Psoriasis is a long-term autoimmune disease which causes skin cells to grow up to 10 times faster than normal. This abnormal growth causes the skin in the affected areas to become raised, red (or purple on people with darker skin), itchy, dry and scaly.
The disease differs in severity between patients. In some people, it is characterized by small localized patches, while in others it is large and covers the body significantly.
There are 5 types of psoriasis:
Plaque Psoriasis - This form of the disease is the most common, and appears as raised red patches with white and silvery buildup of dead skin cells. These patches tend to be itchy and painful, and at times can crack, causing bleeding.
Gullate Psoriasis - Around 10% of people with this disease have this type of psoriasis. It appears as small, dotted or teardrop shaped patches. It often begins in childhood or young adulthood, and can be triggered by streptococcal infections.
Pustular Psoriasis - This type of psoriasis is characterized by white blisters containing non-infectious pus, which are surrounded by red skin. It can occur on any part of the body, although most frequently appears on the feet or hands.
Inverse Psoriasis - Most people that have inverse psoriasis have another type of psoriasis around their body as well. It affects the skin in body folds, such as behind the knee or armpits, and appears as very red and shiny lesions.
Erythrodermic Psoriasis - This form of psoriasis is particularly severe, and occurs in only 3% of people who have the disease during their lifetime. It appears as widespread redness that covers the majority of the body, and most often occurs in people that have unstable plaque psoriasis.
Team Clara Interview With Vickie
The team at Clara has gotten in touch with Vickie, who is a psoriasis patient. In this interview, Vickie shares her experience living with the disease, as well going through psoriasis clinical trials.
Lilly:
Vickie, I'd love to chat with you a little bit more about if you’ve been in just one clinical trial or in multiple trials?
Vickie:
I've only been in one.
Lilly:
Okay. And was it for your psoriasis?
Vickie:
Yes, it was. It was a pill. I don't have the paper in front of me, but I can email you later on to tell you exactly what it was. But it was a pill form that you took twice a day, one in the morning, one at night. It was in phase two, so there was no placebo. It was the straight medication.
[Editor: Vickie later confirmed the clinical trial she participated in was called KAD025]
Lilly:
Oh, that's great that nobody got the placebo.
Vickie:
No. No, nobody got the placebo. And the remarkable thing for me is, I basically noticed a difference right away.
Lilly:
And did you have in person appointments for the trial?
Vickie:
Oh yeah, it was in person. The thing is I live in Shreveport, Louisiana, and the clinical trial, which is the closest one I could find, was in Dallas.
Lilly:
Oh, wow. Did you drive to Dallas?
Vickie:
Yeah, it was in Dallas. So I had to drive three hours one way to get to the clinical trial.
Lilly:
Wow. And how did you hear about the clinical trial?
Vickie:
I have a friend who has psoriasis as well. She has more of the psoriatic arthritis and she was seeing the doctor that was actually overseeing the clinical research of this medication. So, she knew I wasn't being treated or whatever, and so she called me and told me with it being a phase two there was no placebo. So she thought it would be something I would be interested in.
Lilly:
Yeah. And did you say you weren't being treated before the clinical trial?
Vickie:
No, I was having to go to a low income hospital, which was also a teaching hospital, called Oschner LSU to be treated. And of course the only thing they wanted to do was the cream.
Lilly:
Hmm.
Vickie:
And I mean, I've had psoriasis since I was 33. I'm now 50, so 17 years. And like I said, the creams have never done anything for me.
Lilly:
And that's all they wanted to treat you with.
Vickie:
Right. That's all they want to treat me with. At the time I was going to the hospital, like I said, I had been on Humira for six months, and at this point I was 80% covered with psoriasis. So the manufacturer of Humira provided me the medication for free for a year. And after six months it had cleared my hands, and no other part of me.
So the doctor was like, "Look, I think you need to come off of this. We really don't have the facility or means to see you like we should so we can follow up." So I wound up coming off the Humira, or like I said, going through the creams, and then that's when my friend let me know about that clinical trial in Dallas that was starting.
Lilly:
So you were on Humira and then you were doing the cream. You said that the doctor at the hospital said that they can't really treat you the way that you need to be treated. Why did they say that? What did they mean by that?
Vickie:
Well, with it being a low-income hospital, they have a ton of patients to see. And they said that I should be followed up with every month, and the best they could do was to put my appointments three months apart.
Lilly:
Did they give you any resources to help you figure out what to do next? Since they weren't going to be able to help you like you needed to be? Did they give you any resources to go to with somebody who could help you?
Vickie:
Nope. None.
Lilly:
Oh, that's awful.
Vickie:
Back then I had Obamacare insurance and was being able to be seen by a private dermatologist, but then when Louisiana went to the Medicaid program, I got switched over to Medicaid.
