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 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, my Twitter is @HChnag316 at and I also have The Itch To Beat Psoriasis page on Facebook.

Brigette McKern | Patient Advocate | Double Lung Transplant Recipient

"I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life" Brigette Mckern.

Introducing Brigette Mckern and her Journey Living With Cystic Fibrosis

My name's Bridget McKern, I'm 36, I'm right now. I'm mostly a professional patient and I do work part time as well in a library. Right now I am just maintaining my health and I hope to travel more. That's my plan. When we look with cystic fibrosis CF, that a genetic disease that affects the lungs and the digestive system. It's a genetic disease and basically the lungs filled up too much mucus. They produce too much mucus so a bacteria and illnesses can live in there.
Usually you get lung illnesses progressively, it's hard to get rid of them. So you do things like nebulizers, like asthma patients would do to break up that mucus, but just over time it takes over your lungs and you also built up cysts in your lungs. Transplants is needed at some point. When I was four years old I came down with pneumonia, I ended up in the hospital and that's when they diagnosed me.
I had symptoms that I was showing, they tested me and found that I had it. I was a pretty healthy child, I wasn't in the hospital again until I was an adult and then it kind of started. My disease progressed, my lungs get worse. When I was 30 I was listed to receive a double lung transplant. I waited two years on the waiting list and then received my transplant and that was three and a half years ago. So now I'm just trying to maintain my health.

Growing Up With Chronic Illness

I knew I was different from my friends, but again, I didn't grow up with other people who had CF. For me, I was luckily a to be a normal kid. I went to birthday parties, sleepovers and I went to school. I had friends, I don't think I really thought I was too different. I knew I had to do medications and my friends, I don't know, I think it was in a way kind of cool for them. They were like, oh, what's your nebulizer machine? Or what do you do?
Actually that was nice. Nobody picked on me or anything. So it wasn't bad. I think as my disease progressed, it got harder and I kind of wanted that outreach to reach out to other people who lived with my illness to understand it better. I noticed a lot when I graduated college and when I went out to get a job and to work, I didn't really want people to know about my illness. I was worried it would prevent me from getting a job if they knew that I would have to take days off, I would possibly have to be in the hospital at times and I thought it would be a barrier.So when I was a kid, it wasn't something that was very visible unless they saw me take medications or something like that.

Invisible illness and Adulthood

As an adult and my disease progressed, I had a chronic cough and people especially working in an office, oh, are you sick, do you have a cold? I would just say, Oh yeah, allergies or you know, I didn't have anything contagious, but I knew it was pretty obvious that I had something wrong. I would miss days of work and things like that. But then sometimes I think it's easier when people can see it in a way that then they understood.
People tend to understand sickness, like when somebody has a visible cold or the flu, you know, and you, Oh, I'm so sorry. Um, and maybe if they can't see it, they think, oh, you know, you cancel these plans, you're flaky or you don't want to come to work. You're not a good worker. It's kind of that hard place of you want people to understand, but you don't because you don't know how it's going to jeopardize what they think of you or what that means to your professional life.

Reflecting On Receiving News of Needing Transplant

When I was listed for transplant, actually, it was a surprise to me that I needed transplant. You know, living with CFD you kind of know, oh, that could happen. When it did, it just seemed so foreign and I didn't have anybody to talk to who had been through it. I really used Facebook and social media to find other CF patients. Other patients who went through transplant and really seeing other people share their stories.
That's what made me want to share mine because I thought, okay, this person's story made a very big difference to me. If I could do that from one person who maybe was in my position and felt really lost and not sure what they were going to go through coming up and it would be worth it. I was much more open to sharing those experiences because I didn't feel I would have that stigma of thinking.
 I don't want people too close for you to know too much. But now I just share it because just the reason that it meant so much to me that other people shared their stories and it makes it so much less scary. Just to have one person say to you, I know how you feel and know what you're going through, that makes a world of difference.
I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life. I remember crying because it's just very overwhelming.  When you think, oh this means you know, I could possibly die very soon. Growing up, pretty healthy. 
I didn't think my life would be to shorten. Then after that, there's about four months of testing and evaluation you have to go through just to see if you qualify. Because, even though you're at end stage, they want you to be as healthy as you can, to go through. Lung transplants are considered the hardest surgery that you can go through physically.
Each transplant center have an average waiting time. For my center  it was four months, but because of my size and the fact that there aren't as many organ donors as we need. I ended up waiting 28 months and my disease progressed through that time as I spent more time in the hospital. 

