A University of Auckland lecturer fighting a one-in-a-million disease has to find up to $100,000 a month to stay alive.
Vanessa Enriquez Raido never expected to spend her 44th birthday hooked up to a dialysis machine at Auckland City Hospital on Friday.
Two weeks ago, she was healthy, “feeling 100 per cent” and looking forward to getting stuck back into work after a summer break.
But on Saturday, January 23, she woke vomiting with a severe stomach ache and was unable to retain water.
“It was brutal. At first I thought it was a migraine and then a stomach ache and then maybe early menopause but I couldn’t retain water, I was swollen and had put on 3-4kgs,” she said.
Enriquez Raido was rushed to hospital, where it was discovered she had an extremely rare and life-threatening genetic condition called Atypical hemolytic uremic syndrome (aHUS).
It’s a disease that causes abnormal blood clots to form in small blood vessels in the kidneys, affecting the organ’s ability to function.
She has been hooked up to machines ever since.
“The first week in hospital was a blur, I was vomiting non-stop, being moved from one ward to another.
“I didn’t comprehend it. I thought dialysis for life. I knew the seriousness and I broke into tears.”
The only treatment proven to be effective against Enriquez Raido’s condition is a medicine called Eculizumab, marketed under the brand name Soliris, but it’s not publically available in New Zealand so patients have to pay the full price.
It costs about $100,000 for the first month and then about $60,000 each subsequent month.
But money wasn’t the only hurdle. As there is limited stock of the medicine available in New Zealand, her doctors had to request it from the Ministry of Health under compassionate grounds which took close to two weeks.
“The whole bureaucracy is unfortunate in the sense that this drug had to be administered as soon as possible after the diagnosis, typically within the first two weeks.
“I have been really fortunate to have a medical team who fought really hard for my case. If it hadn’t been for them and the energy they put into fighting for my life I don’t know what would have happened.”
On the day of her birthday, Enriquez Raido was granted one-month supply, which she paid for with her own savings.
Her doctors also put in a request to Pharmac to fund four months’ supply to keep her alive until she is healthy enough to travel to Spain, where she was born and the medicine is subsidised by the government.
That request was declined.
Pharmac’s director of operations Lisa Williams said the agency had so far received 13 Named Patient Pharmaceutical Assessment (NPPA) applications for funding of eculizumab for people with aHUS.
“Unfortunately, while we recognise the rarity and devastating impact of this illness, all NPPA funding applications for ongoing treatment with eculizumab, in the absence of transplant, that have been decided to date, have been declined.”
Williams said while Pharmac staff could negotiate some of the best prices for medicines in the world, Pharmac does not set the price of medicines.
“It is the pharmaceutical companies that are the beneficiaries of high prices. Pharmac aims to give people access to clinically effective and innovative medicines at a price that is fair and affordable, which is in line with what the public expects us to do.
“The people who work at Pharmac want all New Zealanders to live longer, healthier, happier lives. We care about money only because we need to get the best we can out of our fixed budget,” Williams said.
A Givealittle page set up last week to support Enriquez Rado has already raised more than $66,000.
“I really have to fight for my life. I want that drug, there’s a hospital room waiting for me in Spain, I’ve got to fight for my life.
She said the ongoing support she has received from family aboard, her students, strangers and especially her partner has given her the energy to keep going.
“At the end of day, when you know it’s life-threatening you react differently, you really fight hard.”
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