“When you’ve got skin in the game, you stay in the game… You get hate for it. You get nothing… if you ain’t in the room where it happens.” — from Hamilton
In ‘Out of The Shackles: The Pursuit of Civil Justice in the Face of Psychological Trauma’, Dr. Ulrick Vieux Jr. reminds us that true progress demands presence, resilience, and new epistemologies to re-calibrate 21st-century moral frameworks. Today, that challenge extends to the organ transplant system in America—where fear-driven headlines and policy shock waves run the risk of undermining lifesaving progress. While recent exposé—like those by The New York Times [NYT] citing cases of premature organ retrieval or inequitable distribution—are vital to accountability, they also risk reinforcing damaging narratives that erode public trust. At this pivotal time, we must temper alarm with context, skepticism with data, and critique with community-driven hope.
Yet, recent headlines have cast the transplant system in a chilling light. Reports detail instances where organ procurement allegedly began before death was conclusively confirmed—stories that have left many uneasy. But alongside those moments of scrutiny, the last decade has also brought unprecedented gains in transplantation, particularly through collaboration, innovation, and culturally attuned outreach. The question is whether focusing exclusively on systemic failings, as framed by the Department of Health and Human Services (HHS), risks overshadowing the remarkable, life-saving work achieved by organizations rooted in compassion, ethics, and lived experience.
Questioning the Narrative: HHS, Hype, and Public Trust
In July 2025, NYT revealed disturbing practices in organ procurement: dozens of instances where organ retrieval began while patients still exhibited neurological signs of life, including at least 28 cases where donors had not been declared legally dead [1], [2]. The Washington Post labeled such accounts “fit for a horror movie,” describing a case where a man from Kentucky cried and resisted while being prepped for donation [3].
In response, HHS Secretary Robert F. Kennedy Jr. initiated sweeping reforms: mandating new safety protocols, decertifying under-performing OPOs, and centralizing oversight [1], [3]. Yet, these actions, while necessary, can be read—or misread—as casting the entire organ transplant system and its professionals in a monolithic shadow of ethical failure.
Such framing risks chilling donation interest, especially among communities already hesitant—lack of trust can translate into lives lost. Notably, one report found that following NYT coverage, thousands of Americans de-registered from donor lists [4]. Rather than perpetuating fear, we must re-calibrate the narrative toward reform, recognition of progress, and reassurance that safeguards are strengthening—not dismantling trust.
Progress on the Ground: 2014–2025 Advances in Organ Transplantation
The United States has seen remarkable and steady progress in transplantation over the past decade:
2014: Regulatory recognition of vascularized composite allografts (face, hand transplants) expanded possibilities and pushed ethical, surgical, and immunological frontiers.
2021: The U.S. performed 41,354 transplants, marking one of the highest annual totals to date, an approximate 5.9% increase over the prior year.
2022: The nation surpassed the milestone of one million cumulative transplants in history—a testament to decades of innovation, technology, and coordination.
2024: A record 48,149 transplants were executed—3.3% more than in 2023—with nearly 42,000 from deceased donors and over 7,000 from living donors.
These translated into approximately 39,500 lives saved through recovered organs—equivalent to 132 transplants per day [5]. Meanwhile, over 103,000 Americans remain on wait-lists—and about 13 die per day while waiting [2] [3].
If the U.S. can sustain even a 3–6% annual increase in transplants over the next decade, that could yield 50,000 or more additional lives saved per year by 2035—a testament to what compassionate policy and expanded donation engagement can achieve.
Community-Driven Trust: The Role of Empowered Partnerships
Change is not only emerging from institutions—it is being nurtured at the grassroots by organizations that bring lived experience, cultural intelligence, and ethical clarity to the conversation.
The Muslim Life Planning Institute (MLPI), alongside partners like HRSA, UNOS, MOTTEP, the NKF, IIIT, and FIQH Council of North America, have rebuilt trust from the inside out.
On July 20, 2016, the International Institute of Islamic Thought (IIIT) hosted its first ever Fiqh Forum, concluding that organ donation is permissible in Islam—as ‘sadaqah jaria’ (a perpetual charity)—clearing religious confusion and emboldening outreach in Islamic communities nationwide.
The story of Danielle Shareef, who donated organs after her untimely and tragic death, granted three individuals a second chance at life; and whose life and sacrifice galvanized the Muslim Life Planning Network. Her parents—Gloria and Samuel Shareef—became central figures in the Muslim community as donor parents, bridging faith, remembrance, and advocacy.
Initiatives like Donor Information Days, university symposiums, and culturally tailored breakthrough weekends are transforming dialogue in communities that once avoided the science of transplantation due to mistrust.
These are not stories of institutional failure—but stories of progress, solidarity, and healing. In the rooms where it truly happens, trust is rebuilt person by person.
Re-framing the Narrative: Advocacy Over Alarm
We must push back against coverage that sensationalizes failure at the expense of repairing trust. Media outlets should pair investigatory reporting with stories highlighting ethical vigilance, reform success, and community advocacy.
HHS and transplant agencies should feature transparency not only through audits, but through metrics of increased donation, decreased waiting times, and stories of diverse community engagement.
Community leaders, especially faith-based ones, must be collaborators—not optics—in policy and outreach. Their presence is rooted in shared culture and verified authenticity.
When “skin in the game” isn’t just a lyric—but policies shaped by those who live the outcomes—solutions become not just possible, but lead to progress.
The Long Road Ahead
Healing the organ donation system isn’t about choosing alarm or progress—it’s about weaving both. Acknowledging failures is compassionate when it leads to reform. Celebrating advances is ethical when it inspires renewed commitment.
In that spirit, we reclaim trust by centering the stories, data, humanity, and partnership: the ethical reforms enacted, the thousands whose lives have been saved, and the communities—from mosques to synagogues to churches —who bring both faith and rigor to the gift of life.
To rebuild, we must stay in the room where it happens.
Essay co-written with Samuel Shareef, Principal, MLPI
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