Episodes

  • The Harms of Copay Accumulators

    The Harms of Copay Accumulators
    Apr 30 2024
    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. Aimed Alliance. How a Loophole in the Patient Protection and Affordable Care Act Can Impact Access To Your Necessary Treatments: https://aimedalliance.org/wp-content/uploads/2022/07/Aimed-Alliance-Non-EHB-Fact-Sheet-FINAL-1.pdf Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2021; Notice Requirement for Non-Federal Governmental Plans: https://www.federalregister.gov/documents/2020/05/14/2020-10045/patient-protection-and-affordable-care-act-hhs-notice-of-benefit-and-payment-parameters-for-2021 Copay Accumulator Programs: https://cga.ct.gov/2024/rpt/pdf/2024-R-0034.pdf?t=1713267305928 State Insurance Departments: https://content.naic.org/state-insurance-departments From the HIV+Hepatitis Policy Institute: In 2022, the HIV+Hepatitis Policy Institute, two diabetes groups, and individual chronic disease patients filed a lawsuit in the U.S. District Court for the District of Columbia challenging the federal rule that allowed "copay accumulators." Insurers use "copay accumulator" programs to avoid counting the value of copay coupons that patients get from drug manufacturers toward a patient's deductible and out-of-pocket costs -- effectively double charging the patients. In 2023, the court ruled in favor of the plaintiffs and struck down the federal rule that had allowed health insurers to avoid counting copay assistance from drug manufacturers toward a patient's out-of-pocket cost. But the government isn't enforcing the court's ruling, so patients are still subject to copay accumulator schemes. It's bad enough that the federal government is effectively ignoring a court ruling. Far worse is the fact that patients are still being unjustly subjected to copay accumulators that prevent them from being able to afford their prescription drugs as a result. Patients need the federal government to issue a new rule ASAP. Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio. Episode transcript and more information at: https://bit.ly/AIBD151 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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    35 mins
  • IBD and Somatic Therapy With Abri Bernstein

    IBD and Somatic Therapy With Abri Bernstein
    Apr 16 2024

    People with IBD are more likely to live with anxiety, depression, or other mood disorders than people who don't live with one of these conditions. For that reason, caring for mental health is as important as caring for physical health. But it doesn't always work out that way, as patients may not know how important their mental health is to their physical health, or may not have access to a mental health professional. Abri Bernstein shares her personal journey with ulcerative colitis (UC) and how somatic psychotherapy helped her cope with living with the disease. Abri explains somatic psychotherapy as a holistic approach to healing that focuses on the body and nervous system regulation. She describes various modalities, such as somatic experiencing, sensorimotor psychotherapy, and acceptance and commitment therapy (ACT), emphasizing the importance of addressing trauma stored in the body for healing to occur.

    Resources and information discussed in this episode:

    • What Is Somatic Therapy?
    • Trauma and the Nervous System: A Polyvagal Perspective
    • Polyvagal Institute
    • The Trauma Foundation
    • Bonaz B, Sinniger V, Pellissier S. Therapeutic Potential of Vagus Nerve Stimulation for Inflammatory Bowel Diseases. Front Neurosci. 2021;15:650971. Published 2021 Mar 22. doi:10.3389/fnins.2021.650971.
    • Polyvagal Theory: A Science of Safety

    Find Abri Bernstein at:

    • Web: Healing With Abri
    • LinkedIn: Abri Berstein
    • Email: abribern@gmail.com

    Find Amber J Tresca at:

    • AboutIBD.com: About IBD
    • Verywell: Verywell Health
    • Facebook: @aboutIBD
    • Twitter: @aboutIBD
    • Pinterest: @aboutibd
    • Instagram: @about_IBD

    Find Mac Cooney (mix, sound design, and theme music) at:

    • Facebook: @maccooneycomposer
    • Instagram: @maccooneycomposer
    • Web: Cooney Studio
    • Theme music, IBD Dance Party, is from ©Cooney Studio.

