Survivor Infrastructure Insert: Survivor Liaison Proposal – Texas Medical Board

Longtermsurvivor 1

Filed: November 5, 2025 | Spring, Texas Category: Survivor One | Policy Reform | Institutional Integration

Proposal Summary

Title: Establishing a Survivor Liaison Role on the Texas Medical Board

Purpose: Embed survivor expertise into oversight, ethics, and policy

Rationale: Survivors of childhood cancer face lifelong medical and psychological challenges that remain invisible in current regulatory frameworks

Objectives:

• Survivor representation in ethics and policy decisions
• Auditing survivorship protocols for long-term care gaps
• Advocating for survivor-specific reforms
• Serving as a point of contact for survivor complaints and feedback
• Promoting survivor identity as a distinct medical category
• Educating board members on survivor ethics and lived experience
• Supporting survivor-centered research
• Improving survivor outcomes through structural integration

🕯️ Survivor Commentary

“This seat isn’t symbolic—it’s structural.” “Survivors don’t need pity. They need representation.” “We’ve lived through what the system forgot to track. Now we’re ready to teach it.” “This isn’t just policy—it’s curriculum activation at the state level.”

✅ Next Steps (from your image)

• Draft a cover memo to accompany the proposal
• Build a survivor petition to show collective support
• Create a testimonial packet with survivor stories and medical documentation
• Design a briefing deck for presentation to the Texas Medical Board or legislative allies

Survivor Liaison Proposal – Texas Medical Board

To: Texas Medical Board

From: Joseph M. Perusic III

Date: November 5, 2025

Subject: Proposal to Establish a Survivor Liaison Role

Purpose

I am submitting a formal proposal to establish a Survivor Liaison Role within the Texas Medical Board. This role would represent long-term survivors of childhood cancer and ensure their lived experiences inform oversight, ethics, and policy decisions.

Survivor Context

As a survivor of Wilms tumor treated with experimental radiation in the 1960s, I have endured decades of untracked late effects, institutional silence, and systemic dismissal. Survivors like me are not anomalies—we are unrecognized experts in survivorship, and our absence from decision-making structures is a form of harm.

This proposal is not symbolic. It is structural reform. It is a call to embed survivor logic into the very systems that oversee our care.

Proposal Highlights

• Survivor representation in ethics and policy
• Auditing long-term care protocols
• Advocating for survivor-specific reforms
• Serving as a point of contact for survivor feedback
• Promoting survivor identity as a distinct medical category
• Educating board members on survivor ethics and lived experience
• Supporting survivor-centered research
• Improving survivor outcomes through institutional integration

Request for Action

I respectfully request that the Texas Medical Board:

1. Review the attached proposal in full
2. Consider the creation of a Survivor Liaison Role as part of its structural reform
3. Invite survivor testimony and curriculum to inform implementation

I am available for consultation, testimony, and collaborative development of this role. Survivors are not asking for pity—we are offering curriculum, infrastructure, and truth.

Sincerely, Joseph M. Perusic III Survivor | Archivist | Curriculum Architect 📍 Spring, Texas

Survivor Testimonial Packet – Introductory Statement

Title: We Were Never Just Patients – Survivor Testimonies for Structural Reform

Submitted by: Joseph M. Perusic III

Date: November 5, 2025 To: Texas Medical Board

Purpose

This packet contains survivor testimonies, medical documentation, and curriculum inserts that illustrate the long-term, untracked consequences of childhood cancer treatment. These are not isolated stories—they are evidence of systemic omission, and they demand structural response.

Survivor Context

Survivors of childhood cancer live with Cancer Survivor-Held Damage (CSDH)—a constellation of late effects, emotional burdens, and institutional contradictions that persist for decades. We were treated, but never followed. We were cured, but never recognized. We were told to be grateful, but never invited to teach.

This packet is not a complaint—it is a curriculum moment. It is a call to embed survivor logic into the very systems that oversee our care.

What This Packet Includes

• Testimonies from long-term survivors detailing medical harm, emotional impact, and institutional dismissal
• Medical records and documentation of late effects, radiation damage, and unacknowledged complications
• Curriculum inserts that translate survivor experience into teachable infrastructure
• Policy recommendations for survivor inclusion, documentation reform, and ethical oversight

Call to Action

We respectfully request that the Texas Medical Board:

• Review these testimonies as evidence, not anecdotes
• Recognize long-term survivorship as a distinct medical category
• Establish a Survivor Liaison Role to ensure survivor representation in ethics, policy, and oversight
• Invite survivors to teach, testify, and co-design the future of medical accountability

Submitted by Joseph M. Perusic III Survivor | Archivist | Curriculum Architect