Source: Guardian – Ranjana Srivastava.
My patient was refused compassionate access to a cheap chemotherapy. Why? Because pharmaceutical companies are often guilty of selling an ethically murky kind of hope.
After failing two types of chemotherapy for advanced cancer, my patient knew that her lease on life was short, but a cherished family event stood in the way. “My son is going to propose at the Christmas table, I just want to make it there.” Her son has been her anchor throughout her challenge; I could see why his engagement mattered so much. But Christmas was still some months away, and I feared the feat will be difficult.
“I am not afraid to die but I just want to know that I gave it my all.” This is an all too frequent exchange, unfailingly poignant, often heart-wrenching. An entirely reasonable answer would be to gently reiterate the lack of meaningful chemotherapy, broach the benefit of good palliative care, and allow for regret at both our ends. Contrary to popular belief that mythologizes every patient raging against cancer to the very end, for many this discussion eases the burden of expectation and allows for a peaceful end.
But this relatively young mother was simply not ready yet. “I would happily die right after he proposed” she smiled, reminding me that her goalposts had never changed. When a patient like that looks you in the eye, it isn’t easy to separate foreboding statistics and human longing into two neat piles and deny hope.
My head said that another chemotherapy drug wouldn’t make a significant survival difference. But my heart urged me to try, if not to boost survival, then merely to reassure her that she gave it her best shot. Put simply, we both knew that the gesture will be more therapeutic than the drug itself, hardly a rare observation in medicine.
I wrote to a large pharmaceutical company for compassionate access to a common chemotherapy that’s not government subsidised for her precise type of cancer (most likely because patients typically don’t live long enough to need it). It is a relatively old and cheap drug, importantly with manageable toxicity, and I requested a month’s supply to gauge response. I added that the patient does not expect recurrent funding in case she responds to the drug, addressing a legitimate concern. In a world where we frequently push the boundaries or prescribe chemotherapy in more questionable circumstances, I feel comfortable that what I am really doing is asking the company to be my partner in nurturing hope. Which is after all what every pharmaceutical representative has told me for as long as I have known.
So I simply don’t believe it when my request is declined. Thinking this to be a mistake, I protest further up the chain, pointing out to a senior executive that only recently the company had offered me conference sponsorship worth thousands more than the small cost of the chemotherapy. The apologies come fast, but the explanations are notably absent.
My naive puzzlement slowly turns into the realisation that almost every instance where a company has facilitated compassionate access to a product, it has been as a form of marketing as a means of gaining lucrative, government-subsidised listing. In the era of astonishingly expensive blockbuster drugs, government subsidisation is the holy grail of big pharma. The cost of treating a few hundred or even a few thousand patients for free (and in the process, securing the backing of doctors), is negligible when the ultimate prize is full government subsidy. Indeed, individuals and organisations including the UK’s NICE and Australia’s PBS are now questioning the feasibility of subsidising drugs that can cost as much as AU$200,000 a year for ambiguous benefit…read the full story.