Managing Fear While Waitlisted

It's scary because you don't, you don't know what the outcome's going to be. I didn't know if I would get a transplant before I passed away. I didn't know how long. You know when you have a scheduled surgery you can think, okay, I just have to make it to this point and with that unknown, like I didn't know. Everything came down just day by day.
I just wanted to make it through and get to that point, so it's overwhelming. I actually was diagnosed with, major depressive disorder and anxiety during that time. I went through talk therapy and took antidepressants because it was like you said; it was just mentally tolling to take it day by day, not being able to make long term plans. To not to see an end to it coming.

Mental Health Post Transplants

I also went through it again after transplant and I felt, I'm not sure how common it is coming out of transplant. I felt really guilty. I felt guilty that I have this transplant and there's so many other people that need transplants. I didn't, you know, you can't guarantee anybody else is going to get a transplant or they're going to be successful.
Through social media I knew people who passed away either waiting for transplants or after they received them they didn't recover well. That's a hard thing to take too. Also looking at, you know, I have a donor, a person who had to pass away so I could have this chance. It's a lot of pressure on you, I want to be the best person that I can. I want to do everything I can now for my donor, for their family, for my family, because my family, my poor parents had to go through that with me as well.

The Role of Support System in the patient journey

I have friends and they actually live in Orlando, their about an hour and a half away and every time I was in the hospital they would come and visit me. My fiancee John, he was there as well.  Every trip to the emergency room, he had to either drive you there, or call the ambulance. My parents actually live in Minnesota and they came down and especially during my recovery, I had to have full time care for about three months after my transplant.
My parents came down and did that. A lot of people sacrificed time from work, time from their social lives. I know mentally it was hard for them as well. But yeah, I wouldn't have gotten through without them helping me. Just not only physically because I couldn't breathe, I couldn't cook. When it came down to it, I needed help washing my hair, things like that. Then just mentally having them keep me up for every day and getting through really made a difference.

Processing Donor's Decision making process

It's overwhelming to know that somebody I've never met and will never meet, literally saved my life. They made a selfless decision and their family did, before they passed away. I can't imagine during the time of losing a loved one making such a big decision. It's been almost four years, that's more holidays, I've had with my family, days I've had with my friends. I've volunteered and I'm just happy to wake up every day. It's a very overwhelming thing. 
I think, I think people need more education, more facts about organ donation. I think there's a lot of false information or stigmas that are around it. People think if you went into a hospital, they want to save your life, if they knew you were at organ donor, which is completely false. They always do everything they possibly can and also that it's something that will come down to your family or your next of kin.
It's important to talk to people around you that want to be an organ donor because in that hard time it could be hard for them to make that decision. If they know your wishes it might be a little easier. It was great during translated really awesome nurses and they worked specifically with transplant patients so they knew the process and they knew how hard it was everyday, you know, just to eat, to get up and walk and all of that.

Clinicians, self advocacy & Patient Experience

I actually had a really great nurses and especially because you don't spend a lot of time with your doctor, you spend more time with your nurses. They're there 24/7. I got to know them and their family stories and they got to know my family that would come to visit. I think that reaching out to the staff, to the health care provider, they were there when your family's not there and I just had really great nurses. I was very lucky. But again, their kind of that bridge between you and your doctor as well. So it's important for them to know everything you're going through and to voice when you have pain.
When you have problems with medications and things like that. Be your own advocate and be outspoken and don't be afraid that anybody's going to judge you or you know. I think I went through that, especially as the kid, I wanted to be the perfect patient, I wanted to come in and you know, I didn't want to complain and that. But, it gets you in more trouble when you don't because then you have problems that you're not taking care of. Don't be afraid to voice anything.

A Day in the Life of Brigette

Very busy, very scheduled. A lot of the treatments that we do. The nebulizers, there's also a thing called a vest machine and it's literally you put on the vest, it hooks up to a machine and it shakes. It does percussions on your chest to also help break up that mucus and those treatments are done two to three times a day and it can take up to an hour each treatment so that along with pills two to three times a day. It's a very laboring process to take care of yourself.  Also, frequent doctor appointments.
There are designated cystic fibrosis centers at certain hospitals and I've been seen at those, I've been seeing just at hospitals and I will say it's very different. The cystic fibrosis centers, they know about treatments, they know how the disease progresses and generally in a hospital it's not something that's seen commonly. It can be hard to be properly treated. The way you would treat infections would be different than with an average person. Sometimes there's a lot of confusion there. It is a very extensive disease, unfortunately. Medications and treatments.

