February 2024 – lights camera crohn's

This blog post is sponsored by the Alliance for Access to Care. All thoughts and opinions are my own.

Going head-to-head with insurance companies goes hand in hand with managing chronic illness. The amount of time wasted, and energy exhausted over the course of a patient’s journey is incomprehensible. But the Alliance for Access to Care is looking to change that with the help of its latest campaign known as Healthcare Here. This coalition of healthcare associations has shared concerns about the way that insurance companies have adopted and implemented practices and policies that impede timely decisions related to treatment coverage at the expense of patient care. The burden of these practices, as we know all too well, not only falls on patients, but also on local hospitals that make up the backbone of community care that so many people rely on.

This week on Lights, Camera, Crohn’s we hear from Sr. Mary Haddad, RSM, President and Chief Executive Officer, Catholic Health Association, about the key issues and how she’s leading the charge.

The mission of Healthcare Here

Sr. Mary says the mission of the Catholic Health Association of the United States (CHA) is to advance Catholic health in caring for people and communities. Recently they also adopted a new vision statement that highlights why they are so passionate about health care reform: We Will Empower Bold Change to Elevate Human Flourishing.

“We are keenly aware that the United States’ health care system is in dire need of bold change, and this needed change is long overdue. Commercial insurance companies that profit from the delay and denial of health care stand in direct opposition to our mission of caring for people. How can a person flourish, or even survive, if their basic health care needs are not being met?”

As a faith-based organization, they believe that their ministry echoes that of Jesus Christ, who spent his time on earth providing compassion care for those in need.

“This cause is not only central to our mission and vision; it’s core to who we are,” she said.

Local hospitals in financial distress

When commercial insurance companies continually delay or deny coverage for care to those who need it, the cost of that care is passed to local hospitals. Not-for-profit hospitals have policies in place to ensure that those burdened by financial challenges receive either free or discounted care.

“As an example, on average, members of CHA provide free care to individuals and families who are under 200 percent of the federal poverty level guidelines. They also provide discounted care for those making up to 350 percent of the federal poverty level guidelines,” explained Sr. Mary.

The role of AI and medical decisions made by insurance companies

The CHA has seen several examples of commercial insurers utilizing automated systems to quickly process claims that may require greater scrutiny.

“For example, a recent ProPublica article found that Cigna spent an average of 1.2 seconds per individual case to deny more than 300,000 claims. They used an automated system to do this and, in doing so, saved millions of dollars for themselves. NaviHealth, which is a UnitedHealth Group subsidiary, is currently being investigated for trying to align rehab stays for Medicare Advantage patients to within 1% of days projected by an algorithm,” she said.

There are other examples, but the overall trend is telling enough. According to Change Healthcare, denial rates increased by 23 percent from 2016 to 2020. Meanwhile, profits from commercial insurance companies continue to rise.

A call to action for patients and caregivers

It can feel helpless as a patient, feeling as though your health and well-being is in the hands of your insurance company. I relate to this on many levels. Since my Crohn’s disease diagnosis in 2005, I’ve had to deal with everything from insurance telling me I’m too young for my annual colonoscopy to deciding the biologic injection I’ve been on since 2008 needs to switch to a biosimilar, not for medical reasons, but because of insurance coverage.

“We must advocate for change in the health care system, specifically as it relates to commercial insurers. On Healthcarehere.org, the CHA has pre-written a message that patients and advocates can send to their local, state and federal elected officials that gets the message across loud and clear: local hospitals are important and need to be protected,” said Sr. Mary.

Rural hospitals at risk

Not-for-profit hospitals are experiencing dire financial straits. More than 30 percent of the United States’ rural hospitals are at risk of closing. Per-patient hospital expenses have increased. At the same time, commercial insurance premiums are increasing at twice the rate as the annual rise in hospital prices.

“We’re approaching a point where a dam is going to break. And the ones left dealing with the shortfall of coverage will be patients and the local hospitals that they rely on for care. Ideally, all sectors of the healthcare system should be working together to deliver affordable, accessible, and high-quality care for patients. Through this campaign, we want the public and the policymakers they elect to understand how profit-driven actors are manipulating the health care system, which in turn is harming patients and the local hospitals that care for them,” she said.

Sr. Mary went on to say chronic illness patients need to know they are safe and welcome at their local hospitals.

“We want patients to understand that they have a voice which needs to be heard. Coupled with the advocacy efforts of the Alliance for Access to Care, patient testimonials are a powerful tool in standing up to the commercial insurance industry that would profit off their illnesses. Too many have been victimized by this broken system of care. The stories need to be told and change must happen now.”