So now I'm back going back to that same hospital because there's no private dermatologist or rheumatologist in the whole entire state of Louisiana that accepts medicaid. And I know because the National Psoriasis Foundation checked on it for me as well. There is no private dermatologist or rheumatologist in the entire state of Louisiana that will accept Medicaid.
Lilly:
That's terrible.
Vickie:
Yeah.
Lilly:
You've been given such limited resources, but you've done a really great job taking matters into your own hands, and navigating them... I mean, to find a clinical trial from a friend, that's huge.
And so how long ago did you do the clinical trial?
Vickie:
It was about five years ago.
Lilly:
How often did you have to travel to the trial site?
Vickie:
For the first month I had to go once a week.
Lilly:
Oh my gosh.
Vickie:
Then after that, it only became once a month.
Lilly:
That's a lot to drive six hours total once a month. That's quite a commitment. How long did the trial run for?
Vickie:
It only ran for four months.
Lilly:
Were you able to access the drug after the trial?
Vickie:
No. I was really disappointed after that, because I could see a difference. And the doctors actually thought I was nuts at first when I told them, "Look, I'm already seeing a difference."
But then when they went back and looked at the before pictures compared to the after pictures, then they could tell a major difference. So it was working for me.
Lilly:
How much of your body was with psoriasis when you started the trial? Like, what was the percent difference? Did you start at 80% and then you went down to 50%? Or do you have any sense of what the percentage was?
Vickie:
Yeah, I would say I was 80%, like I said, when I started it, and by the four months time I was down to about 60-65%, somewhere maybe in there.
Lilly:
Okay. That's great. And so you weren't able to access it beyond that. Do you know, did they go into a phase three trial? Where are you able to look into doing a phase three trial? Or was that not an option?
Vickie:
Apparently it was not an option, because I asked them if there was a way I could keep on it, even though it meant a long drive. And they told me sadly that I couldn't.
Lilly:
Oh, that you couldn't participate in phase three.
Vickie:
Right.
Lilly:
And do you know if the drug was approved?
Vickie:
I don't know. Like I said, I can email you exactly what it was because I can't remember it off the top of my head. And then, you know, I'll look into it and see if it was ever approved or not.
That was one of my chief complaints with the clinical trial. When it ended, it ended, and that was that. There was no communication, no nothing from the clinical trial once that four month period ended.
Lilly:
What a shame. You know, that's something that we are trying to work to change in the industry… We are really encouraging these trials, these companies and the trial sites, to be more respectful of what patients are doing to contribute.
And the fact that nobody communicated with you, the fact that you weren't able to stay on the drug and it was working for you, I just think that is not fair. And I would like to be able to use your story to help communicate to researchers and to companies why it's really imperative that we consider adding things like expanded access.
Vickie:
I'm definitely good with that.
Lilly:
Yeah. Okay. So you did that trial. Have you looked into any other clinical trials since?
Vickie:
I have, but the problem is the only clinical trials around me are either in Dallas or they're all the way in New Orleans, which is six hours away from where I live.
Lilly:
Yeah. So they're just not close. Well, something we are working to promote at Clara is encouraging companies to make more elements of clinical trials virtual. So incorporating more phone calls or home visits so that you don't have to travel.
Vickie:
Well, that would be awesome.
Lilly:
Yeah, we're trying to encourage more companies to do that. And I think with coronavirus a lot of companies have basically been forced to do that, because a lot of patients couldn't go into the hospitals for their trial visits. So hopefully we start to see that change.
During the trial, what was your experience like, when you were participating for those four months?
Vickie:
Oh I mean I loved it, honestly. Because you know, the first of every month they would do a total make up of me. You know, they would do an EKG, they would draw seven to nine tubes of blood, weighing, documenting any progress.
The doctor just really took time to listen to what I was telling him. So honestly, I loved it. I felt like it was some of the best health care that I had ever gotten at the time.
Lilly:
Would you encourage others to participate in clinical trials if they had the opportunity?
Vickie:
I would definitely get people to participate in a clinical trial. And in fact I have at one point, because there was this lady that I was mentoring through the one-to-one program with the National Psoriasis Foundation, and she was having trouble with getting medication or being seen, and I told her to check out clinical trials. And she actually found one and got into it, and it was a year long clinical trial.
Lilly:
Wow! That's great. So you've been helping to mentor other psoriasis patients through the National Psoriasis Foundation program. That's phenomenal.
Do you have one person that you mentor at a time, or do you have more sometimes?
Vickie:
No. Right now I'm mentoring four.
Lilly:
Oh my God. Good for you. That must keep you busy.
Vickie:
Yeah, it does at a point, depending on what degree of mentoring they need.
