Disparities in Kidney Care
Addressing systemic disparities and challenges in kidney care
One of the most sobering patient stories I’ve ever read that largely inspired this very newsletter was this tragic story of JaMarcus Crews - who was denied for years from receiving a kidney transplant largely due to many structural and social disparities. After our renal course this year on kidney disease and diabetes, I was inspired to reread this piece and more deeply understand the many complexities behind our kidney transplant and dialysis systems.
A few months into my independent research, I connected with Dr. Alex Blair who lended his expertise as a nephrologist in-training and unique background bringing health policy & management - many of our suggestions below around new care delivery models are the result of his expertise and a close thought partnership in exploring new and emerging policy structures - please join me in warmly welcoming him to the growing list of Margins of Medicine contributors!
By far the most frustrating part of our kidney care system is the presence of a race-adjusted equation that factors race into determining kidney function. By design, the equation assigns healthier scores to those that are Black based on incomplete research. This has so many alarming ramifications, namely prolonging the wait for a kidney transplant and delaying preventative or life-prolonging treatment for Black patients with kidney disease.
In 1999, after discovering an average higher creatinine for Black compared to white individuals, the researchers behind the original formula, postulated that Black patients had higher creatinine levels because “on average, black persons have higher muscle mass than white persons.” The assertion that Black bodies are different from all other bodies keeps company with generations of racist ideas that have infiltrated medicine, some of which were used to rationalize slavery. Researchers who developed the equation acknowledge that race is an imperfect variable, but even though they have updated the formula, they continue to adjust for race. The vast majority of clinical laboratories in the United States still use such formulas today.
Many major medical articles have refuted this alarming practice and some medical centers like UCSF, BIDMC, and UW have removed it from practice (honored to be classmates with two of the leaders of the Mt Sinai campaign - s/o to Paloma and Carina!). Thankfully, leading national nephrology organizations, such as the National Kidney Foundation and the American Society of Nephrology have recently established task forces addressing this issue and are carefully redesigning the eGFR formula re-evaluating the racial coefficient (Delgado, 2021). While the nephrology community has made strides in correcting this, disparities remain and significant work still needs to be done. Right now, Cystatin C is one of the leading alternative markers of kidney function that is also freely filtered by the kidney but has confounding influence from inflammation and infection.
Kidney Donor Risk Index (KDRI)
KDRI predicts survival of deceased kidney donors based on donor characteristics including race. The coefficient reduces the pool of African-American kidney donors in the United States. Since African-American patients are more likely to receive kidneys from African-American donors (source), reducing the pool of available kidneys exacerbates this racial inequity in access to kidneys for transplantation.
Medicare coverage of dialysis
To put the clinical hat on for context, patients with advanced kidney failure, also known as end-stage renal disease (ESRD) are referred to dialysis centers for life-saving treatment. Dialysis provides an artificial replacement of kidney function that filters blood, removing toxins, removing excess fluid, and correcting electrolytes, however treatment can be challenged by scheduling logistics, adverse symptoms, and frequent hospitalizations.
In 1973, the Nixon administration expanded Medicare to cover dialysis treatment for ESRD patients regardless of age - one of the few examples of a single payer-like infrastructure framed around a disease/treatment.
However, since that ruling, new non-dialysis treatment paradigms and infrastructure are emerging to improve patient quality of life, such as comprehensive CKD care that focuses on delaying progression to ESRD and more accessible kidney transplantation for ESRD patients. Initially planned for 2021, but delayed due to the pandemic, CMS will launch in 2022 the Kidney Care Choices (KCC) model, which will be a bundled payment for CKD4, CKD5, and ESRD payments designed to improve preventive care, access to transplants, and better starts on dialysis. Historically, CMS policies have incentivized dialysis organizations to keep patients on dialysis. While newer policies like KCC have refocused kidney care to be more comprehensive, which would have ideally helped patients like DeMarcus, disparities remain and more work needs to be done to ensure access to patient-centric kidney care both prior to dialysis and on dialysis.
Though the controversial kidney transplant referral guidelines have changed, the payment infrastructure is still in place which is one of the largest blocking points to more holistic and proactive kidney treatment.
Advancing American Kidney Health (AAKH) Executive Order
In December 2019, an executive order established by the Trump administration announced three broad goals to (1) reduce risk for developing kidney failure (2) improve access to patient-centered kidney treatment and (3) increase access to kidney transplants. Though a lot of the goals are left to be implemented, this executive order is the most ground-breaking policy shift in the last century - providing payment infrastructure and guidelines to align incentives around CKD care.
At a high-level, these goals are admirable but health systems and researchers call for more precisely defined quality metrics and to refocus the kidney care model on nondialysis CKD care:
Current high-performing practices were reallocating hemodialysis income to CKD care, a strategy that makes far less sense than providing sufficient reimbursement for the complex care required by individuals with advanced CKD to prevent them from ever requiring incenter dialysis, help them make a nonemergent patient-centered decision regarding kidney failure care, or, if electing in-center dialysis, initiate as an outpatient with a stable vascular access; all desirable outcomes that require investment in nondialysis CKD care and education to achieve. In contrast, for reallocation of funds from hemodialysis to occur, patients receiving hemodialysis are required, generating a vicious circle of incentives that mandates having a sufficient incenter hemodialysis population to subsidize other activities -- Source
This panel featuring executives from Somatus, Ouset Medical, and Cleveland Clinic also comments on the groundbreaking nature of the executive order - highlighting the ways that existing incumbents and new entrants can participate in value-based care models that incentivize cost-saving and proactive measures to address CKD.
