But a couple of emails related to online health advocacy events have jolted me out of my sluggishness. First, the National Psoriasis Foundation (NPF) invited me to join their social media campaign for Take Action Tuesday on April 21, 2020. Then organizers for HealtheVoices, a conference for online health advocates, asked me to help facilitate a breakout group for their Live! virtual event on April 25. Initially, I wanted to bury those emails. But I needed to do more than spend time passively watching news or catching up on television series. As it turned out, these events gave me a chance to creatively and purposefully engage the world outside my home. RELATED: Facing My Anxieties During the Coronavirus Crisis
Making Connections Through Online Events
I miss the in-person get-togethers and meetings that are part of my role as a church minister and health advocate. Even during my break from work I expected to regularly join social gatherings. While I still prefer seeing others face to face, I noticed that my mood lifted considerably during a virtual hangout just after the lockdown began. The HealtheVoices Live! event gave me another opportunity to make vital connections online. HealtheVoices is an annual conference for online health advocates. I’ve attended it in person previously, and have served on the advisory panel. This year’s virtual summit promised to give advocates a chance “to come together, connect, and recharge.” HealtheVoices Live! consisted of eight hours of programming throughout the day. Near the end of the conference, I cofacilitated a breakout session for parents living with a chronic illness. Although we had fewer attendees than expected, the parent connection felt instantaneous. At the end of our time together I commented on how well we related as parents despite having children at different stages of life. I shared how my youngest is back from the dorms during her freshman year at college, struggling with what comes next. Another person shared about the challenges of supporting a teenager with distance learning. I felt refreshed after the session. As fellow parents we listened to and supported each other in powerful and impactful way, affirming the value of promoting healthy family interactions in the most unusual of circumstances. Joining virtual conferences like HealtheVoices Live!, as well as other workshops, seminars, and hangouts, has provided outlets for me to connect in ways I didn’t anticipate. RELATED: How Does Psoriasis Impact Your Daily Life?
Making a Difference Through Virtual Advocacy
With the lockdown in California I believe I’m doing my part by staying home and not spreading the disease. I also value the times I can reach out to my elderly parents and my college-age children, as caring for family and friends is especially important during a public health crisis. Still, as someone who is accustomed to actively serving the community and engaging in health advocacy, I felt like something was missing. The NPF Take Action Tuesday event gave me another meaningful outlet to engage the world in a different way. Take Action Tuesday focused advocacy efforts on a few key issues affecting those with psoriatic diseases during the coronavirus pandemic. Advocates partnered with the NPF in asking federal lawmakers to reopen the Healthcare.gov marketplace, reform step therapy, and cap out-of-pocket expenses for Medicare patients. It’s important for me personally to advocate for step therapy reform as I’ve experienced insurance delays and denials in covering medication. Without effective treatment, my psoriasis can break out all over my body. If I had to wait weeks, or even months, while taking treatments that aren’t working, my psoriasis would badly flare. Step therapy is described as a “fail first” policy. For example, my health insurance provider listed a number of treatments I needed to try and fail before agreeing to cover my current biologic medication prescription. Reforms would establish ways to bypass step therapy so a patient like me could take a new medication without delays. The urgency for step therapy exemptions is amplified by the coronavirus epidemic. With an already strained healthcare system, trying to go through a challenging approval process for medication is daunting. I wouldn’t want to urgently go to the hospital or clinic because my skin worsened due to a medication denial. Besides supporting the NPF event through social media, I took action by submitting a letter of support for these reforms to my legislators in the Senate and House. You can still contact your members of Congress about step therapy reform on the NPF website. The coronavirus pandemic has truly upended just about every aspect of life, but what I’m finding is that with some creativity and flexibility, I can still make valuable connections and contributions both in my home and out in the world. RELATED: Finding Inspiration in Lives With Psoriasis How are you making the best of an otherwise difficult and challenging uncertain time? What motivates you to stay connected with others while finding meaningful avenues for your passions and talents? You can read more about my experiences in my blog for Everyday Health and on my website.
