We are in a new situation: Linnea is not doing well.
This session was a “What do we do now?” and “What have we learned?” discussion.
I started recording it in the middle, because I expected we would have a brief meeting to wait for developments, but then people started talking, with content.
Thanks for your continued interest and support for Linnea Olson.
Everything is moving very fast as Linnea tries to recover from the liquid on her left lung, partial collapse, pneumonia, and her cancer becoming very aggressive. (Please see her blog post from July 15 — copied below — for more on her status.)
This weekly update (#15) finds Linnea trying to get access as fast as possible to the 4th generation ALK inhibitor drug from Turning Point, which most agree is her best next treatment.
Linnea was unable to join the weekly call on Friday as she needed to sleep. In her absence, we discussed how she could accelerate the 4 to 5 weeks that is estimated for her to get compassionate use access to the Turning Point drug, and we reflected on lessons we have learned so far in the hackathon, including the need for a roadmap for patients, caregivers, and providers to choose among diagnostic and testing options.
For more, please see my notes from the roundtable discussion below, and the session recording (30 minutes) below.
Please send positive energy Linnea’s way. Watch Linnea’s blog.
Please review and comment on the template for a patient’s decision support tool for testing that Grace Cordovano has shared here.
Here is Linnea’s blog post from July 15:
I am exhausted. Spent, if you will. Therefore today’s blog is a cut and paste–taken from a message I sent out to my siblings and some close friends. Another update. Not the kind I like to give. I had scans and saw both of my oncologists today. In short, it is still a shitshow in my left lung. Pleural effusion, partial collapse, possible pneumonia and a super aggressive cancer (Alice compared scans that were eight days apart and it had grown). And, unfortunately, my fever returned today–still low grade but not a good sign. Next week I shall have a drain installed in my left lung and on the same day, I shall start back on the same drug that likely caused the pleural effusion–TNO-155–at a lower dose and with the hope that if my lung blows up again, we can control it with the drain. My oncologist applied for (and received) compassionate use for the 4th gen ALK inhibitor that I had been precluded from (due to too many prior treatments)–TPX-0131. This is a great scenario as she gets to write the protocol. However, with paperwork it will be four to five weeks until I can start. Our goal–bluntly put—is to try to keep me alive that long. This is brutal, I know. However, I thought it best to let you all know. If things don’t change course, I am wrapping it all up and sooner than I expected. Please know how much I love you all and also that I am going to continue to fight like hell. I just need a miracle And–an ask–please look after my kids. They are having a really tough time–Peter told me tonight he is barely holding it together. In the end, it doesn’t matter how much time you’ve had to prepare. None of us are ready.
Here are my notes from the roundtable discussion with more details:
Accelerating Access for Linnea
Jeff Waldron: It shouldn’t take 4 to 5 weeks. You can do this by phone. If it is an emergency situation, the FDA will approve this compassionate use over the phone. I sent a link to the process (here).
Peggy Zuckerman: Pharmaceutical companies also have processes for compassionate use. Patients get approval 98% of the time.
Grace Cordovano: We don’t have weeks; we have hours and days. This has to be escalated. Why does it take so long? What can we do to help?
Jeff: I reached out to the CEO of Turning Point. I know an expert in compassionate use, Naomi Litchfield, who is based in the UK, and knows about rules in the US.
Kimary Kulig: Her doctors should be using this emergency procedure, but they need to fit it into their workload.
Peggy: Is there anyone at Linnea’s side who can be this person pushing for acceleration and escalation?
Brad Power: There is a named person, but we don’t have access to that person or Linnea’s doctor.
Key Learnings from the Hackathon (Reflections, Retrospective)
Will LaValley: For each patient and hackathon, we should take into account the speed with which a tumor type can turn aggressive and develop a fitting timeline with which we can respond. Biology is often on an S-curve. Once we are going down the steep part of the curve, it is exponential. It can be anticipated. People may not want to discuss it. People should prepare options in parallel, rather than waiting.
Brad Power: We need to have plans and resources in place that we can call on when urgent demands hit. We need to be able to move fast to respond.
Grace Cordovano: We need to make it easier for patients and families to keep track of the complex types of tools, technologies, and tests patients could get, what the benefits of each are, how you select one vs. the other, as you consider cost, tissue management, and turnaround time. Where is there overlap, what is accessible, what is different? If we can take all of the wisdom from the hackathons and make it available to patients as an infographic, that is tumor-agnostic, as a patient decision-support tool. The current disease-specific and diagnosis-specific materials patients get cover the basics, but patients need the more complex information. I will be happy to collaborate and create a spectrum. (Please see Grace’s draft template guide here.)
Jeff Waldron: I would add that providers need this guide too as they are as overwhelmed with the diagnostics and tests as patients and their care partners.
Kimary Kulig: The oncologist will call the shots in the end. In the hackathon we were about putting options on the table with scientific backing and testing options. Does the hackathon want to extend itself into other aspects of care? We are talking about proxies and medical release. Should there be a line? There isn’t much a group like us can do as strangers with physicians. But if individuals step forward and want to get that involved, that would be great.
Brad: We should structure the ideal team structure for the patient, whether the hackathon should be involved or not. We should provide the wisdom to the patient to guide them when they are in territory where they have no map.
Peggy Zuckerman: Patients need someone to speak to doctors on the patient’s behalf, both the medical side and the emotional side.
Will: There is a need for medical guidance, a roadmap of things to think about, and someone to manage relations with all of the people on the medical side. It is an educational challenge, maybe a video or videos.
Brad: I have a manual from Cancer101.org, which provides basic education when people are diagnosed. Grace is right that people need access to deeper knowledge too when they have more complex decisions to make. The NCCN guidelines are good for educating people about the standard of care, and for clinical trials. We need to stand on the shoulders of these good education materials. Personalization makes the needed information very specific very fast. Every cancer has different biomarkers and tests. For example, Bryce Olson needed a PSMA-PET scan, which is specific to prostate cancer. Making anything that is both generalized and specific is complicated and a paradox. How do we create a health learning system?
Sophia Cornew: In the future we should consider partnering with Triage Cancer, a law firm that specializes in the legal issues around cancer care; everything from insurance filling to disability to consent management. Joanna Morales is a terrific lawyer based in DC, and this is her non-profit.
Brad: I’ve been waiting for someone to come forward to help us address the breakdowns we have experienced in having the right patient-friendly consents in place.
Peggy: They have put up a lot of resources that we can all look at.