should expand access to overdose reversal drugs and increase coverage of addiction recovery programs.
"It needs to happen in a comprehensive way," said Chelsea Laliberte, who founded the anti-heroin nonprofit Live4Lali in Arlington Heights after losing her brother, Alex, to a heroin overdose in 2008. "We need the ability to work collaboratively to reform all of this."
Capturing death data
From Jan. 1 through mid-December 2015, 458 people died of confirmed heroin overdoses in Cook, DuPage, Kane, Lake, McHenry and Will counties. Of those deaths, 163 occurred in the suburban counties and the Northwest suburbs of Cook County.
Coroners here carefully track those numbers, running toxicology tests that take weeks to complete and keeping precise spreadsheets all year because they know heroin is a continuing concern. But the suburbs aren't necessarily reflective of the rest of the state, where Illinois Department of Public Health spokeswoman Melaney Arnold said not all coroners test for heroin. That's why even though statistics on heroin deaths increased in validity in 2008 -- when the electronic records system gained the ability to capture more coded data from coroner reports -- the numbers still aren't all-inclusive.
Arnold said Cook County began testing for heroin and specifying which deaths were caused by the drug in 2013. That contributed to a doubling of recorded heroin deaths statewide, from 266 to 538 in 2012-13. Any coroners who aren't yet testing for heroin will have to start under the new law, once rules are in place to govern the new data requirements. Reporting will begin likely in several months to a year, once the state health department drafts rules, gains input from relevant advisory boards, has the rules approved by the Joint Committee on Administrative Rules and adopts them.
"It is anticipated with the implementation of the new law, more of this information will be captured," Arnold said.
Even without complete statistics, the high number of reported heroin deaths -- 681 statewide in 2014 -- continues to prompt actions on multiple fronts. Prevention experts say the first step in decreasing the death toll is saving people who are overdosing. The Heroin Crisis Act aims to make that easier by expanding access to Narcan, Evzio or naloxone -- opioid antidotes that reverse an overdose by allowing the user to breathe again. The law allows antidotes to be available at pharmacies that want to carry them and in schools where nurses want to stock them. But don't expect Narcan to be immediately at the corner store; working through retail, pharmaceutical and insurance processes to begin distribution is expected to be a lengthy process.
"This is going to take some time," Lang said.
Treatment providers such as Gateway Foundation, which has locations in Aurora and Lake Villa, also are providing overdose reversal drugs to clients upon discharge.
"As much as we want to support recovery and not having a client relapse, we also want families to be prepared, should that happen, to save their loved one's life," said Jim Scarpace, executive director of Gateway Aurora.
Overdose reversal drugs solve the immediate problem, but improving access to longer-term care is a critical next step because Illinois has "very limited treatment" options, Laliberte said. Treatment slots decreased more during a five-year span in Illinois than in any other state, according to a study released in August by the Illinois Consortium on Drug Policy at Roosevelt University. State funding for treatment fell 30 percent in that time, dropping from $111 million in 2007 to $79 million in 2012.
But since the Heroin Crisis Act was approved Sept. 9, Medicaid must cover substance abuse treatment for recipients who can't afford insurance. Private health plans offered in the state also must cover substance abuse and mental illness treatment with no more restrictive limits and no additional costs than other health care.
"It was difficult to get insurers to negotiate the portion that implies they comply with mental health parity laws, because obviously there's a strong relationship between drug addiction and mental illness," Lang said. "That will happen, but it's something I'll keep looking at."
With better access to treatment in the long term, Laliberte says more heroin users will have a better chance of entering recovery. Without it overdose deaths could continue to increase.
"We are not taking care of people," she said.