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Failing America’s Bone Marrow Transplant Patients

Executive Summary

Over three thousand Americans die yearly due to a lack of matching bone marrow donors, with the marginalized groups in society taking the total hit. People are reluctant to donate bone marrow to save lives. The United States government recognizes the problem and has enacted a program that includes people requiring bone marrow due to various illnesses, including leukemia and sickle cell (Kanter et al., 2021). The program is not productive enough despite its strong bipartisan support. People are still dying despite the government reauthorizing the program twice. The healthcare stakeholders in hematology have progressively developed measures to ensure that there are donors for the necessary amount of bone marrow to save deserving patients (Kanter et al., 2021). The initial policy that the stakeholders have developed is providing modest incentives to donors to attract them to donate. However, federal law has commenced and declared the offering of incentives to donors as a felony that can be punished for up to five years in state prison anyone found guilty (Kanter et al., 2021). The National Organ Transplant Act manages the compensation for bone marrow transplants as organ sale, and in doing so, it violates equal protection via perceiving renewable bone marrow as nonrenewable; bone marrow should be in the same category as blood which healthcare organizations compensate people for donating and NOTA considers it legal (Kanter et al., 2021).

In addition, the ban violates substantive due procedure with the irrational interference with the autonomy to engage in secure, putative, life-saving, and legal medical procedures. The Ninth Circuit ruled on December 2011, claiming that bone marrow donation compensation should be legal, like blood donation (Kanter et al., 2021). The government also developed the program for donors and recipients. However, the fight is far from over because there are dangers that accompany the donation and receiving that the government should oversee to ensure the safety of all the stakeholders involved (Kanter et al., 2021). Currently, the national registry for donors and recipients is biased, leading to the deaths of patients, especially from marginalized groups in society (CHOC, 2021). Hematopoietic stem cell transplantation is an effective curative intervention for diseases affecting the bone marrow, including sickle cell and leukemia, to restore normal hematopoiesis (CHOC, 2021). Long-term survival and enhanced quality of life for patients needing bone marrow transplants face the development of cancer relapse, infection, and graft against host disease (CHOC, 2021). The government must address the management of patients with neurologic injuries, the nature of transplantation, and the donor’s specifications, including their age (Kanter et al., 2021).

Context and Importance of the Problem

The problem in the United States bone marrow transplant sector is primarily invested in the mass public, healthcare system, and organizations. The initial reason for NOTA to criminalize bone marrow compensation has led people to fear donating bone marrow under the influence that it is nonrenewable. The United States’ program of creating a registry for donors and recipients is a positive idea and measure. However, there are high cases of donors’ mismatch of antigens leading to GVHD, which is the highest cause of transplant-related deaths. The continuous changes in NOTA are not positively impacting the donation of bone marrow because every year, there is an average of 3000 people due to lack of bone marrow due to GVHD transplant, either suffering from sickle cell or leukemia (Ho et al., 2021). The registry program by the United States government in support of patients in need of bone marrow is a positive measure. However, there are limitations to the policy, including a lack of matching donors to recipients and matching people less than those in need (Ho et al., 2021).

Healthcare professionals in hematology aim to acquire advanced health for patients needing bone marrow transplants when conducting transplants. However, there are some instances where there is a mismatch between the donor’s bone marrow and the recipient’s bone marrow that leads to dangerous graft-versus-host disease (GVHD) (Ho et al., 2021). According to studies, hematopoietic stem cell transplantation (HSCT) with non-permissive DPB1 has a high mortality rate (Ho et al., 2021). Haplotype frequencies in bone marrow donors’ registry programs should present the frequencies of potential transplant recipients served by the program. However, a country such as the United States is challenged due to its diverse ethnicities (Halagan et al., 2017).

Ethical Application

Ethics is significant in healthcare practice as it guides the whole practice of caregiving. However, ethics as a branch of philosophy lacks to provide ready-made answers to healthcare questions. However, it offers a system that healthcare professionals can utilize to analyze and resolve a medical-related issue (El-Ghariani & Dalle, 2019). Four principles guide the medical practice, including respect for autonomy, non-maleficence, beneficence, and justice (El-Ghariani & Dalle, 2019). Bone marrow transplant is life-threatening management, and it has severe complications that put lives at significant risk (El-Ghariani & Dalle, 2019). Recipients with severe comorbidities can have major risks in bone marrow transplants to the point of bringing in risks of ineffectiveness in the equation (El-Ghariani & Dalle, 2019). Healthcare practice includes guidelines and information, but applying the information requires support from colleagues, and this aid in striking the desirable balance between expected advantages and latent harm and leads to the use of beneficence and non-maleficence principles (El-Ghariani & Dalle, 2019). The non-maleficence principle refers to deterring activities that may cause harm to patients.

