Fort Lauderdale, FL | Minneapolis, MN | Chigago, IL | Boston, MA| California | Cleveland, OH |Read More
Fort Lauderdale, FL | Minneapolis, MN | Chigago, IL | Boston, MA| California | Cleveland, OH |Read More
"The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma. Get past the negativity of addiction and see it simply as what it is and that's a disease" Ashley Elliot.
My story more often than not, coincides with addiction. I am a recovering heroin addict. I've been clean since December 28th 2012 and since I've gotten clean I decided to take a path to help others whenever they're struggling. I know for me when I felt hopeless if it wasn't for the women in my life that had lifted me up I don't think I would have made it .
My goal is to help those find hope that think there's no hope. In my darkest days I would say I probably had no idea what was going on at any given time. I went from being an all honor student in my freshman and sophomore years of high school-- straight A's to slowly decreasing my workload. I was a merit student my junior year and by the time was a senior I was a general student. Luckily enough I still graduated with merit a diploma.
That was the start of the dark days that really just kind of involved drinking along with experimenting with a few different substances, nothing too extreme. By the time I had graduated high school I would consider myself pretty deep into my addiction not rock bottom but still pretty deep. What would happen over the next twelve years would be me finding my own, falling in love.
I always made the joke that heroin was my first love, it never failed me, it never let me down. Every time I wanted to do something it changed the way I felt, it did just that. After that point it was really weird. I went from using to needing and I don't remember it. I don't remember when I went from recreational use to addiction, to dependency.
I would go through several different treatment centers, methadone centers. I tried suboxone. I tried moving to California. I thought if I just packed my bags, leave and go somewhere else where nobody knew me I could just start over and be whoever I wanted to be. The problem with that is wherever you go there you are you know. At that time I didn't realize the problem was me. I thought it was the drugs. I was in two very abusive relationships. The first one was we were living in Nevada and he ended up head-butting me and breaking my nose in the front lawn of our home. Shortly after that I had ended up running into an old friend out in California. She saw me and I think I’d probably been about 140lbs at the time. My collar bones were sticking out, I was rather frail. She bought me a plane ticket and three days later I came home.
When I came home I just got involved with the same people. When I did that, that’s is when the legal stuff started happening. The first time I ever got I trouble I had actually lived right up the street. The apartment that I was living in got raided and that was the first time I had been arrested. After that point it was just one after another getting arrested. Eventually I tried to do it on my own. Got involved with another boyfriend who was rather abusive. Fast forward my first treatment center I decided to leave AA, which is against medical advice. My thought process was; I was going to leave, come home, use go to court and go to jail
I was okay with that. I thought that was a solid plan to me. That's how crazy the disease of addiction is. I did that, I left, I came home, I used, went to court and the judge said “Punish her to rehab”, which was not a part of my plan. Over the next two months I had to wait 30 days because I left AA. I had to wait another 30 days for a bed to open up. Within those two months the apartment I was living in had burned down. Under the Influence I had fallen asleep on my hand for an extended period of time which caused something called Saturday Night Palsy.
It’s where an addict or an alcoholic passes out on the extremity and does nerve damage. I had no use of my hand for over three months. I was an I.V. user and there was a point in time where a needle had broken off into my arm and I left it there for six years until I had gotten clean and got a straight head on and I had surgery to have that removed. My kidney functions are extremely low. The way they explained it to me is that my kidney function is that of a 70 year old. I think that's due to all of the different opioids and the wear and tear on the body.
A big part of the health effects is the emotional state that people wanders in while being in addiction---I'm a very outgoing person and I can talk to just about anyone, anywhere about anything. When I was using, I was afraid to leave my house. I'd lived less than two or three hundred yards from a grocery store and it took everything inside of me to get up, get myself dressed to go to the grocery store just because my anxiety levels were so high. A lot of people use to try and escape their feelings of depression or anxiety.
In reality the only thing it does is increase this. I was going through panic attacks, and a lot of the different medications. I was having on medication induced seizures. I just think of it I felt like my body just couldn't go anymore. My sister pointed it out the most. The way that my family always knew I was using, was how much I weighed because I would get her periods of extreme weight loss while using and then gaining that back while attempting to get clean. The health effects I had have lasting effects, psychologically, physically, and emotionally. It takes a long time to heal all that stuff, to accept it, deal with it and move forward with it.
I do honestly say that without my sponsorship family I don't think I would still be clean today. When I went into treatment the first thing I told my counselor was “I'm going to tell you I want to go home, not to let me go home. Don’t let me go home”. But she didn’t, she relocated me to a halfway house down in Frederick Maryland. While you're in treatment it's basically almost like a brainwash. I’ll say if I needed to be brainwashed to get away from whatever I was doing before I was totally okay with it. I really got involved in a twelve step program. It took me about six months after I was really involved in the program to be clean.
