“You should be so proud of yourself,” Gary Laliberte whispered to his daughter Chelsea as they sat Wednesday evening in the gallery overlooking the House floor.
The House was debating a bill to establish a federal grant that would help fund state programs allowing pharmacists to more easily distribute medication proven to help prevent opioid-related deaths.
The bill is named Lali’s Law, after Chelsea’s brother, Alex Laliberte, who died in 2008 at age 20 after overdosing on a combination of heroin and prescription medication.
Chelsea founded the nonprofit Live4Lali in 2009 and pushed a similar bill through the Illinois legislature. The measure, helping expand over-the-counter access to naloxone, passed the House on Thursday, 415-4.
While it’s not certain that access to naloxone would have prevented Alex’s death, his family is championing the life-saving treatment as a way for other families to avoid the loss they have grappled with for years.
Finally, House Action on Opioids
“I just want to take that away from other parents,” said Jody Daitchman, Alex’s mother. She and Chelsea wore buttons with Alex’s picture.
The Laliberte family’s experience underscores the scope of the opioid epidemic in the United States. More people now die from abuse of pain killers and heroin than die for car accidents,
Jody held hands with Chelsea as they listened to the Lali’s Law sponsor, Rep. Robert J. Dold, R-Ill., deliver a floor speech about Alex’s life and his struggle with opioid addiction.
“As a father, I can’t even imagine the pain of losing a child,” Dold said, looking out toward his daughters, whom he had brought onto the House floor for the occasion.
A Hidden Addiction
The Laliberte family doesn’t know all the details of Alex’s drug addiction, but they learned more after his death through conversations with his friends and the police.
Alex used marijuana in high school, which led him to experiment with harder drugs.
“Watching my brother morph into this kind of person who he was not really was very hard,” Chelsea recalled. “It felt very lonely at times being his sister and seeing all these things and not really having much support and doing stuff about it.”
His parents say now they should have noticed more of the signs.
“We had our heads in the sand,” said his mother, Jody. “I knew that he was partaking in some things, but I thought it was OK because he got great grades, he had a job, he had a lot of friends. And then that kind of started changing a little bit… when he was at the end of high school and when he got into college.”
Alex developed a mysterious illness in college, eventually diagnosed as gastritis, that led to him being in and out of the hospital. Only later did his family learn that his digestive issues were related to his opiate abuse and withdrawal.
He suddenly came back home to Buffalo Grove, Ill., about a four-hour drive from his school, a few weeks before finals during his sophomore year at Western Illinois University.
“He said he was being accused of stealing things and people were after him,” Jody said. Delusions are a symptom of opioid abuse.
She noticed the physical symptoms too but still didn’t realize how serious the situation was.
“Even big change didn’t hit me in the face until actually I found him in our home dead,” Jody said.
“You feel like such a failure,” Gary said. “I used to go to wakes of people, kids, and callously just say, ‘Where were the parents?’ Now I’m one of them that didn’t think it was serious enough or know what to look for.”
A Life of Advocacy
When Dold referenced Live4Lali’s “amazing work” in helping get Lali’s Law passed in Illinois, Gary patted Chelsea on the shoulder to acknowledge the effort that led them to that moment, watching the House consider enacting a law named after their son and brother, was all hers.
“It’s unbelievable where we are today,” Gary said. He said he was amazed that Chelsea’s advocacy work led them to Washington and allowed them to meet Speaker Paul D. Ryan and stand up with him and House GOP leaders as they talked about the legislative effort to combat opioid abuse.
Lali’s Law is one of 18 opioid-related measures the House is considering this week. Other proposals would allow patients to only partially fill opioid prescriptions, require the Food and Drug Administration to work with expert advisory committees before approving opioid products and drug labels and expand residential treatment programs for pregnant and postpartum opioid addicts.
On Friday, the bills the House passes will be packaged and amended into the Senate-passed Comprehensive Addiction and Recovery Act (CARA) . The two chambers will then form a conference committee to work out their differences on the legislation.
Live4Lali started “as a glorified barbecue,” Gary said, explaining how a few weeks after Alex died, the family organized a fundraiser based around Frisbee golf, one of Alex’s hobbies.
They raised $6,000 in the first year to provide intramural sports scholarships to kids who couldn’t afford it.
Chelsea, who was 23 when her brother died and had organized most of the initial fundraisers, eventually quit her job and turned the nonprofit into a full-time advocacy organization seeking to prevent and raise awareness about substance abuse.
Live4Lali pushed Lali’s Law through the statehouse in Illinois, overcoming a gubernatorial veto. The organization enlisted Dold to push a similar measure at the federal level.
The House had been expected to pass the bill via voice vote Wednesday, but a roll call vote was ordered so final passage will not occur until Thursday. Dold said he expects the bill to pass with overwhelming support.
“This is all in honor of Alex,” he said.
[Related: Finally, House Action on Opioids]
Dold said 36 states and the District of Columbia already have standing orders to allow pharmacies to sell naloxone, sometimes referred to by its brand name Narcan, over the counter. Lali’s Law would provide up to $500,000 per state to ensure the remaining states follow suit.
“Oftentimes,” Dold said, “what happens is states right now, they say, ‘Listen, I’d love to be able to roll it out. We don’t have the resources to roll it out.’ We want to take away that excuse.”