Patient Perspective

Biologic treatment has dramatically impacted my life in a positive way. I cannot stress how important this issue is to myself and my fellow Crohn's and Colitis patients, and we need your support. As a pre-law student I was kept from my studies as a result of four separate hospital stays within the span of one and a half years. Since I have switched to a biologic treatment my life has improved significantly and I can continue with work and my studies. I can say without these treatments my quality of life would, without a doubt, decline significantly and I cannot stand for a change that will impact myself and so many others. 

It is my understanding that ministries of health across Canada are presently considering a non-medical switch policy from biologic treatment to biosimilar for people with Crohn's disease or ulcerative colitis. As my representative in the Legislature, I implore you to consider the thousands of people in our province that such policy will affect.

Crohn's and colitis are complex, lifelong chronic diseases that sometimes take years to control with limited treatment options. Having someone who is not your doctor decide that you should be switched from a medication that has finally allowed for some semblance of quality of life is not okay. Please do not put the health of those living with these diseases on the line. Leave the medical decisions to our doctors. Crohn's and Colitis Canada along with gastroenterologists, through the Canadian Association of Gastroenterology, do not support this non-medical switch policy.

I am counting on you to represent me and convey my message to your colleagues in government, in particular the Minister of Health. This is of critical concern to me and I hope that you will ensure that our province does not consider a non-medical switch policy now or in the future.

As a registered nurse in Alberta and the sister of a brother who has severe ulcerative colitis and as a supporter of the UCP, I am severely concerned about your decision to switch from biologic treatment to a biosimilar as I have directly witnessed the impact this has had on my brother's health. My brother is a hardworking father of two beautiful children and actively contributing to society in his work. Their life would not be possible if he was not able to receive the treatment he receives every six weeks to treat his condition. I have watched him suffer in the times when nothing else except the biologic treatment has provided with the quality of life required to give back to society and maintain a career and an ability to look after his wife and children. There is no guarantee that the biosimilar alternative will work and the suffering of moving from drug to drug to try to find something that will work is exhausting to a busy parent and active member of society. I am not sure if you are aware but I believe that Alberta has the highest rates of IBD in the world. You need to respond to the needs of the population that you are serving. If these biosimilar alternatives do not work for the thousands of patients in Alberta, your costs will increase for the complications that may occur and surgeries that will be induced by not having access to the proper medication treatment. Please think again about your decision and consider the young patients and families who suffer as a result of your decisions. 

It is my understanding that ministries of health across Canada are presently considering a non-medical switch policy from biologic treatment to biosimilar for people with Crohn's disease or ulcerative colitis. As my representative in the Legislature, I implore you to consider the thousands of people in our province that such policy will affect.

Crohn's and colitis are complex, lifelong chronic diseases that sometimes take years to control with limited treatment options. Having someone who is not your doctor decide that you should be switched from a medication that has finally allowed for some semblance of quality of life is not okay. Please do not put the health of those living with these diseases on the line. Leave the medical decisions to our doctors. Crohn's and Colitis Canada along with gastroenterologists, through the Canadian Association of Gastroenterology, do not support this non-medical switch policy.

I am counting on you to represent me and convey my message to your colleagues in government, in particular the Minister of Health. This is of critical concern to me and I hope that you will ensure that our province does not consider a non-medical switch policy now or in the future.

With sincere concern, 

Ann

I am a 36 year old Albertan who was diagnosed with ulcerative colitis about 12 years ago. I have struggled to achieve, and then maintain, remission of my disease over the majority of this time, which has included two hospitalizations. At least four different medications have failed, including two biologics. I have now been stable on Remicade, my third biologic medication, for the last 2.5 years, and I am the healthiest I have been in over a decade. 
  
It is my understanding that ministries of health across Canada are presently considering a non-medical switch policy from biologic treatment to biosimilar for people with Crohn's disease or ulcerative colitis. As my representative in the Legislature, I implore you to consider the thousands of people in our province that such policy will affect.

Crohn's and colitis are complex, lifelong chronic diseases that sometimes take years to control with limited treatment options -- this is true of my own story. Having someone who is not your doctor decide that you should be switched from a medication that has finally allowed for some semblance of quality of life is not okay.  

