Going to a medical or healthcare conference is exhilarating whether you are in or out of your comfort zone. You have a chance to meet and talk to patients, experts, organizations and sponsors and really expand your perspectives.
This past week I was at the Arthritis Alliance of Canada Conference which featured a full day of world class speakers in the "Research Symposium: State of the Art and How We Got There." This event and the Gairdner Awards meshed very well since the Awards founder, James Gairdner lived with severe arthritis. In attendance as Gairdner Award Winners and featured speakers were the Rockstars of RA Research.
The two men who discovered anti-TNF therapy for the treatment of Rheumatoid Arthritis were the featured speakers and guests of honour.
Award Winners Sir Marc Feldman and Sir Ravinder Maini having a cup of tea with patients during a break. Their discovery of anti-TNF as a medication convinced pharmaceutical companies that biologic drugs were a viable treatment and changed the course of research. I have heard many patients say this breakthrough has given them their lives back.
The two Sirs made some interesting comments when Cheryl Koehn, founder of Arthritis Consumer Experts, asked a question from the floor about Subsequent Entry Biologics (SEBs for short). SEBs are also called biosimilars and are biologic drugs that are similar to existing biologics which have reached the end of their patent period.
Since they are made from large complex molecules they are not like regular generic drugs which have the same chemical formulation as existing brand name drugs.
Sir Marc Feldman wondered what repertoire of clinical testing will be required before they are prescribed. He pointed out that the same product produced using the same method in two different countries at two times will be different. He also told the audience that it is a myth that the producers of anti-TNF drugs have invested a lot of money. (and I say he would know this very well) Could the biosimilars be bio better? We don't know yet.
Sir Maini said that for people on an original drug there could be consequences if they changed to a biosimilar. Dr. Dan Kastner of the NIH (National Institute of Health) added that if you are responding well to your current medication, then why change?
Sir Ravinder Maini then made a comment on the price of biologics, saying that when cost is an issue, a 30% price reduction which makes the cost $9,000 rather than $12,000, will not actually help in poorer countries.
That question and answer alone was worth being there for. You will see more posts about this conference.
This month I am going to attempt a blog post every day. It will be a real challenge. Don't keep score please.
I found a research paper called Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!” The research that went into this paper centers on patient experiences, attitudes and expectations about the information they receive before they start anti-TNF therapy. As soon as I saw the comment I loved it. It made me think of my pre-TNF self.
www.the-rheumatologist.org Fatigue in RA
ACR/AHRP Annual Meeting 2012
This was my experience making the decision about biologic drugs:
Six years ago I was managing to work full time and that was about all I could do. When I came home from work I was too tired to do much more than lie on the couch and stare into space.
I did manage to keep looking for information online and I read the results of the Premier Trial and others that were similar with great interest. Among the articles I read, the conclusions that stuck with me, were those that said anti-TNF drugs improved disease activity and physical function. What appealed to me most was that biologic drugs were said to give an increased sense of well-being, better physical function, and to decrease erosions and joint damage.
news.com.au Sense of Well-being
After reading these conclusions it seemed to me that life could improve with more aggressive treatment. Next I had to convince my doctor that this was necessary. With physical symptoms of fatigue and inability to expend energy my life was limited.
It took a few appointments to do this, which in RA terms translates to more than a year. I had to "fail" on another DMARD so that the insurance company would be satisfied. If it had worked it would have been great but it didn't.
I really wanted to be taking something that would give me a better quality of life than I had at the time. Over the course of Rheumatoid Disease I had tried almost every DMARD and most made no difference to my RA.
The study mentioned above was qualitative and the conclusions that were reached came from analyzing data and comments from focus groups. The people who participated made comments that made sense to me. The study about patient's perceptions that talked about a sense of well-being was also qualitative, so that information came from patients as well.
Well-being is not something that is asked about in the Rapid 5 and HRQL (Health Related Quality of Life) measurements.
Here's a quote from a rheumatologist on this topic:
"In recent years we have been discussing the need for a broader approach to treatment--such as in addition to measuring disease activity, measuring structural changes and functional impairment--which may help physicians and patients mitigate further irreversible effects of the disease." said Dr Edward Keystone, Professor of Medicine, University of Toronto, Canada.
