Victoria, from the patient-led, charitable organization GetYourBellyOut, shares her journey with ulcerative colitis. She describes the unique role of patient advocacy and the importance of community support, as well as the innovative projects that GetYourBellyOut is undertaking to bridge the gap between patients and healthcare providers.
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In a recent episode of About IBD, I had the privilege of talking with Cass Condray, a passionate advocate and researcher. Cass, who not only works in IBD research but also lives with the condition, shared his insights into the unique challenges faced by the LGBTQIA+ community who live with IBD.
One of the issues highlighted in our conversation was lack of research. There’s little in the way of study looking at how IBD affects sexual and gender minorities, which influences healthcare outcomes and quality of life.
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Inflammatory bowel disease (IBD) patients can sometimes feel as though there is not enough support and resources for our community. For a condition that is common and also on the rise across the world,[1,2] it seems counterintuitive that there’s not more acknowledgement of how difficult these diseases are to live with and to treat.
For patients and their families, knowing that clinicians and scientists are working towards developing tools and treatments that will help in managing these conditions can be validating and impactful. People who have devoted their careers to IBD aren’t doing it for recognition. But there is a way to honor their contributions.
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Did you notice that suddenly one year you started paying more for your healthcare? Crohn’s disease and ulcerative colitis are sometimes treated with medications that are expensive. Manufacturers create programs to help patients afford these drugs. In the beginning, these payments from assistance programs counted toward a yearly health insurance deductible. Then, suddenly: they stopped counting. Overnight, patients found themselves responsible for more costs, while insurance carriers received what amounts to double payments. A 2023 court ruling says that this practice should be reversed again, but it’s not happening. Amber McCown tells her story of how a copay accumulator program took her by surprise and why she’s partnering with the HIV+Hepatitis Policy Institute and working with legislators and agencies to advocate for change.
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Diagnosed with attenuated familial adenomatous polyposis (AFAP), retired Navy veteran Dan “Dry Dock” Shockley shares his remarkable journey of service, diagnosis, and advocacy. Following his diagnosis, Shockley became a passionate advocate for early detection and reducing the stigma associated with living with an ostomy. He emphasizes the importance of proactive medical care and maintaining a positive attitude in the face of adversity. Through his advocacy work and personal journey, Shockley serves as an inspiration, demonstrating resilience, determination, and a commitment to making a difference for others.
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Do you have a sense of humor about your IBD? Jenna Ziegler of The Comical Colon found that keeping her sense of humor has helped her through the challenges she faced after being diagnosed with ulcerative colitis in college. After fighting her way back to health after severe flare-ups and carving out the life she wanted for herself, Jenna received another stunning diagnosis: a rare liver condition called primary sclerosing cholangitis, or PSC. Over the years she has done the hard work to learn how to be an empowered patient and she shares her 5 tips on how you can learn to advocate for yourself.
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Caregivers play an important role in the disease journey. For Rebecca Kaplan, whose husband, Dan, lives with Crohn’s disease, caregiving has been a large part of her life at times. When she went looking for support for herself as a caregiver, what she found was a need for more resources. She went on to not only create a support space for caregivers but also to take a leadership role in the inflammatory bowel disease community that benefits everyone who is touched by these diseases.
In the final episode of my Summer of Activism Series, I asked Brooke Abbott of The Crazy Creole Mommy Chronicles to help us better understand Congressional Briefings. During Crohn’s and Colitis Awareness Week, she spoke at a briefing about IBD and minority health. It was an opportunity to bring awareness to this little-discussed factor of IBD and it presented some challenges and opportunities. Learn more about Congressional Briefings, how they are an important tool for advocacy groups, and how they have an impact on public policy.
If you have the chance to speak on behalf of the inflammatory bowel diseases (IBD) community: would you take it? At first, volunteer and Crohn’s disease advocate Keri Flaccomio wondered if she had a right to attend a day on the hill event with the Crohn’s and Colitis Foundation and lobby in Washington DC on behalf of the IBD community. Her experiences while she was on the hill helped her to understand that not only did she have the right, but she also had a responsibility to tell her story — and the stories of others living with IBD. Learn how Keri made her hill meetings more effective and how they helped her to become empowered as an activist.
It’s a celebration of 50 episodes of About IBD! Download your FREE copy of the new single, “IBD Dance Party,” by signing up for the About IBD newsletter here:
http://aibdnewsletter.aboutibd.com/music
The inflammatory bowel diseases (IBD) can make people feel powerless and isolated. Participating in day on the Hill events in Washington DC with patient advocacy groups are one way to take back control and have your voice heard by those who can help affect change. Hear from Jaime Holland of Pretty Rotten Guts, who describes her experiences in lobbying on Capital Hill including why it’s important to her, how she navigates the day with mobility issues, and why the experience is empowering.
It’s a celebration of 50 episodes of About IBD! Download your FREE copy of the new single, “IBD Dance Party,” by signing up for the About IBD newsletter here:
http://aibdnewsletter.aboutibd.com/music