Katie Hallum, 22, was just 18 years old when she was diagnosed with immunoglobulin A nephropathy. One and a half years later, she crashed into kidney failure and underwent dialysis. However, with a kidney transplant from a stranger who Hallum met on TikTok roughly 1 year ago, she got a new lease on life. She recently graduated from The University of Oklahoma and became a full-time Indigenous Affairs reporter for the National Public Radio Member Station KOSU in central Oklahoma.
“I was going to get up here and tell you how ‘cushy’ my life has been [since the transplant],” Hallum said during the June Kidney Innovation Conference in Washington, DC. “But then I thought, no, I’ll tell you the true story.”
Like many transplant recipients who participated in the conference, which was sponsored by the Kidney Health Initiative, the Kidney Innovation Accelerator (KidneyX), and KidneyCure, Hallum highlighted some of the ways that having a transplant has improved her life. But she and other speakers also drew attention to ongoing challenges and the need for patient-centered innovation to help patients navigate the emotional, clinical, and other challenges of living with a transplant.
“My hope is that, starting with the conversations we are having today, we can build on the hopes and dreams of Katie and thousands like her, not only in the United States but elsewhere in the world,” said Ogo Egbuna, MD, MSc, FASN, a transplant nephrologist working at Vertex Pharmaceuticals and a member of the Kidney Health Initiative's Board of Directors. Egbuna moderated a session at the conference focusing on kidney transplant innovation.
“The fight's not over”
Hallum remembers following a strict routine while she was on dialysis, but since her transplant, she has been surprised to find herself suddenly being disorganized, showing up late, or procrastinating. When she spoke with her nephrologist about it, he suggested that perhaps she was now able to act like a 22 year old. Hallum said that she was put off by the suggestion. But a post-transplant comment from a former boyfriend, who knew her when she underwent dialysis, helped her realize the emotional toll her condition had taken on her.
“He said, ‘Your words have meaning now,’” she shared. “He said [that] when we dated, ‘You would tell me things like you feel happy and are grateful to be alive, that nothing ever gets you down. I could see that you only thought you believed those things, but now you mean them.’”
After the conversation, Hallum cried for the first time post-transplant. “I was like, ‘I don't know who I am anymore, but I know who I am going to be,’” she said, citing her recent graduation, new job, and law school application.
Yet, despite the benefits of her transplant, she noted the ongoing demands of her care. Instead of frequent dialysis adjustments, she now faces frequent magnetic resonance imaging procedures when something is wrong, computed tomography scans for headaches, bone density tests, and cancer screenings. “The fight's not over,” she said. “I’ve switched from seeing a dialysis doctor to seeing a transplant nephrologist. I have always hoped that there would be one day [when] I don't have to worry about getting some weird cancer from my immunosuppressive, and I don't have to worry about my immunoglobulin A nephropathy coming back, which you all know will eventually happen.”
Hallum shared that she is tired of worrying about protein numbers or that getting sick will harm her kidneys. She is also exasperated by medication alarms. Hallum, who enjoys figure skating, has also had to worry about falls because some of her medications have precipitated osteoporosis. “I’m glad I’m young because I hope that one day, there's some sort of innovation in the transplant field that makes sure my words [about how I am doing] forever hold meaning,” she reflected.
Medication misadventures
Hallum is certainly not alone in her frustration. Anne Rohall-Andrade, JD, a health care attorney and disability advocate, donated one of her kidneys to her then-13-year-old daughter. Her daughter, now age 18, had developed kidney disease, cerebral palsy, and a seizure disorder as a result of an extremely premature birth at 24 weeks gestation due to twin-to-twin transfusion syndrome, a condition in which one twin is deprived of fluids due to a problem with the placenta.
“My daughter is in that place where she's transitioning from being a little kid to going off to college,” Rohall-Andrade said. “Many of you who are caregivers or parents probably understand that is a tough transition for any kid, but especially a kid with chronic illness.”
Rohall-Andrade called for medication innovations. She noted that her daughter's tacrolimus (Prograf) and mycophenolate are her “frenemies” and require strict adherence to schedules. Whereas birth control or diabetes medications can be administered through a patch or other devices, Rohall-Andrade said that her daughter wonders why post-transplant regimens cannot be delivered similarly.
At the time of her presentation, Rohall-Andrade's daughter was in an intensive care unit but had urged her not to cancel her talk. Her daughter had been rushed to an emergency department during an episode of low blood pressure caused by a medication titration problem. The ordeal turned into days in an intensive care unit undergoing tests for sepsis, despite Rohall-Andrade sharing her concerns that her daughter's two blood pressure medications coupled with a 10-pound weight loss might be the root of the problem.
“Doctors need to listen to parents and patients,” she said. She argued that there also needs to be better coordination between emergency departments and transplant nephrologists and their interoperability with electronic health records. Rohall-Andrade noted that her daughter was admitted to the emergency department in the nearest hospital, which did not have access to her electronic health records. Rohall-Andrade had to call her daughter's pediatric nephrology transplant team and urge the hospital's nephrologists treating her daughter to talk with the team to get up to speed on her care.
Hallum would also like more tolerable drug regimens with fewer side effects. Hallum explained that she was being treated with the lowest possible dose of Prograf. Her body still reacts poorly, and she has variable blood levels of the drug. She would also like to stop taking mycophenolic acid (Myfortic), which has contributed to difficulties with keeping food down and low body weight—she was just 83 pounds when she left the hospital post-transplant. She said that her doctors have tried to manage her side effects with very low doses, switching to other medications, or adding new ones. “I wish that instead of throwing more pills at the side effects caused by these immunosuppressants, we could kind of get to the bottom of why they cause side effects,” Hallum said.
