Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Sunday, September 14, 2008

I sold my husband for health insurance



I sold my husband for health care coverage. I know what you’re thinking. I’m being extreme. Before you judge, let’s do some math. Let’s look at the real price of health care.
In April 2006, when I was diagnosed, I had short term, long term, and life insurance. My husband held the health care policy. I was making $65,000 yearly as an RN with shift differentials, over time, and bonuses. My base pay, however, was $36,900. This was calculated based on my regular time day shift pay at thirty-six hours per week. When I became sick, short term disability insurance only covered 60% of my base pay. That equals about $22,140 yearly. That’s a pay cut of $42,860. Ouch, that is one tough pay cut to swallow.
Then, to add insult to injury, I had to have a biopsy to confirm my diagnosis. My insurance deductable was $2500 at the time. I reached that number in one swoop. That’s $22,140-2500= $19640. Then I would see my specialist weekly at $30 a visit, and the medications for the nausea caused by my chemotherapy were $10-40 each. These expenses were known costs associated with my illness that my husband and I were able to manage. My co-payments equaled $3600 in the first year of my illness. $19,640-3600= $16,040.
Other unforeseen expenses started to tally up. I had to travel seventy-five miles round trip to the hospital for treatment. Cha-ching. My husband took time off work to care for me. My son had to attend day care full time since I was too sick to care for him. I needed the visiting nurse to come to my home. I needed supplies for my central line, an infusion pump, and long term antibiotics.
After six months, I was no longer considered employed, and my life insurance had to change hands from my previous employer to me. The life insurance company to one look at my diagnosis of lymphoma and dropped me like I was hot.
Finally, my health insurance company started to refuse reimbursement for my PET scans. At $3000 a pop, the gold standard for cancer staging was not within my budget, and I would spend my few precious healthy moments on hold fighting for payment. However, when I was not healthy, my husband would give the hospital our credit card number for fear my illness would ruin our credit for life.
Then, while I was undergoing my bone marrow transplant, the short-term disability company called my husband to inform him that I had not sent in my social security award letter. He sent in the letter, only to be informed I had been over paid $1242 monthly from October 2006- March 2007. The balance had to be paid back. He again reached for the credit card. That equals $7452 or roughly half my income. $16,040-7452= $8588. This number does not include travel 70 miles roundtrip to Dartmouth Hitchcock Medical Center, and now the 400 miles to Dana Farber. The lunches I had to eat. It does not include the $5000 yearly I was paying in daycare. These numbers put me in the red before mortgage, taxes, insurance, car payments, oil, etc.
I am getting a middle class beat down. My American dream is getting a butt kicking. Yes, this is all tax deductable, but my $1500 tax return was a slap in the face against all my expenses.
Then in February 2008, I was again in remission, my husband’s crohn’s disease began to flare up. He was in constant pain and I pushed for him to pursue treatment so our son could have at least one healthy parent.
He was told, at twenty-nine, his Crohn’s had caused scarring in his bowel and surgery was his only option. The surgery would require an eight week period of recovery.
My lymphoma reoccurred in March 2008. I was told I had exhausted traditional treatment and should look into the major cancer centers in New York and Boston for trial drugs and an allogenic stem cell transplant by an anonymous donor.
With the support of our friends and family, we decided to pursue the medical advice given to us by our physicians.
Four months later, on July 7 2008, I started a clinical trial at Dana Farber Cancer Institute in Boston.
On July 9 2008, my husband underwent a bowel resection at Dartmouth Hitchcock Medical Center.
But wait, he was our insurance policy holder! No work, means no insurance. No work means you have to pay the dreaded COBRA at $1600 a month for a family (and that’s a deal. Health care cost go up at 3x the rate of inflation or 40% in 2008) with a $6000 deductable. Failure to comply with these rules and allowing our insurance to lapse would label us as having “pre-existing conditions” and make us uninsurable for life! We had all ready paid up our $4000 deductable for my health (an increase due to the change in his companies insurance) plus countless dollars in traveling and co-pays.
Disability also means you receive 60% of your base pay. Ouch, our wallets are hurting. Let’s do the math.
Let’s say my husband made $50,000 yearly at the time of his illness. He’s now down to 60% of his pay or $30,000. Not too shabby. This would bring in $2500 monthly tax free from disability insurance, but now we had to pay $1600 monthly to keep our insurance or $19,200 yearly ( $30000-19200=10,800). Then we would have a $6000 deductable ($10,800-6000=$4800)
From a solidly middle class family with an enviable combined income of $115,000 we know had Forty-Eight Hundred dollars for a family of three for food, taxes, housing, travel, etc.
Could you afford to get sick?
My husband spoke with his company who agreed to allow him to work from the hospital and from home on a laptop. Our solution to the daunting financial picture we were facing: My husband would have to continue working.
His surgery required twenty inches of his small bowel to be removed along with his ileo-cecal valve, three hundred sutures and staples, and an eight inch abdominal incision. He took less than a week off. He continued to work through a post-operative infection while I was receiving care in Boston.
Now that his eight week period is up, he is married to his company. Any person who is willing to work through bowel surgery for insurance lives in fear of losing his job. His company now knows this. If there is a choice between supporting me in my transplant or working. Working wins. My parents can take care of me.
I hope people are aware that my story is not unique. The health care system is the next big national crisis. Like oil soared and scared us into change, health care is set to implode at any time. Let’s make some changes before it’s too late.

2 comments:

Anonymous said...

Thanks for your story. I hope you sent copies to State and Federal leaders, agencies and advocates for our cause. Your story is so tragic, but not uncommon...so many lives are being devastated by insurance companies, Social Security Disability, drug companies, etc. You have a unique style of writing that gets the point across...we need help NOW! We all have to start standing up and speaking out more! Why do we have to lose everything we have because of an illness? Why is it we can pay premiums for years, but they can drop us on a whim? It's bad enough just having to be sick, without having to worry about money, redtape and jumping through hoops.
We need big changes. I wonder if I'll see them in my lifetime...

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