Joining NPF on Capitol Hill

Lori and I in Sacramento for California Advocacy Day with the National Psoriasis Foundation in 2017. The NPF produced this graphic for a tweet promoting the upcoming Capitol Hill day on March 20, 2018. 

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Last year I very much looked forward to attending the National Psoriasis Foundation’s Capitol Hill Day in the nation’s capital. Alas, due to inclement weather and subsequent flight cancellations, I didn’t make it. I wrote Not Going to DC After All, But . . . to share my sadness. While I did conference call into a couple of congressional meetings, I missed meeting psoriasis patient and research advocates, as well as congressional staffers, in person.

This year I’m hoping the storms hold off long enough for my flight to land at Ronald Reagan National Airport on Sunday evening. If they do I’ll not only check off another item off of my psoriasis bucket list, but also join in a cause I’ve become increasingly passionate about.

Growing in Psoriasis Advocacy

For years I envisioned myself as a volunteer coordinator for building psoriasis community locally. I joined the NPFs Los Angeles community division a decade ago and started the San Gabriel Psoriasis Support Group meeting at a local Kaiser facility. Although that group did not continue after I moved back to Northern California, I felt the monthly gathering made an impact.

In Northern California the NPF Community Division Manager gave me the vision of establishing a group in the Sacramento area. We hosted More Than Skin Deep and Team NPF Walk events over the past few years. However, during this time I felt the tug to focus more time on writing blogs and on local advocacy.

I attended the first advocacy day in Sacramento a few years ago where the NPF teamed up with the Arthritis Foundation and other groups to support state legislation. Some bills we lobbied for included striking down step therapy, promoting continuation of care, and developing standards for biosimilars.

Before one of the California Advocacy days the NPF called to ask me to represent the organization in support of a bill. I took off a morning from work to sit in on a health committee meeting. I waited for my moment to stand in line and express support for the bill. That day the NPF staffer told me I became a lobbyist.

Recently I joined the NPF’s Western Advocacy Action Network representing California. Next week I’m taking my very amateur lobbyist skills to Washington D.C. for the first time. I didn’t expect to become involved to this level in legislative advocacy, but I see the power of influencing government for the greater good of the patient community.

Travel and Psocial Ambassador Training

Getting to D.C. is a daunting proposition, however. Living on the West Coast has a few disadvantages. One of them is traveling to the East Coast for meetings. Since my first meetings with the NPF Psocial Ambassador group starts at noon on Monday morning, I need to travel on Sunday afternoon.

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With speaking at 9 a.m. and teaching a class at 10:30 a.m. at church, the best flight out of Sacramento for me is in the early afternoon. I already know I will be exhausted with the packing, preparation for the lessons, speaking/teaching, and travel through Chicago’s O’Hare airport. I don’t arrive in D.C. until around 11:45 p.m.

Sunday is my big work day that takes everything out of me. Traveling and two days of meetings will be challenging, especially with the time change.

But it’s worth it. I can’t think of a better way to spend those couple days giving myself to a cause I deeply believe in. I’m also looking forward to meeting the other two dozen plus patient advocates who will attend.

I plan to update how things are going during and after the trip. Definitely looking forward to all those couple days have in store for the Foundation and me.

 

 

 

 

My Two Worlds

The National Psoriasis Foundation’s Volunteer Conference is held in Chicago this year. The first time I visited Chicago I went to Millenium Park where I took pictures of the Cloud Gate sculpture, or popularly known as ‘The Bean.’

This weekend I’m in Chicago for the National Psoriasis Foundation’s Volunteer Conference. On my last day before heading out to the conference, my colleague at church told me to have a nice vacation. I began to tell him that it would not be much of a vacation, but I stopped myself not wanting to explain my conference schedule to him.

I largely live in two worlds: one as a pastor/minister at a local church in a college town, and the other as a patient advocate/blogger primarily with psoriasis advocacy. The two worlds do not overlap much, but they do inform each other.

My Church World

As a minister for almost twenty years I primarily oversee a congregation of over one hundred in an ethnically Chinese church. My group consists mostly of second generation Asian Americans, though they run the spectrum from more culturally Chinese to more culturally westernized. Some, like my wife, are not Chinese but adapt well to the Asian setting.

