About the Speaker
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 with some patients that were blogging. And so I said—-You know I was at a point where I was 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 weren’t that much social media at the time.
It was an unmet need that I saw and I also saw that psoriasis being a skin disease is the kind of condition that 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 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 On the West Coast. We’re a lot greater in the percentage of the population is Asian and we don’t see that represented in the media.
I 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 get that going and hopefully, others will step into the gap as well.
Bridging the Gap with Resources
Online resources are great and some groups 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 are so many more resources now than there were when I started blogging.
It’s 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 at 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 figure.
But it’s inhibiting people from them to be able to get the treatments that they really could use ad need. 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 a 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 where 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 list, writing your legislators, getting 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 do anything. It’s gridlock, but health care is one of those issues that we can’t afford 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 incredible.
You realize that there are people like you, like me, who have relatives or friends who have different conditions. Many of them we talk to and say “Oh yeah I know someone with psoriasis” or “I know someone with arthritis” and this affects them too. When you make 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 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 of 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 me will 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 the 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 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 others 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.
Others 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. Some people 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 negatively 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 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.
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 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.