Lilly Stairs | Patients Have Power!

"There are studies that show that women are unfortunately not always believed by physicians that they are in pain. They are put in the situation where they need to prove their pain, there are countless studies on this" Lilly Stairs.


Lilly Stairs is the head of Patient Advocacy at Clara Health. A company working to connect patient’s clinical trials and also a patient living with psoriatic arthritis diagnosed at age seven and crohn's disease. 

 

Psoriasis Diagnosis at Age Seven

First of all at the age of seven I was actually diagnosed with psoriasis. Mine was gutty so it looked like chicken pox all over my body. I was never told that it was an autoimmune disease. I was also never told that 30% of people that were diagnosis psoriasis will actually get psoriatic arthritis. So fast forward many years to when I turned nineteen I was actually just over the course of the summer and I started to develop this underlying pain.
Then one day I woke up and I literally just couldn’t even move. I was to the point where my mom had to dress me, she had to feed me and my whole body was paralyzed with pain. It was at that point that I was diagnosed with psoriatic arthritis.When I say pain I mean I was put on a whole slew of narcotics and none of them did anything to help. At the age of nineteen, two autoimmune diseases weren’t enough, so we had to add a third and I was diagnosed with crohn's disease six months after psoriatic arthritis diagnosis.
That actually happened after I was in and out of the ER three times in one weekend. The doctors at the ER unfortunately didn't believe I was dealing with pain. I would try to swallow water, I was in agonizing pain just trying to swallow water. It was absolutely awful. They thought that I was just trying to get access to pain meds. Finally the third time I went to the E.R. I was finally admitted, I was in the hospital for a week, they ran a series of tests. Finally they did a capsule endoscopy and that's when they found bleeding ulcers in my small intestine and I was diagnosed with crohn's disease.

Women, Autoimmune Disease and Pain

About 75% of the patients who are living with autoimmune diseases are actually women. There are studies that show that women are unfortunately not always believed by physicians that they are in pain. They are put in the situation where they need to prove their pain, there are countless studies on this. This has happened for so many patients living with autoimmune disease and it’s something that really happen to me as well. I had gone into the ER three times in this agonizing pain, pain I had unlike anything I ever experienced and they didn't believe me.
They thought I just wanted morphine, that I was trying to get access to drugs or that it was all in my head. Here I was this very happy otherwise healthy 19 year old who wanted to be back in school, wanted to be back in college, didn't want to be in the hospital bed but here it was. I was afraid because nobody believed me and I didn’t know that I was going to get the treatment I needed. So we need to see a change of mindset, a shift in mindset in some of these physicians---out of the idea that----acknowledging these biases that the health care system has against women.

Access, Insurers and Healthcare

I have been incredibly fortunate when it comes to access in my experience as a patient. I have had insurance throughout the entire time and they’ve or actually been really wonderful about covering the medicines that my doctors prescribe. This is refreshing, because with the work I do oftentimes I hear about how patients do not get access to the medicine their physician wants them to be on. Right now we have insurers playing doctors and saying “Well I know your physician wants you on this medicine but we’ve cut a deal with this person and so we need to give you this medication first or you have to go through step therapy before you can get to the medication that you need”. So I have been fortunate, in that every single medicine my physician has prescribed I’ve been able to get access to it.

 

Defining Step Therapy; From the Perspective of A patient living with Autoimmune Disease.

Step therapy is when you are forced--- this happens a lot to autoimmune disease patients.  When you are forced to go through a series of medications before you can get to the one that your physician wants you to be on. So it makes you try something and some of these medications maybe they're less expensive, maybe they are less potent than some of the other medications. But they are making you go through it because the insurance company wants to make sure that they're not spending extra money.
What I will tell you is that unfortunately, with many autoimmune disease patients their disease progresses because they don't get access to the right medication. For example, let's say I'm a patient who’s just been diagnosed with crohn's disease and my doctor wants to put me on what's called a biologic, but they're not going to let me go on the biologic.
My disease is very severe but the insurance company says “No she has to try this drug, and this drug before she can get access to that biologic”, the biological that my doctor wants me to be on. During the time that I have to try X, try and fail X. Y. and Z, go through these steps, my disease progresses, and some people’s diseases progress so much that they need surgery. In the end has the insurance company saved any money? No because now they have to pay for surgery.

Therefore, step therapy is bananas to me, it doesn't make any sense. Its intended to save money and it's not. So we need to re-evaluate what that looks like, maybe that's worked for other diseases in the past but with these complex chronic illnesses it's not OK. Medical switching is when insurers are playing doctor. So let's say my doctor wants me on a medication ---- you have biologics which are these entire class of medications. They tend to treat patients with autoimmune diseases. Insurance companies view them as being all in one class and therefore they're all the same, so they're interchangeable.

The problem is that if my doctor wants me on a drug that have a specific target---i.e they all have different mechanisms of action everybody biologic. If my doctor wants me on a drug IL12 and 26 the Interleukin 12 and 26 that specific mechanism of action. Sometimes the insurance company could turn around and say “No we want to put her on a different biologic that's an anti TNF inhibitor”, but anti TNF inhibitor don’t work for me. So they're just saying “Oh they're all biologics, they’re all in the same class its fine. This is our preferred drug she needs to be on so that”. Then the insurance company comes back and they literally change the prescription that the doctor prescribed to the patient. That’s how the insurance company is getting involved in the decision between the doctor and the patient.

The need for change in step therapy practices.

How is this legal? It’s a great question. I don't know! I actually sat on a commission in Massachusetts this past year where we did some research on how dangerous this practice can be. How it actually costs the Commonwealth. The report hasn’t been release yet but I’m hoping it's going to be released soon. I am also hoping that there is going to be a bill that is put into place to prevent this from happening. We’re just starting to see non-medical switching bills come out. They are detrimental to patients truly and It’s difficult.

