P.E.I. privacy laws delaying arrival of 'life-changing' cloud-based dialysis machine
CBC
Sarah Newman has been asking the P.E.I. government for two years for a new cloud-based home dialysis machine that she says would be "life-changing" for her and other patients.
But the Charlottetown woman said she has been told, until now, that she can't have the Amia machine with Sharesource — sold by Baxter — because of P.E.I.'s privacy laws.
That's because a patient's information, including details about their treatment, is uploaded from the machine to a cloud, something the P.E.I. government has flagged as a violation of its privacy legislation.
Newman, 31, had a kidney transplant in 2017, but that kidney has started to fail, and she is now on the waiting list for a second kidney transplant.
Newman has been asking for the Amia machine since she went back on dialysis, a treatment that performs some of the functions of healthy kidneys.
While she waits, Newman has opted to do dialysis for about 40 minutes, four times a day, which limits the time she can work at her job as an educational assistant, since she has to come home to do treatments. "My hope starting dialysis two years ago was to do dialysis overnight at home, so that I would be able to work full-time at my job," Newman said.
"I'm currently only able to work for four hours, because I have to come home to do dialysis."
She described the current system has old and outdated.
"It doesn't have the proper settings that I need to be able to do dialysis at night pain-free," Newman said.
"It's very hard to sleep if you're in pain. It's very hard to function in the day, and do the things that you want to do if you're not sleeping."
Newman said the new machine is smaller, and more portable, and would allow her to be able to travel.
"Even just going somewhere for a single night would be easier. It weighs a lot less," Newman said.
"That would be amazing and life-changing, especially when it comes to flying, and in cars. It really does change everything."
Newman said it is frustrating that the current privacy legislation prohibits her from being able to use the Amia machine.
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