Month: July 2023

Celebrating 7 Years of Lights, Camera, Crohn’s: Content Tips from a Journalist Turned Advocate

2 Comments

Lights, Camera, Crohn’s: An Unobstructed View is officially SEVEN years old! If you told me when I started blogging what a labor of love this website would become for me, I never would have been able to imagine what it would become for my life, for the IBD community, and for patient advocacy efforts. I went into blogging blindly. I had no clue how to format the site, but I knew the types of stories I wanted to share and the messages from patients that I wanted to get across.

As a seasoned journalist who spent nearly a decade as a TV news anchor, reporter, and producer, I’ve used my love for storytelling to try my best to be the voice I so desperately needed to hear upon diagnosis, through my professional life, finding love, family planning, pregnancy, motherhood and beyond. It’s been quite the ride these last seven years. My first article went live July 23, 2016, on the 11th anniversary of my Crohn’s disease diagnosis. I found out I was pregnant with my now six-year-old, two days later. The first six years of Lights, Camera, Crohn’s (and 3 kids later), I shared a new article every single Monday.

Through these seven years, Lights, Camera, Crohn’s has been viewed half a MILLION times, by more than 320,000 people around the world. On this site alone, I’ve shared 368 articles, which does not account for the countless other IBD articles I’ve created for other websites. As I reflect on this milestone, I’m proud of what I’ve accomplished thus far, but know there’s much more work to be done.

This week I want to give you a behind-the-scenes look at how my storytelling process comes to life—I often get asked “how do you become a patient advocate?” and “how do you start blogging?” I hope this advice inspires you to take the plunge, as there are endless seats at the proverbial advocacy table and your voice, your story, your valid experiences, deserve to be heard.

Choosing What’s Newsworthy

It can be overwhelming trying to come up with content that is new and fresh for your blog and social media. I’ve found it extremely beneficial to have an editorial calendar that helps guide the stories that I share. My editorial calendar is in my email in the draft folder. I simply list out the dates (articles have always been shared on Mondays on Lights, Camera, Crohn’s…so I list out all the Mondays for the next 3-4 months). This serves as a reminder of my game plan and when I need to do outreach for the stories.

As a journalist you’re taught and it’s almost innate in some ways to always be on the lookout for a story. I’m always keeping my eye out for tweets and posts on Instagram, conversations in real life, experiences that happen to me when I see my GI or get a scope, that I think will resonate with our community. I think about the pain points I’ve felt along the way and the advice I wish I had when I was struggling in certain moments. I think about the questions I’ve had along the way when Google was scaring the bejesus out of me, and I just wanted real life advice from someone who understood my reality. Think about what uncertainty, questions, concerns you’ve had and what you want to learn more about and then go after the story.

Writing for the Reader

Everyone has a unique writing style, but one of the most common “mistakes” I tend to see with blogging is when writers go on and on and on about their own experience. The articles sound more like a diary entry—and if that’s what you’re going for, great—but usually, you’re wanting to draw readers in. To do this, I use my own experience as a foundation—a sentence or two in the intro and then the rest of the article is written to and for the reader. Try to write your blog articles like a news story. Use sub heads, get reliable sources, attribute studies, share credible information. Give readers in the chronic illness community news they can use. Empower others on their patient journeys so they learn something by checking out your content. Let others see that they are not alone in what they are going through and that you get where they are coming from. By including the expertise of medical professionals, it helps your articles really come to life and allows you to build a rapport and a reputation with the GI community. It’s always incredible to hear when a GI shares Lights, Camera, Crohn’s with their patients.

If you’re unsure how to reach a GI who is not your doctor, I advise going on Twitter and sending doctors a DM asking if they’d be interested in providing input for an article you’re working on. 9 out of 10 times you’ll get a yes. As we all know, doctors are busy, so try and give them a longer lead time to respond to interview questions. I like to include a headshot when I quote a doctor, so I have them send you one.

My Patient Experience articles have become one of my favorite parts of Lights, Camera, Crohn’s—these articles are a major labor of love. I interview 10-20 patients, along with physicians, and spend upwards of 20+ hours out of the goodness of my heart to create a resource that a patient and caregiver can have at their fingertips when they’re trying to make major decisions about how they choose to manage their disease. Topics range from biologics to infertility or life with an ostomy. Rinvoq is coming up next, folks…I just need a breather since I finished writing Skyrizi earlier this month. By crowdsourcing and sharing the good, the bad, and the ugly I’ve been able to provide a complete look at the reality patients face and provide background that shows more than just my experience.