 

Dealing with Stigma while Living with Chronic Illnesses

It is so difficult to live with chronic illnesses when you are a child, teen, young adult into adulthood. At the time (during childhood) I remember when I was that and had the psoriasis I was so afraid for other people to see it at school because I didn't want them to think they were going to get it or that it was contagious. I always felt very uncomfortable wearing like a T-shirt, it was embarrassing for me. Then here I am at age 19 with arthritis. You think only old people get arthritis or that's the mentality that we have in society, when in reality they're actually so many young people who are living with arthritis. It kind of gives you a complex right.
Then you have to deal with “OK now dating is in the picture and how do I talk to somebody about the fact that I have these chronic illnesses and are they going to, or will anybody ever love me”. These are the things that run through your head when you’re first diagnosed, that's why I think it's so important that we have advocates out there. We have some amazing chronic illness advocates in the community who talk about what it’s to live with chronic illness and give other people hope that it's going to be okay.

Switching into the Role of a Patient Advocate

I’ve always been a person who is for the underdog and I think it's been a part of my nature. From the time that I was in the hospital bed---- let's say I was in the hospital bed for crohn's disease this was my third autoimmune diagnosis. Keep in mind, I had never heard the word autoimmune before. I’ve never heard the word autoimmune and I was now living with three diagnosis.
How is that possible? There are 50 million Americans who are living with an autoimmune disease. For a point of reference that's about twice as many as cancer and we all know somebody living with cancer right. There’s twice as many people with autoimmune diseases but we’re not talking about them. I remember being in that hospital bed and saying “This isn't right. This is something that I'm living with and I had no idea I never even heard about it before”. I felt compelled from that moment in time if this was my reason for being.
This is something that I needed to do help others. And so from that moment I actually left the hospital---actually while I was in the hospital I kind of started cooking up ideas for ways that I could help start to raise awareness. Then began the journey through the healing process, through my journey into remission. I spent time I got on Twitter and I started talking to fellow advocates, I said “I want to blog about my experiences. I want other young women and young people who are diagnosed of these diseases to know it’s going to be okay”. I just I knew from the moment I was in the hospital bed that it was really my calling that I needed to help others.

Visible and Invisible Illnesses

It’s hard to say advantages and disadvantage when it comes to physical versus invisible. And it's interesting because I've had conversations with other patients who have a physical disability. We’ve talked about the fact that, OK I have a physical disability somebody has a physical disability that so people automatically understand right. They maybe have empathy for you right away. But also people with physical disabilities get frustrated because they don't want people to now treat them differently necessarily. This woman was telling me once she says “People will like talk to me like I'm a baby, and I'm OK. I'm in a wheelchair but I'm fine”. There is an automatic empathy there. Invisible illness, it’s tough. People don't get it, they don't understand that when I am standing there and I look OK and I put makeup on the morning I might be exhausted. I might be to the point where I can barely talk I’m so tired. I can barely take a shower I’m so tired. But nobody can see that and they think I look fine so they think everything is okay.
I'll never forget I was on the MBTA, the local Boston public transit and I was coming back from work and I was in so much pain, my arthritis was flaring, I was sitting and an older woman got on to the train. People were looking at me like I should stand up to give her my seat, I was like “These people probably don't even know I am in worse condition than this older elderly lady standing here”. But, nobody saw that people just see what they think is a healthy 19 year old. In terms of society these preconceived notions and assumptions that people have about diseases can be really frustrating.
When people had found out that I have crohn's disease they’re like “Oh isn’t that a disease where you run to the bathroom a lot” I’m like “No, that’s not actually what my experience has been”. I actually have bleeding ulcers in my small intestine and that was the only symptom I presented with. Now that wasn’t a great symptom to be living with but that's a very different experience. Then when people say “Oh I thought only old people get arthritis”. Okay a little bit joke “you’re like an old lady” and it's OK, you get used to it but it can be a little frustrating.

Addressing Societal Stigma

Try to be open and understanding that all these diseases present very differently for each person and being respectful of what somebody is going through. Also, not jumping to the conclusion that like just because I look OK means that I am capable of doing everything that somebody else is doing. Sometimes I’m going to be so exhausted I can't go out to dinner because I physically don't even want to hold myself up, I just want to lie down and sleep.

Desires for the future of healthcare

If I had a magic wand! Oh god do we have 24 hours for me to just talk and tell you all the things I want fixed. I will tell you one of the most devastating things I have seen and thank God it hasn't happened to me. But one of the worst things I have seen from my work at Clara and my work with patients and advocates is the financial devastation that chronic illness can put on patients and families. I have watched and heard the stories of patients who they have jobs, they are contributing members of society, they have families and all of a sudden they are diagnosed with chronic illness in their insurance doesn’t cover the medicine they need you know they have so many medical bills that they just can't afford to keep up and they go bankrupt.
They lose everything and they were doing everything right. Although, they had jobs they were contributing to society, they lost it all. That is not fair. Because they were dealt this, they got this disease, they didn't ask for this disease. They didn’t asked to be diagnosed with a chronic illness, they didn’t do anything to prompt them to be diagnosed with a chronic illness. But here they are and this is the hand they've been dealt. They are not being supported by our current system as it stands and I have a huge problem with that.

