INTRODUCTION: THE NEED FOR PATIENT ADVOCACY IN TRANSPLANTATION

Kidney transplant, considered the best life-saving treatment, has seen a year-on-year increase, but continues to face challenges in gaps of awareness, accessibility and donor availability. To ensure equitable access, timely interventions, and ethical practices in kidney transplantation, observation of the Indian Organ Donation Day on 3rd August should highlight the areas for patient advocacy to play a pivotal role in shaping a better transplant ecosystem.

UNDERSTANDING PATIENT ADVOCACY IN KIDNEY TRANSPLANTATION

Patient advocacy in transplantation should encompass a wide spectrum of activities, including educating potential recipients about best practices of transplant, expectations of life expectancy, treatment options and their rights to influence policy changes that enhance organ donation and allocation1-3. Advocacy efforts must ensure that patients receive holistic post-transplant care, minimizing financial burdens, and combating misinformation2.

THE INDIAN LANDSCAPE: BARRIERS AND OPPORTUNITIES

Despite commendable strides in organ donation policies, India faces challenges such as organ shortages, socioeconomic disparities, and limited awareness4. Advocacy initiatives can help address myths surrounding organ donation, push for better insurance coverage, and streamline the listing process to reduce delays. The recent policy discussions, including “One Nation, One Policy”, provide a unique opportunity to strengthen patient-centered transplantation frameworks5.

PATIENT CHAMPIONS: THE POWER OF LIVED EXPERIENCES

Transplant recipients, donor families, and caregivers can be powerful advocates. Their relatable experiences through shared stories inspire others, dispel fears, and highlight the potential of life-saving organ donation. Structured patient advocacy groups can facilitate peer support, guide newly diagnosed patients, and contribute to policy dialogues, ensuring the patient perspective is always considered6.

BRIDGING THE GAP: THE ROLE OF HEALTH CARE PROFESSIONALS AND POLICYMAKERS

Patient advocacy is most effective when health care professionals and policymakers collaborate. Clinicians can empower patients through shared decision-making, while policymakers can integrate patient-driven feedback into transplant regulations.
Initiatives such as patient advisory boards and public-private partnerships can enhance advocacy efforts, making kidney transplantation more inclusive and accessible7.

MEASURES FOR ENABLING IMPROVED ORGAN DONATIONS

Identifying gaps and creating changes in laws to improve access to those underserved will be the underlying objective. Working within a collaborative framework is important. Policymakers and health care professionals must accept, acknowledge, and appreciate feedback from persons living with donated organs, and those who have donated their organs. Such initiatives will need collective and conclusive decision-making, leading to deployment of capital resource, and creating registries to secure interests of those affected.

THE ROAD AHEAD: STRENGTHENING ADVOCACY FOR BETTER OUTCOMES

A multi-stakeholder approach, integrating patients, health care providers, policymakers, and non-governmental organizations, is essential for sustainable transplant reforms. Digital platforms, patient support groups, and awareness campaigns should be leveraged to create a robust advocacy movement8. The future of kidney transplantation in India depends not just on medical advancements but also on ensuring that patient voices are heard, respected, and acted upon. Patient advocacy can assist in the following areas:

• Donor protection for donors to make informed decisions and ensure their health is also a priority to health care professionals.
• Strict adherence to protocols for transplant procedures in newly established transplant centers.
• Develop strategy for better access to children and women with compromised health conditions. The Living Donor Navigator Program demonstrates that enhanced advocacy and systems training can significantly increase living donor screenings and approvals, potentially mitigating racial disparities. Developing a similar model for India to improve access for women and children may be appropriate9.
• The Donor Action initiative successfully increased organ donation rates by 70% to 160% over 3 years in multiple countries by identifying system weaknesses and implementing targeted improvements. Given the organ shortage in India, adopting this proven model can optimize donation practices, enhance staff training, and drive sustainable growth. Implementing Donor Action in India will ensure a structured, data-driven approach to maximize organ donation potential and save countless lives10.
• Peer-to-Peer Mentoring in Patient Advocacy highlights the effectiveness of peer support in helping patients make informed treatment decisions. In the Indian context, patient advocates would need peer-to-peer mentor training, develop donor-patient testimonials, and integrate it to improved quality of life with a transplant. This would reduce the burden on dialysis and show care improved quality of life of the patients. The limited cadaveric organ donations in the country could be strengthened11.
• Advocacy efforts should focus on raising awareness about brain death, encouraging greater involvement, and guiding individuals through hospital processes using visual aids or structured information systems.
• Promoting the establishment of trauma centers can help save more lives by ensuring timely medical intervention, facilitating the safe and efficient transition of cadaver donations, and providing essential family counseling.
• Despite educational campaigns, organ donation rates have not significantly increased, prompting exploration of alternative approaches. The American Medical Association supports research into donor motivation, including the potential use of financial incentives for cadaveric donation, which are currently prohibited by federal law12.

