NEWARK, New Jersey — The one thing that makes Jessica Goense really brighten up is her dream of becoming a chef and owning her own restaurant. She describes it as her fate. “I’m Italian,” she quipped. “The olive oil runs in my veins.”
It’s been a long road to a point where that dream might finally become reality. At just 11 years old, Goense began using marijuana and drinking. At 15, she progressed to heroin. Now 29, she’s not proud of the things she did to get drugs, from prostitution to stealing. But after so long, she feels like she’s really on track: She’ll soon complete her residential treatment at Integrity House, one of the largest drug treatment providers in New Jersey. After, she plans to go back to college for the culinary arts. That could, she hopes, finally be the start of her career in cooking — a dream she keeps close with a picture of herself in chef’s attire.
But 200 miles away from the Newark Integrity House location where Goense and I spoke, her hopes are being threatened by President Donald Trump and Republicans in Congress, who are working to pass a health care bill that could upend Goense’s plans.
Goense is one of the hundreds of thousands of Americans who rely on the Affordable Care Act (“Obamacare”) and particularly Medicaid, which Obamacare expanded, for addiction care. By expanding not just access to health insurance but also enforcing requirements that insurers cover mental health and addiction services, Obamacare and the rules tied around it have dramatically expanded access to addiction coverage. By one estimate, the law gave potentially life-saving coverage to 2.8 million Americans with drug use disorders.
Goense will soon finish her residential treatment at Integrity House, which is paid for through Medicaid. Once she’s out, she will likely continue using the public health plan to keep paying for her care as she obtains a job — perhaps part-time — and works through college. Medicaid and the Obamacare-funded expansion are crucial to pulling this off, because without insurance, she has no idea how she’ll continue her treatment.
Congressional Republicans, with Trump’s support, have explicitly taken aim at these policies. They want to undo the Obamacare-funded Medicaid expansion. They want to repeal coverage requirements that mandate insurers, including Medicaid, cover addiction treatment. They want to make Obamacare’s tax credits less generous. And they would achieve all of that with the bill, the American Health Care Act, that’s now working through the Republican-controlled House of Representatives and will be voted on Friday.
That, Goense worries, could leave her without a safety net that is not only helping get her life on track, but could very well save her life by reducing her chances of relapsing, which could lead to an overdose and death.
The new threat comes at a harrowing time for America’s drug problem: As legislators mark up the bill they hope to begin dismantling Obamacare with, the country is being ravaged by an opioid painkiller and heroin epidemic that has led drug overdose deaths to skyrocket to record levels each year for the past few years. In total, more than 560,000 people in the US died to drug overdoses between 1999 and 2015 (the latest year of data available) — a death toll larger than the entire population of Atlanta. Most of those deaths have been linked to opioids like OxyContin, Percocet, heroin, and fentanyl.
Obamacare’s repeal could make the epidemic worse by stripping people of access to drug treatment that can get and keep them off opioids. Yet it remains rare for legislators to even make a connection between Obamacare and the opioid crisis, with only more moderate Republicans like Sens. Rob Portman of Ohio and Lisa Murkowski of Alaska explicitly drawing a link between the two.
Suffice to say, then, Goense — as she’ll quickly tell you — isn’t alone in her suffering or the relief that Obamacare provides for her. But her story offers a look into the kind of pain that Republicans could inflict on millions of Americans should they pull back care that can quite literally save lives.
“If it wasn’t for insurance, I wouldn’t be here”
Obamacare and previous health laws, including the Mental Health Parity and Addiction Equity Act and Medicare Improvement for Patient and Providers Act, helped make necessary treatment more accessible for drug users. The Medicaid expansion provided insurance to low-income, childless Americans who could never afford treatment otherwise. Obamacare in particular boosted coverage through tax subsidies and Healthcare.gov for those who can’t get insurance through an employer. And the various laws cemented a package of coverage requirements — notably, the requirement that health plans, including alternative benefit plans in Medicaid, cover mental health and addiction treatment as an “essential health benefit.”
Goense relies on Medicaid for her addiction and other mental health care, which she can do thanks to Obamacare’s coverage requirements. In fact, she would likely be in prison if it wasn’t for Medicaid: If she was not in treatment, that would put her in violation of drug court–established guidelines. It would also present a potentially life-or-death situation for Goense: Without insurance to pay for care, it’s entirely possible that she’d relapse, overdose, and die.
“If it wasn’t for insurance, I wouldn’t be here,” Goense said.
