My Liver Cancer Blog

So, I’ve been very reluctant to share the precise information about how much Zeno costs. I think this reluctance comes from the upper middle class WASP in me: don’t talk about money, don’t talk about how much you paid for something, don’t talk about what you can and cannot afford. I’m embarrassed at how much we are paying for this drug.

But, my husband responded less enthusiastically to my previous post about my first infusion and the private clinic, and eventually he told me that he thought that I had left out one of the most important aspects of this experience, something that is fundamentally integral to the experience, and that is the outrageous cost per dose of this drug. In fact, he was furious — not at me; rather, at the cost of the drug, at the fact that the manufacturer can get away with charging so much, that neither the Ontario health care system nor our insurance company will pay for it. He said that by not being open about the cost I was being one of Foucault’s “docile subjects” — tacitly cooperating with the governmental/pharmaceutical system to discipline me into silence, allowing my embarrassment to stop me from speaking the truth about the cost and the fact that right now the only way to get the drug is to pay for it myself. (We are academics, so we occasionally call each other things like “docile subjects”).

I was still reluctant, but I agreed to talk to my therapist about it. And my therapist is not a WASP, and when I explained the issue and my embarrassment, she said, “You MUST, MUST, MUST share this information.” She agreed with my husband that by staying silent about the cost I was letting the government and the drug manufacturer get away with a lack of accountability to cancer patients. And she said I needed to be open about this, and get over my own cringing embarrassment, not only for myself, but for other patients, especially future patients, who I might be able to help by exposing the current cost of a life-saving drug. “How do you think breast cancer drugs became more accessible and affordable?!,” she asked impatiently, “by staying silent?”

So, the cost per dose of zenocutuzumab is $35,200 (US$25,750), and the protocol is a dose every 2 weeks. Yes, you read that right.

Are you shocked? Well, yes, you should be. It is shocking. I don’t know how the drug manufacturer justifies this — I guess they assume that insurance companies are paying for it, not patients themselves, and mostly they are marketing it in the USA, where it would be insurance companies that are paying for it. And, I imagine they must tell themselves that they need to charge this much to recoup R and D costs. And, knowing that the patient consumer base for this drug is very small (primarily a tiny subset of pancreatic and non-small cell lung cancer patients whose tumours happen to have the NRG1 fusion mutation), they must think they need to charge an exorbitant amount per dose to make a profit.

And, in this particular case, it probably doesn’t help that the company that has the commercial rights to market and sell Zeno in North America (Partner Therapeutics) is very, very small. It is not a large pharma company with deep pockets that might be more willing and able to donate or subsidize the drug or simply charge less per dose to begin with. You can tell just by looking at their website that they are small. They seem to market and sell only 2 drugs. I wish some bigger, richer company would buy them out today. (Or at least that’s what I think I wish. I also feel like I don’t know enough about how all this works to be sure that it would benefit me personally if they were bought out by a big, rich company.)

And my husband and I can’t really afford this. We can afford it for a few months, but after not too long we would have to re-mortgage the house, and our retirement savings would be gone. You might wonder why I have gone down this road at all if I might have to stop taking the drug in a few months. First, as I think I’ve said in previous posts, the literature about this drug says that it can be very effective. I am, in fact, incredibly lucky. Approximately 50% of patients with cholangiocarcinoma don’t have mutations driving their tumours for which there are any drugs. If first line treatment doesn’t work, they don’t have many options. My tumour has a mutation that is both very rare (less than 1% of cholangiocarcinoma patients have it) and “highly actionable” — that is, Zeno exists, and when it works, it works very well, not just keeping tumours stable, but shrinking them. (Shout out to my oncologist who is a researcher, as well as a clinician. He has published about “precision oncology” — that is, treatment based on specific tumour mutations — being where cancer treatment needs to go, and he therefore made sure that thorough genomic testing was done on my tumour). And, the median time to seeing positive effects with Zeno is 1.9 months, so it shouldn’t take very many doses to show that it is working (or not). (That said, it is a median, so 50% of people who saw positive effects saw them before 2 months, and 50% after, but I have no idea how long after….). And, as I’ve said before, our hope is that if it is working, we can share the results with the drug company and the Ontario govt, and put pressure on them not to deny their life-saving treatment to a cancer patient. And, our other hope, probably the best of all possible worlds, is that the drug will shrink the tumour quickly so that I become eligible for surgery. I’ve been in touch with one woman in the USA who was on the drug for only 4 months, saw her tumours shrink by about 80 – 90%, and then had surgery. And this was after her first oncologist told her she had a year to live and there was very little they could do for her (she dumped him). Now she is NED. (No evidence of disease.) (She had to pay for a couple of doses herself before her oncologist managed to convince her insurance company to pay for it).

Anyway, I know some of you will want to help. We may set up a GoFundMe at some point. I will let you know if we go down that road. You may also want to write emails to the company, and I would ask that you not do that yet. (For one, it’s unclear which company to write to. Partner Therapeutics has the commercial rights in North America, but Merus is the actual drug developer, and Merus recently merged with Genmab). My husband and I are attending a conference next week about the approval process for new drugs for rare diseases in Canada. As part of that we will participate in a workshop titled “Navigating Drug Access and Negotiation in Canada” where one of the goals is learning “where and how patient input makes a difference.” In other words, I’d like to wait on putting pressure on the drug manufacturer until (1) I have a better understanding of how the approval process for new drugs works in Canada and what the CORD (Canadian Organization for Rare Diseases/Disorders) people consider best advocacy practices, and (2) we have evidence that the Zeno is working.

Finally I just want to say that I’ve been feeling great lately. At this time last year I felt like crap. I was exhausted and had very bad gastritis symptoms. I really only felt comfortable lying down. But now I feel like myself again. I don’t think this is an indication that the Zeno is working. It’s too soon for that. I think it’s that the chemo-immunotherapy worked to some extent, that I am now recovering from the toxicity of the chemo-immunotherapy, and that I am on the right kinds/doses of blood pressure and thyroid medication. I also know that with this disease how I feel doesn’t necessarily reflect what’s going on with the cancer inside me, and that how I feel could change pretty quickly. For all I know this time right now is the best I will feel for the rest of my life. So I plan to enjoy it!

More soon, probably after the two conferences I will be attending – the Rare Diseases conference in Toronto and the annual Cholangiocarcinoma conference in Salt Lake City.