By Laurie Proulx

People living with arthritis have to take medications (often many!) to control their disease. I’ve had to take medications for the last 20 years in order to control the Juvenile Idiopathic Arthritis (JIA) that struck me when I was 14 years old. I have usually taken for granted that these medications go through a rigorous process to ensure they are safe and effective for me. Drugs are authorized for sale in Canada once they have successfully gone through the drug review process. This process involves the review by scientists (drug reviewers) of Health Canada to assess the safety, efficacy and quality of a drug. I will continue to rely on the work for these scientists to ensure they are safe and effective for me in the many years to come. Their job is an important one.

It was a pleasure to represent CAPA and people living with arthritis at a pilot Health Canada course for drug reviewers.  I talked about what it was like to live with arthritis, how we use the multitude of Health Canada products and what improvements can be made to them. By preparing for my part as “instructor”, I learned even more about what Health Canada does for the Canadian public and for people living with arthritis.

For example, did you know that Health Canada posts product monographs for the medications they approve? A product monograph is a factual, scientific document on the drug product that does not contain any promotional material. It has a consumer section which is geared entirely to patients.

In my presentation, I spoke about how patients get their health information and that they don’t even know that these product monographs exist. Often our pharmacists don’t give the product monographs to us and the only time we might see them is when we open the box to one of our biologics.  It might be because patients with arthritis get their health information from many sources – their rheumatologist, their pharmacist, websites of Non-Governmental Organizations (like CAPA) and other people living with arthritis.  We are lost in a sea of information where it is difficult to get reliable information. There are websites of all sorts where it can be difficult to discern good from bad health information.

I asked the drug reviewers if the consumer section of the product monograph was written for patients. I went to look for information on a biologic I take for my RA and found the consumer section on page 47. I had to first look through 46 pages of scientific information on the risks of taking a medication before I could get to the section designed just for me. I suggested using a plain language approach to presenting the information, like that used for Cochrane plain language summaries. Now this is a straightforward way to present statistics to me and other patients living with arthritis!

This was just one part of my presentation so keep posted for more information in the next CAPA newsletter.  I’ll be writing about how patients use other Health Canada products, such as the Summary Basis of Decisions, what we’d like to know about drugs in the approval process and how patients would like to be involved in the drug approval process.

To learn more, refer to these publications/resources:

Inclusion is a Right

By Marie-Eve Veilleux
I don’t remember a lot of the battles my mom had to fight before I could take over to fight my own, but I know one thing: she always made sure I would grow up in a regular environment and that’s probably the greatest gift she ever gave me.

I have juvenile arthritis, so I have difficulty moving. When it became too difficult to ride the bus to school, the first solution offered was to drive me to a special school for people with disabilities in Montreal. My mom was firm: her daughter was already isolated physically; the principal wouldn’t isolate her socially as well. After graduating elementary school, the automatic option was to send me to a school with specialized classes instead of my neighbourhood secondary school – because it was just easier. Once again, my mom had to stand her ground. Her daughter would study at her local school.

My mom had to fight twice, but some of my friends went through worse situations. Their intelligence was questioned because of their disability since their body, their language or their movements were different. One of my friends was refused access to his local elementary school because he needed help for things like putting on his coat. After receiving many refusals, even directly from the Minister of Education, his mom decided to enrol him in a private school where he was accepted. In a different region, another friend had access to an attendant five days a week to help her in school. One year, the budget was cut and they would pay the attendant only four days per week. Can you tell me what my friend was supposed to do during the fifth school day?

Grouping services and resources under one roof may save money, but what are the consequences on students who are put in ghettos at such a critical age where they build their character? What is the impact on their aspirations? And what is the transition to a regular CEGEP like for these kids who spent all those years in a parallel system? I truly believe that my education in a regular environment allowed me to feel like I had my place in society as much as anyone else in my class. And when the time came that I needed to fight my way through life with a disability, I had all the tools I needed.

Thanks to all the battles my mom fought for me since I’ve been born, I am now allergic to situations where society makes me feel like I am a second class citizen. If I can contribute to helping society stop thinking of people with disabilities as outsiders, I will have succeeded