The Art of Interviewing

Whether you’re interviewing a fellow patient or a healthcare professional, the same process goes a long way. Try thinking about the main points of the article and the flow before you write the questions. You almost must think backwards. I do all my interviews over email—for multiple reasons. The number one reason, is that as a mom of a 6-year-old, 4-year-old, and 2-year-old, I don’t get many breaks and trying to conduct an interview over the phone or Zoom and capturing the true essence of what someone is saying is nearly impossible. I also prefer email because it gives people a chance to articulate their responses and enables me to accurately share their quote—word for word, without paraphrasing. I rarely give interviews over the phone, as I like fellow writers/editors/journalists to have what I’m saying verbatim.

When I send the interview email for Lights, Camera, Crohn’s, I provide a deadline in bold and then list the questions. I always ask for a high-level explanation of a person’s patient journey so I have an understanding of what they’ve been through and so I can paint a clear picture for the reader. Try to never ask “yes” or “no” questions—you want people to give good explanations and descriptions.

An example of email outreach to a pediatric gastroenterologist for an article I worked on.

Often the most important question you can ask if “Anything you’d like to add?”—in TV, podcasts, you name it, this is when people let loose a little bit and can provide you with key nuggets of information.

Once I receive the interview responses, I open up Word, and take all the content and start compiling what’s going to be a quote and what’s going to be a part of my wording/storytelling. Then, much like journalists do in TV news, I write the story around the quotes.

Have a Copy Editor (aka family member/friend review your content)

It’s always helpful to have an extra set of eyes on your articles before you share them. Since the day I launched Lights, Camera, Crohn’s, my mom has been my “copy editor.” I email her a draft of the article along with an explanation of what I’m hoping to get across and then she goes through each article with a fine-tooth comb and provides edits and feedback. If I get too fired up about something, she may politely advise I take a certain line of the story out or re-think how I word a sentence. She’s been my voice of reason through this entire process and as my mom, she’s my biggest cheerleader in not just life with Crohn’s, but everything. As a nurse of more than 40+ years, she’s also well versed in medical situations, as well as grammar.

Be Vulnerable and Transparent

Despite how many people advocate for IBD, Crohn’s and ulcerative colitis still have stigmas. It can be daunting to put your words down on paper and share them with the world. I spent the first decade of my disease just telling close family members and friends. What I’ve found since blogging and being a vocal patient advocate, is that by being open, you open yourself up to endless support and camaraderie. There is such strength that comes from saying you’re not ok or need help. Tell it like it is and don’t sugarcoat your story. At the time same, one of the main pillars of my advocacy has to always been to be transparent, while also positive.

Back in the day when I was diagnosed, and those first 10 years when I was living in silence, most of the content I read was pretty doomsday. While I understand and empathize with the pain and horror Crohn’s can cause in one’s life, I’ve tried to never sit in that sadness for long. If anything, IBD has given me perspective and clarity about the fact that IBD doesn’t have to destroy your life or who you are. Yes, it can create major complications, unpredictable setbacks, and hurdles, but those detours don’t have to rob you of what you hope to accomplish or become. While it’s important to be real, I find it just as important to provide hope and inspiration for those who wonder what their futures may hold.

Keep on Swimming

Due to social media algorithms and the lack of engagement many of us see online, it can feel disappointing at times when you put all this effort into an article or a blog and feel like you’re talking or reaching no one. I’ve been there countless times. Don’t let the “likes” or the follows deter you. Know that your words and your stories just need to get into the hands of one person who needs them, and that makes all the effort, time, and energy worth it. Your articles have legs—meaning that once you post them, continue to post, and share for months and years to come because these “evergreen” articles are always timely and necessary. Try to collaborate with others when you can. If news outlets reach out for a quote or if a health website asks for your input, give it—and then ask for your blog to be a part of how you’re attributed in the quote. If you see someone’s Instagram story referring to an article topic you’ve covered, grab the link and send it their way over DM.

If you feel like you’re in a rut or if you’re having a tough time creating content—don’t force it. Ask your followers what topics they’d like you to cover. Use the timing of the year to help come up with stories (for example, navigating diet around the holidays or back to school time and being an IBD teacher). Support the content of fellow advocates—comment and share articles that intrigue you and help others get their words out and the same will be done for you. Rather than seeing advocacy as a competition, view others as your ally—we’re all doing this to help others, spread awareness, drive research, and together we can truly amplify the patient voice—one article at a time.

