Human Tissue for Research

Over lunch at the Arthritis Alliance Conference I sat down with a friend and we found that our table companions were scientists who work with human tissue in their lab. They were actually the first "real" scientists I have met in person. All of the other researchers I know do work on eHealth ethics, psychosocial adjustment to chronic disease, or trials to determine effects and efficacy of various types of drugs.

With determined and nosey questioning we found out that there are some obstacles involved in the smooth flow of their work. They use human tissue and with all so many regulations it is not easy to obtain it easily to use in laboratory research. The two of us immediately volunteered to help them with donations because they can use tissue that is removed in joint replacement or joint surgery.

I have two joint surgeries in my future because of problems with my knuckles and with my foot, and it turns out my surgery will be in a hospital where they have a connection. This is not really a good solution for them though. They took great pains to tell me and Marilyn that they are restricted from actively soliciting tissue donations for their research.

Being proactive the two of us had a number of ideas involving supporters tweeting about their dilemma, or having passive websites where people could volunteer if they wanted to help. Really, the only thing I would worry about in donating would be the very slim chance that a discovery that I helped with would be patented and sold for a huge cost to enrich a few.

This whole discussion really hit home with me when three of the speakers after lunch talked about using tissue for their amazing and in some cases breakthrough discoveries.

The first speaker was Sir Marc Feldman whose talk was titled "Beyond anti-TNF Therapy for Rheumatoid Arthritis".  He said "To study human disease we need human tissue" and commented on ways that monitoring human immune response might help to reduce infection risk.  

I'm sure you would rather see Sir Marc Feldman and Sir Ravinder Maini, the discoverers of anti-TNF drugs, than a sample of what is named in the title of the post

Then we heard from Dr. Lawrence Steinman on The Road Not Taken where he talked about how human biomarkers can thin down the crowd and make therapy more successful. He does not want to use a "big axe" on autoimmune disease.

Dr. Aled Edwards then gave us insights about what is slowing research down. He says the system does not encourage innovation and he got a big laugh when he said "Scientists like to fondle their problems". He talked about a partnership where ten pharma companies contributed $8 million each to produce molecules which were given to interested researchers to stimulate discoveries. They profile them in assays based on human tissues. "Human tissues seem to be the key".

It would be helpful if we could bring the issue of tissue donation into the public eye, since I am sure many of us would be willing to help with research, even in such a basic way as this.

The Rockstars of Arthritis Research and the Arthritis Alliance Canada

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.