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machado: how is it that we live in a world where people are denied the medications they need to survive?

from getting the right diagnosis at the right time, affordable and appropriate treatment and adequate monitoring of disease, patients around the world lack the tools they need to manage their health.

by lisa machado

nov 7 2022

6 minute read

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machado: people are denied the medications they need to survive

wilson merino told the economist that out of the more than 32,000 ecuadorians diagnosed with cancer in 2020, 19,000 were expected to die, partly due to treatment costs. getty

the clock said 2:00. we were waiting in silence for the representative from ecuador to step up to the stage to make his presentation.

in the audience were almost 100 people — leaders of patient organizations that help people living with chronic myeloid leukemia (cml), a rare blood cancer. from zimbabwe and guatemala to denmark and lithuania to the united states and canada, every region of the world was accounted for, and each person had arrived at the conference in marrakech with a suitcase full of worries, things they were trying to change within their country.

the list of the most urgent challenges, in both developing and developed nations, was long and spanned the entire cycle of all that’s needed to manage a disease the right way: the right diagnosis at the right time, affordable and appropriate treatment, as well as adequate monitoring of disease.

there were other issues too, like not having a doctor, the inability to travel the long distances between rural areas and cities to get medical help, and the refusal of doctors to recognize the impact not only of side-effects on their patients’ lives, but also the hefty emotional toll that living with cancer takes on quality of life.

selling his car got one patient 30 days of medication

“p” was about 50. the way his story went was that the government had been paying for his daily leukemia treatment which costs $6,000 each month — financial support that had been discontinued. this left him with no other option than to space out the medication that he already had — one tablet each week, instead of the one every day that was necessary to keep the leukemia at bay (studies have shown that missing just three doses in a month is enough to get a patient into trouble). as time passed, the weeks between doses increased, and when he finally ran out of medication, he sold his car — which was just enough to buy one box of 30 tablets.

“he’s dying,” someone whispered, her voice shaking.

that it wasn’t any of us standing up there, angrily and passionately describing a country uninhabitable for someone needing life-saving cancer medication, not to mention specialized testing — keenly aware of the ticking of time — was perhaps geographic luck, for the moment. in fact, for many patients in regions like latin america, africa and asia, getting access to the treatments they need to survive is virtually impossible without the help of non-profit organizations and advocacy groups. the max foundation is one of these — but even with its extraordinary help, access efforts can be futile.

the barriers to quality cancer care in these regions are mostly similar, almost always having to do with a lack of political will, underdeveloped health systems, funding limitations, no support for research, lack of monitoring, as well as an inability to properly evaluate the effect of treatment interventions.

in ecuador specifically, the health ministry recently approved a national cancer strategy aimed at improving cancer prevention with increased screening and early detection, as well as promoting evidence-based treatment, rehabilitation and palliative care, nilda villacres, the executive director of consejo nacional de salud, the country’s national health council, told the economist.

but there are still many inequities not addressed by the plan, including the fact that ecuador’s high-quality cancer facilities mostly serve people living in urban areas, yet more than one-third of the population live in rural areas. funding medication is another challenge, with 68 per cent of families earning less than us$400 each month, according to wilson merino, the coordinator of red acuerdo nacional contra el cáncer, a cancer coalition of ecuadorian non-governmental organizations (ngos). he told the economist that out of the more than 32,000 ecuadorians diagnosed with cancer in 2020, 19,000 were expected to die.

add to that the fact that out-of-pocket costs of treatment can run as high as almost half of a patient’s spending — a number that, globally, is around 18 per cent — and what you’re left with is odds that are impossible.

medicines don’t grow on maple trees

and it’s not as if patients in canada and the united states are living large when it comes to health care and getting what they need to live well, or simply survive — though it’s sometimes difficult to convince an american that medicines don’t grow on maple trees. in fact, particularly when it comes to cancer and rare disease treatments (even diabetes has seen its own access barriers as patients couldn’t afford the glucose monitors needed to track insulin levels), you don’t have to look too far to find a patient or a caregiver walking the desperate line between pleading with — and demanding that — policymakers prioritize helping canadians stay healthy and alive. lowering the prices of too-expensive treatments, allowing patients who are running out of time access to promising treatments in clinical trials and changing the criteria upon which it’s decided whether or not to recommend funding of a treatment to give more patients a fighting chance are just some of the issues on the to-do list of advocates.

all of this and so much more is also faced by canada’s first nations communities. grappling not only with overwhelming poverty, mental health issues, as well as the irreconcilable damage left by a horrific history that severed connections with traditions, culture, land and ways of life, many don’t even have access to basic rights like food, fresh water or adequate housing, let alone health care. there is also a shortage of health-care providers in these communities, according to the canadian partnership against cancer, and more than 30 per cent of them are further than 90 kilometres from a doctor, access that often requires a plane, increasing the likelihood that a patient won’t seek care.

combine this with flawed information-sharing between health service providers, language barriers, mistrust of western medicine and an inherent lack of culturally-appropriate care, and you’re left with a broken system that’s both ineffective and deadly.

how did we get to this dark place?

listening to “p” tell his story, his shiny bow tie glinting under the bright lights, the room was silent and i couldn’t help wondering how we got to this dark place. how is it that we live in a world in which people are denied the infrastructure they need to be healthy? why are people being denied the medicine they need to stay alive? and how is it that the most a room full of advocates — all of whom driving significant change in their home countries when it comes to cancer care — could do for “p” was listen?

the thing is that while we tend to think of the experiences of others in the world — especially those in far-off places — as different, we are all facing similar struggles and unfairness in varying degrees as consumers of health care, especially when it comes to the kinds of tools we have available to maintain our health and survival. and then there is the end goal that we all share: to live.

as “p” wrapped up his presentation, there was a rumble in the room as people discussed with each other the ways that we could help. it’s just one of the beautiful things of being part of a solid global network — when someone needs help, borders melt away, making room for collaboration and partnerships that hopefully, at best, find solutions for the problem at hand, or at second best, lay tracks for the next patient.

it’s not clear yet what the solution is for “p”, but there’s not much time, and governments are tough nuts to crack, even for a strong, determined global advocacy group. but what’s certain is that everyone has a right to life-saving treatments — whether they live in a different province, or halfway around the world.

the question is, what’s it going to take to get us there?

lisa machado is the executive producer of healthing.ca.

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lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

machado: how is it that we live in a world where people are denied the medications they need to survive?

from getting the right diagnosis at the right time, affordable and appropriate treatment and adequate monitoring of disease, patients around the world lack the tools they need to manage their health.

selling his car got one patient 30 days of medication

'a lifelong challenge': living with a chronic blood cancer like cml changes everything

leukemia: do you know the signs?

medicines don’t grow on maple trees

how did we get to this dark place?

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machado: how is it that we live in a world where people are denied the medications they need to survive?

from getting the right diagnosis at the right time, affordable and appropriate treatment and adequate monitoring of disease, patients around the world lack the tools they need to manage their health.

selling his car got one patient 30 days of medication

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