On The Edge
LITTLE Grace O’Malley’s story is nothing but heartbreaking. Despite the daily challenges of living with a muscle-wasting disease, wouldn’t her smile melt a stone? It must melt and then break her family’s hearts every day as her parents, Lorraine and Paul, battle with the cold world of officialdom for a drug to save their beautiful nine-year-old daughter.
Clearly, it didn’t melt the Minister for Health, Simon Harris’s heart when she sent him that lovely letter last year, painstakingly written on Unicorn paper and appended to photographs of her in Disneyland with her little brother, Mark. The magical trip was courtesy of the Make a Wish Foundation.
The photographs were returned in an empty envelope with no acknowledgement.
Well, the bureaucrats in Government buildings are busy fighting other battles – spinning spin, obfuscating, adhering to new data-protection legislation, protecting the body politic from the pesky realities of everyday life for the majority of the citizenry.
TO be fair to Minister Harris, he did respond to her letter – after the meddling media made a bit of a fuss. His reply arrived in the days leading up to Christmas, almost three months after Grace wrote to him and after a front-page story in The Mayo News by our former colleague, Ciara Galvin.
Minister Harris wrote that he was ‘really sorry’ to discover that Grace had sent him a letter and that he ‘hadn’t written back’.
Grace has Spinal Muscular Atrophy (SMA) Type II, and without the drug Spinraza – available in 21 European countries – her prognosis is grim.
After a six-month campaign with other families who grapple with SMA, Lorraine O’Malley finally received a letter from the HSE on Friday, February 22, last, stating that due to cost effectiveness it would not be approving the drug.
Biogen, the pharmaceutical company that manufactures Spinraza, now has 28 days to come back to the HSE with a better price. Meanwhile, Grace is losing her ability to write, to draw, to hold her head up as she sits in her mechanised wheelchair while she waits for the mandarins who will decide her fate to make another move in this poker game.
This is a high-stakes game where big pharma makes enormous profits and health services make decisions underpinned primarily by budgetary concerns.
WE lucky parents of healthy children can only imagine the heartbreak the O’Malleys are enduring. We must always count our blessings; embrace the vicissitudes of raising children positively; teach them to appreciate that old axiom, ‘Your health is your wealth’.
Moreover, in solidarity and support of families that bravely face significant health challenges, it behoves us to hold our public representatives to account. Don’t they take office to represent their constituents? Aren’t they paid big fat salaries so that they can work on our behalf? How often do we have to listen to them droning on about all the work they do for us?
So, when they turn up all smiles on our doorsteps during the upcoming campaign for the local and European elections, let’s ask the hard questions. How can this Government justify the mind-boggling overspend – €450 million higher than the figure of €983 million approved by the Government in 2017 – on the proposed National Children’s Hospital and decline to approve a drug that would ultimately cost them a mere €20 million over a five-year period. Is that not loose change in the Government’s coffers? The life-line of Spinraza would cost €600,000 for Grace O’Malley for the first year, and €380,000 thereafter annually.
Is Grace not worth this? The Mayo News readers think so, Minister Harris.