Fiona and Daisy's story (UK)
Fiona is a Trustee at T1International.
“Mummy, I need a wee!”. For the third time on our dog walk, I stopped and found a convenient bush for my three year old daughter, Daisy, to crouch behind. Mild irritation blended with love is pretty much the default state of motherhood, but somewhere inside me a tiny alarm bell was starting to ring. Some months earlier I'd read an article, perhaps in a dentist's waiting room, about a child with undiagnosed type 1 diabetes who'd nearly died. Needing to go to the toilet a lot was one of the symptoms.
“Insulin is as critical to someone with type 1 diabetes as oxygen is to you and I.”
Currently incurable and potentially life-limiting, type 1 diabetes is a non-preventable autoimmune condition. The immune system mistakenly attacks its own insulin-producing beta cells. It leaves those with the condition unable to metabolise carbohydrate without injecting insulin to replace that no longer produced by the body.
A week later, I sat in our GP's surgery being reassured that children with type 1 were generally 'very poorly' at diagnosis as I urged our GP to check, just to be sure. He humoured me, pricked my daughter's finger and squeezed out a tiny drop of blood for analysis in a hand-held meter. I saw him raise both of his eyebrows in surprise and correctly surmised that my Mummy instincts had been worth acting on.
Fast forward seven years and my daughter is happy and healthy. She is a pretty ordinary 10 year old who enjoys school and playing with her friends. She loves riding horses and is a talented young show jumper. Type 1 diabetes is always there in the background. It's a challenging and unrelenting condition to manage, but it doesn't take centre stage in our lives. One reason for this is that insulin and the other essential supplies my daughter needs are available at no cost to us as patients via the NHS.
Insulin is as critical to someone with type 1 diabetes as oxygen is to you and I. Without a constant supply of insulin, a person with type 1 will die a horrible and painful death within days or possibly hours. When patients are forced to ration their insulin, taking less than they should due to unavailability or cost, in addition to the risk of death, they run the risk of horrible complications – loss of limbs, heart failure or loss of sight.
“The idea that I might have to choose between buying groceries and buying insulin for my child is deeply troubling.”
Insulin is cheap to produce and, as an essential medicine, should be widely available at a low cost worldwide. This is not the case. Access to insulin and essential supplies is a significant problem elsewhere in the world, and nowhere more so than in the USA. In America, the for-profit healthcare system has artificially inflated the price to such an extent that a recent survey found that 1 in 4 respondents had been forced to ration their insulin. Without insurance, a person can expect to pay around $1300 per month for their insulin. There have been a number of deaths as a result, and GoFundMe campaigns to raise money for a monthly insulin supply are all too common. Healthcare costs are the leading cause cited by Americans when declaring personal bankruptcy.
The idea that I might have to choose between buying groceries and buying insulin for my child, that I might have to spend hours on the phone arguing with an insurance company just to get the medicine prescribed for my daughter, that I might be the one desperately fundraising on GoFundMe, is deeply troubling. Managing a lifelong chronic condition is challenging enough on its own without having to fight for the medicine that makes it possible as well.
As a recipient of the UK model of healthcare, I can attest that it is a jewel in the crown of the UK. Healthcare free at the point of use is something we should fight to protect, not sell out as part of a desperate new trade deal – for the sake of my daughter and all others like her.