by Brad Power, Process Innovator and Cancer Treatment Re-engineer; diagnosed with lymphoma in July of 2018

Summary: The potential of next-generation sequencing to revolutionize cancer treatment by enabling personalized therapies is still more promise than reality. Despite the best intentions of leaders at academic cancer centers, the translation of sequencing technology’s potential into medical practice remains in its infancy, and adoption is excruciatingly slow for people like me with a cancer diagnosis. What is the hold up? Where can the disruptive breakthrough occur? The greatest hope for accelerating personalization in cancer treatment is for people with a cancer diagnosis to educate themselves about their treatment options and be an advocate for their treatment.

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Introduction

In November, I attended the Annual Personalized Medicine Conference at Harvard Medical School, which is organized by the Personalized Medicine Coalition and attended by “the world’s leading researchers, investors, industry executives, policy experts, payers, clinicians, and patient advocates.” I was attending in my role as a journalist, someone who has written over 75 articles for The Harvard Business Review. My specialty is process re-engineering (how technology can enable new ways of work). Following my diagnosis of lymphoma in July, I have focused my research on cancer treatment. For me, improving cancer treatment is personal. I was in the last cycle of my chemotherapy treatment during the time I attended the conference.

One conference attendee went to the microphone during a panel discussion to say that at his institution, they are sequencing all of their patients (with the implication that more institutions should make such a commitment). It happened to be the same institution at which I was getting treatment. I quickly went to the microphone and said, “I am a patient there, and I’m currently getting chemotherapy (as I motioned to my bald head) for lymphoma. I have a deep respect for your institution, and while I’m sure that every patient there is supposed to get sequenced in theory, I must tell you that it is not happening in practice. I had to ask my oncologist three times to get my tumor biopsy sequenced, and on the fourth time I brought it up, he handed me a brochure and said it would be done in the next batch.” I’ve followed up several times to find out when I will get my results, and I’ve been told that it may be three months. About eight or 10 people approached me in the remainder of the conference to tell me that they really appreciated my comments showing the reality vs. the hype of actual patient experiences. Several of these people shared similar stories about a loved one who they were helping navigate through a cancer diagnosis. They, too, faced a lack of interest and dismissal of their attempts to use sequencing information to tailor treatment.

The Slow Adoption of Sequencing to Tailor Treatments

The promise of next-generation sequencing to tailor treatments to everyone with a cancer diagnosis faces the reality of slow adoption as a standard approach. The current system isn’t delivering the potential of personalized cancer treatment — patients aren’t being directed to the best options for them. Adoption is being slowed by (1) the conservatism of health care providers; (2) patients who aren’t aware of next-generation sequencing technology and personalized therapies; and (3) payers who aren’t reimbursing patients and providers for next-generation sequencing.

The Need for Leadership from Health Care Providers, Patients, and Payers

Making sequencing of adequate breadth and depth and the associated personalization of cancer treatment the “standard of care” will require leadership from health care providers, patients, and payers.

• Health care providers must make sequencing and personalization the standard of care, even though it may disrupt their “tried-and-true” processes, overwhelm them with data, face resistance from payers, raise some costs (while saving others), and challenge their traditional patient relationships. They must trust in a process to find the optimal therapy in a more consultative, peer-to-peer relationship.
• Patients and their support teams must educate themselves about treatment options and be advocates for their treatment, including asking for sequencing of adequate depth and breadth (including clinical level whole-genome sequencing of their healthy and tumor tissue, sequencing of their transcriptome RNA, and sequencing of their microbiome).
• Payers must reimburse these sequencing costs, including repetitions, ideally for everyone with a cancer diagnosis but at minimum for everyone with a late-stage cancer diagnosis. While the federal government — The Centers for Medicare and Medicaid Services (CMS) — is paying for sequencing, many commercial insurers haven’t yet followed suit.

Accelerating Personalization in Cancer Treatment

What can we do to accelerate the use of sequencing and personalization in cancer treatment?

Getting providers or payers to change their processes will continue to be a slow road to widespread adoption. I’m hoping that consumer empowerment can be the disruptive force that our health care system needs. At the Personalized Medicine Conference, panelist Michael Pellini, M.D., Chairman of Foundation Medicine and Managing Partner of venture capital fund Section 32, argued that, “​Patients are going to force us to figure this out.”

Many patients aren’t equipped to lead their cancer treatment, but people with a late-stage cancer diagnosis get up the learning curve fast since they are motivated to become engaged leaders of their care. As another panelist, Susan McClure, Founder of Genome magazine, asserted at the Personalized Medicine Conference, “Never underestimate a person’s ability to grasp complex information when their life depends on it.” She led a discussion with Bryce Olson, who is a good example. He said, “I’m a country boy from a small town in Montana. But I came up the learning curve very fast when I was diagnosed with metastatic prostate cancer.” For informed and engaged patients with a cancer diagnosis like Bryce Olson or myself there is no structured process or legal, insurance, or regulatory framework — as there is for oncologists — for us to make critical decisions, even though we are the ones directly affected. So, we must carve our own path.

Here’s what I’m doing, and what I recommend to anyone (a friend or family member) with a late-stage cancer diagnosis:

First, I’m going to capture my health data. The data will include raw sequencing data of sufficient depth and quality for my whole healthy cell genome, my whole cancer cell genome, my microbiome, and my cancer “transcriptome” (RNA). After several requests, my provider is sequencing my tumor sample that came from my biopsy. I’ll get the other data from additional service providers. And I’ve signed up for a clinical trial with a new blood biopsy company to get personalized biomarkers to track my cancer’s progress.

Second, I will release my data to several service providers that specialize in treatment recommendations to get a variety of personalized treatment options.

Who knows what I will find? Hopefully there will be a therapy that is precise, with few toxic side effects, and that supports my native immune system (e.g., tumor-infiltrating leukocytes). Right now, it seems like a personalized vaccine may be the best option. Stay tuned!