The war on drugs, poor treatment programs, and the social stigma of addiction have caused an epidemic of suffering among young addicts and their families.
By Ann Bancroft
When a child suffers from cancer, community gathers around the family, bringing meals and offering solace, running errands, and holding fundraisers to help pay medical bills. Parents know where to go to for help. Systems for treatment and support are well established. There is no stigma in childhood cancer. There is only the horror of it.
When the disease threatening a child’s life is addiction, there is no clear path. Because addiction treatment has been divorced from our healthcare system, the disease often goes undiagnosed while a family unravels. Instead of getting treatment, a child who uses drugs is expelled from school. The journey to recovery is terrifying, confusing, expensive, and often suffered in silence and shame. Too often, recovery doesn’t happen at all.
It begins, for example, with trouble in school, and a parent at their wit’s end taking a surly, spaced-out 12- to 15-year-old girl to a family doctor or therapist. The doctor, having received little training in addiction treatment, does not test for drugs or ask about a family history of addiction. The parent is told their child’s “acting out” is normal experimentation, or a cry for boundaries. Boundaries are set, and broken.
Every day in the U.S., more than 100 people die of a drug overdose. Thousands more die each year of causes related to alcoholism. The nightmare faced by addicts and their families might end differently if addiction were treated like the health crisis it is, rather than a moral failing or a crime. It seems that when enough children have died, when enough celebrities have overdosed, when enough parents have let their grief spur them to action, we may finally move addiction treatment in the U.S. toward a system based on science and compassion.
Changes are decades and thousands of lost lives past due. More than 22 million people (8.5 percent of the population aged 12 or older) are classified with substance dependence or abuse, according to the most recent survey by the U.S. Substance Abuse and Mental Health Services Administration. Only one in 10 receive any form of treatment, and those who do are likely to get treatment that is based on little scientific knowledge, delivered by under-trained counselors, of short and ineffective duration, and with no follow-up care.
Another 80 million Americans are categorized as risky substance users, defined as “those who are not addicted, but use tobacco, alcohol and other drugs in ways that threaten public health and safety.” Despite such widespread use, our medical system rarely screens or intervenes to stop risky use from progressing to addiction.
The girl comes home smelling like cigarettes and marijuana, or pills are found in her locker. She’s punished, and it doesn’t matter. All kids experiment, the mother is told. But she knows something is different about her child because she can’t seem to stop even as the consequences mount. Her daughter is labeled one of the “wrong crowd.” Other parents stop calling, and the family’s circle of support gets smaller.
The economic costs of not treating addiction before it creates deadly consequences are staggering. “For every dollar spent by governments on addiction, 96 cents goes to dealing with the consequences, and just four cents to treatment and research,” said Susan Foster, CASA Columbia’s Vice President and Director of Policy Research and Analysis. The organization estimates addiction and risky substance use costs federal, state, and local governments at least $468 billion each year.
Since the 1950s the American Medical Association has recognized addiction—first alcoholism and later, addiction to prescription or illegal drugs—as a complex disease of the brain that can progress to a chronic, relapsing, life-threatening condition. According to the Centers for Disease Control, deaths from drug overdose have become the leading cause of injury death in the United States. Prescription drug overdoses cause more deaths than traffic accidents among people 25 to 64 years old.
Even as scientific evidence about prevention and treatment of addiction mounted over the decades, public stigma and misunderstanding persisted. While campaigns to end AIDS and breast cancer raised millions by enlisting patients and their families as advocates, people suffering from addiction hid in shame or were too crippled by the cognitive damage of their disease to effectively organize.
For a brief period in the 1970s the federal War on Drugs included a push for research, understanding, and ultimately, a cure. But under President Reagan’s administration the system’s focus switched to punishment for anyone possessing or using illegal addictive substances. The nation’s medical system remained largely disengaged from efforts to prevent addiction. A hodge-podge of treatment centers filled the vacuum, ranging from luxury spas to wilderness boot camps to skid row evangelical programs. Most offered little to no medical expertise and followed no uniform standards of quality. Instead of building a system of effective healthcare for addicts, we built millions more prison cells.
One day, just like that, the sweet, smart, once athletic or artsy girl winds up in jail. By this time her parents know treatment is necessary. They know addiction is a disease. But the “best” treatment centers cost as much as $40,000 for just the first month; even the least expensive will require going into debt. Insurance covers only outpatient, or only 15 days, or nothing at all. There are weeks-long waiting lists at publicly subsidized facilities. Already the parents’ marriage is strained or broken by the stress of addiction and the financial burden.
