Heroin overdoses kill more people than guns in the United States, and those who survive them do not always walk away unscathed. In May 2015, Jennifer, a thirty-one year old in Boston, injected three grams of heroin in her parent's basement, enough to kill herself more than once. Her family found her, likely within minutes, but even so it is hard to explain how she survived: She suffered a severe anoxic brain injury, meaning her brain was damaged from a lack of oxygen, and doctors placed her in a medically induced coma for a few weeks in order to help save her life, during which time she had several strokes.
The body she woke up into was profoundly different from the one she tried to leave. Jennifer now has overwhelming weakness throughout her left side, a hard time writing, holding a spoon, and bathing herself. She had never been homeless before, but now she is; at the shelter where she currently lives in Boston's South End, a doctor's note says she can't sleep in the top bunk because she cannot lift herself; the note also tells the staff that someone needs to help wash her.
Jennifer's story presents a paradox in the opioid epidemic: It is a common one that we don't know a lot about. "It's the bread and butter, unfortunately, of our in-patient addiction consult service," says Sarah Wakeman, medical director of the Substance Use Disorder Initiative and the addiction consult team at Massachusetts General Hospital. "Generally, the people who make it to the hospital don't die, but they're often left with devastating consequences of their untreated opioid use disorder. Those can be lasting and even life-long."
The way that a heroin overdose—or, as is increasingly likely, an overdose from heroin plus other opioids or drugs—kills you is often how it disables those who survive: It slows your breathing, which means not enough oxygen gets to your brain and tissues. "Having your body go without oxygen can result in damage to all parts of the body," Wakeman says. "That can range from a minor deficit all the way to people being in permanent vegetative states. Some of these complications are similar to imagining someone who has had a massive stroke, which is not something we really see in young people."
What happens to your body during and after an overdose, not from the drug itself but your surroundings, may also cause disability. "If someone has a near fatal overdose and they are down on the ground or in one position for a very long time, the pressure on that part of the body literally causes the muscles to start to break down," Wakeman says. This condition is rhabdomyolysis, which can lead to kidney failure, when the damaging products of muscle breakdown work their way through the bloodstream. And people aren't only found down on hard surfaces, they are found on hot ones, too, and increasingly arriving at the hospital with severe burn injuries, because they pass out on, say, a radiator.
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For something so potentially life-altering, if not catastrophic, you might expect public health researchers to know how common it is for someone to end up with a disability from a heroin overdose. After all, it's easy to find charts on how many people die from overdoses of heroin, natural opioids like oxycodone, or synthetic opioids like fentanyl. And while there was a 2002 survey in Addiction on overdose-related conditions and several individual case reports on overdose leading to disability (a couple of older reports on brain damage, a more recent report on rhabdomyolysis, along with cases of profound hearing loss) there is still much we don't know.
One reason is that researchers simply aren't prioritizing disability, not when 91 people die every day from an opioid overdose, more than the number killed by gunshots or car crashes. In Massachusetts alone, the number of opioid deaths has risen from an already astonishing 918 in 2013 to 1,979 last year. "Most researchers are interested in opioid overdose death," says Edward Boyer, a medical toxicologist and emergency medicine physician at the Brigham and Women's Hospital.
Another reason why we don't know much about disability from overdose brings us to yet another knowledge gap. "Nobody really knows, because we don't know the total number of overdoses," Boyer says. "Many overdoses—perhaps even most—never come to care, which means they are never seen by a healthcare provider. Even among those cases of overdose that are seen in a healthcare facility, the cause of injury or disability may not be formally attributed to heroin overdose. We just don't know."
The problem is both that some people don't come to the hospital when they overdose, and also the imperfect system of counting and coding something as an overdose. We tend to know who overdoses in two ways: either from a medical examiner report after a person has died or when a patient at the hospital is billed under an overdose diagnosis code.
A recent CDC review of unexplained deaths in Minnesota found that many opioid overdoses were missed because they didn't receive the right code, so the state's opioid death surveillance just didn't count them. "You can imagine if someone is admitted for the morbidity associated with overdose, for example rhabdomyolysis and acute renal failure, the ICU doctor might bill for those as the primary and secondary diagnoses and not include overdose," Wakeman says.
But even when people make it to the hospital for an overdose and the doctors recognize signs of a disability, it doesn't always make things any more clear. The reason is that they may not know what disability existed before the overdose, especially if the person hasn't been able to access healthcare in the past. As one 2013 study shows, people who are struggling with substance abuse issues and are homeless or suffering from housing insecurity often aren't able to get the health care they need. That means they may have scattered, if any, medical history.
"When you evaluate someone who survived, you most often do not have a pre-overdose baseline cognitive testing, so it's difficult to say the overdose was the reason for any detected impairment," says Genie Bailey, an associate clinical professor of psychiatry and human behavior at Brown University and a diplomate of the American Board of Addiction Medicine.
And even when we know that an overdose caused disability, as in Jennifer's story, that doesn't always mean they will receive the rehabilitation they deserve, or when they deserve it. Jennifer did not receive stroke rehab until a year after her overdose, even though she did complete detox and residential treatment. While the reason for the delay is unclear in her case, the next step for many stroke patients would be a skilled nursing facility; yet, as Wakeman and Brown infectious disease specialist Josiah Rich recently reported, many facilities will not accept a patient with a history of recent injection drug use. No matter the reason why, one of Jennifer's doctors tells me, too much time had passed between her overdose and rehab; a neurological exam didn't show much of a difference. At 33, Jennifer's best option is a nursing home.
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