The Cost of Wellness for CF Patients

The machine I was talking about, the vest machine, most families can't afford it. It's thousands of dollars and so things like the Cystic Fibrosis Foundation or you can find other areas that can help you.  Sometimes people donate the machines when they don't need them anymore because they are such a high cost. Medications are expensive, my parents both had to work full time when I was growing up so I could have health insurance. 
When I aged out of their insurance, I had to focus on getting a good job, getting something that I could support myself and get the insurance to pay for those medications. That's hard too because a lot of times when you get to adulthood, your disease is so progressive. It's hard to work full time, but you know, you have to choose what you're going to do. So I worked probably longer than I should have, they told me. 
I needed that insurance, I needed that help. So I'm not sure what the answer is, but, somehow bringing down the cost of drugs  would help, also, the amount of time before a drug can become generic. A lot of the drugs we take when they first come out, obviously they're patented and they're expensive. I think maybe shortening that amount of time and allowing other companies to produce, explaining things. It's kind of a monopoly with very few drug companies that produce the drugs needed.

The Future for A Regenerated Double Lung Transplant Recipient

I would like to tell my story more in person, maybe a volunteering. There are a lifelink Florida's organization that procured my donor lungs, so maybe working with them or somebody,  just to share my story to raise more awareness about organ donation and what that can do. I've been keeping myself healthy and building up that stamina so I can do a little more physically. That's why social media's easier for me a lot of times.
I still have a lot of treatments, a lot of doctor's appointments and things. It's easier for me to get messages out that way. I think it's up to every patient because I know there was a time that I wasn't necessarily ready for everyone to know all those details and it can be very hard. I think if you feel you're ready and you can do it in small steps, even just talking to people in your life, your friends or people you work with and then kind of building up from there.

Social Media & Patient empowerment

I wouldn't tell people yes or no.  I think it beats a person's journey.  But just for me it was very therapeutic, it helped me kind of process everything that was going on. Again, I moved down here from Minnesota with family and friends in other states. It was easy for me to update them on what was going on rather than having to call all of these people. I would just say if you want to do it, don't be afraid to take those first steps.
Even if they're little, take it day by day and know that you're strong and you're going to make it through and don't be so hard on yourself. Don't think you have to do everything yourself. Be okay to ask for help and reach out to people, because it can be isolating as well. Also, you don't want to feel like a burden on somebody else, but you're not. There's people around you for a reason and they want to help you out and take care of you.

Brigette Mckern: Instagram | Facebook

Danya Glabau, PhD "The Moral Life of Epinephrine in the United States”.

"Modern medicine has made great strides by trying to standardize diagnosis and treatments but because of the way we manage physician-patient encounters, there's often not a chance to step back and say could I be asking other questions, might there be some other family, social and cultural factors that is potentially affecting how these roles can be applied in these individual cases" Danya Glabau, PhD.

Dr. Danya Glabau is a Medical Anthropologist, Founder of Implosion Labs, LLC, an ethnographic research and consulting group working with clients in health care and technology, and Adjunct Instructor in the Technology, Culture, and Society department at NYU Tandon School of Engineering. She is the Co-Chair of the Science, Technology, and Medicine special interest group of the Society for Medical Anthropology and Co-Organizer of the New York-based QX MeetUp Group

“The Moral Life of Epinephrine in the United States"

This was an article that initiated some other work around patient advocacy, and healthcare for food allergies patients. This piece was looking at epinephrine auto-injectors, specifically which are these devices, a drug device combination that administers a dose of epinephrine for a person who is experiencing an allergic reaction. You might have one of these prescribed if you have a food allergies and potentially if you have an allergy to certain drugs. The way it works is it’s kind of a spring loaded mechanism about the size of a sharpie marker and if are experiencing an allergic reaction you can surge a bit into your leg, it will release medication epinephrine which we also known as adrenaline that very rapidly reduces the symptoms of the allergic reaction.

What I found when I set out to do my research was that I would sit down to talk to people who had food allergies or parents of food allergen children and just ask them to tell me about their experiences with the condition. Very often the conversation would end up being about these epinephrine auto-injectors. People felt very attached to them because they relied on them in such cases to save their lives, so they were really a central part of the patient experience with food allergies. That caught my attention and I wanted to spend a little bit more time thinking about all the different ways that they impact food allergies.

