The distress of uncertainty: KPU faculty advocate for fair medical coverage in light of discriminatory practices

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Editor’s Note: The Runner was informed on April 24 that KPU is withdrawing from Manulife’s DrugWatch program.  

When Mazen Guirguis first started using risdiplam to treat his spinal muscular atrophy (SMA) in October 2022, little did he know he would soon be fighting to keep the coverage for this medication, which costs nearly $1,000 a day. 

Guirguis has been an instructor in Kwantlen Polytechnic University’s philosophy department for over 20 years. He was born with SMA, a progressive neuromuscular condition that affects the spinal cord and impacts muscles used for everyday activities like breathing, eating, and walking. SMA is caused by a lack of survival of motor neuron (SMN) proteins, according to the Muscular Dystrophy Association, and has no cure. Medication risdiplam, also known as Evrysdi, helps treat this condition by allowing the body to create more SMN protein. 

When Guirguis first started using risdiplam, he received coverage for the medication through KPU’s medical insurance plan with Manulife. But in April 2023, KPU administration informed the Kwantlen Faculty Association (KFA), the university faculty’s bargaining unit, that it intended to re-enroll in a different medical coverage program — Manulife’s DrugWatch — which doesn’t provide coverage for risdiplam.  

“Since that time, both the KFA and I have been repeatedly asking when this was to take place, without ever receiving an answer,” Guirguis wrote in an email statement to The Runner. 

“I needed to know when administration planned to re-enroll in DrugWatch in order to prepare myself for losing a life-altering medication, for considering options and making future plans. But all I received from leadership was silence.” 

KPU enrolled in DrugWatch in April 2023, which Guirguis says he accidentally discovered in September of that year when undergoing a drug pre-authorization process with Manulife. 

KPU says it’s “committed to providing a working environment that values and promotes respect, human rights, personal dignity, and health and safety for all employees,” reads the university’s website. 

“What I have learned, with a great deal of sorrow and disappointment, is just how empty these words are,” Guirguis wrote. “For 5 months, KPU left me and my family anguishing with uncertainty.” 

Faculty at KPU say the university is participating in discriminatory practices by enrolling in DrugWatch, which analyzes the cost and effectiveness of new medications “to ensure you receive value for your drug benefit dollars,” reads a DrugWatch brochure.

The program evaluates drugs newly approved by Health Canada and are reviewed by non-profit Canadian Agency for Drugs and Technologies in Health (CADTH) based on health outcomes, price, and effectiveness compared to other drugs used for the same condition. Health Canada authorized risdiplam for SMA treatment in April 2021.

“Having experienced the full effects of KPU’s participation in DrugWatch, it is obvious to me that this program was designed to benefit insurers and institutions, not individual recipients of healthcare benefits,” Guirguis wrote, adding that he feels KPU’s leadership has failed. 

“This lack of care, honesty, and empathy, this disrespect of human dignity, this failure to help, ultimately applies to all faculty, for any one of us may find ourselves denied needed medicine because it is not covered under DrugWatch.”  

Guirguis says he’s extended many invitations to KPU but received little direct communication or signs that they are taking his concerns seriously. 

“I find it remarkable that HR has never reached out to ask how DrugWatch has impacted me. To this day I am wondering why KPU administration has not utilized all avenues of information in investigating this matter.” 

The Runner reached out to KPU for a comment about the university’s enrollment in DrugWatch, its history with the program, and Guirguis’ concerns, but they would not provide any information. 

“For privacy reasons, KPU cannot talk about an individual’s personal information, but the university cares deeply about the wellbeing of its employees and has a strong package of resources and benefits in place to support their needs,” Associate Vice-President, People Relations Jenn Harrington wrote in an email statement. 

The Runner also reached out to the KFA, which is currently grieving DrugWatch for a comment, but they declined. 

Guirguis filed a human rights complaint against KPU with President Alan Davis and Vice-President of Human Resources Laurie Clancy as respondents, which the BC Human Rights Tribunal (BCHRT) has agreed to hear. The hearing, which anyone can attend, was not listed on the BC Human Rights Tribunal’s 90-day hearing schedule at the time of publication. 

“I am grateful for being now involved in a process that will provide an accurate picture of the nature of this discriminatory program and of KPU’s handling of this matter,” Guirguis wrote. 

The CBC published a story about the filed human rights complaint in November, and Manulife reached out to Guirguis “immediately after the CBC article was published,” he wrote. 

Manulife extended Guirguis’ risdiplam coverage until December this year under the company’s own “good will,” but once the year is up, Guirguis may lose coverage if KPU doesn’t pull out of DrugWatch.  

The Runner did not hear back from Manulife for a comment about their DrugWatch program and Guirguis’ extended coverage before publication. 

Another faculty member at KPU, who The Runner has given an alias name as Josie, says she has faced coverage challenges when renewing prescriptions this past year.  

Josie has been working at KPU since 1996 in the economics department. She has lymphoma, a cancer of the lymphatic system, and has been taking Venclexta since October 2021, which helps fight the blood cancer and costs about $13,000 a month, she says. 

In November, Josie requested a prescription refill, but the coverage wasn’t approved. 

“I panicked because it was completely unexpected. There was no notification to anybody. I just got a phone call from [my] pharmacy and they told me that somehow the coverage didn’t come,” Josie says. 

This news came 10 days before Josie’s supply would run out, and Venclexta is a drug that needs to be “slowly tapered off to avoid withdrawal symptoms,” she says. 

