Wednesday, September 28, 2016

A Tale of My Path to Biologics...

RA Blog Week: Day #3 Today's writing prompt is; Biologics can be scary - What did you think the first time you Googled your biologic medication? What advice would you give a person just diagnosed when it comes to biologic medications?

I had to find a new PCP, as my previous one had passed away. I had this physician while in the early stages of my living with RA. I stopped going to my rheumatologist after he told me, that I was going to get worse and that I should consider going on disability. He never had good news for me and I figured my PCP at the time could manage my care, just as well. Turned out that he could and did.

My very first visit with this new PCP the question was posed; "Have you ever considered taking Enbrel?"  I knew at the time that was impossible to even consider, because of the cost and would my current insurance even consider it? This physician had much more knowledge about the current treatments. We decided that using Gold would be the very last option. Although it had proven to be successful for some, it took a long time for any results.

So we went on with other treatments. He was way ahead of his time with some. He was always willing to listen to my concerns. It took me almost a year to decide, to even consider the possibility of a biologic.

I started to do my research on Enbrel, as that was the biologic that had been mentioned. I knew that it was the first biologic out on the market. It had been FDA approved in 1998. Yes, I had done my research and was paying, more attention now. I thought this could be my chance to get my life back. This was in 2001. I had now been living with RA for almost 10 years.

After extensive research on another medication; Arava, one that my rheumatologist suggested. Yes, I eventually went back to him. He said, I could end up waiting for months to start Enbrel, even after I decided to try it. I decided to give Enbrel a whirl and told my PCP, that I was ready to consider it. I received the prescription for Arava, but I never had it filled.

You see at that time, you had to register for this biologic. Biologics are manufactured through a rigorous process with a protein. As I was doing my research, it was mentioned that Chinese Hamster's ovaries had been used. Enbrel blocks the TNF or the tumor necrosis factor, the molecule that was discovered by a scientist, Dr. Gale "Morrie" Granger. I will be forever grateful to him.

I had my first injection with Enbrel (etanercept) on April 20, 2001. It did not take that long after I had registered. In fact on Friday, April 13th of that year, and it was also Good Friday, I received a phone call, asking me if I would like to start taking Enbrel. It only took one week.

So I have now been taking Enbrel for over 15 years. It's my first biologic and it did give me my life back. I am still able to work full-time and this year, has been 25 years, since I was diagnosed with RA.

In 2013, I testified at our North Dakota State Capitol in Bismarck, where I reside. I was representing those who live with various inflammatory diseases such as RA. I had the pleasure of working with Allen Todd, who at that time was with The Global Healthy Living Foundation. We both testified in regard to the Biologics vs. Biosimilars debate. This was in the early stages of my becoming an advocate for the 50 State Network. https://www.50statenetwork.org/ Check it out and consider joining and adding your voice.

I also had a story published in Healthy Biologics about my taking a biologic. You can check it out here and scroll down to my story. http://healthybiologics.org/stories/

This is on March 11, 2013, the day that I testified.



That was a pretty great day for me. It was even greater, when I received the call from Allen, that the bill had passed. I know that we made a difference that day. My story was relatable, as I was representing the patient's voice. There is nothing stronger! My state now has a law in place, that protects patients like me, about being notified of whether I would be receiving a biologic or biosimilar, when I go to my pharmacy.

So my path to biologics may not be typical. When I was diagnosed in 1991, they were not even out on the market yet.

My advice to a newly diagnosed RA patient would be to, never give up hope. Do your research and become your own advocate. With all the modern technology, you have pretty much everything, at your fingertips. Taking a biologic was the best decision that I ever ended up making and it truly changed my life with RA...

Here I am with the Chairman of the House Human Services Committee, Robin Weisz, who is from my home area. It was wonderful to be able to testify before this committee. I could tell, that my story was resonating with those in the room.


My biologic changed my life in so many ways. As I mentioned before, 15+ years is rare, to still be taking the first one. Becoming an advocate and fighting for those who feel that they have no voice, is all part of that package.

Brenda

























2 comments:

  1. I am so envious of your effort in the 50 state network. I have considered joining and representing Indiana. So last year I testified at the statehouse regarding step therapy and yes our bill passed as well.

    Knowing you are the ND Representative makes me want to join even more.

    ReplyDelete
  2. Rick,

    By all means join. We are always looking for more great advocates.

    ReplyDelete