We won’t treat people who inject drugs for hepatitis C—but we’ll take their organs when they die.
Prior to the COVID-19 pandemic, hepatitis C virus infection (HCV) was the leading infectious disease killer in the US. On May 19, 2021, National Hepatitis Testing Day, President Biden issued a proclamation calling on all Americans at risk for viral hepatitis to get tested; for all health care providers to educate their patients about these prevalent and often serious diseases; and to work to combat the associated stigma, discrimination, health disparities, and health inequities. He tasks us with eliminating viral hepatitis by 2030.
Also in May, the CDC reported that during the 12-month period ending in September 2020, drug overdose deaths in the US rose 29 percent compared with the previous annual period. The 87,980 reported overdose deaths surpass the number from any year since the start of the opioid crisis in the 1990s.
As a viral hepatitis physician caring for people who inject drugs at Rhode Island’s only nonprofit methadone program, I wake each morning wondering whether any of my patients overdosed overnight and will be the organ donor for another of my patients today. The juxtaposition of President Biden’s words with the CDC report transported me to Nobel Laureate Kazuo Ishiguro’s 2005 novel, Never Let Me Go.
Never Let Me Go (spoiler alert) takes place in a dystopian rendering of England. Kathy, the narrator, is a “carer,” tending to people who are “donors” in pain following surgery. Slowly we realize that there is a class within the larger society consisting of people cultivated to serve as organ donors for the rest, the “normals.” Donor children exist to grow kidneys, livers, and other useful organs, dying as young adults after too much has been serially harvested. Reared apart from the outside world in special boarding schools, donors remain unaware of the brutal reality ahead until their late teens when they begin donating vital organs. Carers postpone their first donation by supporting a caseload of donors through successive procedures.
Kathy spends her childhood with friends Ruth and Tommy at Hailsham, an enlightened school educating donors as though they are fully human. Hailsham ultimately closes, becoming the last place to contemplate the ethical implications of this caste system. Kathy comforts her friends as Ruth dies after her second donation and Tommy after his fourth, knowing that she too will soon donate too many necessary organs and die young.
From where do the donors originate? They are clones, made in a laboratory to serve as a resource for those who are superior—people who really matter. It is implied that donors are cloned from less worthy, drug-involved individuals. Ruth explains: “We’re modeled from trash. Junkies, prostitutes, winos, tramps. Convicts, maybe, just so long as they’re not psychos.” Given the benefits to their segment of society, the normals are indifferent to the suffering and killing of donors, whom they do not consider truly human.
Need we take heed of Ishiguro’s allegory? Could such a system develop? In a way, it has. In the US, a rising number and proportion of HCV-infected organs from young overdose victims are being utilized for transplantation.
Both overdose deaths and HCV incidence have skyrocketed with our opioid crisis, making the virus increasingly common among organ donors. With the 2013 advent of all-oral curative HCV pills (direct-acting antiviral agents, or DAAs) coinciding with these public health tragedies, harvesting grafts from people with HCV who overdose has become a means to expand the donor pool. The organ quality is superior because those dying en masse are young adults, with fewer years of wear on the body. We even have a new acronym to describe this phenomenon—ODDs, for overdose-death donors. People who inject drugs are our fastest-growing donor category.
Suddenly, HCV-infected organs are being transplanted not only into HCV-infected recipients, but into HCV-uninfected recipients. The recipients acquire the donors’ HCV. They are then treated with DAAs post-transplantation. This may be the first time in medical history that physicians are deliberately infecting our patients with a non-weakened virus that can cause considerable illness and death. Data thus far from liver, kidney, heart, and lung transplant recipients demonstrate that DAAs safely cure HCV post-transplantation.
I appreciate the gains. The growing pool of HCV-infected organs reduces time spent on a transplant waiting list, improves survival and quality of life, and saves lives of many who could otherwise die. With the heartbreak of an overdose death, the grief of family members is assuaged by donating their loved ones’ organs. However, I am concerned that insufficient attention, care, and resources are channeled into preventing these overdose deaths.
As a physician caring for patients with liver cancer and liver failure, I aggressively pursue liver transplantation for my patients in accordance with medical guidelines. I collaborate closely with multidisciplinary transplant teams. The strong foundation of my medical training was provided by the University of Pittsburgh School of Medicine, birthplace of liver transplantation. Yet, while the transplant community has readily adopted the strategy of accepting HCV-infected organs, we must ensure that more is done to prevent and treat addiction, and address contributory social and economic forces. We need expanded methadone and syringe services access, along with medicalization and decriminalization of substance use disorder. There are roadmaps to follow.
In life, people becoming overdose-death donors typically face barriers to addiction and HCV care. For example, most patients under my care are Medicaid recipients. Until 2018, when Rhode Island Medicaid lifted “sobriety” restrictions limiting DAA access for its recipients, my patients who use drugs, eligible to donate organs after overdose death, could not access DAAs.
I question whether it is justifiable that a person denied DAAs due to state Medicaid sobriety or other restrictions and who then overdoses be used as a donor, with the recipient then getting DAAs. State DAA restrictions are being lifted slowly, one state and sometimes one category (fibrosis stage, substance use, clinician type) at a time, but numerous difficulties remain for people who inject drugs.
In Ishiguro’s world, nobody fights the power. There is no rebellion by donors, thus the arrangement continues. Generally, the people I care for are too disempowered to speak up or organize. Their immediate concerns include polysubstance addiction, opioid use disorder, HCV, other infectious consequences of injection drug use, unstable housing, food insecurity, stigma, and substance and poverty-related interaction with the criminal justice system. Responding to the CDC overdose data, Nora Volkow, MD, director of the National Institute on Drug Abuse, highlighted that unlike the early years of the opioid crisis, when deaths occurred most among white Americans in rural and suburban regions, the highest increase in mortality from opioids (driven by illicitly manufactured fentanyl) is now among Black Americans, and the risk of dying from methamphetamine overdose is 12-fold higher among American Indians and Alaskan Natives than other groups.
I read the March 2021 New York Times’ review of Ishiguro’s newest novel, Klara and the Sun. The book about the limits of our humanity now sits on my nightstand, waiting for a break in the overdose crisis and HCV epidemic so that I may crack it open. I fear the book will remain untouched for the foreseeable future.
