‘OUR TOMMY DIED OF AN OPIOID OVERDOSE. WE’RE FAILING THE NEXT GENERATION’
Losing her son to addiction turned this mother into an advocate for people with substance abuse disorders.
I wasn’t expecting it. That day, I was
out with one of my grandkids when I received a call from an unknown number. At one point in time, I would have stopped everything to take that call. But I didn’t pick it up this time. Instead, I continued to enjoy my time with my grandchild.
That missed call turned out to be the police calling to notify me that Tommy was found dead in his bed at his recovery home.
Our Tommy died and there was nothing I could do to change it, no matter how much I wished I could. He died after using heroin that was laced with fentanyl. He passed away when he was 27 years old, on August 31, 2018. Sadly, and ironically, it was International Overdose Awareness Day.
A PAINFUL PATH TO ADDICTION
Tommy is not my biological son. Tommy came to live with us when he was 9, a few years after his dad, who was my husband’s cousin, died from an opioid overdose. We raised him as if he were our own child. I was his legal guardian. We didn’t talk about why Tommy’s dad died as a family, which I later learned was a mistake. At the time, I didn’t understand addiction like I do now. Back then people didn’t talk about this stuff. I didn’t know that the brain is hijacked by a substance that makes it really hard to stop using or that there is a genetic component to addiction. I didn’t understand a lot about addiction until I watched it play out with Tommy right in front of my eyes.
Before Tommy’s journey, I thought addiction was a choice—i can tell you it’s definitely not.
Like many, Tommy’s addiction to opioids started with pain medication. When Tommy was younger, he was very active. He was adventurous and fearless. He rode motorcycles, ATVS and dirt bikes. He also played football. He loved to use our camcorder to make daredevil videos.
Being the daring prankster he was, he also came with many injuries that resulted in many prescriptions for pain medication. It was a different time then. People were often prescribed opioids as a result of minor injuries or dental work.
The last prescription I remember Tommy getting was when he was 18 years old, and he had a bad motorcycle accident. He ended up in the burn unit for about a week. Tommy was able to mask his addiction for a while because he was very functional. Even at the height of his addiction, he was a hard worker and went to work almost every day.
When Tommy’s prescriptions ran out, he started to buy pills off of the street. Eventually, the pills on the street became less available and more expensive. By the time Tommy was 20 he made the switch to heroin. It was absolutely terrifying to witness.
RECOVERY PROVES ELUSIVE
I did not know where to go for help. In the years following, I spent my time learning as much as I could about addiction to try and help Tommy the best that I could. It was during those years that I found the Partnership to End Addiction and the resources and support they offer.
As I became stronger, I started to advocate for other families that were caring for loved ones living with a substance use disorder in the hopes that no one would ever have to feel as alone and afraid as I did.
During this time, Tommy was also trying his hardest to enjoy a life in recovery. He had some setbacks and his substance use led him to some legal issues. At one point Tommy was in jail for a probation violation and a few months before he died, he was released to the street. He called me and I picked him up, and he moved back home with us.
Tommy said that he didn’t want to use heroin anymore, but I knew that being newly released he was about 48 times more likely to die from an overdose. I had Narcan—an overdose reversal drug—at home and was prepared for the worst.
While Tommy was living back home with me, we had a lot of fun together. We ate at restaurants often and he helped me create some of my presentations at work. He also did some advocating with me. I ended every call with him, “be safe, I love
you,” just in case it was our last.
In June 2018, Tommy decided to move to a recovery home in Pittsburgh, about five hours away from home. He thought he would have a better chance of maintaining recovery in a different area. We were far away and the recovery home looked like a great place, but I only checked it out online.
I never even asked if they had Narcan. I assumed they would— being a recovery home and all. I didn’t know anything about the location either. It turned out to be in a bad area of Pittsburgh known for the amount of drugs.
While he was living there, Tommy often called to tell me how beautiful the city was. He loved to walk along the river and would describe in detail the skyline. He loved the Steelers and was thrilled to be so close to their stadium.
A week before Tommy died, I visited him. We talked about some concerns I had about the area. In the past, Tommy had to be revived from overdoses with Narcan. He joked with me that he never really thought he would die. I told him how serious this was and how worried I was. I offered to help him look at a different place to live, but he said he was doing great in that recovery home and made friends. He wanted to stay.
The night before his fatal overdose, Tommy attended a support group meeting and told me about a new job he’d just landed. He was so excited. Tommy had no intention of dying. He very much wanted to live. He loved life. He loved his kids. He loved his nieces and nephews and his siblings. He was an amazing father and awesome uncle. He really wanted to be here to see the kids grow up.
The next day, Tommy had his final setback. In the end, he died alone in a private room on a private floor in his bed at a recovery home that had no Narcan. None of which should have ever happened. ‘I AM TERRIFIED OF WHAT IS OUT THERE’ As a grandmother, I am terrified of what is out there on the streets now. Through the years I have met a lot of families that are impacted by addiction and a lot of families that have lost loved ones.