Please do not put the health of those living with these diseases on the line. Leave the medical decisions to our doctors. Crohn's and Colitis Canada along with gastroenterologists, through the Canadian Association of Gastroenterology, do not support this non-medical switch policy. 

I am counting on you to represent me and convey my message to your colleagues in government, in particular the Minister of Health. This is of critical concern to me and I hope that you will ensure that our province does not consider a non-medical switch policy now or in the future.

I can only imagine the number of emails you are currently receiving in regards to the policy change to switch patients from a biologic to a biosimilar drug, and I'm sure you won't even give my email a second thought but my story deserves to be heard. I was diagnosed with Crohn's when I was just 7 years old and while I went into remission for a few years things eventually took a turn for the worst. When I was 12 I started getting sick again, sicker than I had ever been, and my doctor did everything she could, she upped my doses, tried new meds, but nothing was working. After about a year and a half of trial and error I went in for yet another appointment, an appointment I will never forget, my doctor told my parents that I had no other options except for one. Remicade had just finished its standard trials and was beginning a paediatric trial and if my parents agreed she would do whatever it took to get me in. Now over 10 years later I'm healthier than anyone thought I would ever be and living the life no one thought was possible, I attend University, I have a job, I even have my own condo, but without Remicade I won't be able to live the normal life I do. 

My childhood was far from perfect, I grew up being poked and prodded, had chronic pains, had to undergo surgery and get an ileostomy bag, had a feeding tube, I never even learnt how to swim because I was too sick for lessons, but through all that I'm here today, healthy and happy and I have Remicade to thank for that. There are so many things the average person takes for granted, for example I grew up in Cold Lake but would travel to Edmonton for appointments yet at only 12 years old I could tell you where every washroom was between Cold Lake and the Stollery, where every washroom was within the hospital, WEM, Kingsway Mall, you name it I knew where they were. I lived in constant fear of needing to know where a washroom was to the point where I studied their locations more than I studied Math. I wouldn't wish Crohn's on my worst enemy, but if you carry out these policy changes and prevent me, and many like myself, the access to the drug that has saved our lives you will be destroying the lives we have finally been able to live.

I know it is an expensive drug, believe me I know, I require 4 vials every 6 weeks but Janssen is agreeing to lower costs and match the prices of the biosimilar drugs. So please, consider people like myself who have looked death in the eye but are still here because of this one miracle of a drug.

Our 45-year old son living in Calgary is currently on a biologic treatment. Although this is the third treatment they’ve tried, and although the jury is still out, this one does seem to be working. My son now has his eyesight back, and the sores in his mouth have almost disappeared as has the rash  that he has had all over his body. Joints continue to be a challenge, but they have just increased his infusion amounts and decreased the time in-between treatments. My son is a father of four children and has been unable to work since January of this year. During the course of trying to find medication that would work for him, one biologic put him in hospital with life-threatening blood pressure.
 
As we walk this journey with him, we have learned just how sensitive a body is to any medication. At the risk of sounding like a drama queen, we believe the Alberta government's new non-medical switch policy could be life-threatening for our son and put him back months in his treatment. Consequences could be devastating to this family.

I am bringing to your attention how discontinuing funding Remicade for a biosimilar drug will affect me. In 1999, I was diagnosed with Crohn’s disease. The following year, after 60 centimeters of my intestines were removed, I was sent home with a Pentasa prescription. Over the following ten years, I was in constant pain as the prescribed medication did not work for me. In 2010 I had a further 23 centimeters of my intestines removed. I was advised by my physician that any more removal of my colon would result in not being able to absorb nutrients properly. After my second operation, I was immediately put on Remicade: 8 vials every 8 weeks. Later, after consulting with my physician, my medication was increased to 8 vials every 6 weeks. My Crohn’s has not increased during this time and is in remission. Biosimilar drugs work for some people, but not everyone. I cannot risk a reoccurrence and the pain that comes with it. I wish you would please reconsider your decision to not fund Remicade. The results of your current decision would effect me by requiring more medical intervention and intravenous feeding. I hope you understand that an intestinal obstruction can be fatal. Please reconsider your policy regarding the switch of stablized patients from Biologics to Biosimilars, the quality of my life depends on it.

