I don’t know anyone who actually likes getting pricked by a needle, but with some chronic diseases it is something you need to get comfortable with fast. I was the kid in elementary school who would almost pass out everytime I got the flu shot. Fast forward to 2009 when I was diagnosed with Crohn’s disease and I had to get used to needles, blood tests and IVs, whether I liked them or not. Injecting myself once a week is not something I enjoy doing but the trade-off is either feeling relatively well or spending extended periods in the hospital.
Background on Biologics
Biologic medications are a class of immunosuppressant drugs often prescribed treat inflammation within the intestinal tract. They help combat the body’s response to attacking itself by suppressing the immune system. Currently I am on Humira, which is a biologic immunosuppressant, TNF (Tumor Necrosis Factor) blocker that I have to inject subcutaneously (into my stomach or upper leg) every week. I have been on this medication for over 2 years now. There are several different types of biologics used to treat other diseases such as arthritis but I will mainly talk about the two major drugs used to manage Crohn’s and Colitis symptoms which are Humira and Remicade. Both are basically the same drug but the main difference is Humira can be injected by the user and Remicade requires the user to get the drug infused at an infusion clinic often located in a hospital.
My experience with Humira
This is my personal unbiased review, I am not paid, sponsored or endorsed by Humira in anyway.
I started taking Humira over two years ago and I have felt better than ever before in the last two years, since being diagnosed in 2009. I have only been hospitalized twice since starting Humira. Within the first month of taking it, I was hospitalized with a partial bowel obstruction that I have had many times before. I did not think it was working, my gastroenterologist upped my dosage from one injection every two weeks to once per week. My dosage was doubled but so was the cost (see next section for the price of Humira). Doubling the dosage seemed to work great for me and I have had very little pain and only a few flare-ups since changing the dosage.
Humira is an immunosuppressant drug so it does give me side effects caused by a depressed immune system as I will mention later in the post. But overall, I am very happy with my current Humira treatment. I can’t write this without giving a thank you to the Progress patient support team that organizes the delivery and monitoring of my Humira. Progress is a team of nurses there to help with resolving any issues with side effects, overall health and wellbeing as well as the delivery and storage of my medication. I have had nothing but good things to say about the Progress team. They are always extremely helpful and seem to genuinely care about how you are doing.
The Difficulty with getting Biologics
When I was first diagnosed, I went through several different drugs used to control crohn’s symptoms. Some worked and many didn’t. I was on azathioprine, pentasa and prednisone for extended periods of time. I would cycle predinisone, an anti-inflammatory steroid, everytime I had a flare-up and I would slowly decrease the dosage as the symptoms calmed. Pentasa and azathioprine were my maintenance medications that I had to take everyday for 4 years. I would take 6 pills in the morning and 6 at night. It is my understanding that my specialist worked really hard at trying to get me onto a biologic medication but it could not be covered due to the extremely expensive medication, until we had proved the other cheaper medications were not working. It took 4 years of suffering in and out of the hospital and one failed bowel resection surgery for the biologics to be approved by Fair Pharmacare, a provincial healthcare plan that helps people out who do not have healthcare coverage or cannot afford their medication. The current price of Humira in Canada when you are not covered by healthcare insurance varies but the most common price I found was $2450 for 2 pre filled syringes or $1225 per syringe. I am currently injecting once a week at a total price of $65,000 a year if I was not covered by Fair Pharmacare.
My Thoughts on the use of Biologics
The Globe and Mail, a Canadian based newspaper had a great article on “The price of being pain free, and why biologics are out of reach for so many”
According to the article, “The most popular class of biologics, TNF-alpha drugs, which Humira falls into is the most expensive drug class in all provinces and territories in Canada. They cost Canada’s public health plans more than half a billion dollars in 2013, for about 30,000 beneficiaries.” In 2013, I was among one of the lucky 30,000 people who were on biologics in Canada. I could not find information on 2014 and 2015 statistics but my guess would be that the number of beneficiaries would be substantially more as biologics have appeared to be the most effective non-surgical way to control Crohn’s and Colitis symptoms. I am extremely grateful to be covered by Fair Pharmacare allowing me to have the best medication on the market for Crohn’s disease but I cannot help but think at what cost is it worth to the taxpayers across Canada? Over half a billion dollars in 2013 for about 30,000 beneficiaries is an enormous cost to the taxpayers of Canada, with an average cost per patient, per year of $18,313.50.
With 1 in every 150 Canadians suffering from IBD or over 200,000 Canadians, IBD is one of the most underfunded major diseases when compared to Diabetes, Cancer or Multiple Sclerosis. I feel the government of Canada needs to put a substantial amount of money towards research in finding a cure. By increasing funding from the provincial and federal governments, it could lead to significant breakthroughs by finding more effective, cheaper medications than biologics. Perhaps, the government could save millions of dollars every year, while improving the lives of thousands of people suffering from IBD who cannot afford biologic medications.
My Question to the Healthcare system
Yes, biologics are extremely expensive but I wonder why was I not approved for Humira earlier? In 2013 alone, I was hospitalized 9 separate times due to partial bowel obstructions. Hospital stays ranged from 1 night to a 5 night stay. The cost of keeping a patient in a hospital bed overnight can range from $700-$8000 per night. A cheaper option for the government might have been to put me on Humira sooner, not to mention it would have significantly improved my quality of life. It took countless hospital stays and a failed surgery before the provincial healthcare system considered me eligible for biologics. I also wonder if the amount of damaged sections of my small intestine would have been significantly less if I had been on biologics sooner. The less frequent flare-ups should have reduced the amount of scar tissue I currently have costing the healthcare system less by reducing the number of surgeries needed in the long term.
Why isn’t every IBD patient on Biologics?
The obvious answer to me is cost. For someone with a mild-moderate disease, a much cheaper option for the government is to do what they previously did with me by prescribing maintenance medications to reduce the frequencies of flare-ups. These medications do work great for some people, with very little side effects, but if the disease worsens, biologics become the next step of treatment.
It is not just the cost of biologics that keeps every patient with IBD from taking them, many others with IBD are allergic or do not respond to the treatments. Not every treatment works for everyone. The difficulty of finding the right balance of medication and side effects is a very fine line. Luckily, Humira works for me with very few noticeable side effects. The short-term side effects I experience due to having a suppressed immune system, is various skin rashes, constant dry skin, acne, colds, flu, and frequent cold sores. These side effects are much more tolerable than some of the other medications I’ve been on. They are just something I have to deal with since the medication is the only thing that keeps me functioning relatively normal.
The long term side effects are somewhat unknown as biologics are a new type of drug that have not been on the market long enough to study. Cancer is also listed in the side effects causing me concern because I have no idea what exactly I am putting into my body. I know everything can give you cancer but injecting medication into my body once a week cannot help? I don’t know if this deters others from taking it but I know I would much rather take my Humira and live a shorter, mostly pain free life than live longer, with a much lower quality of life.
So is this a miracle drug? I think it is. It has made my disease manageable and allowed me to live a fairly normal life. Is Humira the cure for Crohn’s disease? No, it is not perfect and it still has significant side effects with not enough research to really know if it is safe for long term use. There is still a great deal of research to be done in this area, so my fingers are crossed there are some major advancements in the field of biologics.
I really hope this post helps anyone who is considering biologics for managing IBD. My experience has been great, other than a few depressed immune system side effects. I hope everyone considers biologics as Humira has been the best medication I have used yet.