Rob F. | HIV Saved My Life; Living With Chronic Illnesses & Navigating The Public Health System

"The weirdest thing that you'll ever hear anybody say I'm going to say right now, HIV saved my life. Without that diagnosis I would have been unable and ineligible to get the help that I need to survive right now. Why does somebody with that list of diseases have to go to the very bottom of their lives to get any help at all" Rob F. 


Rob is a patient advocate living with type 2 diabetes, epilepsy, chronic asthma,  chronic environmental allergies, high blood pressure, a skin condition called ichthyosis and is also HIV positive.

I manage all these diseases with the help of medical assistance and I’m on SNAP. I have not had health insurance throughout life until I was diagnosed with HIV. Trying to get through those years prior to having insurance was a grind. I needed health care to hold the job, I needed to hold the job to get the insurance to get the health care. I was cycling through jobs every twenty days to eighty. I couldn't really keep anything. I tried my best to grind it out but I failed no matter what I did.
The weirdest thing that you'll ever hear anybody say I'm going to say right now, HIV saved my life. Without that diagnosis I would have been unable and ineligible to get the help that I need to survive right now. Why does somebody with that list of diseases have to go to the very bottom of their lives to get any help at all? Any one of these diseases can kill me. Diabetes is the most diabolical things I ever have to deal with because it involves changing your entire life. Without a disease that had a lobby, without a disease that had a high profile, I would be dead. It shouldn't be that.

Coping with Chronic Diseases on the Public Healthcare System

Coping with those diseases on the public health care system is really difficult because a lot of those disease have specialists. Those specialists even within the same hospital system like I have, rarely talk to each other. Giving information back and forth to them is difficult and also they don't understand exactly what's going on in each other’s care. It’s like learning how to juggle six halls but it's from six different people. They all teach you how to juggle one ball back and forth. They don't understand the interplay between all six.
In my case asthma which is treated with steroids; steroids will up your blood sugar. The higher blood sugar goes lower your immune system goes. That works with HIV and makes my skin dry, also the lithiasis makes my skin dry and plate off. I'm constantly itchy. I constantly have an open wound somewhere. My skin integrity is almost never 100% and I’m possibly fighting an infection.Recently I just spent a week in hospital on IV antibiotics and was discharged to two more weeks of more antibiotics. This happens to me sometimes 2-3 times a year. It's not like optimist infection.

Unemployment, Social Security & Disability

I'm not eligible for social security disability. I’ve tried 3 times. Makes it really hard to work and keep a job because I can’t keep a job long enough to get the insurance. To get the health care I need to keep a job. If I try to work I lose my health benefits. If I work the health benefits I get may not cover everything I need to have covered. Currently I spend retail, insurance covers about $100,000 worth of prescription drugs in a year for me. My HIV meds alone are almost $2,000-$3,000 a month.
If I were to afford that myself I would have to go straight from the unemployment to Google which is not going to happen. Fixing that really is almost fixing the entire system. Employment is difficult right now for me because of the doctors' appointments I have to keep. I was actually told in a job interview that they thought their job was not a priority for me, that I would be too busy in doctor's appointments to give them 100% of my time. Which is true I do enjoy breathing and walking on dirt and not being buried under it.
So they're right but I don't think it's a really good reason to keep me out of a job.  Trying to go back to school and get educated, is difficult to do monetarily, education is expensive. It rises faster than inflation. I have a hard time with attention. Sometimes balancing all these prescription drugs several of them say may cause drowsiness or dizziness and darned if they're not right. Sometimes I can sleep 10, 12, 13 hours a day.
I don't need to, I barely made it here (#Cinderblocks5) this morning but I do what I have to do. If not for love of a good woman and a good support group like here at CinderBlocks I would not make it. I feel like it's important to let people know that there are people like me out there in the world. They’re falling through the cracks. Between disability and unemployment and being eligible for things like food stamps and medical assistance. I was uninsured until I was 38. When I was 38 I was diagnosed with HIV.
Then I was worth helping, then I could get the medical assistance, then I could treat my diabetes, epilepsy and everything that came after. All of those things were being managed by me in patch-work. I knew they were there and a lot of times I just had to either ignore them or just live with the consequences. It has certainly made things harder now. I would love to have a low blood sugar, but testing supplies cost money insulin oddly is available over the counter but needles aren't; i.e you would have to find a doctor who would give you a prescription for needles and tell them “look I may not be able to come back for six months to a year please load me up”.
If I can find one who would do that, I would do that. But even then, maybe two to three doses a day, no long acting insulin. Trying to figure out how that works, kinda wrecked my life. I spent 20 years that way and if you can't get any traction, can't get anything moving, you find yourself where I’m at. You’re 45, you’re sick, you want to do more with your life but who wants a 45 year old straight white dude with no education? My time I feel like it’s passed. This story is all I have now. I will tell it to anyone that can benefit from it. This system needs to change!

Support System

Its hard to find a good support system. I don't have family that I can rely on. I was an unwanted child. I survived an abortion attempt. I was born 1/20/1973, Rode V. Wade was passed 1/23/1973. My mother told me “3 Damn days” for most of my life. I had to look it up to find out what she meant. She tried to abort me. I have a scar on my forehead, that lit up like a Christmas tree during my first MRI procedure and that's because there were metal fragments in my forehead. She tried to hang me.
I can't trust my family, there's really nobody there. I have drifted in and out of relationships, places to be, and places to go. I finally found one good woman. She from England, her name is Victoria, she just graduated nursing school and she saw the good in me nobody else could. She plucked me out of a gutter 10 years ago, took care of me, made sure I took care of myself, that I was okay, helped me through my diagnosis period. Helped me get back to the doctor. Helped me realize that it was worth it.
Regina Holliday and The Walking Gallery
Four years ago, my friend Regina Holliday reached out to me and let me know that she had an advocacy group going, for patients by patients. She thought my story was worth telling. I came, I took part in a panel and something inside of me just let loose, I spilt my guts in front a room full of people. Most of my family, friends, don’t know anything about what I’m going through but it was received well. Regina kept asking me to come back and tell my story. I’ve try to find different avenues, tacts, ways that it affects me because I feel like I’m presenting in front of all of these talented wonderful people that are changing the world and I can’t even change my own life.
I’m an advocate for this patient. I wish I can be an advocate for more people in my position but I feel like I don't have much credibility of standing to help those people. That's what the world tells me. Without Cinderblocks, without these people behind me, letting me know that I’m important enough to be listened to, be heard, be interacted with I probably wouldn't have made it through the last 4-5 years.

Health Politics & Patient Advocacy

We’re in an age right now where healthcare is a big issue, drug prices are a big issue. Its a political issue now. Half of the politicians just see me as an easy vote. I vote for them or the other half will demonize me, call me a lazy and take away my benefits. Non of them address my issues. Non of them will help me, others like me or people who watching/reading this, with affordable healthcare affordable drug prices, and matching the world in efficacy of treatment.
We spend the most, over 3 trillion dollars a year in healthcare, we’re not even top 10 in results. We’re definitely not one of the happiest places to live. It's almost like justice in this country, you can have as much as you can afford. The only way that can change is for people like me, and the people here at Cinderblocks people like Regina, people like you watching/reading, to stand up and to tell your story and to tell what needs to be done in your own life and how that can be done for you. The more that we know about what's going on the more people may be motivated to try to change it.

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 

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.