07/26/2026
A Message from the Nikia R. Noisette Sickle Cell Foundation
At the Nikia R. Noisette Sickle Cell Foundation, respect is not optional..it is mandatory!
Let me be very clear: I understand sickle cell pain. I have lived with it my entire life. I know what it feels like to be dismissed, misunderstood, undertreated, and to fight for appropriate care while in excruciating pain.
Because I understand that reality, I will always advocate for patients. But I will never advocate for threatening, intimidating, verbally abusing, or harming healthcare providers.
Never.
God allowed me to witness firsthand the kinds of attitudes and behaviors that can widen the divide between patients and healthcare providers. That experience was eye-opening. It helped me understand why trust is often broken on both sides and strengthened my conviction that our mission must include not only advocacy, but also respect, education, and accountability. I believe God allowed me to see both perspectives so I could help bridge that gap.
As a firm believer in the Word of God, I believe that justice belongs to God and that our responsibility is to advocate with wisdom, integrity, and self-control. As Scripture says:
“Dearly beloved, avenge not yourselves… for it is written, Vengeance is mine; I will repay, saith the Lord.” (Romans 12:19)
If you believe you have been intentionally mistreated, pursue the appropriate avenues for review and investigation. We believe that meaningful change comes through accountability, not intimidation.
We must also remember that many hospitalists and physicians we encounter may be newly trained and relying heavily on what they learned in textbooks, often with limited experience treating sickle cell disease. That doesn’t excuse poor care, but it does remind us that many providers are still learning about sickle cell disease. Our goal is to help close that knowledge gap through education, respectful dialogue, and patient advocacy.
Whenever possible, we should clearly articulate our symptoms, our treatment history, and what has and has not worked for us. Many providers genuinely want to help while also ensuring they are following hospital policies, evidence-based practices, and the standard of care. Their professional licenses and livelihoods are also on the line, and they have a responsibility to make sound medical decisions based on the information available to them.
Our pain is real.
Our frustration is real.
Our fear is real.
But violence, threats, intimidation, and verbal abuse have no place in our community.
Never forget that the people caring for you also carry tremendous responsibility. While we should absolutely expect compassion, competence, respect, and accountability from healthcare providers, we must also extend respect in return.
This foundation will always stand with patients who have been ignored, dismissed, undertreated, or denied appropriate care. We will advocate for better education, greater awareness, accountability, and meaningful reform within our healthcare system.
But we will never compromise our character in the process.
We can be firm without being hostile.
We can demand accountability without intimidation.
We can pursue justice without sacrificing our integrity.
That is how we build trust.
That is how we change healthcare.
That is the standard of the Nikia R. Noisette Sickle Cell Foundation.
