A distraught mum stuck in New Zealand with her dying daughter Stella amid the COVID pandemic is begging Prime Minister Jacinda Ardern to save the teen’s life.
The NZ-Australia border closed on March 20 at the beginning of the pandemic, leaving Emily Beswick, 41, and her 15-year old daughter Stella Beswick stranded overseas without her much-needed medication.
Ms Beswick told Real Press in an emotional interview that her family was preparing to move to Australia because Stella’s medication for Spinal Muscular Atrophy (SMA) Type 2, a rare neuromuscular disorder, is not available in NZ.
She had sold their house and were set to fly out to Australia the day after the border shut.
In a heart-felt plea to Ms Ardern, Ms Beswick said time is running out for Stella, who "is currently going downhill” and losing the ability to hold her head up and strength in her arms.
The mum begged the PM to "show kindness and compassion" and not deny Stella her "basic human rights".
"Jacinda, these children are our most vulnerable. They live exceedingly tough lives. Everything is stacked up against them, and it disgusts me that you will not show kindness and compassion,” she said.
“Allow them to stay in their country with their support networks. Allow them to receive treatment and have hope for their futures, have hope of being able to continue to breathe, have hope to continue to chew, and to swallow," Ms Beswick said.
The drug Stella needs is called Spinraza, and while expensive - costing roughly $103,3792 for the first year and $523,651 annually - it “at worst, stops the disease in its tracks,” Emily said.
It is available in 40 countries, including Australia, the US and United Kingdom.
Ms Beswick said if action is not taken soon, her daughter "will most likely die of pneumonia".
The mum said she has tried obtaining compassionate treatment from drug manufacturer Biogen, but "they declined the application."
She pleads that "New Zealand step up and fund the drug. Every moment Stella is not receiving treatment, she is going down hill."
“In New Zealand, around COVID, they have been bandying around the words 'kindness' and 'compassion'. It really feels like a slap in the face, because for us, we don't see any evidence of this,” she said.
Leading cause of genetic death for children
Real Press spoke to Fiona Tolich, 39, the lead advocate for SMA in New Zealand and a Trustee with Patient Voice Aotearoa, a collective of patients, caregivers, advocates and charitable organisations, campaigning for patients' rights.
She slayed the New Zealand's drug agency PHARMAC, claiming it is an antiquated, underfunded organisation that discriminates against rare diseases.
"SMA is the leading cause of genetic death worldwide in children. There are now three treatment options available for I,” Ms Tolich said.
"We place more value on funding flavoured condoms than we do on life-saving treatment,” she added.
Ms Tolich said when SMA sufferers receive treatment they are able to still partake in activities.
Real Press contacted American multinational biotechnology company Biogen, based in Cambridge, Massachusetts, with a request for comment but had, at the time of writing, not received a reply.
Real Press also contacted PHARMAC and was told in a statement from Chief Executive Sarah Fitt that "PHARMAC sought expert clinical advice about a funding application for this treatment in late 2019 and early February 2020.”
"Our advisor’s (sic) recommended the medicine be funded.
"While we recognise the challenges faced by patients and their families, and their understandable desire to try new treatments, our job is to look at all the evidence and make a decision that is in the interests of all New Zealanders.
"PHARMAC has determined that, at this time, we will focus on progressing medicine funding options that are ranked higher than Spinraza."
Do you have a story tip? Email: firstname.lastname@example.org.