    Episode transcript and more information at: https://bit.ly/AIBD150

    These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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    53 mins
  • Colorectal Cancer Awareness Month With Dan "Dry Dock" Shockley

    Colorectal Cancer Awareness Month With Dan "Dry Dock" Shockley
    Mar 26 2024
    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. Find Dan "Dry Dock" Shockley at: Twitter: @Dryshockley Instagram: @DanDryDock LinkedIn: @Dan Dry Dock Shockley Find Amber J Tresca at:
    • AboutIBD.com: About IBD
    • Verywell: Verywell Health
    • Facebook: @aboutIBD
    • Twitter: @aboutIBD
    • Pinterest: @aboutibd
    • Instagram: @about_IBD
    Find Mac Cooney (mix, sound design, and theme music) at:
    • Facebook: @maccooneycomposer
    • Instagram: @maccooneycomposer
    • Web: Cooney Studio
    • Theme music, IBD Dance Party, is from ©Cooney Studio.
    Episode transcript and more information at: https://bit.ly/AIBD149 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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    33 mins
  • Making Crohn's Disease Funny With Matt Nagin

    Making Crohn's Disease Funny With Matt Nagin
    Feb 13 2024
    We can hold two truths: Crohn’s disease is funny. It is also not funny. I speak with Matt Nagin, who has many talents, but we focus on his work as a comedian and actor living with Crohn’s disease. Our discussion focuses on how people need laughter and comedy in their lives. Yet, living with an illness like inflammatory bowel disease (IBD), it can be challenging to find those comedic moments. Especially when most people don’t know what IBD is, and even among those who do, they kind of don’t want to hear about it sometimes. Get tips from Matt on how to form a sense of humor about illness, keep people from getting burned out on you, and think outside the box when it comes to symptoms.   Find Matt Nagin at:
    • Web: mattnagin.com
    • Facebook: @naginplease
    • Twitter: @naginplease
    • Instagram: @naginplease
    • TikTok: @naginplease
    • LinkedIn: Matt Nagin
      Find Amber J Tresca at:
    • AboutIBD.com: About IBD
    • Verywell: Verywell Health
    • Facebook: @aboutIBD
    • Twitter: @aboutIBD
    • Pinterest: @aboutibd
    • Instagram: @about_IBD
      Find Mac Cooney (mix, sound design, and theme music) at:
    • Facebook: @maccooneycomposer
    • Instagram: @maccooneycomposer
    • Web: Cooney Studio
    • LinkedIn: @macooney
    • Theme music, IBD Dance Party, is from ©Cooney Studio.
      These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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    37 mins
  • Amber's Year in Books 2023

    Amber's Year in Books 2023
    Jan 30 2024
    What did you read over the past year? If you made a reading goal: did you hit it? The books I read in 2023 included biographies, fantasy, fiction, and romance. Plus, I had several authors who live with Crohn’s disease or ulcerative colitis on the show this year, so I read their books as well. Hear more about some of the books I enjoyed in 2023, how you can hear more from authors with IBD, and ways that you can hit those reading goals this year. IBD Author Episodes: The Plant-Based Crohn’s and Colitis Cookbook – About IBD Podcast Episode 127 Up and Adam: A Patient’s Experience on Winning with IBD — About IBD Podcast Episode 130 I Pooped My Pants With April Michelle Harris – About IBD Podcast Episode 133 Positivity Beats IBD With Josef Miller – About IBD Podcast Episode 143 Books mentioned in this episode: Why Not Me? - Mindy Kaling Yes Please - Amy Poehler Bossypants - Tina Fey Orange Is the New Black - Piper Kerman Spare - Prince Harry Born With Teeth - Kate Mulgrew Where the Deer and the Antelope Play - Nick Offerman Fan Fiction - Brent Spiner, Jeanne Darst Wrong Place Wrong Time - Gillian McAllister Tomorrow, and Tomorrow, and Tomorrow - Gabrielle Zevin The Dead Romantics - Ashley Poston Where the Crawdads Sing - Delia Owens The House in the Pines - Ana Reyes The Testaments - Margaret Atwood The Heart Goes Last - Margaret Atwood Maid - Stephanie Land Class - Stephanie Land  Under the Whispering Door - TJ Klune  In the Lives of Puppets - TJ Klune Long Way Down - Jason Reynolds  Red at the Bone - Jackeline Woodson Hatchet - Gary Paulsen The Plant-Based Crohn’s and Colitis Cookbook - Helena Rose Murphy The Purple Rose - Josef Alexander Miller I Pooped My Pants - April Michelle Harris Up and Adam: A Patient's Experience on Winning with IBD - Adam Finkelstein Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio LinkedIn: @macooney Theme music, IBD Dance Party, is from ©Cooney Studio.   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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    26 mins
  • IBD Connect With Lisa Fournier

