On December 18, 2003, I was diagnosed with adult acute lymphoblastic leukemia. At that time, I was unemployed, my savings was nearly depleted, and my COBRA coverage was set to expire on February 29, 2004. I was thirty-seven years old, and up to this point, I had always been a very healthy, active woman. My biggest fear, aside from dying, was that I wouldn’t have medical coverage after February.
My cancer protocol required four to five days of hospitalization for each round of high-dose chemotherapy, which was completed by the end of March. I checked into the hospital on May 26 to begin four days of total body irradiation followed by two days of chemo before my bone marrow transplant on June 1, 2004. I then spent three weeks recovering in the hospital after BMT.
Following my December 18 diagnosis and ten-day hospital stay, I had moved into my sister Barbara’s home. She and her husband, Dan, took over paying my medical bills, health insurance premiums, and all other expenses.
I applied for Social Security Disability benefits in January and was approved, but my payments would not begin until I’d been disabled for five months. I received my first disability payment in July 2004. Meanwhile, I was researching individual medical plans and discovered that I was eligible for coverage since I’d been insured under a group plan for at least 18 months without any lapse in coverage prior to my intended March 1 effective date.
Once I received the insurance information packet, I was beyond depressed. The insurance premiums were unbelievable. I’d been paying $273 per month for my COBRA coverage—which at the time I thought was expensive—but now I’d be paying $659 per month for an individual plan. I had to have coverage, so my sister and her husband paid for it.
It is vital to have good medical coverage; it is so important to find a way to pay for it because if you do not have it, it can be catastrophic. My initial hospital stay cost $82,000, of which my insurance company picked up around $15,000, and I paid $550. My entire treatment including hospital stays (one 10-day; three 4- to 5-day; one 3-day due to increased fever after chemo; and a 4-week stay for BMT), chemotherapy, total body irradiation, medications, x-rays, CT and MUGA scans, and BMT probably totaled between $750,000 and $1,000,000 (this based on initial bills of which I saw the price tag and what I know to be the cost of BMT). My caregiver sister was also my bone marrow donor and 28 weeks pregnant—a whole other story in itself and an amazing one. My insurance company covered all her associated medical expenses.
Had I been without insurance, I may not have gotten the treatment I needed to save my life. Had I not had family that was financially capable of covering my expenses, I would not have had insurance coverage and the excellent level of care that accompanied it. I know first-hand how exorbitant medical costs are and how important good medical coverage is to ensure proper treatment.
In the following years, my health insurance premium rose to $759 then to $835 per month. By this time, I’d moved out of my sister’s home and into my own apartment where I was paying $1,000 a month rent. On the salary I earned as a temporary employee, I knew I could not survive if I had to pay $1,000 in rent and $835 for insurance premiums on a monthly basis.
I searched for other health plans and found one costing $453 per month with almost identical benefits, co-pays, and coinsurance. It was still expensive, but at least manageable within my budget. I accumulated some savings post-cancer while still residing with my sister’s family because I was able to work full-time and still collect my disability payments during the nine-month trial work period. This savings allowed me a small safety net post-cancer until I was again on solid financial footing.
My healthcare story had a happy ending, yet many people who are in the situation in which I found myself that December of 2003 may not be so fortunate. My heart breaks for those who go without treatment because they are uninsured, or those who are insured but have limited plans and have to make tough choices between their own and their children’s care.
I am a single woman and it was hard enough coping with my own cancer experience. I can’t imagine factoring a child and/or a husband into those concerns. It must be agonizing. Excellent medical care should be the right of everyone in this country, not only those fortunate ones covered by an employer-paid plan or who can afford an individual one.
Ms. Ludwig is the author of Rebirth: A Leukemia Survivor’s Journal of Healing during Chemotherapy, Bone Marrow Transplant, and Recovery