Vivek Subbiah: Breakdown of a Shocking Fact About Rare Cancers

Vivek Subbiah, Chief of Early-Phase Drug Development at Sarah Cannon Research Institute, shared a post on X:

“TWEETORIAL/X’torial: Why Every Rare Cancer Patient Deserves Molecular Profiling

Here’s a shocking fact: Rare cancers make up 25% of ALL cancer cases, yet most patients never get the molecular testing that could save their lives.

In our policy and practice paper – 20th anniversary of JCO Oncology Practice.

Our position: Comprehensive molecular profiling must be standard care for rare cancers.”

Title: Imperative of Comprehensive Molecular Profiling as Standard of Care for Patients With Rare Cancers

Authors: Vivek Subbiah, Razelle Kurzrock

Read the Full Article on JCO Oncology Practice

“The numbers are staggering:

~200 types of rare/ultra-rare cancers exist

Rare = <15 per 100,000 people

Ultra-rare = <1 per million/year

Yet together they affect MILLIONS of patients worldwide

Each deserves a fighting chance.

Here’s the game-changer: The FDA has approved 9 tissue-agnostic therapies that work across cancer types based on molecular features, not where the cancer started.

But here’s the catch – you can ONLY access them if your tumor gets molecular profiling (NGS)”

Title: The evolving landscape of tissue-agnostic therapies in precision oncology

Authors: Vivek Subbiah, Mohamed A. Gouda, Bettina Ryll, Howard A. Burris III, Razelle Kurzrock

Read the Full Article on CA: A Cancer Journal for Clinicians

“The 9 FDA-approved tissue-agnostic therapies include:

• Larotrectinib/entrectinib for NTRK fusions
• Pembrolizumab for MSI-H tumors
• Dabrafenib + trametinib for BRAF V600E
• Trastuzumab deruxtecan for HER2+ tumors

Without testing = no access”

Title: Tissue-agnostic cancer therapies: promise,reality, and the path forward

Author: Vivek Subbiah

Read the Full Article On Nature

“Why are cancers rare?

Often because there’s only ONE molecular pathway driving them (vs common cancers with multiple drivers).

This makes rare cancers especially good candidates for precision therapy – if we know what to target!

The cruel irony: Traditional drug development fails rare cancer patients because:

• Too few patients for large trials
• Limited commercial incentive
• Poor understanding of biology
• No standard of care for control arms

We need a new approach.”

Title: Designing Clinical Trials for Patients With Rare Cancers: Connecting the Zebras

Authors: Vivek Subbiah, Megan Othus, Jim Palma, Branko Cuglievan, Razelle Kurzrock

Read the Full Article on American Society of Clinical Oncology Educational Book

“The evidence is mounting: Studies like DRUP, SAMBA-101, I-PREDICT show rare cancer patients benefit from molecular matching at the same rates as common cancers.

Clinical benefit rates: ~33% for both rare AND common cancers when matched to therapy!

But isn’t molecular testing expensive?”

NOPE! Costs have plummeted. Studies show precision medicine approaches result in:

• 22% LOWER costs
• 1.3 years LONGER survival

It’s actually MORE expensive NOT to test!

Current reality check: Even for lung cancer with 10 known targets, NGS utilization is shockingly LOW.

For rare cancers? Even worse due to:

• Limited awareness
• Inconsistent guidelines
• Access disparities
• Reimbursement challenges

Professional guidelines exist but they’re:

• Complex and inconsistent
• Leave most rare cancers ‘orphaned’
• Create confusion for oncologists

We need harmonized, clear guidance: Test ALL rare cancers!

Success stories matter: Some patients with MSI-H or high TMB tumors achieve long-term COMPLETE remissions – essentially cures – even with metastatic disease.

These outcomes are only possible WITH molecular profiling.

What should happen at diagnosis for EVERY rare cancer patient:

• Comprehensive NGS (mutations + fusions)
• HER2 testing by IHC
• Germline testing when indicated

Results reviewed by molecular tumor board.

This should be STANDARD, not optional!”

Title: Universal Germline and Tumor Genomic Testing Needed to Win the War Against Cancer: Genomics Is the Diagnosis

Authors: Vivek Subbiah, Razelle Kurzrock

Read the Full Article on Journal of Clinical Oncology

” The bigger picture: Collecting molecular data from rare cancer patients:

• Advances our understanding
• Drives research for new therapies
• Helps future patients
• Builds the learning healthcare system we need

Every test matters!”

Title: Universal Genomic Testing Needed to Win the War Against Cancer: Genomics IS the Diagnosis

Authors: Vivek Subbiah, Razelle Kurzrock

Read the Full Article on JAMA Oncology

“Bottom line: Comprehensive molecular profiling isn’t just “nice to have” – it’s an IMPERATIVE for rare cancer patients.

It’s their pathway to:

• Accurate diagnosis
• Targeted therapies
• Clinical trials
• Hope for better outcomes”

Call to action:

Oncologists: Order NGS for ALL rare cancer patients

Payers: Cover comprehensive profiling

Patients/families: Advocate for testing

Researchers: Continue building the evidence

Every rare cancer patient deserves precision medicine.”

Title: Imperative of Comprehensive Molecular Profiling as Standard of Care for Patients With Rare Cancers

Authors: Vivek Subbiah, Razelle Kurzrock

Read the Full Article on JCO Oncology Practice

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