CONCLUSION: A CALL TO ACTION

As we celebrate Indian Organ Donation Day, let this be a reminder that patient advocacy is not just a concept but a necessity. By strengthening patient engagement, we can build a more transparent, equitable, and efficient kidney transplantation system, ultimately saving more lives and improving post-transplant quality of life.

REFERENCES

• National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Board on Health Sciences Policy; Committee on A Fairer and More Equitable, Cost-Effective, and Transparent System of Donor Organ Procurement, Allocation, and Distribution; Hackmann M, English RA, Kizer KW, editors. Realizing the Promise of Equity in the Organ Transplantation System. Washington (DC): National Academies Press (US); 2022 Feb 25. 4, Confronting and Eliminating Inequities in the Organ Transplantation System. Available from: https://www.ncbi.nlm.nih.gov/books/NBK580030/
• Waterman AD, Gleason J, Lerminiaux L, Wood EH, Berrios A, Meacham LA, et al. Amplifying the patient voice: Key priorities and opportunities for improved transplant and living donor advocacy and outcomes during COVID-19 and beyond. Curr Transplant Rep. 2020;7(4):301-10.
• Grossi AA, Randhawa G, Jansen NE, Paredes-Zapata D. Taking a “Care Pathway/Whole Systems” Approach to Equality Diversity Inclusion (EDI) in Organ Donation and Transplantation in Relation to the Needs of “Ethnic/Racial/Migrant” Minority Communities: A Statement and a Call for Action. Transpl Int. 2023;36:11310.
• Nayak VC, Nayak S. An empirical investigation on the impact of attitudes towards organ donation in India. F1000Res. 2023;12:463.
• Ministry of Health and Family Welfare, Government of India; 2023 Mar 24. HFW/ PQ/One Nation, One Policy for Organ Donation/24March2023/3. Available from: https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1910379
• Joo JH, Bone L, Forte J, Kirley E, Lynch T, Aboumatar H. The benefits and challenges of established peer support programmes for patients, informal caregivers, and healthcare providers. Fam Pract. 2022;39(5):903-12.
• Archdeacon P, Shaffer RN, Winkelmayer WC, Falk RJ, Roy-Chaudhury P. Fostering innovation, advancing patient safety: the kidney health initiative. Clin J Am Soc Nephrol. 2013;8(9):1609-17.
• Ezeilo CO, Leon N, Jajodia A, Han HR. Use of social media for health advocacy for digital communities: descriptive study. JMIR Form Res. 2023;7:e51752.
• Reed RD, Killian AC, Mustian MN, Hendricks DH, Baldwin KN, Kumar V, et al. The Living Donor Navigator Program provides support tools for caregivers. Prog Transplant. 2021;31(1):55-61.
• Roels L, Wight C. Donor action: an international initiative to alleviate organ shortage. Prog Transplant. 2001;11(2):90-7.
• Kha-Moua K, Paulus AB. Patient peer-to-peer mentoring for patients with kidney failure: methods, facilitators, and lessons learned. Nephrol Nurs J. 2021;48(3):227-35.
• Taub S, Maixner AH, Morin K, Sade RM; Council on Ethical and Judicial Affairs, American Medical Association. Cadaveric organ donation: encouraging the study of motivation. Transplantation. 2003;76(4):748-51.