Parents and other advocates for addicts, including the recovery movement and criminal justice reformers, hope the Affordable Care Act will begin the much-needed overhaul of America’s approach to addiction. In all the political rhetoric about Obamacare, there has been little mention that it will require most health plans to cover prevention, screening, and treatment of addictive substance use disorders. More than six decades after experts recognized addiction as a healthcare issue, the Affordable Care Act will help move addiction treatment where it belongs—into our nation’s healthcare system.
That means doctors will test for drugs and possible addiction as soon as it begins in childhood. It means parents are more likely to become educated about addiction and seek treatment early, before the disease has progressed. It means insurance companies will be compelled to cover treatment at centers that use evidence-based methods and offer medical care for commonly occurring disorders faced along with addiction, such as depression, bipolar, and anxiety disorders. And it means that follow-up care, now all but nonexistent, will become part of a recovering addict’s lifelong healthcare, just as it is for diabetics and cancer survivors and patients at risk of heart disease.
Change is on the horizon thanks in large part to parents like Gretchen Burns-Bergman and Caroline Stewart, whose sons suffer from addiction; artist Peter Bruun, whose beautiful 24-year-old daughter Ilisif died of an overdose at a treatment center on Feb. 11, 2014; and Gary Mendell, a hotelier whose son Brian suffered from addiction and ended his life with a gun.
Burns-Bergman is Executive Director and Co-Founder of A New PATH (Parents for Addiction Treatment and Healing). Stewart is a past President. Burns-Bergman is also lead organizer of Moms United to End the War on Drugs. The campaign claims 5,000 moms as members in 20 states, advocating for an end to the stigma of addictive illness and for treatment instead of incarceration for people with nonviolent drug offenses. In May 2014, Moms United launched “Ask Mom,” a campaign to train and equip parents to use naloxone, an antidote to opiate overdose.
Mendell is founder of Shatterproof, a new organization devoted to ending the stigma and finding a cure for addiction. Shatterproof is sponsoring a multi-state challenge to increase awareness and funding for the prevention, treatment, and recovery of addiction. Participants will rappel down the sides of skyscrapers to raise money and bring attention to the issue.
Following the death of Ilisif, with his grief fresh and raw, Bruun posted on Shatterproof and his own blog his plea for understanding and change:
“I choose not to be hushed about the circumstances of Ilisif’s death. What killed her is affecting thousands like her all around the country, and there is no shame in that… Public policies and attitudes toward addiction are all too wrongheaded: too little understanding, or ready access to treatment, or acknowledgement of addiction’s heartbreaking complexity and complexion. It is a disease that has been criminalized, and we are only just beginning to crawl out of that barbaric view.”
The girl gets out of jail and instead of being “scared smart,” she learns to smoke, then shoot heroin. The mom mortgages her house or depletes her retirement savings, and gets her child to safety in a treatment center for a month. Or the girl moves back in with her parents, trying to stay sober on her own. Things may look promising. There’s light in the child’s eyes again. She talks about college.
Most parents of addicted children never dreamed they’d become advocates for policy change. Burns-Bergman, a fashion show producer, and Stewart, a therapist, were pulled into advocacy through frustration with a system that failed their sons. Treatment centers with no professionals on staff, or those employing “tough love” methods that belittle and berate, did nothing to address the physiological and psychological effects of addiction.
“Most kids will experiment [with drugs or alcohol] but one or two out of any 10 kids experimenting at a party will not be able to walk away,” Burns-Bergman said. “That was my kids. My younger son had all kinds of talent… all kinds of reasons to want to have a life. But he can’t find his way. He has no choice.”
Stewart’s son, now 33, had learning disabilities and started smoking marijuana heavily in high school, where “the first group that received him lovingly was the stoners group.” He later became addicted to heroin. “He goes from jail to treatment to relapse to jail to treatment, over and over again,” Stewart said. “It’s heartbreaking. Most are technical violations because he’s high and disorganized. Most of his adult life he’s been institutionalized.”
“We have an army of mothers who are done,” Stewart said. “We are done with this bad treatment for our children.” Court-ordered treatment following jail, she said, was most recently an evangelical center that had no social workers or other professionals on staff. “Treatment was Jesus and a cookie,” she said. “There’s crap out there [for treatment]. Crap, crap, and more crap.”
