Dear Pediatric Transplant Caregivers and Community,
We are excited to share a significant milestone in our ongoing advocacy efforts for pediatric transplant patients. Recently, a comprehensive advocacy letter was submitted to the Health Resources and Services Administration (HRSA) and the Senate Finance Committee. This letter, a collaborative effort from a large consortium of pediatric medical and advocacy groups, addresses the proposed changes under the OPTN Modernization initiative.
Why This Matters
The OPTN Modernization changes are designed to update and improve the organ transplant system in the United States. While these changes aim to benefit all patients, it is crucial that the unique needs of pediatric patients are specifically addressed. Our children, who face life-threatening conditions and long waits for organ transplants, deserve policies that prioritize their care and improve their chances of receiving timely and appropriate
transplants.
A Unified Voice
The letter to HRSA and the Senate Finance Committee was a result of extensive collaboration among leading pediatric medical experts, advocacy organizations, and patient families. By joining forces, we have ensured that our message is strong and clear: pediatric transplant patients must be a priority in any modernization efforts.
Key Points of the Advocacy Letter
Prioritizing Pediatric Needs: Emphasizing the importance of pediatric-specific criteria and considerations in the organ allocation process.
Ensuring Fair Access: Advocating for policies that prevent disparities and ensure equitable access to transplants for children.
Supporting Families: Highlighting the need for comprehensive support systems for families navigating the transplant journey.
Enhancing Data and Research: Calling for improved data collection and research to inform best practices and outcomes for pediatric patients.
Our Commitment
As caregivers, your support and advocacy are vital. We are committed to keeping you informed about these efforts and encouraging you to stay engaged. Together, we can make a difference and ensure that our children receive the best possible care and support.
How You Can Help
Stay Informed: Keep up-to-date with the latest news and updates about pediatric transplant advocacy.
Get Involved: Participate in local and national advocacy efforts. Your voice matters. Sign petitions like this one Stop For-Profit Takeover of Organ Donation: Make Congress Protect Lives! | MoveOn to show support for the greater transplant community.
Spread the Word: Share information with other families and communities to raise awareness and support for our cause.
We are incredibly proud of the progress we have made and are grateful for the collective efforts of the pediatric medical and advocacy community. Let’s continue to work together to advocate for the needs of our children and ensure that their voices are heard.
Thank you for your unwavering support and dedication.
Warm regards,
Melissa McQueen
Transplant Families
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