[Ip-health] Big Pharma, my cancer patient and me

Tahir Amin tahir at i-mak.org
Fri May 2 05:06:30 PDT 2014


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.

Compassionate access schemes for these incredibly expensive drugs might
facilitate access for selected patients but they are not truly
compassionate in the way that the average person understands.
Pharmaceutical companies sell an ethically murky 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. If subsidy
looks unlikely, access schemes are retired, sometimes abruptly. When 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,
whose story would anyway never be the stuff of headlines.

You might ask the 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 companies must necessarily recoup the cost of
drug development, as only a small minority succeed in the marketplace.

But for every dollar spent on research, 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 exposed to relentless
advertising that big pharma is their companion in healthcare. The glory
days of advertising saw doctors offered egregious forms 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 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, 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.

Drug companies 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 ever express frustration at the ludicrous wait and are
unfailingly courteous. They 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 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 good.

And to be honest, 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 next patient. These favours are rare but the
younger you are, the more impressionable. No wonder many medical schools
and hospitals have banned pharmaceutical representative visits, hopefully
signalling to doctors that the sandwiches have a hidden cost.

Eventually, I tell 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, 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 the drug company that I
won’t see its representatives in future.

I didn’t expect an acknowledgment but when it came, it sounded like a
thinly veiled warning that the visits were an essential prerequisite to
receiving favours. An incredulous representative exclaims, "you would
really do that, stop seeing us due to what happened with that one patient?"

But "that one 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 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.

It seems only right to start by paying tribute to my patient, while
acknowledging my complicity in the thorny tangle of doctors, patients and
drug companies.

Tahir Amin
Co-Founder and Director of Intellectual Property
Initiative for Medicines, Access & Knowledge (I-MAK)
*Website:* www.i-mak.org
*Email:* tahir at i-mak.org
*Skype: *tahirmamin
*Tel:* +1 917 455 6601/+1 646 884 7418/+44 771 853 9472
*Press: *The Guardian http://tinyurl.com/mooycg5 |The New York Times:

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