Michael Reid Cramer is a twenty-one year old athlete living with two rare conditions. At nineteen, he was diagnosed with hepatosplenic T-cell lymphoma (HSTL), and though in remission from cancer, he has faced several life-threatening complications, including a diagnosis of chronic graft-versus-host disease (GvHD) following a bone marrow transplant. Michael and his mother and caregiver, Ashlee Cramer, use their voices as patient advocates and social media influencers to raise awareness of the challenges of living with rare disease and navigating through the healthcare system, and we are so pleased to be able to help share their story.
We think everyone can take something from Michael and Ashlee’s story, and there are so many important lessons in what they share across the treatment journey – in pharma, in regulation, in healthcare settings, and in support offered to patients and their caregivers. Some takeaways from this conversation include:
- The need for better alignment from his healthcare teams to ‘connect the dots’ more easily between his two conditions
- There is a lack of evidence, research, and knowledge among healthcare providers (HCPs) about his conditions, particularly in his age group
- There is no readily accessible form of support and education for his rare diseases/conditions, especially peer support
- Michael and Ashlee are having to educate HCPs about his condition and rare diseases instead of the other way around
- There is not enough consideration for the need for better drugs with fewer long-term, irreversible side effects for younger patients
- There is no integration of the ‘patient voice and experience’ in the decision-making about treatment choices due to some inflexible protocols
- Patient quality of life is often not considered enough in treatment decisions
- Policy around access to new medication is severely affecting those patients who need them most, and decisions are based on price and ‘lack of good evidence’
Watch some highlight clips on this page or watch the full video here.
Follow Michael and Ashlee for more directly from them:
Podcast – Michael and Mom Talk Cancer
Instagram – @michaelreidcramer and @ashlee_cramer
TikTok – yeahisurf