In recent years, lawmakers have rightly turned their attention to promoting racial equity and creating opportunities for the betterment of historically underserved communities.
The urgent need for such improvements is dramatically evident for people with end-stage renal disease (ESRD), or kidney failure. While people of all races and ethnicities develop chronic kidney disease (CKD) at similar rates, ESRD disproportionately impacts people of colour.
Black Americans make up 13% of the US population, but the disparities are stark when you consider that they account for 35% of Americans with kidney failure and are four times more likely to develop this devastating condition than their white counterparts. Similarly, people of other races and ethnicities face disparities compared to the white population.
Although kidney transplantation is the optimal treatment, transplantation rates remain low. Today, more than 90,000 people are waiting for a kidney transplant. Sadly, 13 people die every day while on the waiting list. Given these trends, most people who develop ESRD require dialysis treatments several times a week.
Despite these alarming numbers, the Centers for Medicare & Medicaid Services’ (CMS) latest proposed rule regarding Medicare reimbursement for life-sustaining dialysis has missed an opportunity to support the kidney community by failing to address two central challenges that will limit access to care for all, but particularly impact people of color.
The first challenge is innovation. The kidney patient community has waited years for innovative products that can improve our well-being. There are many health challenges that cannot be solved by dialysis alone. Promising new drug innovations can improve patients’ lives – and CMS should do all it can to promote access to them.
But instead of encouraging innovation, the agency’s proposed rule will stifle new treatment options for people with kidney failure.
While we are pleased that CMS recognises that reimbursement rates drive patient access to innovative therapies, the proposal to provide new funding for only three years does little to address long-term access. It creates a cliff that will mean very few patients will be prescribed a drug even if funding is available, in part because of concerns that patients will have to switch medications or stop taking them altogether when the payment period ends.
In addition, what little additional funding is available would be diluted under the proposal because it would be spread across all patients rather than targeted at those who need the drug. As a result, facilities currently using the eligible drug will be underpaid by 89%, creating a significant financial disincentive for clinics to use this innovative product.
Unless the methodology is changed so that money follows the patient and the Medicare ESRD payment bundle is permanently adjusted to support innovation, people who need dialysis will continue to lack access to innovative treatment options. It also cruelly undermines the hope that innovation brings to the kidney community.
The second major flaw in the proposed rule is that it fails to recognise the staggering inflationary pressures that have negatively impacted the dialysis workforce. Over the past several years, the dialysis care landscape has been transformed by rising labour and medical costs and workforce shortages that directly impact patient access to care. Yet CMS is proposing a reimbursement increase that is well below the rate of inflation – only 1.6% in 2024.
Workforce challenges and shortages are challenging clinics across America, especially in rural and underserved communities that are already operating on razor-thin margins.
We regularly hear from people who are experiencing first-hand the impact of the lack of access to dialysis. They travel long distances for treatment because their local clinic has closed due to staff shortages, or there is a long waiting list to be trained for home dialysis. In other cases, patients are treated in clinics that may not be fully staffed, forcing those clinics to focus on emergencies and limiting or restricting the time they can spend with patients.
CMS’s unwillingness to keep pace with inflation or make meaningful investments in expanding access to new treatments is a slap in the face for people with kidney disease. Those being hit hardest by this flawed approach are people in already underserved communities, including people of color as well as those living in rural areas.
People with kidney disease deserve better. But this proposed rule falls far short of supporting them. In addition, the proposed rule exacerbates existing disparities in access and treatment that disproportionately affect already underserved communities.
CMS should reconsider this proposed rule and find a better way forward. Ideally, one that does not undermine access to care and hope for more than 562,000 Americans who rely on dialysis to survive.
