Sophia’s Chronic Illness Journey: Forced Switching to Biosimilars in Canada

By Sophia Ali Khan

From Diagnosis to Remission

I was diagnosed with Crohn’s Disease at the tender age of seven in Calgary, Alberta in Canada. This was after I was born with congenital neutropenia, a condition that involves the deficiency of neutrophils, a type of white blood cell that plays a key role in fighting infection and inflammation. After many months of debilitating stomach pains and unexplained weight loss, I was rushed into the OR for an appendectomy, but upon examination, the doctors found Crohn’s Disease.

Being of Pakistani origin, Crohn’s was unheard of so naturally my family and I had to navigate our way through a sea of diagnoses, medications and surgeries. To add to that, my case was unique in that I was already immunocompromised due to congenital neutropenia; hence immunosuppressants like Methotrexate were therefore not the best way to manage my IBD. My gastroenterologist prescribed Prednisone long-term and I went on to be diagnosed with osteopenia at age nine. As such, I took Pamidronate infusions to maintain my bone density and I’ve been taking subcutaneous injections of Neupogen to manage the neutropenia for some time now.

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But the Prednisone didn’t cut it for my Crohn’s. I had my first resection at age 12, my second at 15, my third at 19 and my last one at 25. I received IVIG to maintain my platelet levels; eventually, my spleen had developed antibodies to platelets and needed to be removed.

In between resections, I did a year’s worth of nasogastric (NG) tube feeding and I put in my own tube daily. At age 19, I went into cardiac arrest following a CT scan as I had an allergic reaction to the contrast dye.

Before my last resection, I developed an enterocutaneous fistula. This was by far the most harrowing experience and to this day I struggle with anxiety when I think about the fistula. After surgery, I was started on Remicade. After suffering many side effects and even developing chicken pox, I was told I had developed Remicade-induced Lupus. To avoid further complications, biologics were stopped for 6 months and I eventually began treatment on Humira. Since starting Humira, I have been doing really well these last five years; in fact, I have achieved remission for the first time in my life at age 32. I am extremely grateful to God and my doctors for helping me heal.

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But my journey would be incomplete without mentioning the toll chronic illness took on my childhood and teenage years. I missed out on so much from school to family events, friendships, school field trips and special occasions. I felt isolated and alone at times but then through the kindness of others, I would find the strength to move forward. I became spiritual and found my faith at a young age. That’s when I started to change my perception from a mindset of suffering to that of meeting my challenges head on and becoming a champion.

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Life in Remission

One of my favorite quotations is by Rumi: “What you seek is seeking you.” Once I was in remission, I was able to seek and really pursue my dreams. I became a patient advisor within the Digestive Health SCN and a patient partner with the IMAGINE network. As a patient turned advocate, I realized that my life’s purpose is to serve the IBD community. During this time, I discovered the value of the patient voice and I started to work on strategies to improve patient outcomes for digestive diseases in Alberta.

Forced Switching to Biosimilars

As a patient and advocate, one of the biggest challenges I’m facing is the hotly debated forced medical switching policy Alberta will be instituting come July 2020. Our provincial government is approaching this as a cost savings policy with a stance that patients on Remicade should switch to cheaper biosimilars. But patients, myself included, are protesting this change because per renowned Calgary IBD specialist, Dr. Remo Panaccione, 20-30% of Crohn’s and ulcerative colitis patients who are otherwise stable are expected to experience adverse effects.[i] Even though I’m on Humira, which doesn’t yet have a biosimilar in Canada, I’m very apprehensive as to what this means for the IBD community and for me down the line when there are biosimilars available for Humira in Canada. For many of us, it has been so difficult to quell the disease and for me in particular, I face multiple comorbidities, including congenital neutropenia. And the medication I take for that, Neupogen, is also requiring a forced switch to a cheaper biosimilar this upcoming summer. The thought of switching to a biosimilar for any of my conditions while I’m in remission on my current regimen is not just scary, it could be life-altering and could put me back in the hospital.

The crux of the issue is as citizens living with chronic illnesses, we are struggling to find our way with existing treatment options. Each treatment may have a myriad of side effects like my Remicade-induced lupus. And now we are being told that the treatment that has been working for us will be unavailable and we will have to consider a less costly alternative? At the end of the day, doing so could result in loss of quality of life, inability to perform at work or in school in addition to a greater risk of hospitalization, all of which could add up to greater costs for the government and society as a whole.

So what can we do to lay this controversy to rest? I wish the Albertan government would reconsider and compromise on the terms of this policy to allow patients who are already stable on biologics to continue their treatment with no changes to coverage. The patients waiting to start treatment for their disease can be introduced to biosimilars. Alternatives to insurance coverage should be provided for patients with adequate support to facilitate the process. Compassionate pricing should be offered under insurance company policies. Cost-sharing options should be available for the lowest cost to patients wanting to remain on their biologic.

It should be noted that the biologic manufacturers have offered to price match biosimilar prices but that has gone unaccepted as physicians and patients have fought tooth and nail for coverage of biologics.[ii] It is my firm belief that we should continue to redirect the conversation in the minds of policymakers from cost savings to investment in IBD research across Canada. If Alberta pulls away from the pharmaceutical companies who are offering biological agents at comparable prices to biosimilars, how will research on these existing biologics continue? The funding is necessary so that our researchers can determine the answers to some very complex issues in IBD care.

How Forced Switching Affects Me

As you can imagine, this debate has caused significant anxiety for me. My husband, Muhammad Ali, and I have always been thankful to God for better health for me especially now after seeing me pursue my purpose. With the aforementioned challenges, staying healthy and in remission is a long-fought journey that we have trekked together. I want to be the best version of myself beside him as man and wife and not bedridden in a hospital.

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My wish for 2020 is to continue living my life with authenticity and pursuing affordable treatment that doesn’t sacrifice my health. I feel that after years of instability, I have finally found peace and calm. With the uncertainty of this forced medical switching policy, I feel the anxiety, the dark cloud over my head, creep in and I worry that it may just throw my world into upheaval.

The lyrics of the song by Queen, We Are the Champions, encapsulate my journey and my hope for the future. I can only hope that the Canadian government and public healthcare system will understand what it takes for us to be the champions of our cause and for us to really truly own our Crohn’s and chronic conditions. On behalf of the chronic illness community, I implore the Albertan government to reconsider swapping those of us on biologics to biosimilars for all the reasons mentioned above.

Thank you, Tina of Own Your Crohn’s, for extending this opportunity to me to share my story and advocate on behalf of my fellow Canadian patients.

Yours truly,

Sophia Ali Khan

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[i] https://www.cbc.ca/news/canada/calgary/biosimilars-biogenics-alberta-1.5367187

[ii] https://www.janssen.com/canada/sites/www_janssen_com_canada/files/janssen_statement_on_alberta_governments_biosimilar_initiative.pdf

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~~Love, Light & Peace Always~~