Why Personalization of Cancer Treatment Isn’t Happening – And What You Can Do About It

Summary

Despite success stories and great potential, the actual use of diagnostic tests and increased data about individuals to tailor their cancer treatment is amazingly low (in the low single digits % of the total patients tested). And the pace of adoption of new technologies to increase personalization is excruciatingly slow. Incumbents (pharmaceutical companies, health insurance companies, regulators, and healthcare providers) are in the way of the disruption that is needed. The path to more rapid adoption is through activated patients and startups trying to hack healthcare. What can you do to accelerate the needed disruption of cancer treatment? Help them!

1. Few Cancer Patients Actually Get Personalized Therapy

Kenna Mills Shaw, a PhD at the prestigious cancer research center MD Anderson, analyzed 2000 of their patients to see whether their tumor DNA was sequenced and whether they got targeted treatments based on that analysis. The bottom line: few (small single digits percentages) did. And this was at MD Anderson, one of the premier academic research centers in the world. Kenna Shaw’s findings were validated by two other studies I stumbled across as I was working on this article: the Personalized Medicine Coalition’s Daryl Pritchard and researchers from Fred Hutch analysis of data from over 5,000 patients with advanced non-small cell lung cancer and a 2015 trial of therapy based on the genetic characteristics of the tumor sponsored by the U.S. National Institutes of Health (NIH-MATCH).

2. Healthcare Industry Incumbents Have Systemic Disincentives for Personalizing Cancer Treatment.

Across industries, we have seen that incumbents are terrible at disruptive innovation. Big institutions – with legacy cultures, people, and processes – will protect their fiefdoms and fortresses first and achieve slow, incremental improvement at best.

Healthcare providers favor tried-and-true approaches (an inherent bias to “do no harm”) and can be overwhelmed by the complexity of exploding data and treatment options. Doctors are very concerned about getting sued by a patient who makes a connection between their advice and a rare bad outcome. Newer approaches like personalized therapies based on DNA sequencing are complicated and complex, and they’re hard to explain. For example, if someone with prostate cancer has his tumor tested and they find an “actionable” mutation, but it’s not for an FDA-approved therapy, there are few providers (or insurers) that would approve an “off-label”, experimental therapy.

Payers (health insurance companies) are slow to reimburse patients and providers for new diagnostic tests and targeted therapies, which are more expensive in the short run. They resist investments in diagnostics and therapies that payout over the long term, when a member may have transitioned to another payer.

Pharmaceutical companies are used to making money from drugs they can manufacture, put on the shelf, and sell widely (“blockbuster” drugs). Personalized cancer treatments represent a business model disruption: they address one patient, or small groups of patients, with the delivery of the personalized therapy directly to the patient. It becomes very difficult to get funding for the massive investment ($1 billion) and a long time to run a prospective, randomized clinical trial (5-10 years), and to assemble cohorts of patients.

Regulators are punished for mistakes (biased to be conservative).

3. Activated Patients and Startups Trying To Hack Healthcare Can Disrupt The Status Quo and Accelerate The Personalization of Cancer Treatment.

To accelerate disruptive innovation, people need to take a more active role in their own care. They (and their close caregivers) need to educate themselves and advocate for themselves. They should find out about the new possibilities of predictive diagnostic tests and targeted therapies, including getting second opinions and finding a “patient advocate”. And they should find and take advantage of innovative industry disruptors. As in the cases of Amazon in retail, Uber in taxi driving, or AirBnB in hotels, the “barbarians at the gates” offer breakthrough services directly to consumers. For example, I have identified dozens of startups across multiple “jobs to be done” for people with a cancer diagnosis, such as finding an online community of experienced peers, finding a doctor, finding a repository for health data, getting more diagnostic tests, getting online second opinions, and donating data to research.

A Call to Action

If you work at one of the industry incumbents and share the view that accelerated industry disruption is needed, you should help educate patients to become advocates for themselves and provide support for the startups hacking the status quo.

I would appreciate any help you could provide in building out my argument. This is heretical — I’m threading a fine line between being provocative and offensive to incumbents.

Do you know of any population studies with data on the actual experience of people who ​(1) are diagnosed with cancer, (2) get their tumor DNA sequenced – %, and (3) get a targeted therapy – %?

Do you have stories you can share or other evidence that support (or contradict) the disincentives I cite for incumbents to rapidly pursue disruptive innovation?​

Do you have stories you can share or other evidence that support (or contradict) my argument that only empowered patients and startups can rapidly drive disruptive innovation?


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