I am writing to you in the hopes to better inform you of the implications that could occur in my case if I am forced to move from treatment of my Crohn’s disease with Remicade to a biosimilar.

If the generic, and therefore cheaper version, was an exact 100% copy of Remicade, I would likely not think twice about switching. What terrifies me is that it is not a 100% copy, and therefore, I feel that this could be a game of Russian roulette for myself. A game that I (and I am sure others) am not willing to play.

The following are my experiences/concerns in regards to what I have suffered over the years, and do not want to potentially suffer in the future. I would like ALL of my concerns/fears to be known.
I have lived with Fistulising Crohn’s for 31 years.

I have been in a Remicade induced remission for 12 years.

I have had my Remicade amount/dosing schedule changed 3 times since the beginning of treatment to manage recurring symptoms.

Remicade also prevents fistulas from occurring in my bowel thus preventing excruciatingly painful and dangerous bowel abscesses in addition to keeping my psoriasis at a manageable level.

I have to date had 5 surgeries, all resulting in 6-8 weeks of not being able to work. 1 bowel resection (major abdominal surgery), to remove one foot of Crohn’s obstructed intestine and 4 abscess drainage surgeries. All of which have been emergency surgeries and were completed within less than 24 hours after being admitted to hospital.

Any future abscess drainage surgeries will eventually result in loss of bowel control and likely result in needing an ostomy bag for the remainder of my life.

I have also spent 1-3 weeks at a time in hospital on more occasions that I can count for bowel rest to help settle Crohn’s symptoms prior to being on Remicade. 

Traditional Crohn’s medications are no longer effective for me.

I was severely ill for my entire 20’s. Now entering into my 50’s, I doubt I would be able to muscle through like I did when I was younger.

I also have type 2 diabetes which is being managed but with the possible return of Crohn’s symptoms, it would be extremely difficult to manage due to all of the dietary restrictions from both illnesses as well as from malabsorption of nutrients. 

I have had past inflammatory eye issues as a result of the Crohn’s, which can result in glaucoma and detached retina in addition to the risk of blindness with uncontrolled diabetes. 
 
Specialist visits will increase along with the return of any illness. Currently, I am monitored yearly by my gastroenterologist, ophthalmologist, dermatologist, and optometrist but these appointments increase exponentially when I am ill. 
 
There would be an increase in diagnostic procedures such as colonoscopy, extensive x-rays MRI’s and CT scans as well as increased lab work. Currently, I am monitored once a year through a bowel ultrasound.

Increase of antibiotic treatments to address abscesses including accessing the medical system multiple times a day for intravenous antibiotic treatments.

Crohn’s and abscesses are extremely painful thus resulting in the need for pain management. More consistent use of pain medications poses the potential for pain medication dependence and addiction.  

I currently have the physical and emotional ability to provide primary care to my elderly mother-in-law who lives with us rather than her being placed in assisted living. This likely would not be possible if I were struggling with my own health issues.

Alberta Blue Cross Non-Group Insurance only covers 50% of my medication as their limitations to medication coverage is treatments every 8 weeks, however I need medication every 4 weeks.  

Johnston currently provides me with the other 50% of my medication for free so that I can maintain the dosing schedule that benefits me.

Will this new provider or Alberta Blue Cross Non-Group support me and my unique needs to have access to medication every 4 weeks rather than every 8?

I have also had the support of a coordinator who ensures that all of the government “red tape” is addressed and that the services I need are coordinated to allow my treatments to continue seamlessly. Will the new company provide this service as I am not qualified to address all of these issues nor would I have the ability to get this done if I become severely ill or have the extra time to invest in this during business hours while I myself am working.

Being severely ill would impact my ability to leave the home or be anywhere where there is no bathroom.  Being stuck in a simple traffic jam can pose huge problems when suffering Crohn’s symptoms.

I have battled depressive episodes with past recurrences causing the need for additional medication and mental health support.
      
So far, I have remained employed full-time during my battle with Crohn’s, however should this come back I seriously doubt that at my current age that I would be able to continue this, resulting in potentially being on AISH. 