    IBD Connect With Lisa Fournier
    Jan 16 2024
    A diagnosis of inflammatory bowel disease (Crohn’s disease, ulcerative colitis, IBD) affects the entire family. When it’s a child that’s diagnosed, it changes so many things and brings a host of challenges. Families experience many unmet needs related to IBD. My guest is Lisa Fournier of IBD Connect. Lisa is the mother of two children who live with IBD. Her experiences in helping them manage IBD at different stages in life compelled her to be a support for others. She worked with her local hospital to start a support group and eventually founded IBD Connect. Learn about the programs IBD Connect offers and how the community can support their important mission.   Concepts on this episode:  
    • Very Early Onset Inflammatory Bowel Disease (VEO-IBD) 
    • UMass Chan Medical School Center for Applied Nutrition
    • Methicillin-resistant Staphylococcus aureus (MRSA)
      Find IBD Connect at:
    • Instagram: @ibdconnectinc
    • Facebook: @IBDConnectInc
    • Web: IBD Connect, Inc.
      Find Amber J Tresca at:
    • AboutIBD.com: About IBD
    • Verywell: Verywell Health
    • Facebook: @aboutIBD
    • Twitter: @aboutIBD
    • Pinterest: @aboutibd
    • Instagram: @about_IBD
      Find Mac Cooney (mix, sound design, and theme music) at:
    • Facebook: @maccooneycomposer 
    • Instagram: @maccooneycomposer
    • Web: Cooney Studio
    • Theme music, IBD Dance Party, is from ©Cooney Studio.
      Episode transcript and more information at: https://bit.ly/AIBD146   These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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    36 mins
  • Post-Traumatic Stress Disorder and IBD With Stephanie Brenner, LCSW, MSW