Like, if they're newly diagnosed, that can take up a little bit of time because they have a lot of questions, but if they're just looking for some support, because they feel like they don't have that support, then it's not as much time that has to be taken.
You know, they just basically want someone to listen and understand what they're going through. So that's me. That's what I'm here for.
Because when I was first diagnosed 17 years ago, I had nobody. There was nobody in my family at the time. My dad was not in the picture. So I'd later come to find out that that's where my psoriasis has come from, my dad's side of the family.
But at the time he was not a part of my life. And so I was going through all of this, being newly diagnosed, not having a clue as to what state, where to go, nothing. And I never want anybody else to feel like that. Ever.
Lilly:
That's really admirable of you, to take your experience and to then use it to help others. I'm sure that you've impacted a lot of people.
How long have you been a mentor and how many people have you mentored during that time?
Vickie:
I've been a mentor now for, oh, I don't know, probably seven years I think. And it's been... I think at one point in time it was counted at about 40.
Lilly:
Oh my gosh, Vickie. That's incredible. You've touched so many lives supporting so many different people. I am truly amazed. I am not surprised because I know you've always been a really active advocate in the space, but I think that's really phenomenal that you do that work.
And I'm honestly just really disappointed to hear... I'm disappointed in our healthcare system, that it hasn't been so kind to you, it hasn't given you the resources that you really need to help you.
My hope is that we start to see some shifts in the system that can better support you with everything that you're going through.
Vickie:
I would love to see more being done about clinical trials, because honestly I think there are a lot of people out there with psoriasis and psoriatic arthritis that don't even know that these clinical trials are available, or if they do find out they're available, they're too far to have to drive.
Lilly:
Yeah. And that's something we definitely need to work on, is accessibility. Right now, these trials are just not accessible to so many people.
Like you shared, you want to participate, but you can't. And actually one question I had that I didn't ask you was, a lot of people often feel afraid of clinical trials, because it's a new medicine. They often say, "I don't want to be a guinea pig." What are your thoughts on that?
It sounds like you were pretty excited to go into the clinical trial that you did. Why is that?
Vickie:
Well, I guess part of it for me was the fact that it was being a phase two, and knowing that there was no placebo involved.
But then again, I think even if it was a phase one, because of the fact that I wasn't being treated at the time, I would have done it regardless. I just believe that it’s a vital part of getting new treatments to the market.
Lilly:
Yeah. That's a great answer, and it's so true. It's something that we're continuing to try to educate people on, because I think a lot of people don't really fully grasp that concept.
And is there anything else about your clinical trial experience, good or bad, that you would like to share as part of the story that we're developing?
Vickie:
I don't know if this will help you, but as far as for me, every month before they gave me my morning dose, they always made sure I was fed.
So that always usually consisted of a breakfast burrito and fresh fruit. And so I mean, that was something that I found to be a big plus, especially having to drive all that way.
And like I said, the other part, the amazing part was that it was working. That was truly amazing.
One of the parts of the first month when I was going like every week, I actually stayed overnight one night, the very first night as a matter of fact, and agreed to let them draw blood, to see how much of it was filtering through my system or whatever at the time.
So at a point I felt like a blood pinata, but I know that was valuable information they needed as well. And of course it doesn't hurt that with clinical trials, you're compensated for your time and all, and can get the doctor's interest and stuff without it costing me.
That was a big, big factor for me.
Lilly:
Right, right. So there was no cost for you in the trial.
Vickie:
Right.
Lilly:
And did you say, were you compensated?
Vickie:
I was. I was compensated for the trial.
Lilly:
Oh, that's great. So they gave you a stipend, like a financial stipend for participating?
Vickie:
Right.
Lilly:
I'm glad to hear that they gave you breakfast and that they compensated and that they took care of travel. They covered travel expenses, right?
Vickie:
Right. They did.
They knew I was coming all the way from Shreveport to Dallas.
I mean, the first time I went in there to be evaluated, they found out all this information about me and they're like, "Do you really want to travel this far?" And I'm like, "If it means me being treated for my psoriasis which is totally out of control at the moment, absolutely I'll travel like this."
Lilly:
Wow, that's amazing. I'm glad to hear that, it sounds like they did some things right, and that they provided breakfast and gave a stipend and covered travel, but I do really wish that they had been more communicative and allowed expanded access since the drug was working for you.
And so I promise you, it's something that we are really trying to work on at Clara. We are trying to help instill in these companies how important it is for them to be communicative, to have expanded access.
And it's my hope that telling stories like yours... Your stories are so powerful. And to be able to share this, you had so many moments throughout this interview that I think are going to be really valuable for our patient audience and also our sponsor audience and researchers to hear.
I want you to know that your story brings a lot of value and power in, and I'm very grateful that you've taken the time to chat with us about it.
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