Idea #1: Preventative Kidney Care Navigation
Among the many frustrating delays and gaps in JaMarcus’ patient journey, the ones that stick out to me are around timely referrals to nephrologists,aligned social workers and case managers that could help him navigate the complexities of referrals and self-management. Different counties may have limited access to specialty care and employers may also have limited coverage for transitions of care or other specialty needs.
Though we admire many of the new kidney care entrants from the past few decades (e.g., Cricket, Strive, Somatus, Monogram, etc…) that tend to work with payers and self-insured employers, we wonder if there is an opportunity for a new entrant that focuses on the underinsured patient population. Rather than partnering with commercial payers and large self-insured employers, this venture would partner with community-based and rural health systems to take financial risk directly with CMS and state Medicaid managed care organizations. From a patient acquisition perspective, they might find distribution channels through gig employers like the grocery store chains that employed shift-based workers like JaMarcus.
From a clinical model perspective, we could create integrated practice units around rural nephrologists that likely already serve the patient - providing missing social worker support that can reduce administrative burdens. Not unlike the way Aledade serves and enables independent PCP-led ACOs, we would strive to create value-based care models centered on the rural nephrologist.
When KCC launches in 2022, this payment model could support the integration of rural practices with necessary ancillary services. While rural nephrologists primarily see ESRD patients, this could change with KCC that a newco could build out. Such a company could complement rural nephrology practices by offering enhanced CKD management through a remote team of pharmacists, dieticians, nurses, and case managers. Given the challenge of managing CKD patients in remote rural areas, this ancillary team would have to remotely integrate with the rural practice through offering telemedicine visits, remote patient monitoring, and artificial intelligence software to identify patients in need of additional resources. A gap that will need to be addressed for a successful program would be a technology that could perform a remote physical exam, in particular volume exam, for CKD patients.
Idea #2: Home Dialysis + Accelerating Referrals and Transplant Evaluations
Currently, nearly 90% of ESRD patients receive dialysis through in-center units. The Advancing American Kidney Health Initiative aims for 80% of new ESRD patients to either receive a transplant or start on home modalities (home hemodialysis or peritoneal dialysis) by 2025. While some patients will still prefer in-center hemodialysis given the support of dedicated providers during treatment, more patients should be offered home modalities given the greater flexibility, gentler treatment, and overall reduced healthcare cost. Currently, CMS reimburses 25 training sessions with nurses for hemodialysis and 15 training sessions for peritoneal dialysis before patients are expected to perform treatments autonomously at home. With this limited window, “optimal” patients for home modalities tend to be more educated with strong support systems, which could contribute to health disparities One way to increase access to home modalities would be to improve the technology to be more user-friendly through automation, voice-prompts, and remote patient monitoring. Companies, such as Oneset’s Tablo machine and Baxter’s Amia are designed to improve usability and enable remote treatment monitoring. This is certainly a step in the right direction, but a fundamental improvement needs to be made in home dialysis such that any patient, regardless of education, finances, and social situation, are determined eligible for home hemodialysis (HD) or peritoneal dialysis (PD). For example, peritoneal dialysis patients require space at home to accommodate 70+ liters of fluid required to perform dialysis, which prevents patients with unstable housing or limited space to be offered PD. A solution that creates the dialysate at home and automates delivery would improve access to patients with lower socioeconomic status.
Patients that initiate dialysis in an unplanned fashion, such as in an emergency, unexpectedly, and with a catheter are at increased risk for higher morbidity and mortality and less likely to be able to select the modality that fits their personal preferences. Unfortunately, anywhere from 40-60% of patients start dialysis unplanned (Hassan, 2019). Black individuals with CKD are at 74% greater risk of rapid progression to ESRD compared to whites due to racial disparities and genetic risk factors (Suarez, 2019), which increases risk for unplanned initiation. One possible solution could be to automate timely referral for access and dialysis education supervised by nephrologists.
Given the greater risks for rapid disease progression in non-white CKD patients, innovation should focus on ways to mitigate this. For example, policies that increase priority for patients already on dialysis and technologies that improve screening with automated early referral, supervised by nephrologists, are some ideas that have been proposed to improve health equity. Unfortunately, racial disparities and socioeconomic status make navigating the lengthy transplant evaluation process quite challenging, decreasing the number of minority patients being eligible for transplant. (Reese, 2020) An innovative solution that has been proposed includes using telemedicine technology at in-center hemodialysis treatments to meet with various aspects of the transplant team to expedite referral and evaluation for transplantation.
Big thanks to Carina Seah for her thoughtful suggestions to this article and for inspiring a lot of this exploration through her campaign to end eGFR usage at Mt Sinai with our classmate Paloma Orozco Scott and the support of many residents and faculty.
Dr. Blair and I would love to hear from any readers who have thoughts or interest in brainstorming further on ways to improve kidney care for underserved populations!