This is part 2 of a series about Milena Khazanavicius, a Halifax woman who is blind and advocates to make the city and province more accessible to people who are blind and partially sighted. In this article, we look at Khazanavicius’s work to make health care more accessible.
On Sunday, January 16, Milena Khazanavicius celebrated the 21st anniversary of her kidney and pancreas transplant. As she always does, she spent the day by herself in a quiet day of reflection.
Since that transplant, Khazanavicius has had to take immunosuppressants so her body doesn’t reject the organs. Those are just two of several prescriptions Khazanavicius takes each day. But Khazanavicius can’t read the prescription bottles and for years has been advocating to make prescriptions more accessible for herself and others who are blind and partially sighted.
“You’re blind. How are you supposed to remember all of this? Which pill is what?” Khazanavicius said told the Examiner in an interview. “You can mark up the bottles, the pills are different shapes, but to try to remember when you’re supposed to be taking what? This stuff is essential and the hospital needs to respond because they’ve not been responding. And it’s not the pharmacists at the hospital. They’re great.”
The prescriptions for those immunosuppressants come from a hospital pharmacy run by Nova Scotia Health, but she has other prescriptions she gets from a Sobeys pharmacy.
The pharmacists there put a code on the bottom of each bottle that Khazanavicius scans with a handheld machine called ScripTalk. Khazanavicius uses a ScripTalk Station, but ScripTalk is also available as an app. According to the company’s website, ScripTalk is a free service available at all pharmacies across Canada and the US. It’s also simple to use. The user scans the code on the prescription through the ScripTalk Station or app and using text-to-talk technology, it reads out the details of the prescription, including the drug name, dosage, instructions, warnings, pharmacy information, doctor name, prescription number, and date.
It’s a simple and safe way to keep track of what medications she’s taking, but Khazanavicius can’t use ScripTalk on those prescriptions for immunosuppressants she gets at the hospital pharmacy because that pharmacy doesn’t provide the code the machine needs to scan.
“I feel that no matter what aspect in the province that is supposed to be fully accessible by 2030, to me, the blind and the partially sighted are still being left behind. The technology is there. The means are there. Provide me with ScripTalk.”
Khazanavicius pointed out that accessibility is written into the Code of Ethics with the Nova Scotia College of Pharmacists.
The Examiner reached out to Nova Scotia Health to ask about accessible prescriptions. Spokesperson Carla Adams asked if the Examiner could put them in contact with Khazanavicius directly to work on a solution.
In December, Khazanavicius told the Examiner she spoke over the phone with Stancy Singh, provincial pharmacy head with Nova Scotia Health. Khazanvicius later told the Examiner that during that call, Singh said providing accessible prescriptions would be too expensive.
Khazanavicius told the Examiner that Singh asked if she could call her pharmacist at Sobeys to learn more about ScripTalk, so she can move her hospital prescriptions to that pharmacy so they could have the ScripTalk code on the bottles.
Khazanavicius gave Singh permission to look into it, but she has concerns with that solution. Khazanavicius receives social assistance, so her prescription costs are covered. But she told the Examiner she was concerned that if Nova Scotia Health moved her hospital prescriptions to the Sobeys pharmacy, the Department of Community Services would ask her for letters to prove she was blind, so she can have her medication costs covered. That means more work for Khazanavicius.
The Examiner spoke with Bev Zwicker, CEO and registrar with the Nova Scotia College of Pharmacists. Zwicker said the college contacted the pharmacists at Nova Scotia Health, who said they worked with Khazanavicius on a solution.
Zwicker said the Code of Ethics for the college sets up professional responsibilities for practicing pharmacists in the province. That includes ensuring accessible and equitable care for all patients.
“The college would expect pharmacy professionals to take reasonable steps to ensure care is accessible to their patients, in what every form that is, depending on the patient,” Zwicker said.
The college is the regulator for community pharmacies in Nova Scotia like those at grocery stores. The pharmacies in hospitals, however, don’t fall under the Pharmacy Act, so those pharmacies are outside the scope of the authority of the Nova Scotia College of Pharmacy.
“We don’t have the authority to address this particular issue directly,” Zwicker said, “as it pertains to how pharmacy is being practiced in the hospital.”
It’s actually the Hospital Act that is the legislative framework that establishes Nova Scotia Health has the oversight of pharmacies in hospitals. However, Zwicker said the college and Nova Scotia Health do collaborate on issues around accessibility.
Khazanavicius hasn’t spoken to Singh since that phone call in December. “If that [what Nova Scotia Health suggested] is a solution, what about everyone else?” Khazanavicius said, adding she wants other to have access to prescription accommodations, too.
In the meantime, she said she plans on writing letters to Nova Scotia Health and the Department of Health and Wellness.
Getting accessible prescriptions isn’t the only issue Khazanavicius faces in the health care system.
Like many Nova Scotians, Khazanavicius gets letters in the mail from her various specialists reminding her of upcoming appointments. But Khazanavicius can’t read these letters. For years, she’s been asking the administrative staff with each doctor’s office, including the transplant clinic, to call her and leave messages with the details of upcoming appointments.
“I’ve been saying, ‘how many blind patients do you have there?’” Khazanavicius said. “I am sure there are six maximum. You need to call me to tell me I have an appointment six months down the road. My letters come in and yes, there is all this technology, but I don’t have the technology to read the letters.”
The technology for phone call reminders already exists.
Currently, patients who have appointments receive a letter in the mail weeks before the appointment, followed by a phone call reminder a day or two before the appointment. The staff at Khazanavicius’s eye physician’s office has been providing phone call reminders for her for years. The situation at other clinics has been more frustrating.
Khazanavicius said it took her almost three years to have the gynecology clinic at the IWK to stop sending her letters and call her with reminders instead. She said she needs to know about appointments well in advance, so she can find someone to attend with her and plan transportation.
“Their letters were coming a week and a half, two weeks before the appointment, which if you try to traverse the IWK, sighted people can’t find their way through the blue train, the yellow train,” Khazanavicius said. “I always take someone to go with me.”
“The last appointment I had, they did call with an appointment after I left them numerous messages.”
Khazanavicius said there is a simple solution: use email. She said she’s has already used systems to book appointments for bloodwork that then send her email reminders.
“Everybody else could be doing that,” Khazanavicius said.
The Examiner asked Nova Scotia Health about the letters for appointments and about accessible options for Khazanavicius. And again, spokesperson Carla Adams responded and said Nova Scotia Health can help flag accessibility needs on Khazanavicius’ files. We did connect Khazanavicius with Adams and Nova Scotia Health, but Khazanavicius hasn’t yet spoken with anyone at Nova Scotia Health.
Still, like the issue with the accessible prescriptions, Khazanavicius said she’d like to see permanent changes for any Nova Scotia who needs any accommodation, not just for herself.
“I am blind, but there are people with reading disabilities, for example, dyslexia,” Khazanavicius said. “Or maybe you’re quadriplegic and your mail comes but you have to wait for someone to assist you.”
“When you don’t have the means and the finances and even little hindrances like this can mess a person’s schedule and pattern up and then you can fall back, and fall back, and your health starts to suffer. It’s just another item you have to deal with and you’re tired.”
Khazanavicius said she feels like blind and partially sighted are an afterthought when it comes to accessibility, even in health care.
“I feel we’re constantly being left at the end,” she said. “Stop leaving us behind.”