This is a real life drama I hope never happens to you. Moms, you may want to keep this one from your children. Dads, I invite you to listen up. On National Cancer Awareness Day, this seems like an appropriate post.
This past September I was shocked to learn I was diagnosed with prostate cancer. One definite tumor. One on the way. When my urologist outlined my treatment options I was even more shocked to learn my chance for erectile dysfunction (ED) and incontinence (as a result of no matter what treatment) was over 60%.
Since more than my sex life was on the line here I decided to do some research on my own.
I read at least two books on the standard forms of prostate cancer treatment, supplemented my reading with internet research, talked to family and friends, interviewed prostate cancer survivors of different treatments, and, at the recommendation of a long time fraternity brother, decided to investigate a cutting edge procedure called proton radiation therapy (prbt).
Unlike radial prostatectomy it didn't involve lopping off your prostate gland, seminal vesicles and part of your urethra then attaching the remainder to your bladder. Unlike standard forms of radiation it didn't pass through your body and risk significant collateral damage to adjacent tissue and organs. Pbrt was minimally invasive. Unlike photon radiation it stopped at the tumorous area. It risked little, if any, collateral damage, and what's more, it didn't cause side effects like incontinence or ED.
Seemed to good to be true.
But like any skeptic I wanted to do a reality check. So, I accessed a list of pbrt patients, randomly selected 35, and emailed them to compare diagnoses and inquire about their experience with pbrt.
Two amazing things happened.
One: all 35 replied.
Two: all reported little if any side effects.
Not one mentioned incontinence.
I stopped having nightmares about Austin Powers pumps and extra brief cases of adult diapers and starting dreaming about the possibility of pbrt for myself.
The question was: did Cigna of California (R), my heath care provider cover it?
The book I read about pbrt (circa: 2006) said it did. WSJ articles from the summer of 2013 said it did (with a review scheduled for December). To make sure I wasn't chasing some pipe dream I called Cigna(R) member services myself.
Lo and behold I was assured pbrt was covered, even for me, identified as a member of Cigna's HMO plan. (You have to give your ID and birthdate from the "get go.")
"Proton radiation therapy was covered by a non-grandfathered clause," explained Rosie, my Cigna Member Services associate. "Catch is, you have to change to the Loma Linda University (LLU) medical group to qualify, get that group to approve the treatment and submit the request to Cigna with this special number."
I didn't mind that I had to change my medical care to a group 65 miles away.
I didn't mind 45 days of 130 miles round trips.
I didn't mind the $1500 deductible.
I was happy. Rosie was happy to help. She gave me a list of LLU primary physicians accepting new patients. Even though the deadline to change medical groups had passed, a supervisor made sure it would be effective Nov. 1.
I had cancer. They had empathy. All was good. Rosie even asked If I wanted a case worker.
My PCP here Orange County scrambled to send my records to the LLU Proton Treatment Center post haste.
First week of November my wife and I gave up a day of work for the 130 mile round trip to see my new PCP for a referral.
Within two weeks I was in front on my new radiation oncologist who submitted my pbrt request to Cigna. (Another 130 mile trip.)
Cigna' s third party review arm, Care Core, cleared my pbrt treatment with the LLU Proton Treatment Center oncologist nurse who scheduled my setup appointment, dry run and 45 days of treatment.
Cigna's case worker sent LLU and myself written approval for my pbrt treatment.
A recording of the approval for playback was posted on Cigna Member Services.
Excited, I text messaged friends, family and all my work contacts that I had been approved for 45 days of pbrt that would begin the first week of December. (I work per diem. That meant I had to sacrifice at least 45 days of income.)
The morning of the day before Thanksgiving I arrived at Loma Linda's Proton Radiation Treatment Center for my set-up appointment.
After drinking the 24 ounces of water needed to position my internal organs for cat scan mapping and holding it through the 45 minute casting of my custom pod. (quite a feat when I urinate less than 15 minutes after drinking anything), LLU's financial advisor walked in and informed me that Cigna called to deny my treatment.
I almost doubled over in disbelief.
After two months of jumping through 130 mile round trip hoops, scrambling for records, begging for appointments, canceling jobs and trading nightmares for what I believed to be a dream come true, I was literally pulled from the treatment table.
My reservation to a gourmet restaurant was confirmed. I drove 65 miles, waited for my table to open, was served the appetizer, then the waiter arrived to tell me dinner was cancelled?
Who treats people like this? Worse yet, who treats anxiety ridden cancer patients like this?
LLU's financial advisor advised me to call Cigna to immediately clear matters up. The Proton Center tech promised he would fit me in to finish the cat scan mapping if I was successful.
Ever try to call an insurance supervisor during lunch time or the afternoon before Thanksgiving?
Loma Linda University Hospital is a Seventh Day Adventist institution. It's world renown proton radiation center has been in operation since 2000.
To petition Cigna click here