The threat of Covid-19 has wide ramifications for immunocompromised Kiwis who are considered our most vulnerable.
Malcolm Mullholland leads Patient Voice Aotearoa – a non profit organisation which advocates for people with a range of illnesses who feel they're struggling to be heard.
Alongside his wife Wiki, they helped to succesfully campaign for the funding of three breast cancer drugs in 2018.
Mulholland says dozens of desperate families have called him after donations to their Givealittle pages, for medicines not covered by Pharmac, have dropped off.
"Most of them either have cancer or a rare disorder, they're absolutely stressed, in total despair."
He believes the decline is due to people holding on to their cash in the current economic uncertainty.
Then there are what he calls "medical refugees" - families who had planned to leave New Zealand for countries like Australia where there is better access to medicines. But travel restrictions due to coronavirus mean they're now stuck.
Fiona Tolich advocates for people with Spinal Muscular Atrophy (SMA), a rare motor neurone disease that slowly wastes muscles away.
"It robs people of their ability to sit, stand, crawl, walk and in the most severe cases the muscles used for breathing and swallowing are also affected."
She wants Pharmac to fund more medicines so families don't have to rely on the generosity of donors.
She points to three-year-old Tama, from Taupo, as an example.
Tama lives with his parents on a dairy farm near the famous lake. His mum Lisa Geddes has two other young boys, but what she doesn't have is time, money or whanau with the means to help cover the cost of the drug Tama needs for his SMA.
Tama was the face on an open letter to the Prime Minister earlier this month, signed by 35 advocacy groups, calling for expanded drug funding to give kids like Tama some protection against Covid-19.
Lisa says Tama's health has been rapidly declining in recent months. He now needs a machine to help him breathe overnight.
Because of the lockdown, Lisa has to do all his physio herself. All his medical appointments have been postponed, including one to get him new leg splints which he needs because his legs splay out.
"The moulds need to be taken at the hospital, so he’s in a bit of pain now and it's scary to watch."
He's visited most weeks by a nurse but the cough-assist machine which he also needs is on hold. The machine would allow him to clear his lungs as his muscles are too weak.
Fiona Tolich says an unfunded drug called Spinraza would make the world of difference.
"It's available in 50 countries including Australia and is so effective that SMA is no longer considered a terminal illness in some countries."
As part of the government's $12.1b package to combat Covid-19 announced last month, $500m was set aside for the health sector, mostly targeted at frontline services and the supply of PPE.
There is also a $35m boost for Pharmac to cover the increased cost of some medicines because of the lockdown. Pharmac will also expand the number of medicines it funds as well as easing restrictions on some cancer drugs.
But kids like Tama, who have a rare condition, face an agonising wait to see if Spinraza will also be funded.
For them this coronavirus has added several layers of complexity in already difficult lives - their bubbles are under threat like never before.
For more, watch SUNDAY on TVNZ1 at 7.30pm tomorrow evening.
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