Finding & Facilitating Patient Empowerment and Advocacy at Clara Health

I knew I wanted to dedicate both my personal and professional life to patient advocacy from the time I was in the hospital bed. I discovered through some of the work that I had done in healthcare already that the patient voice was missing in a lot of what we were doing. It's really interesting because I think the biotech industry has actually done a decent job bringing the piece of patients of patient voice in over the past ten or so years, but we're not seeing that on some of the health tech and digital side of things. So, it was really exciting when Clara Health brought me on as their head of patient advocacy and one of the founding members of the team.
It was refreshing to see that they wanted the patient voice in there from the beginning and so through this I have had the opportunity to both champion the patient voce internally and externally. What is most important to me is that we are doing is that is that we are empowering patients with the knowledge that they have the power in their healthcare journey. They own it, they make their treatment decisions, they decide how their care is managed. It is up to you, it's up to you to own that and to feel empowered to own that.
I think they lack that just because when we talk about this, i.e the societal constructs that are in place when you look at the doctor patient relationship. Patients need to know that this is my body, this is my choice what I do with it and I have every right to seek a second opinion. I have every right to challenge this diagnosis. I have every right to challenge the treatment options. That’s really important and so for me to have the platform to be able to do that with Clara Health has been amazing. To work on the Patients Have Power Campaign and empower other patients with this knowledge I couldn't ask for a better job.

Patients Have Power!

Patients have Power means to me that patient’s own their journey. It means all of those advocates that I have the opportunity to work with every day. I work with so many patients who inspire me to be more empowered in my healthcare journey, who are inspiring others every day to be empowered in their health care journey. We as a community are powerful. We collectively as patients have power and that’s what it means to me.

Contact info

Lilly Stairs: Website | Twitter | Instagram  

Clara Health: Website | Twitter | Instagram 

Anna Legassie | Six Hips and Counting

"We need transparency across every aspect of patient care right now. I know that it's very easy to point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases" Anna Legassie. 

 

Anna Legassie is an Athlete, Writer, and Advocate.

Welcome to Anna’s Health Journey

I have been living with systemic juvenile idiopathic arthritis SJA since I was eleven. I’m also one of the lucky few that has a positive rheumatoid factor, which means I have rheumatoid arthritis too. I have both auto inflammatory and autoimmune arthritis. I started becoming symptomatic when I was eight with mostly knee pain that was like my initial complaint. My knees hurt, I was a really active kids, climbing trees, running, riding my bike everywhere.Our pediatrician at the time just basically said “This is probably growing pains, take some children's Tylenol and keep an eye on things”. Over the course of the next few years it went from just knee pain to sort of all over joint pain, body aches, fevers, nausea , headaches , fatigue, and excessive bruising. I remember getting hit during a basketball game, like somebody just hit my arm and the next they had this massive bruise, massive swelling. Then finally I started getting rashes that would sort of cover my neck all the way down to my belly.
When I was in sixth grade I was eleven years old, I played the clarinet, I was very cool. I was ready for Christmas time and we had a big rehearsal for the holiday concert. We'd been sitting for a few hours and when we went to stand when we were done I just collapsed at that point. It was really just that for those three years I had been sick and my disease was advancing but we didn't know. My mom was already on the way to school to pick me up. I was admitted directly to the hospital, tested for childhood leukemia and cancers and it just took a while of ruling things out before somebody said “let's start to look at autoimmune disease, auto-inflammatory disease”. I was 11, it was December 21st, days before Christmas and that was when I got the initial SJA diagnosis. A few weeks later I found myself with really intense chest pain. The thing about SJA that's different than a lot of childhood arthritis is that it can cause inflammation in the liver or spleen, and enlargement of lymph nodes which is why they actually were looking at childhood cancer, leukemia, anemia as well as inflammation in the lungs and the heart. Here I am having this chest pain at the age 11 and by the time everything sort of transpired figuring out how do you treat an eleven year old with chest pain we found ourselves in the local ER.
I was in acute congestive heart failure because of such a massive buildup of fluid around my heart. We were airlifted to Boston Children's Hospital and was put in a medically induced coma for about six weeks really to protect other organs from failing as well. That was just a byproduct again of that the three years it took to get a diagnosis of my disease, as it kept advancing unchecked and we had no idea. SJA is a fairly rare diagnosis, so even after getting the diagnosis in the hospital people didn't really know what to do with it.Nobody thought well maybe you should have a chest X. Ray real quick on the kid before we send her home. I found a little bit of sort of stability for the next few years. Then at 14 I had both my hips replaced and at 15 I had surgery. So 14 was freshman year in high school; Both my hips replaced as a freshman in high school which still is a very strange thing to sort of think about that that actually happened to me. I would have had knee surgery on my left knee when I was a sophomore in high school. I had knee surgery on my right knee you know as a junior in high school. During that time it was actually when the first biologic drugs hit the market for rheumatoid arthritis.

Navigating Bureaucratic Insurance policies

I remember my pediatric rheumatologist wanted to prescribe one of those drugs, she was so excited. They first hit the market and they were F.D.A. approved for adults and I think in two years they got pediatric approval for them. We really finally thought we had some hope on the horizon for treatment, but unfortunately because this was sort of I don’t want to say experimental, but, new this is really the first time we had any of these biological agents. Our insurance company at the time wouldn’t pay for them. They said you know if there is not enough data in the pediatric population from a safety standpoint so no to those. I graduate from high school, I was eighteen years old and as soon as the calendar---it was literally just the calendar flipped and I was eighteen we could go ahead and re-submit the approval for those drugs and get started. Finally, around eighteen I had a little bit of sort of treatment stability in my life. We finally had something that was actually targeting the progression of the disease and not just symptom management, which is really what everything else is, whether it's steroids or NSAIDS. All they’re aimed at is managing the symptoms of the disease not its actual progression.

