Author Archives: Howard H Chang

Advocacy, psoriasis

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.

 

 

 

 

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psoriasis, Psoriasis Treatments

28 Weeks with Tremfya: Still Working? (Injection #5)

March 5th finally arrived–injection day. The time came for the fifth dose of Tremfya (guselkumab) twenty-eight weeks after starting this treatment journey with it in August.

To prepare I carefully laid out the syringe, the instruction booklet, information sheet, a cotton ball, and alcohol wipe on my desk. As I waited for the medication to warm up for a few minutes my thoughts began to wander.

Would I take Tremfya if my insurance didn’t pay for the approximately ten thousand dollars per injection?

Is there any chance for even greater improvement as I go into the second half of a year taking it?

Will any long-term side effects eventually pop up if I take Tremfya over a long period?

As I grabbed the syringe I figured the answers are 1) no–it’s way too expensive, 2) probably not–I’ve probably seen what it can do already, and 3) I hope not–and that scares me to these three questions. I submitted to the fact that I can’t know everything I want to know about taking a new medication even after using it for over half a year.

Thankfully, the needle and medication went under my skin with no issues. Not even a tiny drop of blood emerged as the needle pulled out. Now it’s time to wait to see how effective this injection will be for weeks 28 to 36, and would it follow the pattern I’ve observed with the past couple injections.

The Pattern Continues

In 24 Weeks with Tremfya: A Pattern Emerges I discussed a pattern I observed with the eight week between injections. About two weeks before the next injection my psoriasis worsens. Then two weeks after the injection my psoriasis begins to improve again. I most enjoy the four weeks in between.

During the previous eight weeks I did have a nagging respiratory injection that seemed to worsen both my psoriasis and atopic dermatitis. While it’s possible the break out is due to the lingering effects of infection, I also see it as a potential confirmation of the pattern I described.

This picture I took earlier this week shows how my psoriasis broke out some on my lower back and upper arms. Continue reading →

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Living with Psoriasis, psoriasis, Psoriasis Treatments

An Almost Disastrous First Dermatology Visit

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The empty lobby at the dermatology clinic at lunch time left me feeling quite anxious after I missed my 11:30 a.m. appointment, which I thought was at 1:30 p.m.

Wednesday morning started out quietly enough. I took the morning to rest as I had to work on my Monday day off. I looked forward to my first dermatology appointment at 1:30 p.m. I drove into town around 12:30 to give myself plenty of time. Then it dawned on me.

My dermatology appointment was at 11:30 a.m., not 1:30 p.m.

After double checking my calendar I decided to drive straight to the clinic. Even though the door was unlocked, I only found an “out to lunch” sign on the counter. A call to the scheduling center confirmed I missed my appointment. I’d waited over two months for this visit. Now I found myself one hour late to it.

The scheduler on the phone told me I could take the next available appointment with the dermatologist on May 8th, or with her colleague on May 2nd. She also gave me the option to stay in the clinic office until the staff returned from lunch. I opted for the latter.

As I waited all I could think about is what a disaster the first visit is turning out to be. Being late meant possibly not seeing the new dermatologist for weeks. One little mistake could mushroom into huge consequences for all my treatments.

As I waited all I could think about is what a disaster the first visit is turning out to be. Being late meant possibly not seeing the new dermatologist for weeks.

Awkward Beginnings

Finally, someone returned to the office. I sheepishly asked if she had started working yet, and shared how I felt embarrassed about missing my 11:30 appointment. The receptionist said it was okay, and took my information down. She then asked me to wait until the medical staff returned.

Dr. C’s medical assistant returned and started looking into my situation. He said they could work me into her schedule, but I needed to wait there for up to two hours. Ironically, I ended up getting a 1:45 p.m. appointment, only 15 minutes later than what I first thought. Around 2:00 p.m. the medical assistant called me into the exam room.

I felt anxious changing to a new medical group and system. Right off I felt awkward when I tried to sit on the exam table and asked for a gown.