The reason that is like I said look for my clean is December 28, 2012. This was the first year I was down in Frederick, I was my first Christmas. I remember I was getting ready to come home and my sponsor and I had come up with this plan where I stay at my sister's, she's my safe zone. No contact with old friends or ex’s. I didn't do anything she suggested. When I went home I think the first thing I did was contact my ex. he brought my dog over. My sister's kids were so I ended up staying at my parents which I ended up using, so I'd used all over Christmas. It was December 27th, my best friend and my sponsorship family called me to wish me a Merry Christmas. I thought what we had was just a normal conversation. When I got off the phone probably less than five minutes later my sponsor called me and trying to walk me through my thought process.
I had my dog which meant I saw my ex, I was at my parents which is not a good place for me. She was trying to get me to realize all the decisions I was making weren’t necessarily the best ones. The last thing she said to me was---she worked the night shift as a security guard at a prison and she said “I don't have to work tonight. I don't know if you want to white knuckle your way through this situation, but if you don't I'll come and get you”. I was kind of just like “Okay you know I'll think about it. I'll call you back”.
When I hung up the phone it was at that moment that I realize that these people that I barely knew six months really wanted nothing but the best for me. I think that was my reality check. I ended up calling her back and I said “Come get me”. My sponsor and my best friend drove three and a half hours from Frederick up to Garrett County in the middle of a snow storm to pick me up and take me back home. That’s why I consider the 28th my clean date because I haven’t used since. I don’t drink, I pretty much don’t do anything.
Throughout my early recovery and my first year or two I remember a period where it was around my first year clean and they say in the twelve step program that at your anniversaries you start going crazy. That's what I was experiencing. It was around my first year I had no idea why but I just wanted to mess things up. You know I knew I couldn't quit my job because I needed my job. I liked my friends so I didn't want to screw anything up with them.
I just couldn't come up with anything to ruin, but that's all I was thinking about because I was an addict. A lot of times my first thought is self-destruction especially when I can’t deal with feelings whether they be good or bad. I remember texting both my sponsor and my best friend and telling them that everything I was doing was reminding me of using.
My best friend sent me this long message of all of the things she knew about me through my active addiction, including you know the abusive ex's and going to jail and all that stuff. Then she sent me another message of everything that we had done in recovery and now. I'm saying your first year of recovery I lived more than I did in those twelve years of using even though I went all over the place, California, Nevada etc.. I still didn't really experience anything because I was never present in the movement. When she sent that to me she followed it up with “Think about those two and then tell me if you still want to use”. I was living with my sponsor at the time, I’d gotten home and she told me to get dressed and I didn't know why, she didn't tell me. She just tell me to get dressed.
I got dressed and my grand sponsor, which was her sponsor showed up and they took me to a baseball game and made me sit there. I sat at this baseball game and I cried. I cried and I cried and I cried and my grand sponsor's theory was always “When you don't know what to do you sit on your hands”. That's what I did. I just had to sit through it and here I am at the Frederick baseball game, everyone’s having a heyday and I'm bawling because honestly I don't know why.
Situations like that, like if they weren't there for me in those moments, if I were to allow my own thought process to continue I eventually would have came up with the idea of the best solution right now is to go use. I strongly agree that a social support, an emotional support, it is a key component of recovery, you cant do it alone. It’s a lot easier when you have people who understand what you've been through.
I know for me sometimes it's tough with my health issue trying to talk to a doctor and being taken seriously. I'm a recovering addict and once they hear that, the word human being goes out the window. It's definitely tough and sometimes you've got to have thick skin because there are some pretty mean people that have a very closed mind and aren't very understanding. I kind of just smile and nod at those people. It’s been six years since I entered my first treatment center and in two days I'll graduate from college. That's crazy to me to think back to where I was.
I remember when I went to MedX to speak on a panel session. Standing outside and seeing the big sign that said Stanford University and I just thought to myself “How did I get here?” I didn't understand it was so weird. I do attribute it a lot of this to Regina Holliday. If Regina hadn't brought me to Cinderblocks, if she wouldn't have asked me to share my story, all of these other people wouldn’t have heard it and I wouldn’t have had the opportunities that I've had over the past year. I remember when I told my family what was wrong with me, what was wrong with me being addicted to drugs at that time.
It was suggested to me by my counselor at the treatment center that I was at. I was an outpatient methadone treatment center. I gather my family together granted my family is well known in the community. My brother in the department of juvenile justice for 20 years. He’s the Cub Scout leader. Everybody knows my brother, both my sisters, one’s a teacher an elementary school teacher and the other one is a guidance counselor secretary. You could definitely say I was the black sheep of the family and I remember when I told them they didn't understand because they didn't know and they didn't know anything about it.
