Ms. Smith is a 48-year-old female on hemodialysis for end-stage renal disease (ESRD). She is a schoolteacher and mother of three. Her transplant surgeon calls about an available donor kidney and explains that the donor is young but “increased risk” due to previous intravenous (IV) drug use. There is an unlikely possibility of transmission of undetected human immunodeficiency virus (HIV) or hepatitis, but her surgeon still recommends that she accept the organ. Ms. Smith is unsure. She has struggled with dialysis and wants to return to her work and family but wonders how much of a return to normalcy she could have with HIV. Ms. Smith asks her surgeon whether she will remain at the top of the transplant list if she declines this “high-risk” kidney. Her surgeon informs her that she will. Ms. Smith declines the offer.

Over 100,000 individuals currently need a lifesaving organ transplant, yet only 39,719 received a transplant in 2019.¹ Despite this persistent supply-demand discrepancy that defines the organ donor system,^1,2 Ms. Smith’s scenario is common. Such “high-risk” kidneys—officially classified as “increased risk donor” (IRD) organs—are rejected at 1.5 times the rate of non-IRD kidneys.³ The IRD classification denotes donors who meet criteria associated with greater risk for contracting HIV, hepatitis B virus (HBV), and hepatitis C virus (HCV), including IV drug users and persons with hemophilia, in an effort to reduce infectious disease transmission.^4,5 With modern nucleic acid testing (NAT) for HIV and HCV, the risk of unintended transmission is low but cannot be eliminated.⁴ For patients and providers, weighing the risk of disease transmission relative to remaining on the waitlist is challenging and prone to bias, potentially leading to underutilization of IRD organs and lives lost.

Amid growing concerns about HIV transmission following transplant surgery, the Centers for Disease Control and Prevention (CDC) announced the 1994 Public Health Service (PHS) guidelines for IRD organs.⁶ In 2013, these guidelines were expanded to include criteria for increased risk status for HBV and HCV.⁷

In the years since the original IRD designation, much has changed. IRD organ donations from drug overdose deaths have increased due to the US opioid epidemic, resulting in an increase of potentially usable organs.⁸ The incidence of HIV has decreased,⁹ while hepatitis incidence continues to increase,¹⁰ and effective pharmacologic treatments have transformed outcomes for both diseases. Advancements in pharmacology and NAT have also shortened the diagnostic “window” periods, when the virus is undetectable despite being present.⁷

The kidney offered to Ms. Smith was labeled IRD due to the donor’s previous IV drug use. Estimates for the risk to a recipient of a window period infection for HIV and HCV undetected by enzyme-linked immunoassay (ELISA) and NAT per 10,000 donors are detailed in Table 1 (recreated from the Organ Procurement and Transplantation Network report⁷). There is a 30-fold difference in the risk of HCV transmission between an organ donated from an IV drug user with a negative serology test (3%) and an incarcerated individual with the same negative test (<0.1%). Nonetheless, these scenarios carry the same IRD designation.

While an IRD organ may represent an initial increased risk, there are also corollary risks of remaining on the transplant list, such as contracting HCV while receiving hemodialysis or death from organ failure.⁵ In 2017, more than 6500 transplant candidates died while on the waitlist.¹ Given that patient and graft survival following transplantation are equivalent between IRD and non-IRD organs, acceptance of IRD organs compared with remaining on the waitlist provides a significant long-term survival benefit.^11,12

Current IRD guidelines leave each organ offer vulnerable to the biases of provider and patient. Transplant surgeons’ bias of transmission risk based on IRD criteria do not correspond with actual risk, leading to underutilization of IRD organs.¹³ Research has shown, however, that with more direct guidance on IRD use, surgeon utilization of IRD organs increases.¹⁴ Additionally, improved patient education regarding true risks can improve utilization.^15,16 Enhanced knowledge and communication about IRD risk could improve acceptance of IRD organs and patient outcomes.

If Ms. Smith chooses to accept the IRD kidney, her Best Case outcome is a successful transplant. Her surgeon should describe the quality of life benefits, such as returning to caring for her family and work. This is also her Most Likely outcome.

In the Worst Case outcome, Ms. Smith contracts a viral disease from the IRD kidney. Her surgeon should describe the treatment regimen for each possible disease (e.g., lifetime antiretroviral therapy for HIV or near-guaranteed cure for HCV).

If Ms. Smith instead chooses to remain on the waitlist, her Best Case outcome would be that she quickly receives an offer for a non-IRD kidney before her health declines further. Her surgeon should describe that she would remain on the waitlist and continue with dialysis but should also communicate that this scenario is unlikely.^3,12

The Worst Case outcome of declining the IRD kidney is that Ms. Smith will die of ESRD complications while waiting for another kidney offer. Her surgeon can gently explain the expected decline in her quality of life and functional status.

In this situation, the Most Likely outcome of declining the IRD kidney would lie somewhere between the best and worst cases: she can most likely expect to wait some time for a new match. The graphical representation of probabilities in the visual aid is especially helpful, as Ms. Smith and her family can reference it after their discussion.

As Ms. Smith considers her options, her surgeon should elicit Ms. Smith’s values and goals as well as the risks that are acceptable to her. Using the BC/WC decision tool, Ms. Smith’s surgeon will help develop a shared understanding that accepting the IRD kidney would give her the most likely opportunity to resume the life that she values, but the ultimate decision is hers.