Living donor support
As a living donor herself, Rohall-Andrade remarked that living donors need better, clearer information. She noted that most donors hear about better outcomes for recipients from living donors as well as potential standard surgical risks, like bleeding or anesthesia problems. However, donors receive little information about their long-term prognosis.
Most living donors are very healthy because of the screening involved, and most do well, she said. However, Rohall-Andrade noted few studies of long-term health for living donors. An informal survey that she conducted of 75 living donors in two online support groups found that many living donors get mixed messages about their need for long-term follow-up care. Half of the respondents reported that the transplant team told them that seeing a primary care physician and undergoing laboratory tests (blood, urine, and other fluids) was good enough for their follow-up care. The other half said that the team advised them to see a nephrologist. Many respondents also reported a lack of information on their long-term health. “I’m in many, many support groups for living donors, and I hear the same concerns and questions from these donors post-donation,” Rohall-Andrade said.
Many living donors, especially those who are altruistic, reported being ostracized by their families, who do not understand why they would take the risk of being a donor. Survey respondents also reported impacts on their mental health. Some reported a temporary sense of loss after the donation. They may be upset if their recipient does not take care of the allograft. For example, Rohall-Andrade described donors who have been devastated when their recipient developed an alcohol addiction or was not being compliant with their medications. “There is incredible grief when a donor, particularly [a donor who is altruistic], finds out that the kidney recipient isn't taking care of their body,” she said.
Although only five of the surveyed donors said that they regretted the decision, respondents noted financial hardships caused by the need to take time off of work, a temporary loss of the ability to care for children or aged parents, and the need for loved ones to take time off of work to care for the donor. “There are a lot of challenges that need to be addressed,” Rohall-Andrade said. She noted that it can be particularly challenging when a parent of the pediatric transplant recipient is the donor and the child's primary caregiver, as she is.
Roslyn Mannon, MD, FASN, chair of ASN's Policy and Advocacy Committee and a professor in the Division of Nephrology at the University of Nebraska, cited two pieces of legislation making their way through the US Congress that may help address some financial challenges for donors. One is the Living Donor Protection Act (1), which would prevent health, life, and disability insurance discrimination against donors and specifies that they are eligible for job-protected medical leave. The other is the Honor Our Living Donors Act (2, 3), which would expand the number of donors who qualify for wage, travel, or caregiver reimbursement. “We are so close, and I’m so appreciative of all the representatives who have helped move this forward,” Mannon said.
Stalled clinical innovation
Egbuna noted huge strides in understanding the immune response to transplant and advances in the development of small molecules, diagnostics, and biologics, yet these have not yet translated into improved allograft recipient survival. Mannon blamed complacency in the field, which has reached close to 100% graft and patient survival in the short term. “We’ve allowed ourselves as clinicians and surgeons to accept what we have,” she said. “We as a transplant [community] have accepted that level, and we lost sight of 5- and 10-year outcomes.”
“We’ve allowed ourselves as clinicians and surgeons to accept what we have. We as a transplant [community] have accepted that level, and we lost sight of 5- and 10-year outcomes.”
As a result, the field has stuck with the trio of corticosteroids, antimetabolite immunosuppressants, and calcineurin inhibitors that helped dramatically improve outcomes. However, this triad comes with significant “baggage” for recipients, such as neurologic problems, gastrointestinal disruption, and long-term toxicity, Mannon said.
She noted a shortage in clinical trials of new biologics or other drugs for transplant recipients and highlighted financial and other disincentives to such research for drug companies. She suggested that the lack of new US Food and Drug Administration (FDA)-approved surrogate endpoints, patient-centered outcome targets for transplant trials, and low uptake of some newer transplant drugs are contributors. “It's really ourselves, the industry, and the FDA. We’re all kind of complicit in how we got here,” Mannon said.
Mannon noted that there are currently unmet needs among transplant recipients for antivirals to treat the BK virus and for therapies to treat antibody-mediated organ rejection. She also stated that among transplant patients who die, many have functioning allografts but have other conditions like diabetes or cardiovascular disease that may be exacerbated by immunosuppression. She argued that artificial intelligence or other tools could be used to identify the best deceased donor organ matches, assess patients’ risk profile post-transplant, and help optimize medication regimens.
Egbuna noted that dramatic advances have been made in HIV care that improve patients’ quality of life, such as long-acting injectables that reduce the frequency of drug administration. We need similar advances in the transplant field, he suggested. “It is not just a new drug that gets approved but something that makes a difference in [patient] quality of life,” he said.
References
- 1.↑
Living Donor Protection Act of 2023, S 1384, 18th Congress (2023–2024). April 27, 2023. https://www.congress.gov/bill/118th-congress/senate-bill/1384/all-info
- 2.↑
Honor Our Living Donors Act, HR 6020, 118th Congress (2023–2024). June 12, 2024. https://www.congress.gov/bill/118th-congress/house-bill/6020
- 3.↑
US Congresswoman Suzan DelBene. DelBene, Obernolte introduce bill to remove barriers for organ donors. October 26, 2023. Accessed July 18, 2024. https://delbene.house.gov/news/documentsingle.aspx?DocumentID=3690