The article follows the device itself, through the different ways that patients use it, encounter it and learn about it. We kind of start off in the clinical encounter; how the physician introduce this device, how do they educate them (patients) on it, what the patients take away from that interaction which isn't always what they physician intends. Then from there how does this device affects their relationships in their communities, relationships with schools if they have allergic children and how it affects family relationships.

I end the piece by looking at how talking about epinephrine auto injectors is actually a key aspect of how the food allergy community builds a community. People with allergies and parents of food allergic children spend a lot of time talking about these devices and how they save their lives, exchanging news, exchanging updates about food research or new devices on the market. So it's really a way for people to connect by talking about their shared experience around this technology, and build a community which then has other effects as well.

As an anthropologist I’m using what are called ethnographic methods. It's a very open ended research method in some ways, where you kind of go in and talk to people, some people call it deep hanging out. You follow people through their daily lives and really understand what they think about their lives and you observe what they do, and sometimes there's a mismatch. This is a method that I use for researching food allergy and for my more recent research as well. A Lot of my research was interviews with people, attending food events, allergy advocacy events and things like that.

I think that it reveals a side of medicine that we often overlook. We talk a lot about the economics of health care, investments, cutting edge technologies, but we don't spend as much time I think as a society really sitting down and listening in detailed ways to how people experience them and patients experiences. I think these kind of ethnographic deep hanging out methods, lets you really get inside of people's lives and understand what it looks like from an everyday perspective, to be dealing with medical industry to be learning about medical treatments, to be a patient.

Theres a lot of ethical and moral questions, you know the title of the article the moral life of epinephrine, in the United States kind of gives that away. I think one of the places where there's maybe more of a dilemma is when patients are faced with emergency situations when they are starting to experience an allergic reactions and making the decision of whether or not to use their auto-injectors.

One of the big dilemmas that people face is cost, so these devices have become more costly over the past ten years or so and using one might eventually cost a person several hundred dollars out of pocket to replace it. There's often a calculation nowadays for people who are deciding, is this a serious enough to actually need the injection, serious enough situation that I can afford to pull out and replace this device for the next time.

Another dilemma and one that us faced by adults with food allergies, is that of trying to decide whether to use the auto-injector and to get the appropriate follow-up treatment which means they are not going be able to follow up on responsibilities for the rest of the day, probably will have to go to the ER, they might have a follow-up doctor’s visit, they might feel very tired after using the medications etc. There's always this decision making process about “can I let down all of those people in my life, can I sort of skip all those other issues to take care of myself”. From the outside it's easy to say yes, of course you should, you should always put your health first but when you are a person balancing a lot of responsibilities it can be very difficult decision.

Part of the reason why I draw on Sharyl Mattingly’s work is that she does a really good job thinking about the clinical encounters between patients or parents of patients and physicians. One of the things that are at stake are socioeconomic factors. It might be in obvious ways in that a doctors is recommending that a patient get a treatment that the patient sure know that they can't afford or their not sure that they can afford. That might make them a little bit suspicious, a little bit hesitant in the interaction and the doctor is not necessarily going to know why, so there's that level that I think it's really important for physicians to keep in mind.

There’s this other layer of different understandings of what is right and good. This kind of moral question, for a patient theres a lot of things that they might be thinking about, what is a good treatment. It might be a treatment that doesn't have too many side effects so that they can keep living their lives, it might be a treatment that does treat long term potential outcomes of a condition, a treatment that is accessible to them financially, or is offered in a location that convenient where they can take a reasonable time off from work where they wont lose their job to access the treatment. There are all of these factors some of them are tied to society, economics or community expectations about involvement in community or family events. I think these often get lost in the patient-physician encounter, especially nowadays when we’re really crunched for time, as physicians might be trying to fit in six or eight patients in an hour.

The hospital or clinical facility is a context for a lot of these interactions and it structures what can happen in a doctor-patient interaction. That means that it also structures how a patient encounters information about their condition, treatment, and therefore can really shape how they feel about it and what they feel is accessible to them. In a way we might think of the doctor patient interaction not as starting when the doctor-patient sit down together, but its starting as soon as a patient walks into a facility. There's the question of how do we structure healthcare delivery in terms of diagnosis, treatments and prescriptions, but also do we structure the entire experience of being in a healthcare setting for a patient.