“On the first visit the doctor likes you to keep your clothes on and sit in the chair,” the assistant informed me. I thought it sounded like rules for a first date, but went with it.

I felt anxious changing to a new medical group and system. Right off I felt awkward when I tried to sit on the exam table and asked for a gown.

Next, he told me the doctor is using an exam recording device that transmits to the Dominican Republic. It apparently helps with documentation so the doctor doesn’t need to worry about writing notes later. I didn’t want to make a fuss on my first visit and told him it would be fine.

Dr. C. walked in a few minutes later. She told me right away that she didn’t have that much time for the visit since I was being squeezed into her schedule.

Having no time to waste, I quickly dove into all my dermatology concerns assuming she could keep up. Continue reading →

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Family

How My Wife and I Support Each Other Through Chronic Illness

Howard Chang and his wife Lori found that being open about their chronic conditions brought them closer together.

Lori and I took this picture at the spot we got engaged in 1993 near Ghiradelli Square in San Francisco. It’s one of my favorite recent pictures of us together.

Happy Valentine’s Day to my dear wife, Lori! I can’t believe we met about 25 years ago at U.C. Davis as undergraduates. We bonded very quickly over the experiences of living with lifelong health condtions. Those health conditions persist to this day, with a few added to the picture as we become middle-aged. I would even say that psoriasis helped me find my wife. 

I wrote the following article for The Itch to Beat Psoriasis on Everyday Health a couple years ago on ways to support a loved one with chronic illness. I’m adding it here below as a reminder on Valentine’s Day of how far we have come through each other’s support and care.

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3 Ways to Support a Loved One With Chronic Illness

Finding the perfect gift for my wife, Lori, is always tricky. That’s because it’s not easy to express how much she means to me. She’s stood by as my main support through everything for more than 20 years, including living with a guy who has severe psoriasis.

As a minister, I officiate weddings and work closely with couples preparing for marriage. I always tell them that the center of the ceremony is the vows. The vow to love “in sickness and in health until death do us part” strikes me as especially solemn.

Many young couples sitting across from me do not truly comprehend the impact “in sickness” can have on their future lives. I know that Lori and I didn’t when we married in our early- and mid-twenties.

We hit it off immediately when we met as college students at the University of California, Davis. The two of us could speak for hours about anything and everything. We could especially relate on so many levels when talking about living with serious health conditions.

Lori was born with spina bifida, a neural tube defect that leaves the spinal cord and nerves open to damage. Doctors call hers a one-in-a-million case thanks to successful neurosurgery a few hours after birth. The condition did leave her with incontinence and neuromuscular weakness, but it could’ve left her incapacitated in a wheelchair.

The two of us could speak for hours about anything and everything. We could especially relate on so many levels when talking about living with serious health conditions.

Every year, I accompanied Lori to an all-morning spina bifida clinic. She stayed in an exam room while medical providers from nine different specialities, including neurology, urology, and nursing, checked her. After lunch, they discussed the patient’s condition and gave recommendations for follow-up.

During one visit, her worsening incontinence took center stage. The doctors and nurses couldn’t find a solution, suggesting possible surgery. I felt helpless as I witnessed her daily struggle trying to work and be a mom while emotionally frustrated by her condition. It took years to figure out how to best manage the incontinence, though no surgery was necessary.

My psoriasis also posed its challenges for Lori. She didn’t really understand or have much knowledge about the condition when we met, or during the early years of our marriage.

Lori admits she thought it was just a manageable itchy rash … nothing much to worry about. It would flare up at times, but there was oral medication, topical treatments, and dermatology appointments to get through it. Besides, Lori’s mom was facing terminal cancer, and the ensuing family drama after her death definitely took priority.

On the journey, Lori and I learned how to better support each other while managing our own anxieties, fears, and frustrations. Drawing from our experience, we brainstormed a few tips for people in support roles as they care for the most important people in their lives. Continue reading →

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