Patient perspectives: Kelly Young

Rebecca Aris interviews Kelly Young

Kelly Young has bravely battled with chronic autoimmune illness most of her life. At 13, began the onset of her Rheumatoid Arthritis (RA) symptoms which have worsened over the years. It wasn’t until she was 40 that she received a diagnosis of RA by which point the disease had even impacted on her breathing.

Ever an optimist, Kelly has worked hard to help educate fellow RA patients to understand more about their treatment options. She encourages self-education and an active involvement in patients directing their own treatment. As the second patient in our patient perspective series she speaks with us here on her view of pharma and what she feels they could be doing to help patients.

To watch highlights of the interview, please click on the play button below, with a shortened transcript of some edited highlights shown in print below.

Interview Summary

RA: Hi Kelly, thank you for joining me today, I’d like to start by asking you to tell me a bit about your experience as a patient and explain how you came to be such a vocal e-patient?

KY: I actually didn’t plan to become any kind of a patient advocate, but as I looked online as a new RA patient I saw patient stories, looked through journals, researched, and a lot of things didn’t make sense to me. Sometimes the more I read the more mystified I became. So I had a goal to put together a website for patients where they could communicate with each other and encourage each other, but also where we could share good information. We started there, and it’s just grown. I ended up becoming more of a vocal e-patient because I was trying to be the voice of patients who weren’t being heard.

RA: Did you find any patient organisations, support groups or information sources to be useful and supportive?

KY: There are some large websites that do have RA sections that were a little helpful at the beginning, but I wanted a deeper understanding. I would definitely, however, mention Health Central and their RA page, that they have several patient blogs there, which makes those pages useful. They also have a community and allow a lot of comments and interacting, which is a big help.

“I had a goal to put together a website for patients where they could communicate with each other and encourage each other, but also where we could put good information.”

RA: How much direct interaction do you see between pharma and rheumatoid arthritis patients?

KY: Not very much, I know of two patients who’ve been involved with a pharma sponsored event. The feedback was that it was commercial and really promoted pharma products, and that’s really the only one that I have knowledge of.

RA: What other resources and support do you think would be helpful for patients with rheumatoid arthritis?

KY: There’s an enormous amount of resources needed. There’s a real lack of available resources to educate and encourage patients, or to help them understand how their medications work. For example, I had been taking a double dose of a certain biologic for two and a half years but I was unaware that it wasn’t working. I was also unaware that there were other therapeutic options available. It was a long time before l learned there were other treatment options available and that I should even be trying other biologics. There really weren’t any available resources for RA at the time, which is why I recently worked with patients to start a non-profit just for RA.

RA: As a vocal e-patient yourself, how would you like to be engaging with the industry?

KY: I would like to see patients, patient organisations, and patient groups supported and given resources. I would also like to see patients given a voice, and I think the industry itself has the resources to do that. I’d like to see patient input into the industry in an open way at every phase in the clinical trial design. We could help the industry to progress and I think patients would like to interact more.

RA: What was your impression of the pharma industry before your illness and how has that perception changed since?

KY: I’m an optimist and tend to disbelieve the conspiracy theories that I hear. I hear from RA patients that our disease is curable but all pharma look for are ways to manage it. Some patients do believe that the pharma industry doesn’t really want to help patients, because they don’t want to cure our incurable disease. I don’t believe these theories but my impression of pharma is a little more negative now than it was before because I’d like to see more openness from pharma and to see the wall between patients and industry brought down or at least to have more windows.

“…I’d like to see more openness from pharma and to see the wall between patients and industry brought down or at least have more windows.”

RA: What could pharma do to improve how it is perceived?

KY: I’m not a marketer, but I am an optimist. I believe that perceptions are improved as we see pharma doing good things. Pharma needs to be seen to be doing the right thing, this could be research that benefits patients and making patients aware of it. Giving patients a voice is also important, as is, of course, charitable work and donating to patient initiatives.

RA: And finally, what would your key message be to the industry – how do you think it can better meet patient needs?

KY: Patients are the only ones who know what their needs really are for RA or for any other condition. So I think that there needs to be a respectful and open way to interact with patients. I hope that we will one day see if that wall between pharma and patients could come down, or at least have more windows so that there is better communication between the two.

RA: Kelly, thank you for your time.

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About the interviewee:

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. Through her writing, speaking, and use of social media, she is building a more refined and accurate awareness of Rheumatoid Arthritis (RA) geared toward the public and medical community, creating ways to empower RA patients to advocate for improved diagnosis and treatment, and bringing recognition and visibility to the RA patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of almost 600 pages. She was the first patient and blogger to attend the American College of Rheumatology Scientific Meeting as a member of the press.

Kelly serves on the Mayo Clinic Center for Social Media Advisory Board. In addition to her daily blogs on Rheumatoid Arthritis Warrior, Kelly writes periodically for other newsletters and websites, including Orthopedic Posterous, WEGO Health, and Health Care Professionals Live. There are almost 11,000 connections of her highly interactive Facebook Fan page. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can learn more about Kelly by following her on Twitter or YouTube, or connecting with her on LinkedIn. She created and moderates the weekly Twitter chat on rheumatology topics, which can be followed with the hashtag: #rheum.

How do you think pharma can better understand patient’s needs?