Living with chronic illness through early adulthood

Things are looking up, I go to college and I was still really healthy---well not healthy, but still a really active kid once I got my hands replaced. By the time I was twenty my right hip replacement failed for the first time. So I had surgery, had hip surgery again as a sophomore in college. I think I was twenty and then and from twenty to twenty six was really sort of chaotic both in my own life and my family's life. My mom was at the end of a terminal illness at that point and I was back and forth from school with her, my sister, my own doctors and sort of trying only keep my head above water at that point. My mom died when I was 22 and I came home from school permanently at that point to help take care of my younger sisters. I had quit my job and I didn't have any health insurance. So I was really self-managing my arthritis through those very palliative NSAIDS and steroids just with my primary care physician, because at that point I didn’t really feel like I could make my own health a priority. I really need to be there to take care of my family.
For a few years of me trying to re-enter the workforce and finish school and all that stuff. I finally had health insurance again and went to my doctor and started with new doctors. I was 26 and I found a new rheumatologist, a new orthopedic surgeon. My old surgeon had unfortunately retired. And the first time I met my new surgeon what was said was “I hate to be the one to tell you this but your hip replacements has failed catastrophically. There is absolutely no medical explanation for the fact that you're walking around. We need to get you in the you know OR A.S.A.P.”.I was back in school at the time like, wait a second. I need to finish spring semester and then I want to take a six week summer class that goes from June into July”. I was like “Let me finish that class and then we'll do surgery”. So I had a bilateral revision of my hip replacements when I was 26. I didn't really understand about that surgery before I've done it is you're going to be 100% non weight bearing on both sides to protect both knee joints.
I needed to go to a rehabilitate hospital for several months after surgery. I had to relearn how to walk I don’t think people really think of that being an experience for somebody who has arthritis. I was discharged and me being who I am full steam ahead and back to work, back to school and my six month checkup which would have been in January the bone graft of my right hip had failed again and so I needed to have that right hip operated on for a fourth time. At this point I was overwhelmed. Just very mentally overwhelmed by what was happening and I remember asking my surgeon “What would happen if we didn't do surgery like next week? Can I do like an additional long term damage?” He said “You're really not going to do long term damage, you're going to be an increasing amount of pain. Think about the socket where your hip goes into and this last line that they put the end it had separated and it was on a single screw and it was rocking back and forth. It was just the eroding one side of the joint and it just rocked back and forth”.
I just said you want to just push this out a year like really since I was eleven years old I had  no normalcy in my life. I just want to work, go to school, hang out with my friends and go to Red Sox games with my boyfriend. Like I don't--you know what- pause, we’re just going to press pause on all of this. And so that's what we did and I had the surgery the following January 2011. That was my last hip surgery, almost seven years ago, which for a long time I wouldn’t even say that. I was afraid that if I said its seven years I was tempting the universe and I would bring this more pain and suffering upon myself.

Arthritis, Surgeries and Resiliency

It’s taken me a really long time to let go of that and just appreciate that I didn't do anything wrong. This is just the nature of this disease, because even after you have a joint replaced you still have active disease in that joint and it still attacks the replacement in the same way that it attacks bone. I've had some complications too that made that bone graft failed. So that was my last hip surgery which is very exciting. Then it was kind of a period of status quo for about five years and sort of cycling on and off different biologic drugs as we tried them and they failed and in 2016 I was really starting to have a lot of trouble with my left wrist, like gripping things specifically.
I remember trying to hold water glass in my kitchen and I dropped it and it shattered. My boyfriend Ken was running in from the other room he was like “What happened?” I’m like “I don't even like know, I just can't hold things”. Really what it is, I have just such extensive damage in the left joint--out the left wrist joint that there's compression of the nerves. There’s all sorts of just not happy things going on in there. But despite all of this I’ve really liked clung to being active as much as possible. So it wasn't just like grip strength at home. I couldn't put pressure on it, like downward pressure to do yoga which is something I love. I Couldn't even lift weights even -- a 5 pound dumbbell, I couldn’t grip to hold it.
So I went to my surgeon fully expecting him to say you know we just need to replace the joint or we need to fuse it. I told him that I didn’t want to do either of those things because more or less I will lose all range of motion in the joint. His idea I which is a little bit--- I'm going to say unconventional, but basically what he did is, he went in and severed five major nerves in the joint. What that does is it cuts off the pain pathway from the damage in the joint to the brain and it also cuts off some of the nerves that were misfiring. It’s only has about a 70% success rate which is why this is not the first line of defense that they go with. But one of the ways they do identify if you're a good candidate is that they go in and they inject the nerves with that they're going to sever with light-a-cane beforehand and if you get pretty instant release--relief rather you're a good candidate.
We did that, I was a good candidate. I did the surgery, I was back in the gym 10 days later with this big funky wrist brace on. And then four months to the day after that surgery I had my third knee surgery on my left knee. I had injured my knee running, but I also knew that there was a lot of other things going on in the joint. I went in, had arthroscopy surgery. They fixed the meniscus tear which is what I had hurt and they also just went and scraped out everything else. More or less bone in the joint, ready for a new replacement as soon as I say go. Some days I feel like go time is like tomorrow and other days I feel like let's put this off as long as possible.

Mental capability of Coping with Chronic Illnesses as a Child

I see this now as an adult and being really lucky to have nieces, nephews and all sorts of wonderful little’s in my life. Kids are so unbelievably resilient, it's just amazing to me. Kids don’t question certain things that we do as adults. Because I got sick at such a young age I didn't really have a normal that other kids did. So I knew that I was going through other things that other kids weren't but I didn't really question it. There was just here it was, much like well this is what I have to do. I have to take this medication or I can't get out of bed. I have to have this surgery so I can get off crutches and walk again. I was on really high dose steroids. Of course my face swelled up, I was easy target I was an easy target for a lot of teasing, a lot of bullying. I think a lot of times kids bully kids when they're sort of afraid of what's happening and I think a lot of my peers saw a very pretty popular healthy athlete one day and somebody who was very very sick the next day. I think that even at a young age my peers probably in the back of their head appreciated that that could happen to them too.

