Laurie Adami on Life After CAR-T, and the Reality Patients Still Face

CAR-T Saved Her Life. Why Can’t Most Patients Access It?

In today’s episode I was joined by Laurie Adami, cancer survivor, patient advocate, and one of the most impactful voices I’ve had on the podcast.

I first spoke to Laurie a couple of years ago, and her episode is still one of the most listened to we’ve had.

Laurie went through a 12-year cancer journey, six lines of therapy, multiple relapses, clinical trials… and ultimately, in 2018, her 7th treatment, CAR T-cell therapy which saved her life and finally for the first time in 12 years put her in a complete remission.

Now, two years on, she’s back.

Still in a complete remission and requiring no further treatment nearly 8 years post CAR T infusion, Laurie is now considered cured even though her cancer is still labeled incurable.

But what stood out to me in this conversation is that while the science has progressed… many of the systemic challenges patients face haven’t.

We talk about the following:

· What life actually looks like after being “cured” of cancer

· The long-term side effects of 12 years of treatment

· Why most biotech and pharma professionals have never spoken to a patient

· The reality behind “patient centricity” in the industry

· Why 80% of eligible patients still can’t access CAR-T therapy

· The biggest bottlenecks in access - awareness and insurance

· The financial burden of cancer treatment in the US

· Where real progress is being made in cell and gene therapy

· The future of CAR-T in autoimmune diseases and beyond

· Laurie’s memoir and why every biotech employee should read it

This is an honest conversation about the gap between scientific progress and real-world patient impact.

A huge thank you to Laurie for returning to the show and tell her story again! The work she is doing to help raise awareness is inspiring, and I’d urge anyone to connect with Laurie and follow her journey.

If you work in biotech, pharma, healthcare, or you’d like to learn more about the challenges this industry still faces… this is one you need to hear.

Timestamps:

(00:00) A Journey of Survival and Remission

(02:28) Life After CAR-T: Misconceptions and Realities

(05:35) The Ongoing Battle: Side Effects and Daily Life

(08:30) Patient Advocacy: Bridging the Gap with Pharma

(11:00) The Disconnect: Patient Needs vs. Industry Understanding

(13:48) Access and Awareness: The Challenges of CAR-T Therapy

(16:36) The Future of CAR-T: Innovations and Progress

(19:30) Writing a Memoir: Sharing the Patient Experience