As I said in the beginning of my letter, if this biosimilar was an EXACT copy of Remicade there would be no issue switching as I understand how extensive the cost currently is to keep me healthy. However, the risk of switching to something “similar” is not worth it until there is more research and studies to PROVE that there will not be significant implications to switching. My intention behind this lengthy letter is to highlight ALL of the costs that would potentially be incurred by the government and health care system if my health cannot be maintained with a biosimilar. More planning and consulting needs to be done in this area before forcing patients to switch. One idea would be to grandfather in people who have proven to be successfully treated with Remicade and implement the biosimilar for anyone beginning treatments.  

I still want the ability to meet with you face-to-face as I feel it is extremely important to have this conversation.  What I have provided is just a snapshot of the concerns and fears that I have for myself with the potential of a forced switch to a biosimilar. 

My name is Kristy, I am 39 years old. I am Alberta born and raised, and I have been diagnosed with Crohn’s disease for the past 14 years.

When I first became ill, I had what I thought was food poisoning, but after 8 weeks of symptoms that became worse, I sought the help of my family doctor. At first, when I went to see him, he wasn’t sure what was happening. We did basic exams and tests, such as blood work and x-rays. As the weeks progressed, my weight began to drop at an alarming rate. In 4 months, I lost 60 lbs and became a fragile statue of who I once was. While my family doctor diligently had me tested for anything and everything he could think of, including parasites, beaver fever, and more. My sickness became so bad that I was being seen by him weekly in his office for weigh-ins, it saw me feverish, shaking, delirious, and unable to eat and vomiting profusely on top of incontinence, uncontrollable diarrhea, and excruciating stomach pain. When I would eat, I would immediately throw up and within a few more minutes I would be passing undigested food into the toilet with diarrhea all while doubled over in pain that felt like glass was ripping through my insides slowly and torturously.

At my absolute worst, I was using the toilet over 50 times per day. By this time, my intestines were bleeding and every time I had diarrhea the toilet looked like a pool of blood from someone who had been stabbed.

While waiting for a referral to a GI, I researched my own symptoms even more. I told my family doctor during a visit that I was certain I had colon cancer, at just 25 years old.

During my first visit with the GI, I was booked in for an emergency scope the same week. I was extremely terrified to find out what was wrong with me. I will never forget the moment, being woken up from anesthesia and hearing the doctor murmur in the background, “Yes, it’s Crohn’s disease. it’s so severe her ilium is almost entirely damaged.“

Those words rocked my world and everything came crashing down. 

We spent the next 3 years trying to find the correct concoction of medication to help me. But the fact was that I was so sick, I had been hospitalized many times, and many times I was so weak and close to death. I contemplated suicide numerous times because the pain was too much to deal with. I lived on Prednisone and Percocet for months while my intestines were obstructed with inflammation. But, as my disease progressed, my quality of life became nonexistent. I almost died twice while attempting other types of medications, waiting for them to work, or in my case never work.     

In 2009, I had exhausted all choices and it was suggested I have a bowel resection. They cut out over 40 inches of my small intestine and we weren’t sure if I would wake up with a bag or not. But I was assured that it would afford my body the fresh start it needed and I could start over, with no disease.      

The healing from my surgery was extensive, and I was off work for 18 months, working on rest and recovery. But feeling good didn’t last long and my doctor told me that I had exhausted all drugs available, except biologics. I was told that we should try them because they can be extremely effective when they work. This was when we started biologics. And while the road was a bumpy ride, we were able to figure out the correct dosage and frequency and within 24 months after starting biologics I had my first ever colonoscopy result say: “Severe Ileal Crohn’s Disease; In Remission”.

Never in my life had I heard such beautiful words, and I thank not only the diligence of my doctor but the access to this medication for helping me become healthy, and healthy enough to be able to go back to work and to even eat food again. It was not until I was put onto a biologic medication that my disease stopped progressing and my quality of life began to increase for the first time ever since being diagnosed. What most don’t understand is that these medications can sometimes take months or even years to work, and when they do work, they work better than anything else imaginable. I was able to finally eat food again, I was able to go back to work in a part-time manner, and most of all, my hospitalization requirements diminished to nearly zero.

 -  Kristy