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On Good Friday I spoke to 250 gathered in our Davis, California church. The Mandarin Chinese translator, Shirley, works with me often when I speak in a bilingual setting.

The three pastors of the church, together with four non-pastor leaders (called elders) oversee the direction and care of the church. My training includes a Master of Divinity and a Doctor of Ministry, which I earned last year. I am also an ordained pastor and elder of the church. So people could call me “Rev. Dr. Pastor Elder,” although most call me “Pastor Howard.”

In this church world, I advise and work with volunteers in all church functions. I do quite a bit of counseling, mentoring, speaking, hosting/visiting, teaching, and team building. I officiate weddings, funerals, baptisms, child dedications, and communion services.  It’s a full-time position and then some.

The church sits a block north of the University of California, Davis campus. My wife and I met at UC Davis as undergraduates, so it’s a homecoming of sorts for us when we moved back from Los Angeles in 2014. I enjoy the relative quiet of the small suburban, agriculturally based area of California’s Central Valley. With the university nearby we spend a lot of time with students and faculty/staff.

My Patient Advocacy World

My world as a psoriasis patient advocate started early and developed late. I learned to advocate for myself as a child, teen, and student with psoriasis. My parents, immigrants who worked day and night to provide for the family, left much for me to manage myself. As early as first grade I rode my bike to school and back.

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Novartis sponsored Natalie Fletcher to body paint three patient advocates to raise psoriasis awareness. She painted three doves on my back to represent peace that comes from faith.

Around that time, I received a psoriasis diagnosis. I couldn’t ride my bike to phototherapy or doctor appointments, but I did call the pharmacy for medication refills and applied medications myself. If I needed anything I learned to speak up, make a call, or get it myself.

Self-advocacy led me to speak up about my psoriasis, despite the seemingly constant bullying, teasing, and misunderstanding associated with a skin disease. It helped me to tell my story. I found more supporters than detractors, which continued to encourage me on the path of sharing openly and often about psoriasis.

The next step to begin blogging about psoriasis made sense in my mid-thirties. I answered the call to blog for an online health website called HealthTalk. Their psoriasis content included a couple patient blogs, webcasts, and other articles. I appreciated the site enough to ask if I could write for them.

The editor wrote back to tell me she did not want me to proselytize or write content too religiously focused or sourced. She liked my writing samples enough to take a chance on me. I learned quickly, though, that my two worlds would need to stay separate for a while yet. That blog on HealthTalk turned into The Itch to Beat Psoriasis on Everyday Health. I began to coordinate some of my work with the National Psoriasis Foundation at that time too.

HealtheVoices, the first of its kind conference for online health advocates, led me into a new phase of advocacy. I met other health advocates for the first time, including several psoriasis patient advocates. With psoriasis research and new medications coming online, the advocacy space opened to join blogger groups, and partner with health and pharmaceutical companies. [See Links to Blogs/Articles for more of my advocacy work and writing.]

Two Worlds Collide

For years, I didn’t mention my work as a minister, or use my Reverend title, in my psoriasis bios or writing. I wanted to be known as a patient advocate who lives with a severe chronic autoimmune disease first. But more recently I found other advocates sharing about their faith from time to time. When I asked Everyday Health about updating my bio, they welcomed the changes.

When I do head out for conferences I invariably end up talking about my faith or work. Almost every trip someone says, “You are a pastor, right? Can I ask you a question?” I’m ready to serve as a pastoral counselor at any time, even on a psoriasis related trip. Sometimes people ask me about my work as a minister.

At church, I often share about my health journey as an illustration of living authentically by faith in a broken world. I personally pray for strength to persevere, and even seek healing and relief from my conditions. Those at church know when I change medications, take trips for conferences, or organize local psoriasis events for the National Psoriasis Foundation.

They welcome my advocacy work as an extension of my work at the church. I appreciate their support and concern for my health. I’m also careful to use my vacation leave for psoriasis related trips so the church does not bear any undue burden for my advocacy.

In both these worlds I feel empowered to help and serve others, albeit in different arenas. That’s why I chose Inspire, Empower, and Advocate as my three themes for PsoHoward.com. I learned that my two worlds actual are both a significant part of me as an expression of who I am and what I sense my calling to be in this world.

