Many of you signed my petition and followed my fight to access the anti-rejection medication Everolimus after my heart transplant. Thank you for standing with me throughout this journey.

During my advocacy, I discovered that many patients face a similar problem: a medication may be technically approved by insurance, but patients still can't realistically access it because of high out-of-pocket costs, specialty pharmacy restrictions, delays, prior authorizations, network requirements, or other barriers.

I call this a "ghost approval" — when a medication is approved on paper but inaccessible in reality.

To better understand how often this happens and who it affects, I've created a short survey. Responses have already come from transplant recipients, autoimmune disease patients, diabetes patients, heart failure patients, and others.

If you've ever had a medication approved but still struggled to get it, please consider sharing your experience:

🔗 https://forms.gle/cCG9cxW7SVDY8r5x9

Even if this hasn't happened to you, sharing this survey could help it reach someone whose story needs to be heard.

Thank you for continuing to support my advocacy. Together, we can help show that insurance approval does not always mean medication access.