The Centers for Medicare & Medicaid Services (CMS) has proposed a new rule, which is aimed at increasing kidney transplants for black Americans. On its face, the rule would be a net positive. However, the group Do No Harm sees the potential for complications, and the potential for race-based discrimination is just one of them.
Retired nephrologist Dr. Stanley Goldfarb, chairman of Do No Harm's board, submitted a written comment to CMS objecting to the proposal. Goldfarb believes that more black people should receive transplants, but also states that the "health equity plan" is extremely flawed.
Talking with PJ Media, Goldfarb said that the black population has a disproportionate number of people with chronic kidney failure and who are on dialysis but represents a much smaller number of people who get kidney transplants. He maintains that the program called “Alternative Payment Model Updates and the Increasing Organ Transplant Access (IOTA) Model,” is based on the idea that doctors are not doing enough to convince black people with kidney disease to receive transplants and their family members to become donors.
Goldfarb said the federal government will give healthcare providers financial incentives to strengthen their efforts. The government has couched it in terms of serving people who are under poor economic status. But the underlying motive is that not enough black patients are getting kidney transplants.
The push to increase transplants in the black community, said Goldfarb, is a good thing in and of itself. Transplants are the best possible treatment, allowing people with chronic kidney disease to live longer, and are most effective for the government, which foots the bill for most kidney failure treatments. But he also pointed out there are factors that hinder transplants among the black community.
Goldfarb stated that one such factor is the issue that frequently black people do not seek treatment for kidney disease until it is in an advanced stage. Some contributors to this problem include a lack of access to healthcare, a distrust of the medical community, and a lower level of health literacy. Additionally, they may not receive as much preventive care, testing, or medical supervision as people in other demographics. As a result, by the time a black person seeks treatment, their chances of success are much lower, and they may not be able to undergo the necessary surgery and regimen of medications.
Furthermore, according to Goldfarb, studies indicate that many black people are not interested in having a kidney transplant, and their family members may not want to become donors. He cited one such study in his letter to CMS:
From the beginning of the transplant-seeking process, our study found that blacks began transplant evaluation less willing to get on the deceased donor waitlist, less willing for LDKT (living donor kidney transplantation), and less knowledgeable about the benefits of transplant compared with whites. As patients moved through the transplant process, those patients with less transplant knowledge and motivation to pursue LDKT at transplant onset were ultimately less likely to complete evaluation or receive LDKTs years later. When patients’ initial knowledge and attitudinal differences were controlled in the multivariable modeling, the racial disparity in receipt of LDKTs disappeared.*
A kidney transplant is a long and complicated process with the risk of rejection and the need to take medications for the procedure to be successful. Kidneys, noted Goldfarb, are rare resources, and the recipients need to be committed to the process. He stated that many black kidney recipients are diligent about the process and their aftercare.
However, he also commented that the IOTA rule would encourage many people not to take responsibility for their own health while simply striving to increase the number of black transplant recipients. That may look good on paper for the equity stats for healthcare providers and the federal government, but the success of those transplants would not be known for years. Also, that success could be tainted by non-compliance or disinterest.
Goldfarb believes that more black people with kidney disease should pursue transplants. But rather than creating an incentive-driven equity program, he advocates for efforts to address the root problems. He stated that money and time should go toward educating the black community on the benefits of kidney transplants, the reasons, why families should donate a kidney, why patients should want a transplant, and the need to commit to care plans, as opposed to incentivizing doctors to push people through a program and in the process create shortcuts that could lead to less committed patients getting kidney transplants.
*Waterman AD, Peipert JD, Hyland SS, McCabe MS, Schenk EA, Liu J. Modifiable patient characteristics and racial disparities in evaluation completion and living donor transplant. Clin J Am Soc Nephrol. 2013 Jun;8(6):995-1002. doi: 10.2215/CJN.08880812. Epub 2013 Mar 21. PMID: 23520044; PMCID: PMC3675849.
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