There’s no telling what Lights, Camera, Crohn’s will look like seven years from now, but I don’t plan to stop storytelling anytime soon. Thanks for all your kind words, for telling me when my stories have touched your life or helped you make a tough decision, and for being there for me when I need support. If you’d ever like to collaborate with me to share your story or if you have a topic you’d like me to write about—please don’t hesitate to reach out.

Here’s to another seven years of breaking stigmas, spreading awareness, and making everyone in the IBD community feel seen.

XO,
Natalie

The Patient Experience: What the IBD Community Has to Say About Skyrizi

Leave a comment

When you hear the word “Skyrizi,” you may think people are referring to an up-and-coming rapper or something fun, but in case you didn’t know, Skyrizi (risankizumab-rzaa) is a biologic drug that was approved to treat Crohn’s disease in June 2022. With the medication only being around for IBD less than 13 months, finding patient experiences wasn’t as “easy” as previous articles I have covered on Lights, Camera, Crohn’s about biologics, but I learned a lot writing this and I think you will gain a better understanding of Skyrizi after reading this, too.

Some background on Skyrizi

Skyrizi was previously approved for moderate to severe plaque psoriasis and active psoriatic arthritis. It’s worth noting that Skyrizi is the first treatment for Crohn’s that targets the interleukin-23 (IL-23) protein, which is responsible for inflammation in our bodies. By going after IL-23, Skyrizi helps reduce inflammation that can contribute to Crohn’s symptoms.

When it comes to dosing, patients receive an intravenous (IV) infusion that lasts about an hour at week 0, week 4, and week 8, followed by a self-administered subcutaneous injection with an on-body injector (OBI) at week 12 and every 8 weeks after that. This whole OBI situation is incredibly intriguing to me. I’ve been doing Humira injections for 15 years (!) this week, so I’m used to self-injecting, but knowing technology like the OBI exists gives hope to people who are fearful of needles and having to give themselves a shot. We’ll get into more about the OBI and what fellow patients have to say later in the article.

As far as safety, prior to starting Skyrizi, it’s advised that your GI order lab work that looks at your liver function. If results come back abnormal, this may not be the right drug for you. If you are in the family planning stages, pregnant, or breastfeeding, speak to your doctor. You can also enroll in the ongoing PIANO study, which looks at the safety and efficacy of IBD medications during pregnancy and beyond. Since Skyrizi is so new to the game, research is needed to help pave the way for IBD moms and their children.

Let’s hear from the patient perspective

Prior to starting Skyrizi in February (2023), Stelara failed Stéphane. I’m always careful with how I word this—and I wish all patients and healthcare providers would be conscious of not saying “the patient failed” anything—at the end of the day, it’s the drug that fails us. Stéphane says he didn’t start feeling a response until this month (July)—just before his second OBI (on-body injection). Although his calprotectin started to respond positively in May.

“The good is that I’ve responded and feel better. The bad is that we don’t know how long my response will last or how much it’ll stop inflammation and the formation of strictures. I’ve responded to Remicade, Entyvio, Stelara, but I’ve also developed strictures and had surgeries on all of them. I can hope that Skyrizi won’t continue this dire and disappointing record.”

Megan says before she started Skyrizi she was on the path to an ostomy. Entyvio had failed her, and she was experiencing perianal Crohn’s symptoms that were keeping her from being the mom, wife, and employee she wanted to be.

“My medical team and I decided to start Skyrizi and plan for a temporary ostomy to help my symptoms while we waited for the medication to take effect. After my second Skyrizi infusion, I noticed significant improvement in my symptoms! My bowel movements were more regular, there was a decrease in drainage from my setons, and I had less pain overall. Given my positive response to the medication, we were able to table ostomy surgery. I was extremely relieved and grateful that I had such a quick response to Skyrizi.”

Maha went on Skyrizi after the biologic she was on failed her after six years. As she was reeling from the reality that the biologic that had put her into clinical remission could suddenly not work anymore, she was hesitant and nervous about how to decide the next treatment options.

“After reviewing all of my options with my doctor, I chose Skyrizi based on data and evidence, and also on a gut feeling that this might be the right next step. I’m happy to report that I was right, and in the time that I’ve been on Skyrizi, I’ve achieved a state of remission I could only dream of, with no side effects!”

Elizabeth was in the clinical trial for Skyrizi. She says the biologic “changed her life.” After fighting a Crohn’s flare for seven years, it’s been the only medication that’s wrangled her disease under control.

Kelly started to flare last Fall, because of a loss of response to Remicade (infliximab). Her gastroenterologist suggested Skyrizi as an option that aligned with her drug priorities: namely safety and efficacy.

“The drug has very good data behind it, and she had heard of excellent response in the clinical trials. But it was very new to GIs across the US. It was a gamble, but one that we both thought was worth trying.”

