As anyone with health issues knows, there’s a ripple effect: it’s never ‘just about the patient’. Aida’s husband and children take an active role in helping their mother manage. This can be a bonus and a burden.
Jim is an Opinion Leader who is active in several advocacy groups. As with many patients, Jim feels he is not ‘a medical expert’. Fortunately his sister – a nurse – helps him keep tabs on his health: Jim feels lucky to have his sister ‘interpret’. His observation: everyone needs a support person. However, since many family members have been uncomfortable when he has self-injected in front of them, Jim minces no words when he says: “Family can also be a pain in the ass.”
Stigma, Shame and the Blame Game
The stigma of the perception that the PWD only has ‘himself to blame’ is something Opinion Leaders are often faced with – contributing to shame and self-blame. For many, anxiety is a constant companion, along with the juggling and balancing to maintain the ‘right’ sugars that make up the the day to day reality of a PWD.
Myths and realities
Aida family’s perception of being on insulin is based on myths and misperceptions from generations back. She welcomes becoming more involved as an Opinion Leader and took heart from Heather – an established Opinion Leader and nurse who diagnosed herself 22 years ago. Even with the daily rigors of managing, Heather doesn’t consider herself ‘sick’.
Healthcare Provider Relationships
Beyond each person’s family and social circles, there’s the healthcare world and its inconsistencies. Lori and Heather share what they’ve seen time and again in their role as Opinion Leaders: the ‘credibility’ factor: health care practitioners that PWDs can’t relate to – whether it’s a healthcare professional who is totally out of shape, or in ‘Iron Man’ top condition. This applies across the board: physicians, nurses, foot doctors and even dietitians.
There is much to be learned by PWDs and the world around them: Often there’s the perception that one-size-fits all. That just doesn’t apply to a PWD – where one PWD’s normal may be a ‘6’, for another it’s something else. Heather pointed out, it takes an effort and ‘a lot of talking ’ to establish what’s ‘right’ for each PWD.
In an effort to ensure that all staff get a sense of the day to day for a PWD, her Diabetes Center has every new staff member live for a week like a PWD. They are given props – empty needles and ‘smarties’ for pills. They have to record what they eat and drink and how they’ve exercised. This goes a long way to being more empathetic to the ‘lived experience’ of PWDs.
Government: out of touch with the reality of PWDs
Jim points to larger problems: A Government that’s out of touch with health costs for PWDs– a particular hardship for many who have no insurance coverage.
From Bringing patient centricity to diabetes medication access in Canada:
Those with Type 2 Diabetes spend on average between $723 and $1,914 annually. Seniors pay 36%-70% out of pocket for Type 2 Diabetes treatment.
Future implications for the health system: Canada doesn’t stack up well
Also from ”Bringing patient centricity to diabetes medication access in Canada”
Against international comparisons, Canada also performs poorly with respect to diabetes-related hospitalizations, mortality rates, and access to medications. Diabetes and its comorbidities pose a significant burden on people with diabetes (PWD) and their families, through out-of-pocket expenses for medications, devices, supplies, and the support needed to manage their illness. Rising direct and indirect costs of diabetes will become a drain on Canada’s economy and undermine the financial stability of our health care system.
A personalized approach to medication access, to meet individual needs and optimize outcomes, is also a key enabler. PWD and prescribers need reimbursement approaches that allow them to use existing tools (ie, medications and supplies) to manage diabetes in a timely manner and to avoid and/or delay major downstream complications.