Managing Trauma from having major chronic illnesses, multiple surgeries & consistent series of hospitalizations as a child.

The mind goes to a great length to protect itself and to sort of protect us as we navigate this world. I have been a patient the same hospital for 23 years now, I also work at that hospital now which is wonderful. But there are times when I am running to meetings and I cut through a different clinical part of the hospital and it might be somewhere that I haven't walked through in ten years. Very recently I was---I need to have an M.R.I. and so I went to radiology and they're like “Anna you know better. You know that M.R.I. has moved over here, you need to go here”. I was like “Oh right”. So I as running and I went down this flight of stairs and the flight of stairs was in the pediatric wing of our hospital and I was overwhelmed by this memory of when you're on crutches as a kid-----They probably do this to adults also, but I wasn't allowed to go home until I could navigate as many flights of stairs as I have to get home. so at my house growing up there is the front entry stairs and I lived in a split ranch, so once you came in there was the stairs to go up to the main living level.
I had to be able to successfully navigate two flights of stairs and this stairwell. I hadn’t thought of that in so long and all of a sudden I’m in this stairwell almost 35 years old and I was shaky and I had to sit down on the ground and sort of collect myself and just acknowledge that trauma of everything that I had gone through associated with that surgery and sort of like find a way to manage and let it go and get to an appointment and on time. But it's such a wide spectrum of how I feel about being sick as a kid. Some of it is like a very neatly packaged up into these sort of boxes, very compartmentalize. And even as somebody who goes to therapy religiously and is not embarrassed at all to say so, there are some boxes that we've just not unpacked and I'm not in any big rush because they’re so big to try to take on.
Then other days certain memories or traumas from being sick as a kid just come back and they hit me so hard and it's just so intense to try to weave those into the narrative of my adult life, because now I have an appreciation of really how intense that I had to go through all of this as a kid. How do you think that as a young adult and even to a certain extent as an adult now I am fueled by a good amount of anger and frustration with some of this and it’s taken me a really long time to get comfortable with acknowledging anger. I am like a very non-confrontational person. Confrontation makes me really, really uncomfortable, I don't like being angry, I don't like having fights, I don't like witnessing other exchanges.
It has taken me a really long time to just accept that it's okay to be angry about a lot of these things that have happened to me. And some days I’ll joke with friends and be like how are you doing and I’m just like “Well I'm just a little fireball of rage”. What I've been able to do I think, to a certain extent is acknowledge that anger and then always try to find an outlet for it. so on good days it's you know where I'm very active, it's going to the gym I'll go to the gym for two hours and it's like I don't want to talk to anybody else. I just want to go there and work through my own stuff and just deal with it that way. On my bad days it's just acknowledging that it's okay.
If you mire in that for a day it's not the end of the world and you’re not a bad person and you're not mentally weak. But as a kid I also had parents--I came for a feelings family. My mother's father was a psychiatrist. Being able to express and articulate emotions colorfully is accepted to my family. So I was given space to be angry, what I was never given space to feel was pity for myself. I was never allowed to feel bad for myself. I was expected to go to school when I was able to go to school, I went to school. When I was doing well enough to play sports or go to gym class that's what I did. I was expected to do chores and participate in my family. My mom would bring in laundry baskets and put them next to me and be like “Okay well you can’t vacuum, you can't set the tale but you can sit here and fold laundry”. My parents really tried to give me as much as much normalcy as they could but also still that space to be angry or upset or frustrated because I'm sure as parents they felt it too.

Advice to Chronically Ill Patients

It’s so hard to give other patients advice, even if we have the same diagnosis right, because a lot of the stuff that I've gone through for me sometimes feels like it pales in comparison to what other people have gone through. Then other times and I'm just going to say this and not feel bad about it, sometimes as the other patients I’m like “Can you just like get it together” and that's not very generous of me and I shouldn't do that because I don't know anything that's going on in their life, that there's just such a like wide spectrum of pain and disease progression. I think the biggest thing is finding an outlet that feels good for you. I strive to be super athletic and super active because that is such a core part of who I was as a kid. That sort of anger and that rage that I talk about, a lot of that stems from being a kid who was on the trajectory to be a state if not nationally ranked runner to being a kid in a hospital bed. So every time that I can fight and claw and take even like a little piece of that back, that sort of what helps me keep it together is feeling like I'm not losing ground and I still have part of that as my identity.
That’s not for everybody, it's not appropriate for everybody. I see so many patients that are passionate about art work or they sing or garden or they cook. I know patients that train animals. I think that you can feel angry, you can feel pissed off about all of this. You can feel sad, you can feel like down in that dark place. Now the sunken place is a very popular thing thanks to Kanye on twitter yesterday. But you have to find something that you want to climb out of the hole for. Whatever that is, you want to have kids, if you want to work, if you don't want to work, if you want to volunteer or whatever it is helping find something that feels like a good place to take all of this and direct it at that. The worst times in my life right now even as an adult and being somewhat well adjusted with all this are periods of inactivity when I can't go to the gym.

