The Young and The Relentless

Young adults from 18 to 34 years old make up more than half of the nation’s uninsured population—largely due to the fact that they tend to have lower incomes. For those in their 20s and 30s who do have health insurance, peace of mind isn’t necessarily part of the deal.

Recently, public radio’s Terry Gross interviewed two young women who were diagnosed with cancer in their 20s. The “Fresh Air” segment was planned around the theme of healing through humor and the notion of “cancertainment” becoming popular among young patients.

The conversation turned quite serious, though, when Gross asked her guests — writers Iva Skoch and Kairol Rosenthal — about their health insurance.

In short, they said, the hurdles and hassles of dealing with health insurance were so overwhelming they had little time or energy to focus on healing. They had to put their thoughts about having cancer, undergoing treatment, and positive healing, on hold while trying to survive their insurance nightmares.

One ended up rejecting care in the U.S. and seeking cancer treatment in another country – one considered far less advanced than the United States. The other had to muster up super-human strength to fight for her coverage.

Here are some condensed snippets of the interview with Skoch and Rosenthal. It’s worth listening to the entire broadcast — or reading the transcript — to get a sense of what these young women have gone through. And yes, parts of the interview are funny – the parts after they talk about insurance.

Skoch (pictured at right): “I went to the doctor (in New York) and my diagnosis (of colon cancer) was covered. But I’m originally from Prague, which has socialized medicine, and I decided to go and get treatment there, simply because I honestly was not able to deal with all the billing issues.

Just from the first week after being diagnosed, I had a stack of bills about two inches. I constantly dealt with people from insurance companies, trying to figure out what I have to pay, what I don’t have to pay. I was going through this life-changing experience, and it seemed like all I could focus on was these billing issues. So that was ultimately what made me decide to go back to the Czech Republic and get treatment there.

I got great care. It is different than being treated in the U.S., and I think the biggest difference is that it’s a very efficient kind of care. It’s really all business. So I think that was probably the biggest difference, (no) bedside manners.

And I really did not have to wait…because I think everybody felt that I was young, and they needed to push me ahead. So I really did not have to wait any more than I wait when I go to see my doctor in the U.S.

Part of my treatment was taking Avastin, which is a very new drug, and it’s not actually chemo. It’s a bio-based drug that basically starves your tumors from blood supply. In the U.S. a lot of insurance companies don’t want to cover it because it costs tens of thousands of dollars. (In Prague) it was never an issue of cost. I never got a single bill for anything.”

Rosenthal (pictured at right): “I actually had health insurance the day that I was diagnosed (with thyroid cancer). But when I called to get a second opinion, the nurse said, ‘I’m sorry. You don’t have any health insurance.’ And to me, hearing that I had no health insurance was way more startling than even hearing that I had cancer in the first place.

My employer had forgotten to submit my COBRA paperwork… I was leaving a job, and I had filled out all of the paperwork, and I submitted what I needed to submit, but they didn’t submit what they needed to submit. Now, my problem was, because I had been diagnosed with cancer just a week before, I now had a pre-existing condition, so I was not able to go out and obtain my own health insurance.

It was up to me to spend my time on the phone with the COBRA administration and with the privatized company that was administering the COBRA. That’s what I did for the first month after my diagnosis. I was on the phone Monday through Friday, nine to five, haggling with people. And I ended up sort of weasling my way into getting back on to COBRA.

The image that kept coming to mind over and over again is you hear these legends or myths about children who are trapped underneath a car and their moms are just suddenly empowered with this Herculean strength and they’re able to pick up this massive hunk of mental and get their child out from this trapped situation. And I kept thinking, I feel like the child and the mother at the same time and I am just trapped underneath this incredibly complex and suffocating system of health care and I’m trying to save myself, and I have to use my own energy to do it.

I was constantly on the phone, nine to five. I had to present a good case. But it was really exhausting. So when these phones shut down at nighttime, I was a wreck. I mean, I was hysterical. I was crying all of the time. People think that when you are diagnosed with cancer, it’s about healing, taking a bath, lighting candles. I was utterly exhausted, frustrated and completely freaked out that I might die because I don’t have access to health insurance.”

By the time Kairol Rosenthal won her battle with the bureaucrats, her thyroid cancer had spread to 30 lymph nodes. She’s never been in remission. Iva Skoch’s colon cancer is in remission.

Health Access California promotes quality, affordable health care for all Californians.

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