If you have a story of denials to care through commercial insurers, send them to story@healthcarehere.org. We want policymakers to understand that this isn’t a battle between hospitals and insurers. This is an issue that affects real people. Your stories and experiences matter and deserve to be heard. Lives are at stake.

Kids are more intuitive than we tend to give them credit for. They are always watching us and even before they’re able to speak in sentences they have an innate sense of empathy and understanding. As an IBD mom of three, whose kids are almost 7, 5, and 2.5, I’ve started to think more lately about how to explain my Crohn’s disease to them in a way that will educate them, without scaring them. It can be a difficult balance.

I know my older two know mama gives herself shots, often needs to run to the bathroom, and gets “tummy aches” but I haven’t yet dropped the term “Crohn’s” or “disease” to them quite yet. It can be hard to explain and sometimes when I start trying to share more, I feel like it’s still going over their heads. Their concerned eyes when I’m in pain and how they watch me do my Humira injections is a reminder to me that they are aware something is going on. As we potty train my youngest, he commends himself for going on the potty by saying he’s “just like mama” …ah, what a great analogy!

This week on Lights, Camera, Crohn’s hear from several IBD parents about how they transparently communicate their experiences with Crohn’s disease and ulcerative colitis. It can be a fine line educating and being open, while also trying not to overwhelm and scare kids. I’ve found it extremely helpful tapping into the community and gaining input from others and I hope you do, too!

Helpful Guidelines for Navigating the conversation with your kids

Choose the right time. Pick a time when you won’t be interrupted and can focus on the conversation. Ensure it’s a moment when you and your children are feeling calm, at ease, and open to discussion. My recommendation as an IBD mom would be to have this conversation on a “feel good” day—rather than when you’re flaring or in the hospital.
Prepare yourself. Decide in advance how much detail you want to share based on your child’s age and maturity level. IBD is complicated, be ready for a range of emotions including sadness, fear, and even anger.
Use age-appropriate language. Explain your IBD in a way that is understandable to your child. Avoid using confusing or technical terms. For younger kids, it might be helpful to compare your illness to something they already understand.
Be honest but reassuring. You can be transparent and truthful, but also reassure them about all you do to manage and control your IBD. Empathize with the aspects of your daily life that won’t change, to provide them with a sense of stability and comfort.
Focus on practical impacts. Explain how your IBD might affect your daily routine or activities with them in a straightforward way. Use examples such as—“Mommy’s Crohn’s can be unpredictable, I may say we’re going to the park, but then I don’t feel well so we have a movie date and snuggle instead and plan to go to the park another day.”
Encourage questions. Allow your children to ask questions and express their feelings and know this will be an ongoing conversation throughout life. Go into the conversation without expectations. It’s ok to admit if you don’t have all the answers. You can explore some of the questions together.
Provide continuous support. Let your kids know that it’s okay to have and express their feelings about your IBD. Offer them ongoing support and reassurance. Let them know they can always come to you with questions or concerns at any time.
Seek support when needed. Consider enlisting the help of a therapist or a counselor, especially if you or your children are struggling to cope. Joining support groups and tapping into the online patient community and connecting with fellow IBD families in similar situations can be beneficial.
Keep the conversation going. Check in with your children regularly about your IBD and how you’re feeling. Be casual about it. Share when you see an opportunity to teach or calm fears that your kids may be internalizing.
Highlight the positives. While acknowledging the challenges, also focus on the positive aspects, such as the strength of your family unit or the support you have from friends and community. I always tell my kids when I’m doing my injection that mommy is strong, and we can all do hard things.

By approaching the conversation with honesty, sensitivity, and openness, you can help your children understand and cope with your chronic illness in a healthy way.

*My 2-year-old trying to make me smile during a rough day in the bathroom.*

IBD as a family disease

There’s a common saying in our community that IBD is a family disease, in that whether you have Crohn’s or ulcerative colitis or not, if someone in your nuclear family has it, the disease impacts your living experience in some way.

Emily and her husband have IBD and so do their three daughters, so discussions about IBD are frequent in their home since it’s a living reality for all five of them. She tells me the conversations tend to fall in one of the following categories:

1) Explanations of IBD details, procedures, surgeries, or diet needs for a member (or members) of the family.

2) Discussions to calm anxieties in one child about the presentation of IBD in themselves or in another family member.

She says the second category tends to be the more challenging conversations, by far.