It seems as if lately the kids that are dying are younger and younger. Some are just experimenting with substances for the first time and trying things that happen to be laced with fentanyl.
We also now have xylazine to worry about—a veterinary tranquilizer known as “tranq” that is infiltrating the drug supply and can be deadly. It seems like every day I learn of a new emerging threat.
I have watched the effects of the opioid epidemic on the last three generations of my family, and I feel that more could be done to end this public health crisis. It saddens me that we are not doing everything possible to save lives.
I am watching now as we continue to fail the next generation, including all the children that are left behind, affected by a parent’s active use, incarceration or overdose death.
As a whole, we’re doing a poor job communicating to the caregivers of these kids, who are growing up not only with the trauma of what’s happened in their lives, but also the genetic component of addiction.
It’s tragic that after all these years, the addiction crisis remains unaddressed. Do we have to wait until yet another generation gets wiped out before we take this seriously?
“BEFORE TOMMY’S JOURNEY, I THOUGHT ADDICTION WAS A CHOICE—I CAN TELL YOU IT’S DEFINITELY NOT.”
suggesting the number for acute pain patients is lower. By contrast, the U.S.’ opioid addiction and overdose problem is massive—and almost entirely driven by illicit use of fentanyl smuggled into the country. Studies indicate that four out of five people addicted to opioids never had a prescription for them; they started with illicit use, and continued on. Medicine and government is failing these users, too, say experts, by making it far too difficult to access treatments that have been proven effective in reducing overdose risks and making it easier to get off of opioids.
The three most effective treatments are methadone, buprenorphine and naltrexone, all FDA approved, and all of which are essentially slower-acting, milder opioids that fend of withdrawal symptoms and cravings, without providing the strong high that can intensify addiction and interfere with other aspects of living. They cut the risks of overdose by as much as half. “They’re good medications that can lead to dependence but not addiction,” says Kelly. “They’re like wearing nicotine patches to reduce tobacco cravings.”
People with opioid addictions are much more likely to beat their addictions and get off the drugs if they have access to addiction treatments, notes Bohnert. “There is evidence that the way the drugs are tapered can make a big difference. Slower is better, and so is adding in treatments and support.”
But more than four out of five people addicted to opioids aren’t receiving these treatments, according to a 2019 study published by the National Academy of Medicine. One reason is that federal law requires doctors to get special permission to prescribe buprenorphine and similar drugs, and face close monitoring when they do; in the current climate of fear about giving drugs to chronic users most doctors don’t want to take the trouble or face the risk. For many of these patients, it is easier to get illegal fentanyl than a prescribed treatment drug.
Biden has promised to ease these laws and increase funding for treatment, and several federal laws have been proposed to support treatment access, including the bipartisan Modernizing Opioid Treatment Access Act now before the Senate and House. But so far there has been little to show for it, contends Nicholson. “The policy environment may be slowly changing, but it isn’t filtering down to the lives of patients,” she says, adding that health care is primarily regulated by the states, and most lag far behind in fixing the problems.
In addition to making it easier for clinicians to
My life was going great until my doctor retired last year. I’ve been sick with idiopathic gastroparesis, a rare condition, for 20 years and a responsible opiate taker for 15. I never dreamed that one person would be the difference between “living” and “existing.” I could pretty much do whatever I felt up to doing: Walking, spending time with friends, going shopping, etc. Now, I spend 94 percent of my time in bed. I’ve had to start four new medications, increase two others, increase an internal device’s settings, and start mental health counseling all because of this taper. I’m just devastated. Honestly, it makes me want to give up. Patients don’t ask for these conditions. So, what are we to do? Just rot in our beds and pray that day is our last?
LINDA ANDERSON
prescribe opioid addiction treatment drugs, state and federal policymakers can take other steps. For one, they could require more clinicians to get special training in preventing and managing opioid addiction, says Brian Hurley, president of the American Society of Addiction Medicine and an addiction physician. States could also enable Medicare and Medicaid payment for addiction treatment and ensure that incarcerated individuals are given more options for addiction treatment. “Restricting access to these tools is a threat to public health,” says Hurley. “There’s even a cost argument to be made, because while these programs can be expensive, they cost a lot less than a stay in intensive care for an overdose victim.”
Treatment options could also be made easier to get. Making the overdose reversal drug naloxone freely available in vending machines in “hotspot” drug-misuse communities would increase the number of people who can get this treatment, says Shravani Durbhakula, a physician who heads pain education at Johns Hopkins Medical School and communications at the American Academy of Pain Medicine. So would placing clinicians who can prescribe treatment drugs at needle-exchange programs and setting up more mobile treatment clinics. The Food and Drug Administration could also more quickly bring new opioid treatments and alternatives to the market. “We need to lower the threshold for bringing help to people who need it,” says Durbhakula.
Meanwhile, the overdose deaths and addiction misery continue to climb. “We need a new national strategy for treating, preventing and educating about addiction and pain,” says Humphreys.
The question now is how many people will needlessly suffer or die before we get there.