After contacting her pharmacy, Josie learned she needed to fill out a drug prior approval form, which needs to be signed by a specialist and submitted to Manulife to receive coverage. She says she has to fill out this form once a year, but had just done so in July. 

“When they declined my coverage, … I sent an email to the KFA, and that’s when they informed me about DrugWatch, that [it] might be a result of DrugWatch.”

Even though Josie was able to retain coverage for her medication, she now worries every month when she goes to refill her prescription that she will need to fill out the form again. 

“Every time until I [get] another refill, I’m so nervous,” she says. “The specialists, they’re busy … so you’re never sure how long it’s [going to] take them to sign [the form]. Thinking about this makes me very nervous and panicky.” 

While Josie is still unsure whether the coverage error was a byproduct of KPU’s enrollment in DrugWatch or a mistake on Manulife’s part, she says KPU’s enrollment in the program is imposing stress on faculty. 

“They cannot access the best medication to keep going, to stay employed, to keep working,” she says. 

“When we all contribute towards insurance and have this extended medical insurance that everyone’s paying for, I think it’s outrageous to not receive the latest medicine or the medicine that is the most helpful. It’s very upsetting.”

Christina Behme, an instructor in KPU’s philosophy department since 2018, has known Guirguis since she started teaching there, and says the faculty of arts has tried to raise awareness about their concerns with the program. 

“We are getting the impression that not too many people are actually aware of what’s going on,” Behme says. 

“Without our colleague being affected, I probably wouldn’t have noticed. I think that’s what is really important to stress, that DrugWatch won’t have an effect on most of us, but on those that are affected, it has a really dramatic effect. … We cannot just slip by and see how somebody is suffering.” 

Behme says no one was informed of which medications were covered with DrugWatch, so they asked KPU administration for more information, to which an FAQ sheet was sent out. 

If a drug is turned down during DrugWatch’s review process, “it is common practice for drug companies to provide drugs on a compassionate basis,” according to the FAQ sheet.  

Guirguis wrote the sheet “reads like a promotional campaign” and that many faculty were concerned with the compassionate basis practice.  

“Is this what faculty is reduced to — relying on the compassion of a for-profit company instead of the healthcare plan that was in place when most of us were hired?” he wrote.  

The faculty of arts first started advocating against DrugWatch last spring when the issue was brought to the faculty’s council, KPU philosophy instructor Liam Dempsey wrote in an email statement to The Runner. 

In December, the council passed a motion asking KPU Senate to look into the issue, but the arts faculty council representative “instead talked to the head of the Senate and decided it was not within the Senate’s purview,” Dempsey wrote. 

“Many members were surprised that the motion was not carried out (many thought the Senate should have been the one to decide whether or not it was within its purview).”

The arts faculty council followed this by passing a different motion to write a letter to Davis in February, calling on him to disengage KPU from DrugWatch, which was copied to other administrative bodies at the university. 

“President Davis sent back a very short reply. He essentially on one hand complained that he didn’t like the tone [and] language of the letter, and on the other hand, he said because there’s a court case pending and privacy issues, he couldn’t really tell us anything about what he was going to do,” Behme says. 

“The response we got from President Davis showed that he felt that he was responsible to no one, and that is something that is actually rather scary.”

Behme also wrote a personal letter to Davis last May expressing her concerns with how Guirguis is affected by KPU’s enrollment in DrugWatch, which she shared with The Runner. 

“During your installation speech you told the KPU community that ‘everything we do, and how we live our lives is important.’ Truer words have rarely been spoken. Often, when we see suffering there is nothing we can do,” reads the letter. 

“But you are in a position to end Mazen’s suffering immediately and advice (sic) KPU not to enter Drugwatch. Please use your decision making power in a way you promised you would during your installation speech.”

Behme says she didn’t receive a reply, so she resent it on June 7 and ended up having a conversation with Davis on June 9. 

“He was polite, non-committal and claimed KPU’s reason for getting onto Drugwatch was ‘fiscal responsibility,’” Behme wrote. 

The Runner reached out to KPU media asking Davis for a comment. 

“While we understand faculty and media interest in DrugWatch, a legal process is underway and university administrators are unable to provide detailed responses out of respect for that process and the personal medical information central to it,” Harrington wrote. 

Behme hopes KPU opts out of DrugWatch as soon as possible.

“The way administration has deflected and ignored the issue is just astounding,” she says. “I’m ashamed right now to be an employee of KPU.”

Faculty have created an online petition via change.org calling on KPU’s Board of Governors to address DrugWatch, which currently has 270 signatures. Behme suggests KPU students start their own petition as well.

“You can get your own petition going [because] instructors that have to worry about their health care will maybe not put your needs second, but will not be as good [of] instructors as they otherwise would be,” she says. 

In 2021, the BC Labour Relations Board found Douglas College had violated its collective agreement with instructors by enrolling in DrugWatch and ordered an immediate opt-out, according to the arbitration decision. 

For Guirguis, DrugWatch has harmed him and his family in “immeasurable ways.” 

“Living with the constant threat of being denied a life-altering medication has touched every aspect on my life — including relationships with loved ones, conducting research and contributing to my field, advancing my career, and my ability to enjoy leisure and peace of mind,” he wrote. 

“I have been directly harmed by KPU, but we cannot lose sight of the big picture. There is ongoing uncertainty, not only of my drug coverage, but of the impact of DrugWatch on all people who suffer from rare diseases. As long as new revolutionary drug therapies are denied, everyone working at this university is in danger.”