2017 NPF National Volunteer Conference

As I write this I’m on the plane heading to Chicago O’Hare’s airport. Lines of thunderstorms hinder our descent from the west, so the pilot explained our path with take us farther north fist. I’m eager to land, get my ride to the downtown hotel, and settle into my room.

The next two days I’ll sit on a corporate roundtable panel, attend a Psocial Ambassador training session, lead a session for teens with psoriasis, table as a PsoSTRONG Ambassador (for LEO Pharma), and attend a reception and volunteer celebration.

This weekend is about psoriasis, but I’m looking forward to how my other world as a minister might come out in conversations and interactions too.

Finishing Up at the American Academy of Dermatology 2017 Meeting

After taking a day to familiarize myself with the AAD meeting, I went full force for the next day and a half. I’m not sure how often patient advocates join meetings like AAD, but it definitely was a first for me. Without my guides and support from Janssen I don’t think I would have had such a positive experience.

Here are some of the elements of the meeting I experienced:

Exhibit Hall

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AAD 2017 Exhibit Hall in Orlando with over 400 booths

I took the picture above at the Aveeno booth, which shows me lost in an oat field. I don’t endorse products, but don’t mind sharing that I’ve personally used Aveeno since I was a teenager. I couldn’t pass up the photo opportunity!

The exhibit hall had over 400 booths with companies and organizations showing off their latest products, medications, and services. I naturally gravitated toward the consumer products and medications I use. But I also marveled at all the new medications available for psoriasis and atopic dermatitis. So much is coming down the pipeline, stay tuned.

Scientific Posters and Presentations

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Scientific Posters read on computers and presented in five minute sessionsfullsizerender-jpg-9

In another section of the exhibit hall doctors/researchers presented their scientific posters. I suppose these once were literal posters on a board, but now they are on slides available on computer monitors. I attended about six or seven of these sessions and found out some critical information for my future treatment options.

I liked how these sessions focused on a particular question, had clear conclusions, and did not go on for too long. The psoriasis sessions this morning garnered quite a bit of interest, as did all the psoriasis sessions I attended. Much of it flew over my head, but as a patient I still wanted to know the latest and greatest. It’s patients who can translate the information to other patients–even if we need them translated for us first.

Plenary Session

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The plenary session with Dr. Joel M. Gelfand presenting research on psoriasis and cardiovascular disease

I earmarked the the plenary session as one talk focused on the comorbidities associated with psoriasis. But first I heard the incoming AAD President’s address and another talk on melanoma. The anticipation grew as the psoriasis talk came.

Dr. Gelfand’s work includes research on the role of psoriasis in conditions found in patients. As many patients know, a myriad of conditions, such as diabetes and cardiovascular disease, are associated with psoriasis. We’ve known that those with moderate to severe psoriasis’s life spans shorten some five years. But does psoriasis cause those conditions?

The takeaway for the dermatologist is to check for psoriatic arthritis, educate and screen patients for cardiovascular risks, check for cancer, and give vaccinations like the flu shot. As patients we too should be asking for the same even if the doctor doesn’t order them for us.

Scientific Sessions

Finally, I sat in over four hours of lectures from top dermatologists on various topics related to psoriasis. The symposia had a number of doctors presenting for about 15-20 minutes each. The forum had two speakers who each took half the time.

I don’t have a picture of the scientific sessions as the AAD did not permit photography. Once I saw others take pictures, though, I felt tempted to take some. Even if I did, I wouldn’t show them publicly here. That’s if I did . . .

 

I have many more thoughts about the AAD meeting to sort out and blog about. Look for those in entries to come. In the meant time I’m looking forward to getting home tonight to celebrate my daughter’s 16th birthday.

Finally, I’m extremely grateful that Janssen gave me the opportunity to attend the meeting, and for their awesome support. They started a new psoriasis blogger group called “I Know PsO,” and invited me as a member of that group.

Heading Out to AAD 2017 in Orlando

Today is a travel day to the American Academy of Dermatology Annual Meeting in Orlando. I originally planned to go with a press credential (which the #AAD17 amazingly approved), but alas that didn’t work out. I’m participating as a psoriasis patient advocate–an opportunity I’m grateful to have.

I plan to blog and share on social media throughout the weekend, so feel free to follow along!

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At the Sacramento Airport ready for a fully day of travel to Orlando and #AAD17