COGS 1st International Meeting (2020): Talks

Chronic Immune System Disorders

Linda Wilhelm (Canadian Arthritis Patient Alliance [CAPA])
January 8, 2020

So, thank you very much, I don’t think I’ll take the whole ten minutes, but hopefully I won’t bother you to have to stop me. I’m Linda Wilhelm, and I’ve been living with severe rheumatoid arthritis for 36 years, I was diagnosed at the age of 23, I was pregnant with a one-and-a-half-year-old child, and I’ve been through a 360 degree change in how this was going to be treated. From 1982 to providing a [inaudible] to 1990, which we had the modifying drug, which changed the [inaudible], and then 2020, we now have biosimilar.

So, I’m going to talk a little about the syntax of the disease, the medication, over the next slide. [inaudible] patient alive, one of the founding members, the founder of the organization in 2002. So, we’ve been around, we’re a volunteer organization, we’re all volunteers living with rheumatoid arthritis from across the country.

Rheumatoid arthritis has a higher prevalence in women, there is an inflammatory arthritis that does have a higher prevalence in men, it’s called [inaudible] and I don’t think you can spell it. But it presents in the middle of childhood and youth, and has a huge reflection in our career path, in our abilities to raise children, and our ability to function in every kind of situation. Something that often represents a challenge in many of the treatments are expensive medications now, but even so, physiotherapy, psychological therapy, all of these things are not necessarily all acceptable in health care, and it could be not well understood when you’ve got a disease like this, when you’ve just had a baby, or have a baby already, you’re already tired, you’re already having issues, and to have this on top of it, it often does not get diagnosed until there’s damage done to the joints.

It has a life-long impact, which makes many people with rheumatoid arthritis’ relationships very difficult, and apart from difficult, it makes it hard for someone living with the disease to cope. It effects your ability to work full time, it’s very episodic. I have a very severe form of the disease, but it didn’t stop me from trying to work, which was always landing me in the hospital. It also affects your financial security over your life term, and retirement is a huge worry, and being able to support yourself, and having a fulfilling career. It has a huge impact.

It impacts your daily activities, your household responsibilities, your parenting abilities, your ability to go out in the evening and socialize and be with friends. It’s a very isolating disease and many people with the disease, you don’t see them, because they don’t go out. They get dressed maybe in the winter for that 15-minute walk outside to get some exercise outside and some fresh air.

So along with the isolation, we have huge mental health issuess. And this hasn’t even been tapped within the research community, nobody has ever really asked us how we’re coping with this disease mentally. They give out lots of medication, but not psychological treatment, as that’s not expected in the health care system. We don’t have integrated and coordinated care, and we end up having to try to muddle our way through a complex system that doesn’t necessarily meet our needs.

We are getting an increased focus on government costs on our medication, the value of these medications, and yet these medications have been around for over 20 years, and nobody really understands how to keep people working and keep people out of long-term care facilities. The fact that there are no more in-patient beds for rheumatoid arthritis in, medically speaking, has never been taken into consideration.

Why is there an increase of rheumatoid arthritis in women, and why there is an increase of rheumatoid arthritis in men? What are the medication differences between women and men? We get the same medication, and the dosage, but we don’t really know how that’s going to work. But we need to know how it will benefit the entire system; does it keep people working, does it keep people out of long-term care, does it stop people? Why haven’t researchers done this research, so that we can say to governments when they say “your medications too expensive” that this is the trade off, this is the value of medicine.

We know very little about pregnancy and breast-feeding, some of our gene-modifying medications are very harmful on an unborn child, and yet all women can’t access the biologics if they had kept the baby and breastfed, but they have to go through all of these other routes to access it. And there are some biologics that have been tested on women who have breast fed, and women are forced to choose between taking the medication or being able to care for their child.

So, we got together, the people from my organization, we’ve been trying to say for 20 years, that researchers need to engage the patients on research and health care priority. I can see that how the benefits of these drugs if we had engaged the patients back in 2000. We have to start to minimize this heavy burden on the patients and their family, and our organization will do a lot of reaching out to patients. All our resources are developed, received back with input from patients, in trying to minimize the disparities that there are.

Supporting Organizations

Women's Brain Health Initiative logo and website link Women's Health Research Cluster logo and website link Ontario Brain Institute logo and website link Women's Health Research Institute at BC Women's logo and website link Libin Cardiovascular Institute of Alberta logo and website link Canadian Institutes of Health Research logo and website link Women and Children's Health Research Institute logo and website link Elsevier logo and website link Centre for Gender and Sexual Health Equity logo and website Linköping University logo and website link Heart Stroke logo and website link centreDeRecherche logo and website link UMontreal logo and website link Einstein lab logo and website link