Perspectives on Achieving Human Centered Care; Advice to all Actors in the Healthcare Space

I love my hospital but it's not perfect because no system is and I think for patients with chronic illnesses in the biggest places that the health systems fail us is by being so sort of like locked into lab reports and that's live and die by the lab report. Good labs mean you're doing well and bad labs mean you're doing poorly. But there is not necessarily but the holistic approach of what that all means. My disease is pretty stable right now and that’s great. So sometimes my labs look good, but what I feel in response to them feeling good there can be a big gap. So whenever I'm talking to new patients about; how do you get to know your providers, how you advocate for yourself etc. I think it's really important that doctors and providers are able to look at the patient as a whole person.
These fifteen minute encounters that we have with our doctors and then they have no idea of the last four to six months of our life depending on the specialists that happened outside of those fifteen minutes. So I worked really hard to get my doctors and my care team to understand what are my life goals because treatment goals really don't mean much if they aren't supporting life goals. When you've been sick for a long time you're able to normalize a lot of things, you're able to normalize a lot of pain, a lot of suffering. you're able to normalize not being able to do things. And when I really decided that I wanted to get more active, that I wanted to lose some weight and feel healthier and happier as a whole human being, person and somebody in a relationship, where there's intimacy and all these different things that make you a whole person.
I realized that I wasn't doing a good enough job saying “I don’t think this treatment is working anymore and we need to try something new”. And so that's kind of I'm always trying to get you know help patients with is “What are your life goals and what you want to do? Do you want to garden? Do you want to be able to pick up your grandkids and have that not be painful? Do you want to walk around the block with your dog? Like what is your big goal in life right now that your illness is an obstacle to? Okay well your doctors need to understand that anything short of that is a failure on their part, which is kind of a harsh black and white way to say it but I think doctors should be motivated to help their patients live really full happy lives outside of their office”.

Most Urgent Need in fixing Healthcare Today

We need transparency across every aspect of patient care right now. I know that it's very easy to like point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases. The fact is, health care as a good or a service or a product is the only thing that you buy without knowing the price up front. The lack of transparency by providers whether it's hospital or doctor or whatever physical therapist doesn't matter, the lack of transparency on what you're actually paying for your care is galling and should be illegal.
It would be illegal for almost any other service. The lack of transparency on the insurance side of what informs their decisions. We really don't know and of course we saw and I don't necessarily like to name names, but we saw a major plan recently come out and say we didn't actually review any of the information in the period of peer medical review. We didn't do that, so there's no transparency and how coverage decisions are being formulated and then when you do get to pharma there's not a lot of transparency in how they price their drug. So this lack of transparency just to me is one of the biggest drivers of cost because--these three systems are not talking to one another. These three systems are entities have no incentive to work together. There’s so much tension that at the heart of it all is the patient and patients are suffering, but the lack of transparency at this point I just don't understand how much longer we can let this go on.

Transitioning from Patient to Patient Advocate

I was given a lot of agency in my care as even a very young child. I was always allowed to question things and to question decisions and ultimately if it did necessarily put my life at risk I was allowed to say no to things. I made judgment calls when I was in high school to come off certain drugs because for me a lifestyle standpoint I could not take the side effects anymore. So advocating for myself has always given me a sense of empowerment in my own illness. Really it was six or seven years ago I had sort of reengaged with different foundations and was back doing a lot of fundraising.  
Fundraising is great and really necessary, but when I talk about things that fill you, fundraising is definitely not one of those things. And I was approached by an organization to attend their advocacy summit in D.C. and I just remember sitting in this room, like a hotel ballroom for a conference and I was like interim, was just like oh my gosh this is what I was supposed to be doing. I had no idea that I could take my story or what I wanted to do to advocate on behalf of myself and it can be powerful for other people.

A Wish for the Future of Healthcare

I think “patent-centered” is a word that's getting used a little too loosely right now. I think that a lot of organizations set out to be patient centered and what I see is their biggest shortcoming, whether it's payers or drug companies, startups, hospitals, whatever is their design solutions for patients, whatever they might be within the healthcare system etc. They get down this process and they have version one and two and three and then they invite patients to the table to basically weigh in on whether this solution is valuable. It's such a waste of time to everybody and at this point I say no to these opportunities because I'm planting my flag on the fact that I want patients involved from the word go.
If you're calling something patient centered no matter what it is, whether it's on the state side or the federal side, F.D.A. The F.D.A. is always forming new patient groups, whether it's a payer, hospital or pharma company wanting to do some nice, happy feel good P.R. If patients aren't in the room from the jump then you've already failed. The other thing is that as we look to patients and we empower them to be a part of this and drive process and drive change---when I see patients paid I feel like the system just sort of continues to take from us and suck us up, chew us up and spit us back out. It's not really equitable to ask patients to help drive change without compensating them accordingly. So involve patients early and often and pay them and compensate them as the experts that they are.
A lot of people know me as Six Hips on Twitter which is sort of the condensed version of my blog, which is Six Hips and Counting which I can take no credit for. My best friend Jenny who's an English teacher and far more creative than I am came up with that. Hoping to stay at just six hips for a while, but on Instagram I’m Anna_Evangeline. I really put kind of my whole life out there for better or for worse. Always looking to connect with more patients and more projects like this!

Contact Info: Website | Twitter | Instagram

Howard Chang "The Itch to Beat Psoriasis"

"Because there's a wealth of new drugs and options for people with psoriasis. Unfortunately people can't afford them or they don't have access to them" Howard Chang, Min


Rev. Howard Chang is a psoriasis advocate, a blog writer for Everyday Health called The Itch to Beat Psoriasis. He is a social ambassador for the National Psoriasis Foundation and is also a part of their Advocacy Network in the Western Region.


Howard’s Introduction to Blogging

I started blogging for psoriasis on a site called Health Talk about eleven/twelve years ago and the site just started out with some patients that were blogging. And so I said----You know I was at a point where I was really struggling with my skin disease and had started dealing with it better and thought that it would be a great opportunity to share my experiences living with psoriasis. When I first started there were very few people who were blogging, there wasn't really that much social media at the time.