One way that people are starting to think about this especially in Europe, is to the lens of something called services-time. Therefore thinking about what does a service look like from the person using it, so in this case from the patient perspective and how do we drill down into all of the different steps, all of the different encounters that the individual has from their encounter with the space, their experience in the parking lot, their experience with the receptionist, biller, as well their experience in the clinic room and with their physician. How do you kind of drill down and make all these areas work in the best way possible?

Some of these solutions might be technological, technological infrastructure, it might mean having the right digital or EMR tools to make interactions seeming-less. Some of those might be on the side of personnel and training and making sure people are really knowledgeable about their particular role but also a little bit knowledgeable about the other roles of the people in the office so that they can facilitate the person getting what they need within the context .

Some of that depends on the medical knowledge of the providers; the physicians, nurses, nurse practitioners, physician assistants, laboratory technicians and so on. Ensuring that you have the right cast of characters and the right kind of expertise to provide the service that someone needs when they walk in. I think that's a really important way to be thinking about healthcare delivery, we should be thinking about health care facilities right now.

The other piece is, what is the patient prepared for, what are they educated about? In the case of epinephrine auto-injectors, there's a lot of support for patient education and patient preparedness from the pharmaceutical companies that produce these devices, as well as from a host of patient advocacy organizations. On the pharmaceutical side there's educational videos demonstrating how to use the device. On the patient advocacy side there are some advocacy groups that directly provide educational materials like Forbes For Schools or colleagues to learn how to use the device, videos demonstrating the device, webinar series talking about updates and developments and new improvements as well as support for local support groups. There are a couple of organizations like Kids with Food Allergies or the Food Allergies Research and Education Organization Fair that both support local support groups where individuals who are facing a new diagnoses themselves or in the family can go find local experts, learn about these techniques etc.

One of the things about food allergies is patients being prepared with an epinephrine auto-injectors, being ready to use it is one piece of a much larger puzzle. There's a lot of steps that come before that where you could be preventing an allergic reaction in the first place. Things like;

  1. Asking the right questions of your waiter when you eat out.

  2. Learning how to read a food label to know all the different names that your allergy might go by to avoid it.

  3. Knowing which brands might be manufactured in a facility that might be safe for you, which brands might not be.

  4. Changing your cooking techniques, kitchen organization techniques to make sure that foods that are safe for you are isolated from materials that might not be.

Medicine isn't just about treating our bodies, by treating our bodies it actually lets us be full social, moral actors. Appreciating how complex and difficult that is I think could really heighten the respective importance of medicine and medical care in some ways. In the case of food allergies a really big part of treatment or prevention strategies is actually community based. Its making sure that chefs and cooks in your community know enough about food allergies to respond when someone in a restaurant says they have a food allergy.

It's about teachers and schools employees knowing enough about food allergies to know how to adequately clean tables or desks and classrooms to make sure that there’s no peanut butter smeared on a desk or something like that. There are a lot of community steps that can be taken around food allergies in particular but again I think that that's not how we typically think of medicine and illness in the United States.

We typically think of it as an individual problem that is in an individual's body but there's all of these social and community issues not only about how we get treatment but also about how to prevent illness. Each of us can be more appreciative of that and more interested in saying, “okay is there one or two small things that I can do in my behavior that will make it safe for someone else” that will make someone else live a more healthful productive life.

I think patient advocacy is becoming a bigger and bigger part of healthcare environment especially in the United States. It’s also becoming more increasingly consolidated and more professionalize so theres a lot of back and forth between patient advocacy groups and healthcare groups like insurers and pharmaceutical companies. In some cases becoming more closely aligned with pharmaceutical companies.

I think that's good because it gives some of these groups a larger reach and a voice in healthcare. However, I also think it's very important to consider how can we maintain the independence of patient advocacy and how can we make sure that it's really representing interest and needs of patients. Rather than interests and needs of these actors who are well represented in the healthcare system. I think that's a challenge for patients activists, how to grow but maintain that fidelity to the needs of people who don't necessarily have a voice.

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Danny van Leeuwen | E-patient | Caregiver | Nurse | Informaticist | Leader

"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. 


How does an individual figure out what works for them?

"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".

Suggestions for improving empathy in health service delivery?

"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".

Appeal to policy makers?

"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".

Advice to clinicians that are new to healthcare environment?

"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".

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