Unfortunately, Kelly dealt with significant problems and delays with her prior authorization and needed to use the AbbVie Bridge Program to get her first infusion dose covered.

“My insurance company used my participation in the Bridge Program as a reason to deny my coverage for the drug. But AbbVie anticipated this issue and has several support programs that cover longer use of the drug and help with deductibles until insurance companies change their policies about drug coverage. I strongly believe that the months of stress and anxiety and daily hours-long phone calls to try to get this drug covered and delivered seriously exacerbated my flare symptoms,” said Kelly.

This cat and mouse game is something far too many of us can relate to. It’s sickening and ridiculous what chronic illness patients have to go through month after month, just to receive medication on time. Kelly was constantly anxious and worried about whether her Skyrizi would be covered.

Kelly tells me her first two infusions were easy and that she had almost zero side effects aside from very mild fatigue, like her normal Crohn’s baseline.

Kelly’s final Skyrizi induction infusion

“My third infusion was a little heavier hitting, like how Remicade infusions felt: a pronounced bit of fatigue, headache and brain fog that lasted less than a day. It was very tolerable. I didn’t have to premedicate before the infusions either, although my doctor had started me on budesonide to try to control the inflammation and keep the flare from getting worse while we waited for the Skyrizi to kick in.”

Cassandra says this is her third biologic and the whole experience in and of itself has been a bit nerve wracking. She lives in Canada and was the first to receive Skyrizi in her city.

“I didn’t love being the first, having the nurses learn on me, not knowing what to expect was difficult as I typically try finding online forums where others share their experiences. So far, I feel ok with it. Skyrizi hasn’t gotten me into remission, but we will see how it goes!”

The OBI (On-Body Injector)

Like anything new, getting used to a new medication and the mode of delivery can have a bit of an adjustment period. You wear the device on your thigh or abdomen for 5 minutes while the medication gets into your skin.

Kelly – “The neat thing about Skyrizi is the Obi, or on-body injector. It’s a brand-new device that is halfway between an infusion and an injection. It’s a small rectangular device with adhesive on the whole back that sticks to your leg. The needle in the device is tiny and I had zero sensation or pain. The button to trigger the needle is large and doesn’t have the same kind of chunky CLICK that the Humira pens do, which was nice and felt less aggressive and intimidating. Because the device infuses the medication into your body over several minutes, it uses an electronic pump. This means you cannot wear your fitness device or Apple watch or have your phone anywhere near it while you’re doing the injection.”

Kelly says she expected to have difficulty with the adhesive since it covered such a large area of skin and was strong. Other than mild discomfort while peeling it off (like taking off a band-aid), her skin didn’t have any other reaction.

Stéphane-“The written instructions for Skyrizi make the self-administering with the on-body injection unnecessarily complicated. I counted 33 warnings of what not to do, something that just generates anxiety. In fact, it’s simple and easy and the Skyrizi video they provide on the website is far more confidence-inspiring and useful.”

Stéphane says it’s helpful to watch the video after reading the instructions. He says the video is good at stripping the process down to essentials and showing that the injection process is in fact easy.

“The front of the thigh is simpler than the stomach because it naturally offers the flat, smooth, easily accessible space you need to place the injector. You clean the small end of the vial, stick it into the injector so it clicks, close injector door, clean area of skin, take the two strips off the back (top first), place it on your thigh and press down the adhesive, then press forcefully on button of injector,” he said.

Jessica made the switch to Skyrizi after being on Stelara. So far, she hasn’t experienced side effects and the medication has kept her Crohn’s in remission.

“The new on-body injector technology is weird and takes some getting used, but overall, it’s painless. It’s just been a little complicated to learn. If there’s a lump on your skin after you take the injector off. She says it goes away. While the needle doesn’t hurt, Jessica feels as the medicine goes into your system you start to feel more pressure.”

So far, Megan has completed two OBIs at home. She says the OBI is extremely easy to use. She’s done Humira, Stelara, Cimzia, and methotrexate in the past and says the OBI for Skyrizi is the easiest and least painful.

“I like to head to a secluded area, so I don’t chance my son trying to wrestle or play and accidentally knock it out of place. (IBD mom hack!) While I still have hard days and I’m not symptom-free, my hard days are much less frequent than before starting Skyrizi!”

Cassandra-“The OBI is amazing. I have been getting IVs monthly/every other month for 9 years, so to not have to get an IV has been wonderful. I have grown to really hate them and have had some bad experiences getting IVs so to not have to face that has made a world of difference. The OBI is so simple, so quick, and relatively painless (though I have felt some slight pinching/stinging). All in all, it’s very simple and I find the mechanism very innovative and cool! I haven’t had any side effects yet, aside from injection site swelling and redness the day of.”