It really was an unmet need that I saw and I also saw that psoriasis being skin diseases is the kind of condition and people would try to hide from and maybe stay behind doors. They would withdraw socially, so I thought writing was a great way especially as the Internet was developing to get into people's living rooms, to speak to people who were feeling very alone with the condition and really struggling on their own.

Psoriasis & the Lack of Representation of Diverse Populations in the Media

I never really thought about being Chinese or being Asian and having Psoriasis. I just thought I have psoriasis and I want to share my story, but it's true, just in general in the media Asian Americans are not represented especially out here In the West Coast. We're a lot greater in percentage of the population is Asian and we don't really see that represented in the media.

I definitely agree with that, that there are fewer Asians out there and people who are minorities who are advocating. I go to conferences to advocate--with other advocates or psoriasis conferences and there are few Asians. I think it's something that I've become more and more aware of and proud to have been the vanguard or to really get that going and hopefully others will step into the gap as well.

Bridging the Gap with Resources

Online resources are great and there are also groups that may be meeting locally with the National Psoriasis Foundation or other organizations, advocacy organizations, but definitely the foundation is the big one that I and other advocates are part of. Online resources and getting online, there's so many more resources now than there were when I started blogging.

It's really incredible that there are advocates from all different walks of life and backgrounds that you can connect with, that you can talk to, that you can tweet or go on Instagram or Facebook and so forth to make that connection. Sometimes it's not that easy to do it locally or even with their own family.

Getting involved with Policy Advocacy

I volunteered the National Psoriasis Foundation and just recently I got more involved with advocacy and legislative work. Last few years I've gone to Sacramento which starts state capital here in California and we've worked on different health care bills that are primarily related to access to care, prescription cost, benefits things like that.

There's a wealth of new drugs and options for people with psoriasis. Unfortunately people can't afford them or they don't have access to them or they don't know about them and sometimes the legislation and just the way that the health care system which is so complicated that I don’t think anyone can really figure.

But it's inhibiting people from them to be able to get the treatments that they really could use ad needs. I started Sacramento and---just this March I was able to go to Capitol Hill as well, which is an awesome experience. It was the first time that I’ve got to do that, but I've done about four or five state advocacy days as well as the Capitol Hill day of the National Psoriasis Foundation in March.

The Foundation is the largest advocacy group in the world. It represents the eight million people in the states who have psoriasis. They’re based out in Portland but they're really national organization and they have an incredible website and that's a great place to start. Its www.psoriasis.org. It’s very easy to remember and they have pages there for all kinds of things.

There’s a patient navigation center that you can ask questions about anything and there is also an advocacy page and it's a great way to get started to see what are some ways that you can get involved. Getting on a mailing lists, writing your legislators, get involved in some local events, that kind of thing can be found on the website and you can get connected with stuff there or any of the advocates like myself who volunteer with the foundation.

Health Care Legislation, and the Power of the Patient Voice

I used to think that way too, government just seems like a big mess and (questioned) do they really do anything. It’s gridlock, but health care is one of those issues that we can't afford not to speak up about, because it affects our lives and not just our own lives but we need to raise our voices to help others as well. The meetings I've had at the different legislative offices and staff have been really incredible.

You realize that there are people like you, like to me, who have relatives or friends who have different conditions. Many of them we talk to and they say “Oh yeah I know someone with psoriasis” or “I know someone with arthritis” and this affects them too. When you make that that connection, that human connection it does make a difference, they remember you and they'll think of you as the legislation comes out.

Psoriasis, Insurers and Step Therapy

Step therapy is one of the first issues that we dealt with here in California, I think we might be a little ahead of other states in this. But step therapy has to do with insurance making you fail certain medications first, before you can try the one that is prescribed for you by your doctor. They call fail first for that reason. It’s usually cheaper medications, it's not always that maybe the deal the insurance provider has with the Pharmaceutical companies or just their cost structure. But, there's a tendency that you have to go through these other medications first.

The problem with that is if you're starting with something that may not be effective for you or maybe that you've been tried in the past but because you changed insurance providers that you're not going to get better on that. And for some conditions like arthritis you may actually end up starting to lose joints or you may lose health permanently and not be able to get that back. If the doctor says “Yeah you do need to start with step one” then that's great, but it's between you and the doctor and what the doctor thinks, and insurance should not get in the middle that.

Yeah I would love to believe that when I'm in the doctor's office and what we talk about inside is what's going to happen for my health, but unfortunately there are other people in the room. They’re hidden, but there is someone who is holding the purse strings with the insurance provider. There may be a pharmacy benefit management company, they may be others who are having a say in whether decisions are made between the doctor and myself will actually be carried out or not.

I’ll give an example of this just this last year I had one drug that was prescribed to me and insurance provider said they're not going to cover it even though it was a psoriasis drug because I was on another psoriasis drug. The whole point for them was that well there's no literature to say that these two medications will work together.

But, when you have a severe condition like myself you need to be creative and it may not be well studied, the ways the combinations, but the doctor needs to have the full toolkit in order to kind of treat. So that was a completely frustrating conversation with insurance. We petition and appealed multiple times but eventually just gave up and got it straight from the manufacturer.

Another time I wanted a phototherapy light unit, a home unit, which is only a few thousand dollars but again they said no. We went through all the appeals process and I end up buying it out of pocket with the help of friends and family. So there are many times that you have to find a way because it's your health, but you don't always get from insurance the coverage that the doctor would like you to have the medications that you need.

Howard’s Advice to People living with Psoriasis

First off, I want people to know that there are others who are going through that themselves. Before when I was with a different insurance provider I never had and these issues. Maybe just their system that if the doctor prescribed it I got it. When I moved out here and I got into a new insurance system I started having to go through pre-authorization and all these issues that I've never had to go through before.

