About IBD Amber J Tresca

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.

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.

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.

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.

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.

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.