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You can find the current article at its original source at http://www.theguardian.com/commentisfree/2014/may/02/big-pharma-my-cancer-patient-and-me
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| Version 0 | Version 1 |
|---|---|
| Big Pharma, my cancer patient and me | Big Pharma, my cancer patient and me |
| (about 1 hour later) | |
| After failing two | After failing two |
| types of chemotherapy for advanced cancer, my patient knew that her lease on | 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 | 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 | 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 | 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. | still some months away, and I feared the feat will be difficult. |
| "I am not afraid | "I am not afraid |
| to die but I just want to know that I gave it my all." This is an all too | 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 | frequent exchange, unfailingly poignant, often heart-wrenching. An entirely |
| reasonable answer would be to gently reiterate the lack of meaningful | reasonable answer would be to gently reiterate the lack of meaningful |
| chemotherapy, broach the benefit of good palliative care, and allow for regret | chemotherapy, broach the benefit of good palliative care, and allow for regret |
| at both our ends. Contrary to popular belief that mythologizes every patient | 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 | raging against cancer to the very end, for many this discussion eases the |
| burden of expectation and allows for a peaceful end. | burden of expectation and allows for a peaceful end. |
| But this | But this |
| relatively young mother was simply not ready yet. "I would happily die right | 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 | 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 | separate foreboding statistics and human longing into two neat piles and deny |
| hope. | hope. |
| My head said that | My head said that |
| another chemotherapy drug wouldn't make a significant survival difference. But my | 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 | 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 | 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 | be more therapeutic than the drug itself, hardly a rare observation in |
| medicine. | medicine. |
| I wrote to a large | I wrote to a large |
| pharmaceutical company for compassionate access to a common chemotherapy that’s | pharmaceutical company for compassionate access to a common chemotherapy that’s |
| not government subsidised for her precise type of cancer (most likely because | 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 | 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 | 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 | 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 | 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 | world where we frequently push the boundaries or prescribe chemotherapy in more |
| questionable circumstances, I feel comfortable that what I am really doing is | 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 | 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. | every pharmaceutical representative has told me for as long as I have known. |
| So I simply don’t | So I simply don’t |
| believe it when my request is declined. Thinking this to be a mistake, I | 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 | protest further up the chain, pointing out to a senior executive that only |
| recently the company had offered me conference sponsorship worth thousands more | recently the company had offered me conference sponsorship worth thousands more |
| than the small cost of the chemotherapy. The apologies come fast, but the | than the small cost of the chemotherapy. The apologies come fast, but the |
| explanations are notably absent. | explanations are notably absent. |
| My naive puzzlement | My naive puzzlement |
| slowly turns into the realisation that almost every instance where a company | 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 | 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 | marketing as a means of gaining lucrative, government-subsidised listing. In |
| the era of astonishingly expensive blockbuster drugs, government subsidisation | 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 | 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 | 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, | 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 | 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. | now questioning the feasibility of subsidising drugs that can cost as much as AU$200,000 a year for ambiguous benefit. |
| Compassionate | Compassionate |
| access schemes for these incredibly expensive drugs might facilitate access for | access schemes for these incredibly expensive drugs might facilitate access for |
| selected patients but they are not truly compassionate in the way that the | selected patients but they are not truly compassionate in the way that the |
| average person understands. Pharmaceutical companies sell an ethically murky | average person understands. Pharmaceutical companies sell an ethically murky |
| kind of hope than what doctors and their patients might understand. The benefit | kind of hope than what doctors and their patients might understand. The benefit |
| to the company must ultimately outweigh the benefit to the individual patient. | to the company must ultimately outweigh the benefit to the individual patient. |
| If subsidy looks unlikely, access schemes are retired, sometimes abruptly. When | If subsidy looks unlikely, access schemes are retired, sometimes abruptly. When |
| a commonplace drug is neither vying for market recognition nor fighting for | a commonplace drug is neither vying for market recognition nor fighting for |
| subsidisation, there is no incentive to provide it to a patient like mine, | subsidisation, there is no incentive to provide it to a patient like mine, |
| whose story would anyway never be the stuff of headlines. | whose story would anyway never be the stuff of headlines. |
| You might ask the | You might ask the |
| obvious question as to why it would take so long for an oncologist to figure | obvious question as to why it would take so long for an oncologist to figure |
| out that a pharmaceutical company is not a charity. The common argument is that | out that a pharmaceutical company is not a charity. The common argument is that |