    Post-Traumatic Stress Disorder and IBD With Stephanie Brenner, LCSW, MSW
    Dec 19 2023
    My guest is Stephanie Brenner of Chronic Illness Psychotherapy. Stephanie is a Licensed Clinical Social Worker who has experience in working with clients with chronic illnesses. She has also taken on a variety of roles in GI space, including previously serving on both the advisory team for the Pediatric Crohn’s Guidebook and the recruitment committee for the Rome Foundation’s GastroPsych organization. Stephanie lives with Crohn’s disease and a permanent ileostomy and is also a cancer survivor. I asked her to help us better understand PTSD and PTS as they relate to having a chronic illness like IBD. She defines PTSD and why it can happen with IBD, what some of the signs and symptoms might look like, and what patients can do to address their mental health. Episode transcript and more information at: https://bit.ly/AIBD145 Find Stephanie Brenner, LCSW, MSW at: Web: https://chronicillnesspsychotherapy.com/ Facebook: https://www.facebook.com/chronicillnesspsych Concepts discussed: An Overview of Rectovaginal Fistula: https://www.verywellhealth.com/rectovaginal-fistula-overview-4587356 An Overview of Anal or Rectal Abscess: https://www.verywellhealth.com/perirectal-abscess-2328821 Proctectomy Surgery for Inflammatory Bowel Disease: https://www.verywellhealth.com/proctectomy-surgery-for-inflammatory-bowel-disease-4122490 Sacha McBain, PhD: https://www.linkedin.com/in/sachamcbain/ What Is Post-Traumatic Stress Disorder (PTSD)?: https://www.verywellhealth.com/what-is-ptsd-5084527 The Psychology of the Sickbed: https://www.amazon.com/Psychology-Sickbed-J-H-Berg/dp/B004NMY0RK Taft TH, Quinton S, Jedel S, Simons M, Mutlu EA, Hanauer SB. Posttraumatic Stress in Patients With Inflammatory Bowel Disease: Prevalence and Relationships to Patient-Reported Outcomes. Inflamm Bowel Dis. 2022;28(5):710-719. doi:10.1093/ibd/izab152 What Is EMDR Therapy?: https://www.verywellhealth.com/emdr-therapy-5212839 Understanding Diaphragmatic Breathing: https://www.verywellhealth.com/diaphragmatic-breathing-how-to-benefits-and-exercises-5219974 All About Grounding: Techniques to Connect to Nature: https://www.verywellhealth.com/grounding-7494652 Self-Report PTSD Checklist for DSM-5 (PCL-5): https://www.ptsd.va.gov/professional/assessment/documents/PCL5_Standard_form.pdf (other checklists https://www.ptsd.va.gov/professional/assessment/adult-sr/ptsd-checklist.asp#obtain) Rome Foundation: https://romegipsych.org/ Samantha Irby: https://www.samanthairby.com/ Tig Notoro: https://tignation.com/ Hannah Gatsby: https://hannahgadsby.com.au/ Cameron Esposito: https://www.instagram.com/cameronesposito/ Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio LinkedIn: @macooney Theme music, IBD Dance Party, is from ©Cooney Studio.   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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    46 mins
  • IBD in the Hispanic Community With Oriana Damas, MD

    IBD in the Hispanic Community With Oriana Damas, MD
    Dec 5 2023

    As an assistant professor of medicine in the Division of Gastroenterology at the University of Miami Miller School of Medicine, and the Director of Translational Studies for the Crohn’s and Colitis Center, Dr. Damas sheds light on the misconception that IBD only affects certain ethnicities. Her extensive research explores the connection between of environment and genetics in the development of IBD, with a special focus on its impact on immigrants from Latin America. Dr. Damas shares insights into the challenges of studying the role of diet in IBD, revealing key findings from her research and explaining how her work is reshaping our understanding of these diseases.

    Find Oriana Damas, MD at:

    • University of Miami: Oriana Mazorra Damas, M.D.
    • Twitter: @oridamas

    Dr Damas' Research:

    • The Current State of Care for Black and Hispanic Inflammatory Bowel Disease Patients
    • Social barriers influence inflammatory bowel disease (IBD) outcomes and disproportionally affect Hispanics and non-Hispanic Blacks with IBD
    • Low-Fat, High-Fiber Diet Reduces Markers of Inflammation and Dysbiosis and Improves Quality of Life in Patients With Ulcerative Colitis
    • Ethnicity influences risk of inflammatory bowel disease (IBD)-associated colon cancer: a cross-sectional analysis of dysplasia prevalence and risk factors in Hispanics and non-Hispanic whites with IBD

    Find Amber J Tresca at:

    • AboutIBD.com: About IBD
    • Verywell: Verywell Health
    • Facebook: @aboutIBD
    • Twitter: @aboutIBD
    • Pinterest: @aboutibd
    • Instagram: @about_IBD

    Find Mac Cooney (mix, sound design, and theme music) at:

    • Facebook: @maccooneycomposer
    • Instagram: @maccooneycomposer
    • Web: Cooney Studio
    • Theme music, IBD Dance Party, is from ©Cooney Studio.

    Episode transcript and more information at: https://bit.ly/AIBD143

    These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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    39 mins