Goense will probably continue to rely on Medicaid after she gets out of the residential program at Integrity House. She plans to stay with Integrity House’s program and stay in outpatient treatment, which will require insurance. And while she plans to get a job as she attends college, there’s a solid chance it won’t come with coverage, especially if she only works part-time.
So Medicaid is likely crucial to Goense’s success once she gets out. And the Obamacare-funded expansion insures she can continue to rely on the public program, since the law lets people with slightly higher incomes (up to about $16,400 for an individual in 2017) and no children get on the Medicaid rolls.
That’s not to say that Obamacare has offered a full fix for everyone in a situation like Goense’s. A big gap remains in access to treatment: According to 2014 federal data, at least 89 percent of people who met the definition for having a drug use disorder didn’t get treatment — and that was with Obamacare largely in place. And even among people who can now afford treatment, it’s common to face weeks- or months-long waiting periods for care.
Medication-assisted treatment, which Goense is not on, remains a particular sticking point. Decades of research show that medicines like methadone and buprenorphine, both of which are opioids, are effective for managing and treating opioid use disorder. Yet there’s a stigma that these drugs’ use is merely replacing one opioid with another. And that’s led to several restrictions, with tight regulations on how much doctors can prescribe and their continued exclusion from some states’ Medicaid plans even after Obamacare.
The lack of access and waiting period can be life-threatening: As patients wait for care, they’re more likely to go back to drugs, and each of those instances of use carries the risk of a deadly overdose. That helps explain why, based on the latest estimates, more than 52,000 people died of drug overdoses in 2015 — more than died of gun homicides and car crashes combined, and more than died at the peak of HIV/AIDS epidemic back in 1995.
But Obamacare helped. According to a 2014 study by Truven Health Analytics researchers, Medicaid paid for a quarter — $7.9 billion of $31.3 billion — of projected public and private spending for drug treatment in 2014.
That’s why not just patients but doctors, hospitals, and health care administrators are warning of the consequences of repealing Obamacare and the Medicaid expansion.
As Integrity House President and CEO Robert Budsock warned in a recent editorial for the New Jersey Star-Ledger, “Any cuts to the Medicaid expansion on the federal level would take even more resources from the behavioral health safety net — a chilling prospect given the current opioid and heroin crisis that the country faces.”
“That question scares me”
Still, Republicans are ready to dismantle many of these gains. They have long opposed the Medicaid expansion, which they see as excessive government encroachment into the health care sector. And they have long decried Obamacare’s essential health benefits, arguing (correctly) that requiring insurers to cover things like mental health and addiction care makes health plans more expensive overall.
The Republican bill currently working through Congress, the American Health Care Act (AHCA), would take steps to dismantle Obamacare over the next few years. It would phase out the Medicaid expansion. It would repeal essential health benefits for individual market and Medicaid plans, possibly allowing insurers to stop covering drug treatment altogether. And it would eliminate “actuarial value” requirements that require insurers to pay for a certain amount of care — making it so insurers can effectively say that they cover, for instance, mental health and addiction care without actually paying for it.
The AHCA would also pull back Obamacare’s tax credits, as well as regulations that shield older people from high premiums, effectively making insurance much more expensive for older, low-income Americans. And it would effectively cut Medicaid by moving it toward a “per capita cap” system or a block grant system that would over time give states less money for the program, on top of allowing states to peg a work requirement to Medicaid.
In total, the Congressional Budget Office estimated that the AHCA would cost 24 million Americans their health insurance by 2026.
The bill could further change as it works through Congress, and it still needs both Congress and President Trump’s approval to become law. But it is what Republicans have proposed so far and plan to vote on in the House on Friday.
The end of the essential health benefits mandate would be particularly crushing for low-income people with drug use disorders, since it would allow states to exclude mental health and addiction services from Medicaid plans. Nearly 1.3 million people obtain care for mental health and drug addiction services through the Medicaid expansion alone. Potentially hundreds of thousands more — including people on private and other public plans — stand to lose the coverage they need if the essential health benefit mandate collapses.
“Over the last 60 years, 70 years, or so, insurers have scrupulously avoided enrolling people with mental health and addictions as much as possible,” Richard Frank, a health economist at Harvard, told me. “That’s because they are more complicated and expensive to treat. And they did so by offering either no coverage or limited coverage.”
The first wave of losses would be most felt by patients who need insurance to cover their addiction care. But there’s a secondary effect, experts warn, that would further limit access to treatment: If treatment programs know or suspect they’re going to have fewer people using their services (since fewer people may have insurance), they’re probably going to be more reluctant to open up more facilities. And that could leave some areas without any options for care.
