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.