Super-costly drugs make for tough moral choices

Re: “Woman fighting for her life needs our help,” comment, Sept. 28; “Health Ministry has to make hard choices,” comment, Oct. 1.

The case of 30-year-old Lilia Zaharieva has become a cause célèbre. She belongs to a small subset of cystic fibrosis sufferers — those with the double delta F508 genetic makeup — who can be successfully treated with Orkambi. This wonder drug enabled Zaharieva to become “a new person [with] renewed energy and capacity.”

But it will soon be unavailable to her, due to a decision by her insurance provider to no longer cover it. Now people are writing to Health Minister Adrian Dix urging him to ensure that Zaharieva continues to receive Orkambi. (At least one other resident of B.C. with CF has lost access to Orkambi for the same reason.)

Prof. Eike-Henner Kluge has used Lilia’s case as a teachable moment on the ethics of such situations. He points out “when resources are limited, what is given to one is taken from the other.” He adds that it is not “helpful to appeal to emotions. That might well cloud clear thinking.”

These are instructive observations. They remind us that jobs such as health minister are complex and difficult. At the same time, given the infrequent and isolated nature of the issue at hand (coverage of super-expensive drugs for patients with rare diseases), I find some of Kluge’s arguments too clinical and tidy, seemingly divorced from the dynamic messiness of life, where new developments can whipsaw society with “a constant falling in and out of equilibrium.”

He is especially troubled by the public “pleading” for cases like Zaharieva’s. He says these cases are no “more special than those others with whom one is not acquainted and of whose plight one is not aware.” Furthermore, “the ministry cannot ethically disadvantage others by listening to special pleading on behalf of individuals who have access to the media and have savvy acquaintances and friends.”

But there is considerably more to this pleading than savviness and media access. The particulars of Zaharieva’s case have engaged people’s concern, compassion and sense of justice, and they have been inspired to act. This does not mean that Zaharieva and her case are more important than those of Kluge’s unseen others, but it does mean that her case has emerged in the context of the aforementioned social whipsawing and, as such, provides an opportunity to establish a new equilibrium and to safeguard the rejuvenation Zaharieva has experienced with Orkambi.

Moreover, if Zaharieva were the only CF sufferer with the double delta F508 genetic makeup in B.C. to be denied Orkambi, isn’t that a special circumstance worthy of response?

Finally, Kluge argues that people should not be appealing on Lilia’s behalf “to the ministry but to the public. … Step up and donate!” The problem with this is the amount of money needed and the timeline. As “Lilia has less than two weeks of Orkambi left, and the negative effects of withdrawal can be painful and lifethreatening,” the ministry, as the province’s bastion of health, is the most sensible target.