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MLA calls on province to help Southern Alberta teen struggling with rare disease
Published Tuesday, October 25, 2016 4:50PM MDT
Last Updated Tuesday, October 25, 2016 7:18PM MDT
A campaign is underway to put pressure on the province to help a High River teen with a rare disease to obtain the drugs she needs to improve and possibly prolong her life.
Hayley Chisholm, 17, was diagnosed with C3 glomerulopathy seven years ago, which causes chronic inflammation in the filters in the kidneys.
“With the disease it makes my body swell up and my ankles and feet and legs and face all get swollen, sometimes my eyes are swollen shut and with the medication I have to miss a lot of school because I’m sick all the time,” said Hayley.
The disease could lead to kidney failure and a transplant is the best treatment but people with the disease often have recurrence in the transplanted organ.
“Right now I have fairly good kidney function and it’s not really irreversible yet but if I get a kidney transplant, if we get to that point where my kidneys are failing, and then I’ll have to have several kidney transplants throughout my life and have more drugs throughout my life so we’re trying to fix it before it gets to that point,” said Hayley.
Haley’s doctor, Julian Midgley, says the drug Soliris could prevent further damage to her kidneys and may stop her from needing a transplant but the treatment costs about $700,000 per year.
The drug has been approved for use in Canada to treat blood conditions in adults but it is not licensed for use on patients with C3 glomerulopathy.
Alberta Health Services is refusing to fund the drug and released a statement saying…
We empathize with this young woman and her family – this is an extremely difficult situation. While we cannot speak to a specific application to the Short Term Exceptional Drug Therapy Program, we can assure Albertans that decisions about drug coverage for rare diseases are made by clinical experts, not politicians. In this case, clinical experts say there is little evidence about this treatment, and it is still considered highly experimental.
Hayley’s doctor disagrees and says he has spoken to physicians who have used the drug to successfully treat people with C3 glomerulopathy.
“The medication is very expensive and the evidence for its use in this disease is not the gold standard randomized controlled trials just because we don't have enough patients to actually do those trials on, because it's so very rare,” said Dr. Midgley, Paediatric Nephrologist at the University of Calgary. “People have used it and had some success with it for her condition.”
“It wasn’t really a huge surprise because it’s so expensive but at the same time, it’s frustrating because the people we’ve asked for help with paying for the drug, it’s like they don’t want to spend money on me. They don’t really see it as curing me, they just kind of see wasting money, it feels like, because it’s just so much money and they don’t want to pay for me but it would help my way of life a lot,” said Hayley.
The family’s private insurer has also refused to cover the treatment and Wildrose MLA Wayne Anderson is now calling on the province to take a look at the special circumstances in this case and provide funding for Haley.
“This young lady has a rare disease and we’re looking at trying to get some support from the provincial government. I mean precedence has been set under the rare diseases program act that others have been compensated and received drugs and medication for their particular illness but in this case the provincial government has refused it and we don’t know why,” said Anderson. “The doctor himself has suggested that we go through the rare diseases program but unfortunately the provincial government is not moving forward. Now precedent has been set where there are opportunities for people to receive the medication that they require under a split compensation plan with the federal government, the provincial government and with the drug company but no one’s pursued that and we’re asking the health minister, please consider this, this young lady’s life is on the line.”
The disease is very rare with an occurrence rate of less than two persons per million and for Hayley it has progressed over the last few years.
“The Soliris would be a much better solution because it could help my disease, which the other treatments will not and haven’t been working, and I won’t have to take handfuls of pills twice a day that have tons of side effects and my life would be just a lot easier if I could get this medication,” said Hayley.
“Despite the treatments we’ve been able to give her so far she’s tended to get a bit worse as time has gone on therefore she’s worried, as her parents are, about the future,” said Dr. Midgley.
Hayley wants to be a nurse and worries the disease will affect her ability to attend classes and tend to patients.
“Last year I had 22 absences in one class because of appointments and being sick and usually about once or twice a semester I get very sick, which is about a week of school missed in one take and then it’s about a month of full recovery,” she said. “Being around sick people while I’m on immunosuppressants is probably not the best idea so I would like to get off of those at some point if I could.”
“We’ve spoken with her doctor and her doctor feels this is necessary for her survival, for her to live. You know, she’s suffered with this for over seven years, her family is distraught, I mean let’s help this young lady. She deserves the attention from our health minister and it’s about time the health minister stepped up and did the right thing,” said Anderson.
“I hope the government realizes that it’s not really a waste of money to spend the money on me. I hope they see me as a person and not coins that they’re spending,” said Hayley. “I have plans to do good things for people.”
Anderson says they have not yet heard back from the province.
(With files from Alesia Fieldberg)