In contrast, beneficence refers to the activities that offer benefits and balance the benefits with the risks and costs of the management (El-Ghariani & Dalle, 2019). The risks of transplant may be very high, but healthcare professionals should consider the best option for the patient with the health issue. In addition, healthcare professionals should consider the consequences of conducting the transplant with inadequate benefits on resources and other patients (El-Ghariani & Dalle, 2019). A procedure with a 10-20% success rate is a worrying source for healthcare professionals, and it also causes a critical point for beneficence and non-maleficence equilibrium. At this point, other ethical principles are utilized (El-Ghariani & Dalle, 2019). The situation leads to respect for autonomy where the patient says what they want to do then the professionals determine whether the transplant will jeopardize the care for other patients or lead to a lack of funding.

Critique of Policy Option(s)

The European Blood and Marrow Transplantation developed the current policies on HSCT, including 20 subjects of the clinical and scientific profession in HSCT. However, no patient stakeholders were involved (Kanter et al., 2021). The commission postulates that children with symptomatic SCD and HLA-matched sibling donors should receive SCT (Kanter et al., 2021). In unrelated donor HSCT, the policy states that healthcare professionals should consider transplants if the patients have at least one major organ-associated complication (Kanter et al., 2021). In addition, the policy states that professionals should conduct unrelated donor transplants in a controlled trial (Kanter et al., 2021). The policy has inherent limitations to the low certainty into points where the panel even discuss recommending future study on various areas affecting the policy (Kanter et al., 2021). The policy if the source of failure in the bone marrow donation program; in cases where patients lack related donors, it is very hard to find matching donors at this point, and even when they are found, the policy states that the transplant is not the first option unless the patient has a major organ complication that increases their death probability.

Policy Recommendations

The policy argues that for patients experiencing recurring pains, healthcare professionals should use matched allogeneic transplantation in place of standard care (Kanter et al., 2021). However, the recommendation or what the policy should revise is that transplantation is an option for patients that fail to respond or have an inadequate reaction after standard care (Kanter et al., 2021).

HSCT is a serious management practice that is not only effective, but it has high risks for patients receiving bone marrow. The main challenges affecting HSCT include a lack of matching donors where patients receive bone marrow that ends up causing GVHD, which has killed many patients in the last few years. The registry should include a system to identify the frequencies of the donors’ HLA and the latent recipients to ensure that the transplant does not lead to adverse effects. The healthcare system should call on bipartisan support and revise the policies after conducting comprehensive scientific research to ensure that the healthcare system in the United States handles and reduces the number of deaths in a year led by bone marrow transplants.

Reference(s)

Kanter, J., Liem, R. I., Bernaudin, F., Bolaños-Meade, J., Fitzhugh, C. D., Hankins, J. S., … & Tisdale, J. (2021). American Society of Hematology 2021 guidelines for sickle cell disease: stem cell transplantation. Blood advances, 5(18), 3668-3689. https://doi.org/10.1182/bloodadvances.2021004394

Three Common Challenges—and Solutions—for Bone Marrow Transplant Success. (2021, October 12). CHOC Provider Connection. Retrieved October 23, 2022, from https://care.choc.org/three-common-challenges-and-solutions-for-bone-marrow-transplant-success/

Halligan, M., Manor, S., Shriki, N., Yaniv, I., Zisser, B., Madbouly, A., & Stein, J. (2017). East meets west—the impact of ethnicity on donor match rates in the Ezer Mizion bone marrow donor registry. Biology of Blood and Marrow Transplantation, 23(8), 1381–1386. https://www.sciencedirect.com/science/article/pii/S1083879117303932

Ho, J. C. Y., Cheung, S. K. F., Lui, Z., Tang, I. W. H., Yang, W., Ip, P., … & Kwok, J. S. Y. (2021). Revisit Optimal Donor Number Estimation in the Hong Kong Bone Marrow Donor Registry. Frontiers in immunology, 969. https://www.frontiersin.org/articles/10.3389/fimmu.2021.638253/full

El-Ghariani, K., & Dalle, J. H. (2019). Ethical issues in HSCT. The EBMT Handbook, 245-249. https://link.springer.com/chapter/10.1007/978-3-030-02278-5_33

Kanter, J., Liem, R. I., Bernaudin, F., Bolaños-Meade, J., Fitzhugh, C. D., Hankins, J. S., … & Tisdale, J. (2021). American Society of Hematology 2021 guidelines for sickle cell disease: stem cell transplantation. Blood advances, 5(18), 3668-3689. https://ashpublications.org/bloodadvances/article/5/18/3668/476988/American-Society-of-Hematology-2021-guidelines-for

 

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