The girl’s parents know her addiction can continue even after months or years of sobriety, because too often relapse occurs and the disease is worse the next time around. Still, they cling to hope. They see it in the testimony of people with 10 or even 20 years clean and sober. They know recovery can happen. But they live knowing that, for their child, things may not turn around.
The Obama administration is moving away from an enforcement-based “war on drugs,” but those sentenced to rehab instead of jail are even less likely to find high quality treatment than a family with the means and willingness to pay. Even the most reputable treatment centers are not equipped to offer patients the lifelong disease management necessary to prevent relapse. Most all are based on an acute care model that doesn’t recognize the chronic nature of the disease. Not surprisingly, the results are dismal.
Even with good treatment, once released, a patient’s connection with the therapist or counselor at a treatment center is usually severed, leaving the patient to find and develop new relationships when they are most vulnerable and least supported. When treatment is provided through healthcare providers, there will be continuity of care.
“The Affordable Care Act provides a framework, but we still have to figure out how this translates into more services, better services, and better access to them,” said Margaret Dooley-Samulli, policy director at ACLU San Diego and a longtime advocate for drug policy reform. “I am excited, though, that we have tools now that we didn’t have even a year ago. The drug policy world is just moving in a way it never has. We’re not the marginalized crazy people anymore.”
Even with all the recent attention, it will take public pressure to ensure that treatment covered under Obamacare is of high quality, based on proven methods, and ongoing. Depending on how far the disease has progressed, an addict may find recovery with a 12-step program or a support group, with short-term outpatient and regular follow-up care, or she may need months of treatment in a protective environment away from the people and things that might trigger relapse. Defining a spectrum of evidence-based care tailored to individual patients is a central challenge for providers and insurers under Obamacare, advocates say.
The girl stops talking about college and a month later she is using again. She gets on the waiting list for a subsidized treatment center with no doctors, only support groups of addicts telling addicts their stories, but at least it will be a safe place for a while. Maybe the girl will stay clean and sober until her parents can figure out the next thing to do.
Most people know somebody who’s been touched in some way by addiction. Still, all parents should educate themselves and their children about the disease because, if treated early, addiction can be prevented. Nearly all addiction begins with use of addictive substances before age 18, but most people who receive treatment don’t see a professional until 15 years later, long enough for the disease to have progressed to serious consequences.
Because most addictions begin with adolescent substance use, school officials should be trained to recognize at-risk students. Rather than expelling students caught with drugs and putting them at greater risk of addiction, educators should refer them to the healthcare system for medical intervention. For young people in recovery, sober high school and college programs should be made available.
“The earlier you begin to use, the greater the risk,” said Foster of CASA Columbia. “Substances have a greater impact on altering the structure and function of the [developing] brain.”
The girl comes home after treatment, vowing to start over. Her parents’ hope is renewed. Then one morning the mother discovers her child, blue-lipped and cold in her bed. A needle lies next to the tangled hair her mom used to brush when she sang her to sleep.
Joining the growing advocacy movement on behalf of addiction sufferers are people in long-term recovery “coming out.” Faces and Voices of Recovery mobilizes thousands of people across the country to call for an end to stigmatizing addiction and to spread the message that recovery is possible.
Today, with a heroin epidemic ravaging suburban communities, policymakers and the national media are beginning to pay attention to the enormous unmet need for addiction treatment. Vermont Governor Peter Shumlin devoted his entire State of the State address to the scourge of heroin in his state, calling for rapid building of treatment centers, public understanding of addiction as a disease, and better coordination between law enforcement, healthcare systems, and schools.
If yours is one of the many families dealing with an addictive illness, see a physician who is a member of the American Society of Addiction Medicine and ask for help in finding effective treatment. The public can turn the tide of addiction by holding pediatricians and family physicians accountable for screening for and intervening in risky use of substances. Ask insurers what treatment they offer for addiction and on what evidence they base their treatment decisions.
“Every day I meet another friend, a soul mate who has had to deal with the unspeakable grief and loss of this disease,” said Burns-Bergman.
With enough public awareness and demands for prevention and effective treatment, the Affordable Care Act will help other families tell a different story.
Correction: The number of people who die in the U.S. each day of a drug overdose is more than 100, not 100,000 as originally stated. STIR regrets the error.
This article originally appeared on STIR Journal.
Photo credit: Getty Images