“A key issue here is that [substance use disorder] care is not like oncology or cardiology,” Keith Humphreys, a drug policy expert at Stanford University, told me. “Most providers are small, mono-business entities that can’t absorb costs elsewhere in their care systems. What this means is that while hospitals will not go broke if poor people get less oncology care coverage, many [substance use disorder] treatment agencies will.”
Goense succinctly explained the effect of all this: “You’re taking away the help I need.”
Goense didn’t even want to consider what repeal would mean for her and other people with drug use disorders who rely on Medicaid or other parts of Obamacare to keep going. “That question scares me,” she said. “Without Medicaid, without medication that I know I desperately need, without medical insurance supporting me, you’re pretty much taking away hopes and dreams. I can only do so much on my own. I just don’t know.”
“The disease of addiction”
Goense can’t pinpoint what started her disease. Maybe it was hereditary, given that her mom struggled with drinking. Perhaps it was due to the lack of parental supervision or attention, which Goense attributes to both her parents working. It could’ve been the time she was molested by the father of her best friend — someone so close that Goense called her “my sister” — in her early teens. It may have been all these things and more.
“There was always something missing,” she said. “And I didn’t know what it was.” But she added, “Any chance I had, I would look outside myself [with drugs].”
But she knows that everything that happened to her from the first time she used pot and heroin to now is not what she would have wanted out of her life. So when she talks about her drug history, she doesn’t just say “addiction”; she emphasizes “the disease of addiction.”
The disease truly consumed Goense’s life, becoming what she characterized as the “full-time job of getting high.” It led to multiple arrests, all of which she said were drug-related, starting in her sophomore year of high school. It led to her latest stretch at drug court, which got her placed at Integrity House. And it led Goense to disregard even her basic health needs: “I knowingly gave myself hepatitis C by using my friend’s dirty needle. I was so sick that I didn’t even care.”
“I would never wish this on my worst enemy,” she said.
While there is some occasional dispute in public discourse about this, there’s no doubt about it in the medical world: Addiction is a disease. Every major medical institution, from the American Psychiatric Addiction to the surgeon general to the World Health Organization, says as much.
The way Goense describes her addiction — as something she clearly didn’t want, but seems to lack control over — is exactly what makes it a psychological disorder. As Stanford psychiatrist Anna Lembke told me, “In your family or in your clinical work, if you see somebody who continues to use despite their lives being totally destroyed — losing their jobs, losing loved ones, ending up in jail — nobody would choose that. Nobody anywhere would ever choose that life. So clearly it is beyond this individual’s control on some level.”
That doesn’t mean Goense doesn’t take much of the blame for her past. She knows she’s sick, so she’s fully embraced Integrity House’s program and its daily grind — the group meetings in which long-held secrets and trauma can burst into the open, the forced outings into the “real world,” and the lack of freedom to choose what she does and where she goes. (Although, she added, the program does have art therapy, which she enjoys.)
But even after months of this, she still doesn’t fully trust herself. That’s one of the reasons she plans to force herself into a halfway house once she’s done with Integrity House’s residential program: She knows she needs some personal checks in place on her path to recovery.
“Although I’ve identified certain problems I had growing up, I need to take accountability,” Goense said. “I know I’ve had certain dysfunctional ways of growing up, but I need to take accountability for certain actions.”
But as Linda Rosenberg, president of the National Council for Behavioral Health, told me, you can’t blame people with drug use disorders for their disease — and leave them to suffer, overdose, and die — because some of addiction’s causes are behavioral. There are, after all, behavioral aspects to other diseases, like heart disease and diabetes, that we fully expect the health care system to deal with. “You can always find the pieces that you can use to blame people for their own problems,” Rosenberg said. “I don’t think this is any different.”
Once addiction is considered a disease, the natural conclusion should be that it requires medical attention. And once you come to terms with that reality, Rosenberg argued, the other natural conclusion is that the government — just like it does with all other illnesses and epidemics — needs to step in to help those who can’t afford care, especially those who’d languish or die without it.
“People just look for ways to blame the victim to bolster their belief that government shouldn’t have a role in people’s life,” Rosenberg said.
Goense is an example of how treatment can truly change someone’s future. Her care has helped her come closer to understanding the void that she felt for most of her life. It’s helped her better cope with her anxiety, depression, and PTSD, all of which drove her to use drugs to “self-medicate.” And it’s helped her learn that other things besides drugs, such as cooking and her family, can help fill what she long thought was missing in her life.
“My family, [food] is how we bond. We bond in our kitchen. It makes me think of home. It makes me happy,” she said. “And it’s a way to make other people happy.”