Through her blog entitled Secrets of Cancerhood, Suleika Jaouad has been sharing her battle with myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML). This led to her regular column “Life, Interrupted” for the New York Times and expanded to include her bone marrow transplant journey.
In this week’s column, “Life, Interrupted: Medical Bills, Insurance and Uncertainty,” Suleika addresses a topic of great importance: the financial impact of treatment. She starts by talking about how, like many young adults, she had not thought much about health insurance or the particulars of her parent’s plan. She acknowledges, “the first thing I learned was how lucky I was to have health insurance at all.” But, then she goes on to describe how even with insurance covering the bulk of her care, between co-pays, premiums, and out-of-network charges, the bills have mounted. According to Suleika, “for a cancer patient like me who visits the hospital on a weekly basis (and that’s when things are going well), every few days I owe another payment.” This does not even take into account the expense of relocating in order to access necessary medical treatment or her mother’s lost income due to the hiatus from work required to manage Suleika’s insurance and care.
Every day, The Bone Marrow Foundation hears from patients or their representatives about financial struggles resulting from the transplant required to treat their cancer or genetic condition. Most apply to one or more of the Foundation’s financial assistance programs designed to help alleviate some of the stresses of transplant-related expenses. Requests are regularly submitted for assistance with expenses like co-pays, insurance premiums, housing, transportation, childcare, donor search, meals, and other basic living expenses. Unfortunately, the need always exceeds the funds available. If you would like to help provide assistance to transplant patients and their families, please visit The Bone Marrow Foundation’s website.
We’ve posted quite a few of her articles and blog posts, but today at 4:00PM (Eastern Time), New York Times columnist and recent bone marrow transplant patient Suleika Jaouad will host a Facebook conversation about being a young adult with cancer.
Today, I will host an hour-long Facebook conversation on the New York Times about living with cancer in my 20s. The chat will take place beginning at 4 p.m. E.T. on the NYT Well Facebook page.
Join me if you can!
At 4 p.m. EST, go here to join the live chat: http://well.blogs.nytimes.com/2012/07/18/facebook-chat-with-suleika-jaouad/
Thanks and see some of you there!
(if you don’t have a Facebook account, you may have to sign up for one and click “Like” on the NYT Well Facebook page)
It was the annual fund-raising event for the Hope Lodge, my temporary home after a bone marrow transplant. The host asked all the survivors to step forward from the crowd. I froze. I didn’t know if that word applied to me. What does it mean to be a survivor? I certainly didn’t feel like one. Not yet, anyway.
The first time anyone used the word “survivor” in reference to me, I had just been admitted to the bone marrow transplant unit of Memorial Sloan-Kettering Cancer Center. A nurse came into my hospital room to review the transplant calendar with me. The transplant had been looming on the horizon ever since my diagnosis with leukemia in May 2011. The nurse briefed me on the sequence of events: intensive chemotherapy, followed by the transplant, and then a four- to six-week hospitalization. I noticed something on…
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