The largest survey of its kind reveals the daily toll of transplant drugs — and the case for rewriting the playbook through advocacy, policy, and innovation
As many of us do, I miss Nieltje terribly. One of her axioms still sticks with me: transplant is not a cure and not everyone wants one. That’s not to diminish how miraculous and restorative transplant are (they are!). Just a good reminder that transplants are complex to manage in their own ways, and the QoL and rehabilitation journey is just beginning after transplant for many. It’s quite frankly a disgrace how little press immunosuppression and its impact on patients has received - you only need to have a few brief conversations with recipients to understand how challenging it can be, especially when the expectation is that they should be healthy and grateful and moving on (toxic positivity, ugh no thank you). Only possible in a world where we have gotten far too comfortable with the narrative that transplant is the cure, maybe because it’s the simple message that feels good. Humanity 🤝 complexity 🤝 empathy = real solutions for people who need them.
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!IXc-!,w_40,h_40,c_fill,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f7142a0-6602-495d-ab65-0e4c98cc67d4_450x450.png)
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!IXc-!,w_120,h_120,c_fill,f_webp,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F9f7142a0-6602-495d-ab65-0e4c98cc67d4_450x450.png)
![Signals From [Space]](https://substackcdn.com/image/fetch/$s_!lBsj!,e_trim:10:white/e_trim:10:transparent/h_48,c_limit,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F0e0f61bc-e3f5-4f03-9c6e-5ca5da1fa095_1848x352.png)
As many of us do, I miss Nieltje terribly. One of her axioms still sticks with me: transplant is not a cure and not everyone wants one. That’s not to diminish how miraculous and restorative transplant are (they are!). Just a good reminder that transplants are complex to manage in their own ways, and the QoL and rehabilitation journey is just beginning after transplant for many. It’s quite frankly a disgrace how little press immunosuppression and its impact on patients has received - you only need to have a few brief conversations with recipients to understand how challenging it can be, especially when the expectation is that they should be healthy and grateful and moving on (toxic positivity, ugh no thank you). Only possible in a world where we have gotten far too comfortable with the narrative that transplant is the cure, maybe because it’s the simple message that feels good. Humanity 🤝 complexity 🤝 empathy = real solutions for people who need them.
So very well said. That 🤝 equation right there is a wonderful one to live by. Thanks for sharing with us, Miriam.