Editor’s Note: Kate O’Neill, who has an MFA in creative writing and lives in Philadelphia, is the oldest sister of Madelyn Linsenmeir. The obituary she wrote for Maddie, published in Seven Days last month, became a virally shared article. The opinions expressed in this commentary are solely those of the author.
Time is behaving strangely these days. I’m told that is one of the side effects of grief – days muddled by sadness and pierced by moments so unbearable they bring me literally to my knees, general confusion over what time it is, when to eat or sleep. But I’m always aware of how long it has been since my sister, Madelyn Ellen Linsenmeir, died. As I write this, I’ve lived 39 days in a world that doesn’t include the beautiful girl who wanted to star in Broadway musicals and had a voice that made you believe it was possible. I know it’s been nearly a month since the obituary I wrote for her was read and shared by people around the world. It was 14 years ago that my sister took a pill at a party and loved the way it made her feel, and 12 years since she started injecting heroin to satisfy the addiction that blossomed from that one pill.
That pill was OxyContin, the brand name of a sustained-release formulation of the opiate-based painkiller oxycodone. While my sister tried it recreationally as a teenager, more than 14 million prescriptions for OxyContin were written in 2001 and 2002 alone, often by doctors who had been falsely led to believe it was less addictive than other painkillers.
By the time my sister tried OxyContin in 2004, it was one of the most commonly abused prescription opioids in the US. Purdue Frederick Company, an affiliate of Purdue Pharma, the drug manufacturer that first produced OxyContin, eventually pleaded guilty to a felony charge of misleadingly advertising the drug but was still allowed to sell it.
By 2017, the overall opioid prescribing rate in the US was more than 58 prescriptions per 100 people, with enough opioid prescriptions in 16% of US counties for every single person to have one.
If those pills were seeds, the fruit they bore was a bounty crop: more than 2 million people are addicted to opioids, and countless more are directly or indirectly affected by the disease. I may not be able to keep track of the days or hours right now, but I know it is time to hold accountable the politicians who have stood by and allowed this crisis to take place.
We call it the Opioid Epidemic, but that useless phrase doesn’t describe what is happening to actual human beings in communities across our country. It should be called the My Beautiful Little Sister Lost Custody of Her Son, Stole From and Conned People, Was Raped and Burned With Cigarettes, Tried to Commit Suicide, Had Sex for Drugs and Money, Went to Jail, Was Homeless, and Ultimately Lost Everything Including Her Own Life Epidemic. Or the Thousands and Thousands of People Are Dying While Drug Companies Make Billions and Spend Billions on Lobbyists to Protect Their Interests Epidemic. Or the System Is Failing People Who Are Dying a Slow, Extremely Miserable Death in Spite of the Fact That There Are Actual, Science-Based Solutions Epidemic.
Because there are, in fact, solutions. From evidence-based treatment to harm reduction, there are solutions that might have saved not only my sister but the 70,000 people the CDC estimates died from drug overdoses in 2017 alone.
A year ago, President Donald Trump’s administration declared the opioid crisis a public health emergency. Last month he signed a law that he claimed would “end the scourge of drug addiction.” But it won’t. It won’t even come close. While the bipartisan bill, conveniently signed just two weeks before the midterm elections, includes some meaningful measures, experts agree it doesn’t go nearly far enough since it omits essential life-saving solutions and fails to adequately fund its own proposals.
For example, my sister was arrested and incarcerated multiple times, (always for nonviolent crimes directly related to her disease) and died in disturbing circumstances while she was in custody. A system that responds to a public health crisis with arrests, courts and jails is a system that has failed. But at this point our prisons are full of people addicted to drugs: approximately half of inmates meet the American Psychiatric Association’s diagnostic criteria for substance use or dependence disorder, according to one study. Why not provide them with life-saving treatment while they’re inside?
Research shows that medication-assisted treatment, a combination of therapy and medication such as buprenorphine or methadone, is the most effective intervention for opioid addiction, and that these medications reduce mortality by half or more. Yet Maddie, like most prisoners, never received treatment while incarcerated – fewer than 1% of jails and prisons in the US administer FDA-approved addiction medications like methadone or buprenorphine. While Trump’s opioid package takes steps to improve access to treatment for people who are incarcerated, it does not appropriate any actual funding to do so.
Even out of jail Madelyn found it difficult to get help. She was often forced to wait days or weeks to get into treatment, inevitably at a short-term facility that required hours of travel for her to attend and our family to visit. Even if she was lucky enough to go to a facility that provided buprenorphine, (nearly 59% of treatment facilities in the US offer no form of medication-assisted treatment) she found it difficult to access the medication she’d been prescribed in rehab once she re-entered the world.
While certified physicians can prescribe opiate-based painkillers, only those with a special waiver can prescribe buprenorphine. When she couldn’t get buprenorphine, she was either forced to go without life-saving treatment or make a long trek every day to a clinic that administered methadone. Imagine having to go to the doctor’s office every single day to get your insulin or your blood pressure medication; imagine having to do so without a car or money to pay for a bus, let alone an Uber. While the new legislation, dubbed the Support for Patients and Communities Act, ostensibly removes some barriers to buprenorphine prescribing, it lacks the tens of billions of dollars, that are realistically needed to boost access to this life-saving medication and does nothing to reform America’s failed treatment system.
The law President Trump signed also does virtually nothing to promote harm reduction, which can keep people who use drugs alive long enough to enter recovery. The package failed to expand needle-exchange services or include safe injection spaces. My sister contracted hepatitis C as a result of using dirty needles, and she never had access to a safe injection space, which allows people who use drugs to inject in a medically supervised environment. While safe injection spaces are arguably illegal in the US, cities like Philadelphia and Seattle are considering opening them. There are already more than 100 safe injection spaces around the world, mostly in Europe, Australia and Canada, and studies show they can prevent death and infections like HIV or hepatitis, and increase the number of people entering treatment.
Until the moment my sister drew her last breath my family held onto the hope that she would not just survive her disease, she would thrive. She had talked about going to college, maybe becoming a nurse so she could help people like herself, meeting someone who loved her and treated her well, and raising her son. We grieve now not just for who she was but who we hoped she would become had she gotten the help she needed.
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My family now holds the hope we once had for Maddie for everyone still suffering from this disease and for their families. But that hope won’t be realized without the meaningful action of politicians and policymakers. They are the people who can make sure no one who is addicted to opiates has to hope they can get clean, that their families don’t have to hope their loved ones will survive. To save the lives of people like my sister, President Trump, Congress, and state lawmakers must respond to the escalating opioid epidemic with comprehensive, well-funded legislation. It’s time to move beyond hope to actually taking the steps needed to end the scourge of drug addiction.