There are others who are going through it too and patient advocacy groups is one way the foundation that we mentioned The National Psoriasis Foundation, they have staff, they have resources to help deal with insurance issues which is one of the biggest issues that they deal with when they work with patients. There are people who are advocating and people who can speak up for that, who can help them navigate this very complex system on how to get their medication, and how to get the help they need to get better.

Addressing the Complexity of the Issues Within the Healthcare System

When I was in Capitol Hill I was talking to our advocacy staff the National Psoriasis Foundation and what I gather from them is that these issues are so complex and that if you try to change one part of the system that affects another part. They're trying to be as careful as possible to not affect the system in a negative way by getting one thing and maybe hurting another area. Areas that we've been advocating, i.e removing step therapy, capping the cost of prescription drugs especially space them out for the year, etc. getting assistance for those.

Those are kinds of issues that can increase access to care and so that patients receive those with chronic illness who need medication. Patients who are getting more research and better medications but they cost a lot, so they're not able to get them, there's a way for them to get those medications. That said, I think we've come a long way cause I remember the days where if you have a preexisting condition you can forget about getting insurance individually, as a family. But I think that we---the system is still struggling to support those with chronic illness because the costs involved and exchanges struggling with costs as well. I don't know if I have the answer for fixing the problem. Suggestion: Try to understand just from a patient advocate perspective, it's seems way beyond me.

Perspective on the Future of Healthcare and the Patient Voice

I'm hopeful that the patient voice gets out more and more. It seems that in the past the doctors, pharmaceuticals companies, that everyone was impacting the system and getting what they need out of it. The patient was just passively receiving whatever was decided for them. Now that we recognize that the patient voice is so important to legislation in how we craft, message and also in the decision making. In the past it was well the doctor knows it all, he's going to prescribe you what you need and you just take it you do it, that's how I grew up.

Now it's a collaborative environment where there's so much information on the internet, there are so many people that we can talk to collaborate with. We're not doctors. I'm not a medical doctor but I know my condition.I know myself and my health better than anyone and so for me to have a voice in that and then also to just be speaking into these other arenas as well, whether it's legislation or in just how we’re to talk to patients. Sometimes we're talked to in the ways in language that is offensive or it's not sensitive, I think these are all areas that the patient voice can be elevated and have more impact.

The Itch To Beat Psoriasis

My columns on Everyday Health, it's called The Itch To Beat Psoriasis and my primary concern is the emotional and spiritual healing. I write a lot about the emotions of living with chronic illness and living with psoriasis. I also have other areas that I write about like relationships or just all those impacts that a disease can have on you that is more than just treating the disease itself. Sometimes I do talk about the latest treatments and I talk about medications. I usually relate it to just the whole person and that's my goal, that there's a holistic healing for the person. Whether there's a cure or that disease goes away or not that we can live a full active life as we would desire to. I think mental health and quality of life are issues that we're talking more and more about because we're not just treating a physical condition, but that physical condition. It's almost like a war that we're fighting and that it never ends.

It’s a day after day battle and so that kind of battle wears on you. It can be frustrating, people with psoriasis deal with chronic itch times, deal with treatments aren't working as well and so that wears on you. There is the fear the unknown. It's an autoimmune condition, inflammation can flare up at any time. All these have been shown to produce depression and anxiety even suicidal ideation and so forth. Some things I do for myself to kind of keep calm or to help with my anxiety is pray. I'm a pastor and so I really believe in kind of that quiet time, to pray and to gain perspective.

Effective Mechanisms to Cope with Psoriasis

If my body is not doing well, if my outer world not doing well, I can do something about my inner world and I could find refuge there. I kind of go deeper within. The worst my condition is, the worst my health is, the deeper I go inside. I like to do other things like exercise, I run three or four times a week and I'm very grateful I don't have arthritis like some of my fellow advocates. I get out there and exercise and play with my kids. I have hobbies, I just started to ground coffee and make espresso. Just little things that kind of keep my mind off work and off of my health that kind of thing. I have a dog to take him out for a walk. Take a bath and just use some oils that will help with my skin and relax me.

Just all kinds of ways that I learn how to cope with it. There are times where I've had to go see a counselor or to talk to a friend just about it. Sometimes I don't want to talk because it's “that again”. I don't want to bother people again because it's--but I still have a chronic condition and so I may be chronically talking to you to get support and to share about it. Having people like my wife---she doesn’t know exactly what it's like to have Psoriasis but she's very empathetic and she's a great listener.

The Role of a Supportive Social Circle

Having support, church network is supportive, they ask me “How's your skin doing?” Sometimes it takes me off guard that people are checking in. It doesn't help me if someone says “Oh I know what it's like, you know I've had this rash you know or had poison ivy or something”. I said well it's not quite the same but just to be able to say “You know what you going through must be it's really difficult and challenging” or “Is there some way I can help out?” These kind of things help when we're feeling overwhelmed. Those are things that help, that help me when I'm struggling through it.

A Call for More Patient Voices on Social Media

It's been great to see more and more people getting involved in blogging and social media and spreading the word and I think that we need even more people. If you've been helped or if you've been supported by those who have gone before who have spoken up, put themselves out there and you feel like you can do that even just a little bit, even if it's not online but just locally. Getting involved in some way it makes a difference. One person makes a difference.

I started out wanting to help one person and I found out that I did help one person when I helped others and that was me. There are so many different ways that when we help others we gain, so get out there and get involved and help that one person out. Check out my blog at Everyday Health, it’s called The Itch To Beat Psoriasis. I also have my own website called psohoward.com, my Twitter is @HChnag316 at and I also have The Itch To Beat Psoriasis page on Facebook.