| companies must necessarily recoup the cost of drug development, as only a small | companies must necessarily recoup the cost of drug development, as only a small |
| minority succeed in the marketplace. | minority succeed in the marketplace. |
| But for every dollar spent on research, | But for every dollar spent on research, |
| nearly twice is spent on lobbying and marketing – and it is also this expense | nearly twice is spent on lobbying and marketing – and it is also this expense |
| that companies want to recover. From the time they are students, doctors are | that companies want to recover. From the time they are students, doctors are |
| exposed to relentless advertising that big pharma is their companion in | exposed to relentless advertising that big pharma is their companion in |
| healthcare. The glory days of advertising saw doctors offered egregious forms | healthcare. The glory days of advertising saw doctors offered egregious forms |
| of largesse, from conferences hosted in ancient castles and on cruises to | of largesse, from conferences hosted in ancient castles and on cruises to |
| lavish dining and entertainment. Then there were the rivers of pens post-it | lavish dining and entertainment. Then there were the rivers of pens post-it |
| notes, stress balls and cute toys to influence prescribing. Regulation is much tighter | notes, stress balls and cute toys to influence prescribing. Regulation is much tighter |
| today, but there is still plenty of money in sponsorships, paid speaking tours, | today, but there is still plenty of money in sponsorships, paid speaking tours, |
| adding one’s credible name to journal articles, and just promoting a drug to | adding one’s credible name to journal articles, and just promoting a drug to |
| one’s peers, especially if you are anointed a key opinion leader. | one’s peers, especially if you are anointed a key opinion leader. |
| Drug companies | Drug companies |
| think nothing of sending a representative to wait for three hours in a clinic | think nothing of sending a representative to wait for three hours in a clinic |
| to spend five minutes with a doctor. Unlike other people, these people never | to spend five minutes with a doctor. Unlike other people, these people never |
| ever express frustration at the ludicrous wait and are unfailingly courteous. They | ever express frustration at the ludicrous wait and are unfailingly courteous. They |
| ask subtly about you, your family and your holidays. They probe your | ask subtly about you, your family and your holidays. They probe your |
| prescribing habit and tell you why your peers prefer their drug. They routinely | prescribing habit and tell you why your peers prefer their drug. They routinely |
| ask what would make it even easier for you to prescribe their drug. It is impossible | ask what would make it even easier for you to prescribe their drug. It is impossible |
| to navigate the discussion towards cost or what makes for the greater societal | to navigate the discussion towards cost or what makes for the greater societal |
| good. | good. |
| And to be honest, | And to be honest, |
| it’s unseemly to be anything but polite towards someone who has waited hours to | it’s unseemly to be anything but polite towards someone who has waited hours to |
| see you, seems genuinely nice, and from whom you might need a favour for your | see you, seems genuinely nice, and from whom you might need a favour for your |
| next patient. These favours are rare but the younger you are, the more | next patient. These favours are rare but the younger you are, the more |
| impressionable. No wonder many medical schools and hospitals have banned | impressionable. No wonder many medical schools and hospitals have banned |
| pharmaceutical representative visits, hopefully signalling to doctors that the | pharmaceutical representative visits, hopefully signalling to doctors that the |
| sandwiches have a hidden cost. | sandwiches have a hidden cost. |
| Eventually, I tell | Eventually, I tell |
| my patient that my request for compassionate access was denied. Crushed, she | my patient that my request for compassionate access was denied. Crushed, she |
| asks if she wasn’t important enough. "That’s not true", I say unconvincingly, "it’s just the way it is." She dies, with a few weeks to go before Christmas, | asks if she wasn’t important enough. "That’s not true", I say unconvincingly, "it’s just the way it is." She dies, with a few weeks to go before Christmas, |
| leaving me to wonder whether the drug might just have bridged the small gap. I | leaving me to wonder whether the drug might just have bridged the small gap. I |
| will never know, but feeling morally compromised by the whole exchange, I tell | will never know, but feeling morally compromised by the whole exchange, I tell |
| the drug company that I won’t see its representatives in future. | the drug company that I won’t see its representatives in future. |
| I didn’t expect an | I didn’t expect an |
| acknowledgment but when it came, it sounded like a thinly veiled warning that | acknowledgment but when it came, it sounded like a thinly veiled warning that |
| the visits were an essential prerequisite to receiving favours. An incredulous | the visits were an essential prerequisite to receiving favours. An incredulous |
| representative exclaims, "you would really do that, stop seeing us due to what | representative exclaims, "you would really do that, stop seeing us due to what |
| happened with that one patient?" | happened with that one patient?" |
| But "that one | But "that one |
| patient" represented the human face of what happens when the interests of a | patient" represented the human face of what happens when the interests of a |
| patient and the pharmaceutical company don’t align. That one patient’s crushed | patient and the pharmaceutical company don’t align. That one patient’s crushed |
| hope felt no less important than the renewed hopes of another. What happened | hope felt no less important than the renewed hopes of another. What happened |
| with that one patient finally opened my eyes to what has gone before. | with that one patient finally opened my eyes to what has gone before. |
| It seems only right | It seems only right |
| to start by paying tribute to my patient, while acknowledging my | to start by paying tribute to my patient, while acknowledging my |
| complicity in the thorny tangle of doctors, patients and drug companies. | complicity in the thorny tangle of doctors, patients and drug companies. |