When the Patient Is the Loser

My health insurance has made it possible for my family to remain financially "OK.” It has covered my ongoing treatment for just over three years now, with manageable co-payments and various other charges. There have been runarounds with some services, mostly to do with my children and not the big-ticket item (me).

Even with the overall positive experience, I dread having to call the insurance company. Will they comment on the expense of my care? Will that expense be determined to be too high? Should I plan to do nothing all day except speak to the insurer once I dial those numbers? I know I'm fortunate to have good insurance and that the insurance company's representatives are mostly helpful, polite and kind. But, really, I am at the mercy of my insurer.

This power imbalance was really brought home to me last week when I learned that a major U.S. insurer, Humana, had taken Herceptin off its preferred list in at least one market. Herceptin is a life-changing drug for people with HER2-positive breast cancer, particularly for those with stage 4 disease. It's not an exaggeration to say that Herceptin (often administered with Perjeta) can be credited with the longer overall survival of metastatic breast cancer patients and held up as an example for why research matters. By moving Herceptin from "preferred" to simply "on the formulary,” patients become responsible for the co-pay outlined in their insurance plan, typically 20 percent of the cost. It's no secret that chemotherapy drugs are expensive, and Herceptin is not the exception. A one-year course of Herceptin in 2016 was $64,000 without insurance coverage. At this time, there is no replacement or generic for Herceptin. There is a biosimilar that will likely become available in 2019. But it is January 2018 and even one year of Herceptin co-payments could be enough to drive people to forgo treatment with this standard-of-care drug, or continue its use and endanger the financial security of themselves and their families. These effects of costly cancer drugs are well documented, including here and here. If financial toxicity isn't enough for you, what about literal physical toxicity? A 2016 study at Fred Hutchinson Cancer Research Center found a link between cancer, bankruptcy and early death.

The even worse part of Humana's decision with Herceptin is that there is no guarantee this cost-saving move by one company in one market will be the only such action. Do companies and CEOs feel emboldened by the current social and political environment? I think so, and that is what scares me the most. How soon is it before Herceptin is no longer on my preferred list? How soon before every one of us will have to shoulder costs that put standard care out of reach, despite insurance? As a cancer patient, this whole subject is compounded by pharmaceutical companies and a government that seek to help patients get around higher drug costs rather than addressing the issue in a long-term, available-for-all manner. Yes, it's great when patient X has her drugs paid for through a grant from the company that makes it, but that can't be done indefinitely for every single patient in the United States.

Genentech, the maker of Herceptin, has a page on their website devoted to helping patients afford that drug. It includes information on their own foundation, which provides financial assistance, as well as their co-pay card and contact information to other patient-support organizations that may be able to help defray expenses. This is helpful, while also being enormously depressing. A 2017 study on patient financial assistance programs (PAPs) for cancer drugs found that, "A minority of prescriptions received financial assistance from PAPs. The proportion of financial assistance was small relative to the price billed to insurance. PAPs play a modest role in reducing anticancer prescription-related costs." This is especially interesting to me since I frequently receive e-mails and admonitions from acquaintances and strangers that, as a cancer patient, I can have the drug companies fund my care. This is a completely unrealistic expectation that allows others to pretend there isn't a problem or to believe the problem belongs to the individual patient.

So, Humana has made a first move. The pharmaceutical companies know cost is an issue, but must fund the research that will move treatments forward. The question is how many patients will be the losers.