For the past couple of years I’ve been following the story of Jeannine. We belong to the same online discussion group. Jeannine is in her late 30s, lives in Los Angeles and works as a medical records transcriptionist. Five years ago she was diagnosed with marginal zone lymphoma in one of her salivary glands. It’s slow-growing and was treated in 2004 with radiation.
A few months ago, problems started to develop with her other salivary gland. For most people, this would mean a visit to the doctor, a referral to an oncologist and some diagnostic work such as a PET/CT scan and a biopsy.
Not for Jeannine, because she’s been uninsured for the past four years.
It has truly been eye-opening to watch her perspective unfold. When I read her posts (she doesn’t post often, perhaps only once or twice a month, and there’s no reason to think she’s a fake or an Internet troll), the strongest impression I get is of someone trapped in a corner with no way out. Here’s something she posted earlier this year, worrying about whether she’d be able to pay out of pocket for a PET/CT scan:
My CT/PET in 2005 while I had insurance was about $5,000. Now I don’t have enough on my credit cards to pay that, will they allow me to make a deposit of say $100 or so and bill me for the rest? Or will they demand full payment up front before they’ll even do the scan?
She ended up putting the cost, around $2,500, on her mother’s credit card. And she had to make the full payment up front.
More recently she’s been having problems with her teeth, at least partially due to the radiation to her neck and jaw. She writes, "I consulted with 3 dentists here in LA and none will see me pro bono and they had no connections or solutions… I am completely tapped as far as credit."
There’s sometimes an assumption that the uninsured either aren’t trying hard enough to find coverage or just don’t want to pay for it. What I’ve been learning from Jeannine’s story is that even when help is available, it often comes with eligibility guidelines and many people simply don’t qualify. Jeannine writes that she’s single and child-free and earns about $20,000 a year. "I apparently do not qualify for anything at all," she writes. "I am stuck in the middle. The poverty level in CA is $14,500 a year."
If she lived in Minnesota, she might be a candidate for MinnesotaCare, the state’s subsidized program for the uninsured. But she wouldn’t automatically be eligible; she would have to live in Minnesota for a minimum of six months and be uninsured for at least four months, and she couldn’t work for an employer who offered health insurance and covered 50 percent or more of the premium. She might also be a candidate for the Minnesota Comprehensive Health Association, the state’s high-risk pool for people who are otherwise uninsurable. Here again, however, she’d have to qualify. And state laws allow MCHA to charge a higher premium than the rest of the marketplace – a premium that many people might not be able to afford.
Even these types of programs for the hard-to-insure are not a sure bet. Many of them in fact are under fire, often because of runaway costs. TennCare, for instance, was at one time lauded for helping Tennessee achieve nearly universal coverage, but the state eventually had to rein in the program and cut people from the rolls, leaving them uninsured once more.
Jeannine has tried to buy health insurance on her own, but because of her health history she’s either turned down or quoted a price there’s no way she can afford. She’s looked into the possibility of joining a clinical trial but there’s nothing at this point for which she’s eligible. Someone pointed her in the direction of a nonprofit cancer organization that offered financial support in the form of a one-time check for… $150. No, there is not a missing zero or two in that figure.
Although we’d like to think that nonprofits and charity organizations are helping to meet some of the needs of the uninsured, the reality is that they’re overwhelmed with demand. A couple of months ago Jeannine attempted to get into a free eight-day clinic being held in Los Angeles for the uninsured. She reports:
I waited in line for many hours before being told they had reached their max amount of people that they could help and was turned away – I only had one day off that week to do this, yet the demand was so great that I was too late, and this was only on day 2 of the event. They had already reached their full capacity, they came out and told everyone they could wait, but the likelihood of someone not showing up was probably zero, so don’t waste your time.
There’s a belief that the uninsured are clogging up emergency rooms across the United States because ERs are one of the few places where they won’t be turned away. In reality, they’re not among the majority of emergency-room users; the most recent estimate puts those without insurance at about 20 percent of all emergency-room patients. Most of the time they aren’t using the emergency room as a substitute for regular medical care; usually they’re there because a chronic or non-urgent problem has gone unattended and has mushroomed into something acute.
I think the biggest lesson I’ve learned from Jeannine is how it feels to be uninsured:
… I am holding off far too long for medical care because of not just the fear of large bills but the absolutely unbelievable feeling of shame that comes attached to it. The looks and reactions I get are that somehow it is my fault, that I must have been irresponsible and somehow I deserve to be uninsured.
She has been MIA from the discussion group for a couple of weeks so I don’t know right now how she’s faring. She seems smart and savvy, and I can’t help wondering how someone could fall so completely through the safety net. One of these days her cancer will likely progress to the point of needing treatment, and I have no idea how she’ll be able to manage it.