April 04, 2011

Guest Blog: My Decision to Join a Clinical Trial

Today's guest blog comes from Erica C. and her decision to join a clinical trial. She is an oncology nurse living in NC. In her free time, she enjoys being outdoors, playing with her dog, cooking and spending time with her family & friends. 

Deciding to join a clinical trial can be a complex process. For anyone that has ever joined a clinical trial as a subject or patient, you know about all the paperwork and information that is given to you.

What does Phase 1-2-3-4 mean?
What can I gain from it?
What do the researchers gain from it?
Does joining the trial mean I’ll get a new drug or treatment?
What are the risks/benefits of joining?

These are all questions to ask your physician. Get second or third opinions! There is nothing wrong with that, make sure that you have all the information YOU need to make the best decision for YOU!

I made a personal decision to join a clinical trial in 2008. I reached out to family, coworkers, my physicians and the internet (clinicaltrials.gov) for more information. At that point in my life, I had been living with lupus for 4 years. I had experienced the wrath of high dose steroids, and my body couldn’t tolerate other immunosuppressive treatment. I chose to join because I didn’t have any other “good” options and I knew that if there was ever going to be a cure or more treatment options these trials would need to have study participants.

Look at all the drugs that have been approved in the past 10 years. We are curing cancers and extending the lives of patients with chronic illness. In order to make some of this advancement there are a lot of people that have step up to the plate in order to see progress. This includes people with lupus! If no one had joined the clinical trials of these new treatments, they would have never made it to the market. While I completely understand that joining a clinical trial may not be a great option for everyone, but for some people (like me), it’s another option that gives them hope. Just think, until March 2011 there had not been any new options on the market for people with lupus in more than 50 years!!

I truly believe that knowledge is power, especially when you have a chronic illness. Anyone with lupus knows that there is no cookie cutter treatment for ALL people with lupus. Do your research, talk to your healthcare team, if you feel that the joining a trial is worth it, take the leap of faith.

Editor's note: We encourage you to learn more about clinical trials at the LFA’s Center for Clinical Trials Education. While you’re there, you can sign up for the Lupus Research Registry to learn more about lupus clinical trials in your area. 

4 comments:

Amethyst Rains said...

Hello, I'm so glad to have found your post about joining the clinical drug study for the new Lupus medication. I started the screening process today. I have lived with lupus for many years and I have lost so much in my life due to this illness. So, I decided to step forward and and join the study. Just think, those of us that offer our help now, could possibly change the future of so many others that are stricken with this terrible illness. I haven't felt useful for a very long time and I really like knowing that I am doing something really important. I'm doing something that really matters. I'm making a difference.

Good luck to you,
L

The Clinical Trials Guru said...

Thanks for sharing, I have sent this blog post to people I know who are interested in clinical trials. Is there any way we could get a chance to interview Erica for our blog where we try to demystify clinical trials for the general public?
Thanks alot.
@therealdansfera

Tessie said...

I was in a clinical trial when I was 11, over 30 years ago. It wasn't for a medication but for a treatment, called plasmapheresis. It was my last option, as my kidneys were already permanently damaged and the meds weren't controlling the lupus. The treatment was never approved for lupus because the results were deemed insignificant. I was the only one that showed significant improvement. What started out as a 2 year experiment turned into 7 years of life saving treatment. It also led me into a career in clinical research, as a data manager on clinical trials for pharmaceutical companies. New advances in research are being made every day. As long as there's research, there's hope. And sometimes we have the luxury of sitting back and waiting for the new paths to be found but sometimes we have to be the pioneers and find the paths ourselves and for others.

Sophie - LFA said...

Hi all, thank you for sharing your experiences. We love hearing about them.

Dan: I will send your contact information to Erica and she can get in touch with you.