Maha-“The best part is the ease with which I can do my Skyrizi injections via the on-body injector: it’s painless, quick, and honestly I forget that I have to do them until my next injection rolls around.”

Benefits of utilizing the Nurse Ambassador Program
Much like other biologics on the market, patients can tap into the free Nurse Ambassadors on hand to help ease the transition to Skyrizi. These nurses provide invaluable guidance and comfort every step of the way. Not only is utilizing these programs beneficial for patients, but also caregivers who may be helping to administer medication.

Kelly-“The device is so new, and the instructions can be long and a little complicated, but AbbVie has a nurse ambassador program that is free for all patients. I cannot recommend the program enough. My nurse ambassador came to my house before I even received the first infusion dose and answered all my hundreds of questions about the expected side effects, the rate of response, and showed me a demonstration with the OBI. It was helpful to get comfortable with the training device. My nurse ambassador also showed up to my house for my first injection and walked me through each step and was excellent at providing support.”

Natalie started Skyrizi infusions in May, 2 infusions down, 1 more to go before she starts with the OBI. She says while she hasn’t experienced huge benefits yet, she’s still hopeful. This is her first biologic and she’s appreciative of how helpful the AbbVie nurse has been through the process.

“I am still pretty new to this myself, but talking with the Skyrizi nurse has helped a great deal, especially getting their co-pay program and just having someone to check in on you.”

Jessica– “AbbVie has an amazing support system, and you can always have a nurse ambassador visit you in person or Facetime you. When I FaceTime the nurse, she guides me through it. Just talking to her while the injector is on for five minutes has made a difference.”

Cassandra-“I live in Canada, so things may be different elsewhere, but Skyrizi is the first biologic where I was sent a “Welcome package” which had a little health/wellness goal setter, appointment tracking sheets, a large needle disposable cartridge for my used injectors, and a mini cooler with reusable ice packs. I was super impressed, and it was fun and cute to receive. I have used the nurse ambassador a few times, especially at the beginning. It’s nice to ask questions or voice concerns with them. Having a nurse ambassador gives me peace of mind.”

Maha-“I really appreciate AbbVie’s commitment to patient education and support through their Skyrizi Hub which provides insurance specialists, nurse ambassadors, and an on-call line to help with any medical or financial concerns! My nurse ambassador walked me through my first injection and has followed up with me regularly to check on my progress both in terms of clinical symptoms and also quality of life!”

Struggling with the “newness” of being a biologic the first year it’s approved for IBD

Kelly ended up flaring badly between her third induction infusions and the fourth dose (her first at home injection). She met with her GI several times, discussing what to do. Since Skyrizi is such a new IBD drug, there really isn’t any extensive anecdotal evidence or patient stories about whether it be worth it to continue the drug, or if she would be considered a “primary non-responder.”

“We struggled with what criteria to use to determine if I just needed to wait longer or if I needed to switch drugs. My GI reached out to the Skyrizi sales rep for their practice and was told not to give up on the drug before 24-26 weeks because clinical trials did show that a non-trivial number of outliers did capture response to the drug later than the expected 8-12 weeks that was seen with most primary responders. At 14 weeks, I could tell that I wasn’t seeing any response to the drug because I was tracking my symptoms, daily bowel movements and pain. It was helpful to have that data to show us in black and white that I wasn’t doing well.”

Looking at the reality of the data and watching her symptoms escalate and her inflammation creep higher and higher despite the steroids and Skyrizi, Kelly and her care team made the decision to discontinue Skyrizi and move to another drug.

“It’s hard to hear from so many medical professionals that a drug with only about a 40% response rate is considered a raving success in the GI community. For me, that’s an enormous number of people who did not respond to this drug. I wish very much I had been one of them, because it’s scary and upsetting when you burn through a drug and cannot go back to it in the future because of possible antibody development.” says Kelly.

Ultimately, the decision to try a medication is a highly personal decision, one that should be made well-informed and jointly with your GI healthcare provider.

Maha says, “My experience with Skyrizi has affirmed that there is hope in all the new therapeutic modalities that are coming out, and that they can offer patients a strong quality of life while delivering treatment as minimally invasive as possible.”

Interested in reading previous Light’s Camera Crohn’s Patient Experience articles about other biologics?

Read them here:

Humira

Remicade

Entyvio

Stelara

Click here to check out the Skyrizi website.