If people were more educated about addiction, what causes it. The interactions, the pharmacology between the different substances. How they affect the brain. Just stepping outside of their shoes and trying to look at it from a different perspective I think that would have a huge impact on things. A lot of people feel shame and guilt because of their addiction and are embarrassed to talk about it. One of the doctors on the panel at MedX said it best, for years addicts have been lepers. That's what we are once you have that label there's no turning back. Again, when people don't have that in mind, the empathy or compassion to understand, they don't get it.
It’s a fruitless battle. I definitely feel that education, knowledge, understanding simple human being decency is needed. Nobody deserves to die no matter what they choose to do or chose to do it, I hear that a lot. “They chose to use so they deserve to die”. I can speak from experience that there were many times I used against my own will. I did want to be doing what I was doing but I knew physically I couldn’t go on without it because I was dependent on it. In our twelve step program we say “Drugs aren't the issue. Drugs are side effects of addiction”. Our real problem is the way that we think and the way that we feel and not being able to cope with those things. It's exhausting and it's long it does take a lot of motivation. I would say self-will but that's really nothing at all one has to deal with.
Whenever I was using in this small town I had no idea about resources because it wasn't something people talked about. I remember going to treatment and going to my first twelve step program and they're like “You’ve never been to a meeting before?” and I had no idea what a meeting was. I didn't have the resources here. The more we talk the more we bring it out and the more we bring it up, I think the quicker we can get past the stigma.
Get past the negativity of addiction and see it simply as what it is and that's a disease. Much like a diabetic who takes their insulin every day, an addict get a daily reprieve by simply choosing not to use and more often than not when the addict that chooses not to use is a miracle. Because everything in my being says use, use, use and every day that I choose not to do that is a miracle and nothing short of that.
"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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
"The cost of care needs to me more transparent, more predictable and more reasonable. There is nothing like the fear of not being able to afford what you need, or going bankrupted" Danny van Leeuwen, RN, MPH, CPHQ.
"I think you learn what works by trying things. The life journey for an individual, for me, for you, is an experiment. The way I look at it is, that I'm trying to accomplish something with my health journey. I have multiple sclerosis, its a progressive disease and I want to progress as slowly as possible.
I'm also a person that's pathologically optimistic, and I don't want to mess with that. Its a real strength to be optimistic, I feel better having a positive attitude. I also play the baritone saxophone, and I don't want to mess with that. Those are the three things that I want to accomplish, so I need to experiment with the things that are going to help me accomplish those health goals.
I can and I do go to research and try to learn what works for populations, or groups of people. Just because something works for groups of people or is likely to work for groups of people doesn't mean it will work for me so I feel like I need to try stuff. If it doesn't work then I need to adjust and try something else, so I think its experimentation".
"You don't create empathy. There are people who have no empathy, there are people who have lots of empathy and then there are people in between. I think what you can do is foster the situation where empathy can exist and grow. Its very challenging to be empathetic when you have 8 minutes as a clinician, to spend with someone when theres this whole list of things to do.
You're consumed with checkin all the boxes and its hard because empathy requires listening and reflexion, which means you have to pause and think about; what do I see here in-front of me, whats the story I'm hearing, whats behind what their saying. That takes a moment, and when you're really rushed its really hard to do that".
"The cost of care needs to me more transparent, more predictable and more reasonable. There is nothing like the fear of not being able to afford what you need, or going bankrupted. The next thing is the availability of information. My information about me, is mine. Right now information is so silo, its so dependent on the platform, i.e electronic record, the setting. Its very difficult to share that information amongst settings.
As a patient I want to have access to all the information there is about me, I'll pick and choose whats important and whats not. But, I want to be able to have access. I also think that the way healthcare is setup is by episode and diagnosis. An episode is a snapshot, its a moment in time. A diagnosis is a label about some aspect of my dis-health. I think policy makers should focus on longitudinal care over time, thinking about me a person, rather than a diagnosis".
"It would be good for people who go into the healthcare profession to spend a day in the shoes of people who are living in the setting their in. If their a patient, spend the day in the bed. When I was a young nurse I went to the Rusk Institute in New York City to learn about physical rehabilitation; I spent the day in a wheelchair.
That was a transformative experience, gaining some lived experience, I think that would be one thing. I would encourage networking as a young clinician. Finding people who care about the patients in this manner. Finding out who they are and then meeting with them regularly to share what works and what doesn't. Having that support system outside of the work environment I think is really important".