“In the first category, we tend to stick to factual, age-appropriate explanations. For example, when our five-year-old needed to know about scopes and surgeries, we explained that a specific family member has “belly problems” and the doctor is helping by taking pictures of their belly and fixing the parts that were causing trouble,” explained Emily.

As the girls have gotten older, Emily says they add details about how the doctors do different procedures – always led by their child’s level of interest and desire for the knowledge.

“We are always honest about pain or discomfort related to medical procedures. Many things are NOT painful, and we want them to trust us that something does not hurt if we tell them. This has served us well. When surgery was needed for one daughter, we discussed how she would be sore afterwards, but we had ways to help the pain until it would subside. This was undoubtedly a challenging time for us, but our daughter did amazing,” Emily said.

As Emily’s girls have gotten older, as a preteen and teen, they understand more about their parents,’ and their own, IBD. They have lived through surgeries and many medical procedures in their family. Emily says now the more challenging conversations have started, related to knowing the possibilities around IBD.

“For example, I had a colon perforation following a routine monitoring scope for my IBD. It was a rare event that we are all warned about prior to a colonoscopy. It resulted in a more significant repair surgery and several days in the hospital. My daughters are old enough to realize that they also have scopes regularly and we had to have some discussions about the chance that the same thing could happen to them. It was challenging for our family for a few rounds of scopes!”

Emily says they addressed this topic mostly by focusing on the “helpers” as the iconic Mr. Rogers would! Yes, bad things can happen, but she reminded her daughters that they are so lucky to have doctors and medical professionals to “fix” these problems. She reminds them that they are lucky to have family and friends to help when they are not feeling well. She also talks about how they are lucky to have each other – who understand the ups and downs of this disease.

“This narrative has gotten our family through many challenges! I talk with my oldest daughter much more now about the details of her IBD. She is a teen and has had more than her fair share of IBD troubles. She has watched me deal with my challenges too. We are open with each other about the negative parts, and our frustrations having to deal with IBD. It is a double-edged sword to have her growing up! On the one hand – I hate that she is old enough to really understand the negatives. But she is also turning into an amazing young woman who is one of my closest confidants with this disease. We understand each other’s highs and lows like most cannot. We supported each other in challenging times and celebrate together for each win!”

Sari says she bought a couple of children’s books that feature a caregiver with chronic illness.

“One of them is titled ‘Some days’…it’s about a mom with multiple sclerosis, but it works for IBD, too. It goes over how some days are more exciting and others are simpler more restful days. If there are other kids’ books people have found, I’d love to hear about them!”

Kate also has a book by someone with Crohn’s, but says they’ve also always been very honest and open about it with her son.

“I always worried he would tell people too much, but I’ve found he’s incredibly respectful and it has made me feel less shame in my body because I talk to him so positively about it. Especially the perianal disease, which has been really hard to talk about with people. My son is six and understands my immune system attacks my digestive tract. We also have a puzzle of the body we have played with for years and he knows the colon, intestines, rectum, etc. because of that.”

Becca says one of her favorite memories as an IBD mom is when her daughter was learning body parts and said, “Mommy and I have vulvas, Daddy has a penis, Daddy and I have butts, and mommy has a bag!” She also often asks to see her “cut” on my belly (c-section scar), but I constantly remind her that she shares her “cut” with a lot of intestine.”

Becca also says for the longest time her daughter thought that EVERY mom gets an ostomy bag when they’ve had a baby.

“She didn’t realize I had mine for four years before she was born!”

As an IBD Dad, Brandon said he stumbled upon a video series when his son was around age five that provided a solid explanation. At the time his son had a broken arm.

“The video explained people have booboos you can’t see. I explained that I had what the girl in the video has. Nowadays, I show both my boys’ photos from my colonoscopies.”

You can watch the video Brandon showed his son here.

Here are additional books about chronic illness that others have recommended:

The Crohn’s Bucket by Keyaan Vegdani

My mom is sick and it’s ok by Angie McPherson

My tummy really hurts by Shawntel Bethea

Guts: A Graphic Novel by Raina Telgemeier

Like Me: A Story About Disability and Discovering God’s Image in Every Person by Laura Wifler

Some Days-A Tale of Love, Ice cream, and Mom’s Chronic Illness by Julie A. Stamm

Wonder Mommy by Jennifer Senne

Ursula and Her Ulcerative Colitis: Kids, You Can Call it UC by Michaela Morrisey

My Silly Illy by Campbell Dwyer