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.

 

 

 

 

Not Going to DC After All, But . . .

I will still join the National Psoriasis Foundation‘s Capitol Hill visits remotely! It will be an early call, but I’m glad I can still participate even though I won’t be there in person. A couple years ago I visited the local office of my congressman. I definitely look forward to chatting with John Garamendi’s staff in Washington D.C. too.

The winter storm #Stella unfortunately canceled my flight from Phoenix to Washington DC’s Reagan airport. I found out when I woke up for my first flight out of Sacramento. Sadly, although I knew cancellation was a possibility, it became a reality as I saw the alert in the wee hours of the morning. I’m still in some kind of denial, as I still haven’t unpacked my bags.

I do welcome the rest, though. Last week’s trip to Orlando for the American Academy of Dermatology annual meeting, and a week full of work at church tired me out. Yesterday I spoke in two consecutive church services on short sleep after Daylight Savings Time. My wife rejoiced when she found out I would stay home, worried that I might fly into a blizzard, and knowing how busy I’ve been recently.

This afternoon I finally got around to working on a couple chores I’d put off for weeks: washing the cars, and mowing the lawns. Now I’m spending time catching up on emails and blogging. I spent some much needed time with the kids, too, with my son helping me with the work.

Even though I’m not going to DC, I hope to go next time. And I get to enjoy the 80 degree weather here in Sacramento. It’s disappointing, but not all bad.

The Future of Psoriasis Care

If you could look forward to coming medical innovations in psoriasis treatment and care, what would you want to see?

In my Everyday Health column The Itch to Beat Psoriasis,  I address questions medical innovation, cure and prevention, and what a life free of psoriasis might look like. As always, I’m grateful to Janssen for the invitation, supporting my travel expenses, and putting together a great team for the patient panel.

In the column I did not share how going to San Diego that weekend became quite a journey. The storms in California raged during my travel both ways. Matt Iseman showed up a bit late to our prep meeting, which amped up my anxiety as I hoped we’d have more time to talk about how the panel would be conducted.

The overwhelming consensus from the panel is the need for immediate relief so those living with autoimmune conditions. The impact of chronic conditions cannot be overstated. It’s written on the lives of those who battle everyday.

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I joined Matt Iseman, Brooke Abbott, and Mariah Leach for an immunology patient panel in January

Turns out everything went better than I could have expected. The researches gave us a warm round of applause at the end. Afterwards, I met a couple people who wanted to follow up with what we talked about. The huge storm that hit home even passed just before I landed at Sacramento airport!

All in all a great trip to share the patient story to those who everyday work hard to improve our lives.

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You can read the column The Future of Psoriasis Care here.

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.

American Academy of Dermatology Annual Meeting Day 1

The first day for me at the American Academy of Dermatology Annual Meeting started with ample amounts of both excitement and trepidation. I’d never attended a medical meeting for physicians, nor did I represent companies that offered services or products for them.

Yet, I felt strangely like I did belong as a lifelong psoriasis and atopic dermatitis patient. In a way, the meeting existing for me, the dermatology patient. But I didn’t know where exactly I fit in to this meeting.

The morning agenda included a discussion between the National Psoriasis Foundation (NPF) and representatives from the pharmaceutical company Janssen (see note below). I shared my experience working with blogger groups, and listened as important topics related to outreach and treatment for those living with psoriasis and their caregivers.

In the afternoon I had a chance to go to the Orlando Convention Center to see the Exhibit Hall. I recognized many brands and medications I’ve used over the years. By the end of the day, however, many samples ran out at the booths. I plan to go back tomorrow during breaks between attending scientific sessions related to psoriasis.

The evening I enjoyed attending the NPF reception where they handed out medical professional awards. I met staff from the NPF, even having a short, but in-depth conversation about my volunteer work in Northern California/Sacramento.

By the end of the day, my concern if I belonged or not at the AAD meeting did not feel so pressing. Curiosity and desire to learn more about my condition, and pass that knowledge to the psoriasis community took its place. Besides, I have a cool yellow access pass and map to guide the way!

[Note: Janssen paid for my time and travel expenses to attend the National Psoriasis Meeting meeting at AAD. All thoughts and opinions expressed here are my own and have not been influenced by Janssen.]

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