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The Financial Burden of Cancer: Are you willing to share your story?
Over the last 25 years, major advancements in cancer diagnostics and treatment have led to significant improvements in clinical outcomes and survival rates. However, the cost of diagnostic procedures, therapy, including chemotherapy, targeted agents, and immunotherapy, as well as the long-term costs throughout survivorship mean people facing a cancer diagnosis also face substantial financial burden. This is sometimes called financial toxicity.
Mayo Clinic would like to interview 5-6 people who are willing to share their story about the financial burden of cancer. Your experience can help other people going through the expense of cancer treatment.
We are looking for real stories of people who have struggled with the financial burden of:
- mounting paperwork
- looming bills
- confusing financial terminology
- gaps in insurance coverage
- financial fears and insecurity
Do you need to be a Mayo Clinic patient?
No! These stories will support an education program and should not be reflective of any particular clinic or hospital.
How will the stories be used?
Parts of your experience may be used to provide real-life stories in an education program to help newly diagnosed cancer patients.
How can you participate?
- You can participate by phone, in writing or in person. You choose:
- Interview by phone.
- Provide your story in writing via email.
- If you live close to Rochester, Minnesota or Phoenix, Arizona, you might be invited to come to a Mayo Clinic video studio to share your story on camera.
- If you live anywhere else, you might be invited to record an audio version of your story via phone or Zoom.
- Your story may be used in a script to be read by someone else.
If you would like to participate, please post a comment below or private message me at @colleenyoung. Share some of your experience below.
Have you ever been confused by health insurance or billing terminology?
Have you ever wondered, “what’s a deductible, what’s an out-of-pocket maximum?
Have you ever been fearful for your financial security because of cancer treatment costs?
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I am neo ro this so i have insurance true my husband i knoe they pay 80%so far i got one bill for 241.00 but thsts not everything yet i have to call and find out forarranging paymements . I was thinking if medicaid will supplement this i am only 57 years old use medicaid to cover the rest
@josiahanjolaoluwa, I am so sorry to hear about the loss of your son. I encourage you to join the
- Loss & Grief Support Group https://connect.mayoclinic.org/group/loss-grief/
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1 ReactionLost my son 2 days ago.
He is 11months and 10 days.
So sad 😭
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3 ReactionsThe financial aspect of having cancer is very frightening. I'll go through a battery of tests, and discover most of them were covered, but not all. Sometimes the interpretations of the tests aren't covered. It is difficult, at best, because I used to have very good insurance, and am now on Medicare with supplemental G and prescription plans. I can't do as many extra jobs as I used to, so it is disconcerting. I have two cancers that are not curable, but are treatable, so the idea that the infusions are ongoing creates insecurity. (It is worrisome enough, without the financial stress.) I am starting to write down every time I call the billing offices, Medicare, etc. Am grateful to read other people's journeys in this regard. Thank you.
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5 Reactions@drashley, I believe you can direct your donor dollars at both the American Cancer Society and the Leukemia & Lymphoma Society.
- American Cancer Society https://www.cancer.org/donate.html
- Leukemia & Lymphoma Society https://www.lls.org/ways-to-give
Here are ways to give at Mayo Clinic too https://www.mayoclinic.org/giving-to-mayo-clinic/ways-to-give
Your gift will make a difference wherever you see fit to give. Thank you.
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2 ReactionsHello, I am looking for an organization I can donate to for the exact cause of helping with cancer related expenses. Specifically for Hodgkins Lymphoma patients. I would appreciate any direction. Thank you!
That’s what I’ll be doing. I have a friend who has spent considerable time in Rochester, and speaks highly of the support available.
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3 ReactionsYes, @elwooodsdad, I would start with contacting a Mayo Clinic social worker. They can help you find help.
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1 ReactionWe have a 10 year old gentleman miniature schnauzer who we will not put in a kennel. He likes walks and can take care of his needs. He will be in a large crate and taken for exercise several times daily. We are in Tulsa and Anne & Henry Zarrow have been generous benefactors. Would this issue be best addressed by the Mayo social work group? It will be awhile before we are able to structure this care.
@elwooodsdad, as you prepare for CAR-T therapy, I encourage you to join the discussion in the support dedicated to CAR-T here:
- CAR-T Cell Therapy Support Group https://connect.mayoclinic.org/group/car-t-cell-therapy/
You're not alone. Other members who have had CAR-T can share their experiences and tips.
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