One Way to Bypass Insurance Denials

Today I still do not have a home phototherapy unit. Almost five months ago my doctor prescribed one for me. Sadly, explanations and appeals made no inroads with my health insurance provider. I documented the insurance saga with Western Health Advantage (WHA) in a recent post. In sum, they denied coverage, my dermatologist and I appealed, and they denied the appeal of the denial. Simple.

The next step to procure a home phototherapy unit would need to bypass insurance coverage.

On the Lookout for Used Phototherapy Units

The dermatologist who originally prescribed the phototherapy unit suggests I search on Ebay or Craigslist for a used unit. Although I did not like the idea at first, I dutifully began looking online for deals. Nothing popped up that I felt I could trust. Besides, I still felt too frustrated about not getting the new unit I set my heart on that I searched half-heartedly.

Then a kind soul emailed me that they read my blog and wanted to offer me their used unit. I began to research the unit to see if it would be a good fit. After consulting my dermatologist it looked like it would need new bulbs that might not fit the older unit. I would need to do more investigating. [If you are interested in their unit please notify me.]

I resigned myself to dip into savings or ask my parents for the money needed for new narrowband ultraviolet bulbs (NUVB) for the used unit, or a stripped down new unit with four or six  bulbs. Even so, I still dreamed of the ten bulb unit with a center and side panels that cost around four thousand dollars after tax and shipping.

A “Go Fund Me” Surprise

A couple months back in the midst of processing a FedEx delivered rejection letter I joked with Lori that I would start a Go Fund Me campaign. I’d never started one, and had only heard about it. My upset did lead me to think of ways to purchase the phototherapy unit apart from insurance. But I did not feel comfortable asking others to give toward it. My pride didn’t let me really consider it.

At a dinner recently I shared my frustration regarding the insurance denials with a couple. I knew they cared about my struggles with psoriasis and didn’t mind listening. We enjoyed an evening out talking and catching up about recent life events. In passing, I joked about the Go Fund Me campaign.

That evening I received a surprise email asking me if it would be okay to send a Go Fund Me campaign to people we knew. They took my picture from social media and set it up. I only needed to give them the green light and check the information on the description before launching it.

If someone who cared about my condition wanted to help me raise money for a phototherapy unit I didn’t want to discourage them. They titled the Go Fund Me campaign “Medical Treatment Fundraiser for PH.” (At church they call me “PH” for Pastor Howard.) The gesture really touched my heart:

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So far the campaign has raised over 70% of the cost of the unit my doctor prescribed. I will soon purchase that unit after giving it a little more time.

Encouraging Support

I am still grateful for my health insurance provider. I will not forget the quarter of a million cost to them for my son’s three week hospital stay. Or for covering my biologics and specialist visits. But this situation with the home phototherapy unit taught me that I cannot expect insurance to cover everything I need for my medical care–even though I argue they have an obligation to.

Instead, I’m touched by the love and generosity of those who started the campaign on my behalf and others who reached out to me with words of support. I’m also grateful for the friends, church members, family, and others who gave in the first couple weeks of the campaign. Their gifts small or large encouraged me enormously when I felt down about my state of psoriasis activity and treatment.

I still need phototherapy treatment on top of topical ointments, biologic injections, and small doses of cyclosporine pills. It’s a lot of disease activity to address, and I know I can’t do it alone. The Go Fund Me campaign reminded me that I’m definitely not alone. People are praying for me, willing to support me generously, and care about my well being.

One way to bypass insurance denials for treatment? Have a friend invite a community of friends and family to pray and contribute as they feel led to.

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 →

How to Take Charge of Your Psoriasis Treatment

[This blog was originally published on The Itch to Beat Psoriasis.]

I recently spoke with Dave Taylor, director of research at Inspire, a patient engagement company with about 220 disease condition sites. If a picture is worth a thousand words, then Inspire’s communities paint thousands of pictures of people living with a myriad of health conditions, including psoriasis.

The TalkPsoriasis community, in partnership with the National Psoriasis Foundation (NPF), now has over 100,000 members, and is the largest that Inspire hosts.

“These are people who took that first step and turned to the Internet,” Taylor says. “We have a billion words” from members who engage others about their health conditions on the site.

Patient Insights

Last year, I wrote about Inspire’s first annual survey titled “Insights from Engaged Patients.” I excitedly opened this year’s survey to find out what, if anything, changed.

Originally, I wrote about how to become a more engaged patient: advocate for yourself, break down barriers to care, and use electronic resources.

These three still stand out for me after reading the latest report. As an engaged patient, you need to advocate for yourself and break down barriers more than ever before. For example, engaged patients experienced cost issues 65 percent of the time with treatments, 52 percent with other medications related to treatment, and 40 percent from out-of-pocket costs related to travel and logistics.

Cost barriers continue to hit me in the wallet each time a family member picks up medication at the pharmacy or sees the doctor. The co-pays go up each year, while the benefits stay the same or decrease. It’s challenging to stay on top of your own healthcare — to overcome the countless hurdles like costs, insurance, and access. But that’s what engaged patients who live with serious health conditions need to do more than ever.

As for using electronic resources, this year’s survey showed that patients increasingly engage with their healthcare on mobile devices. As Taylor notes, “the number of people who used their smartphone to look for information about their health conditions went from 28 percent to 50 percent this year.”

While I am never far from my smartphone, I don’t use it as much for healthcare as I do for email and messages, checking the weather, or sports scores. In my experience, mobile delivery of health information has come a long way, but still needs improvement.

Taking Medications as Directed

As an autoimmune patient, I scanned the report to see if any data stood out for my group. I learned that “autoimmune and neurologic patients are more likely to have gone without medications (60 percent of patients of each type).” As Taylor says, “You are dealing with chronic, ongoing treatment. The fact that you have to take a medication indefinitely opens the door to adherence and compliance issues.”

Taylor also notes that people with more acute conditions might prioritize those over chronic conditions. I couldn’t agree more. Keeping up with medications is a concern that I’m focused on this year. The report cites side effects (53 percent), cost (53 percent), insurance coverage issues (40 percent), lack of effectiveness (33 percent), and dosing issues (8 percent) as reasons that patients stop taking prescription medications.

These issues are difficult to overcome and need to be addressed in proactive ways. Of course, talking to your doctor about adjusting medication is key. But I get embarrassed to tell him if I’m not following his directions, and I might not want to try the alternative.

Brand Name or Generic Equivalent?

A final observation from the report speaks to brand name and generic equivalent medications: “Oncology patients and autoimmune patients are more likely to not know if their medication has been switched to generic equivalent.”

Often taking a generic equivalent is not an issue. But studies show that the brand name sometimes does make a difference. That’s the case with one of my medications. My dermatologist often forgets to note “brand name only” on the prescription. I refuse the generic, and have the pharmacy call my doctor to approve the brand name.

Do you know if your medications need to be brand name, or if they are switched to generic when you go to the pharmacy? The engaged patient needs to ask that question, at the doctor’s office  and the pharmacy.

The report contains much more information about the engaged patient than I could highlight here. You can view all the survey results here.