P.E.I. privacy laws delaying arrival of 'life-changing' cloud-based dialysis machine
'Ideally, I would have had this long ago. This is something that could benefit a lot of people'
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She described the current system has old and outdated.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."
I feel that two years is not an acceptable time frame to wait for something that could significantly change my well-being —Sarah Newman
Newman said it is frustrating that the current privacy legislation prohibits her from being able to use the Amia machine.
"I feel that it should be a decision that the patient gets to make, that we get to share our own data," Newman said.
"We consent to multiple things as a patient all the time, and I don't feel that it should be the government's choice to make the decision of what data we share.... I don't feel that my blood pressure, or how much fluid is going in and out of my stomach is a big deal, if my quality of life can be better."
Cheryl Banks, director of the provincial renal program, said she had been working with Baxter Canada prior to the COVID-19 outbreak, and then again more intensely over the last couple of months, to get the new technology to P.E.I.
"I think the difference here on P.E.I. is our legislation is really geared to protect our patients, and to protect the privacy of their information," said Banks.
"We've been working with our legal counsel so that we make sure that we're clear on who's looking after what piece of that information, to protect our patients."
Banks noted a patient's information, including details about their treatment, is uploaded from the machine to a cloud.
"That's where our concern lies, in making sure that cloud is protected and safe, and only those individuals who should have access to that information are able to access information."
Banks said there are more than 20 patients who are receiving peritoneal dialysis, at home, using an older model of the Baxter machine.
Banks said the newer system has features that makes it more user-friendly, including the ability for her staff to remotely check on patients, without them having to come in to the clinic.
That's where our concern lies, in making sure that cloud is protected and safe—Cheryl Banks, provincial renal program director
Banks said legal counsel on P.E.I. and Baxter are working their way through the privacy concerns, including a privacy impact assessment, and hope to have the new machine available to Island patients early in 2022.
"I'd love to bring it to her for a Christmas present. But we're getting close, and we are continuing to work very hard to make this happen, because we do see that this would be a benefit for our patients," Banks said.
In a statement to CBC News, a spokesperson for Baxter Canada says the company is working collaboratively with Health PEI and hopes to make Sharesource available to patients on P.E.I. as soon as they are able to do so.
Newman said it has been a long wait.
"I feel that two years is not an acceptable timeframe to wait for something that could significantly change my well-being and my daily schedule," Newman said.
"The fact that I would be able to go back to work full-time, and have a lot more freedom with my health than I do right now.... Ideally, I would have had this long ago. I think this is something that could benefit a lot of people."