It's hard enough to tell a patient he or she has cancer. It's worse telling someone they have cancer that we can't cure. But telling someone she has a leukemia that responds well to treatment, but we may not be able to arrange for that treatment, is the hardest thing I ever remember having to tell a patient.
About six weeks ago a thirty-something mother of young children turned up with unsuspected leukemia. I work with a drug research institute, and we were screening her for a study of a new medicine's effect on back pain. Part of the screening of volunteers for the study is blood work, and this lady's blood count showed the leukemia. We repeated the lab test, just to be sure, and then I picked the mind of an oncologist friend who treats leukemia. He told me that what she has responds well to treatment, but the treatment is quite expensive.
When the confirming lab tests were back, I spoke to the lady. She doesn't have health insurance. We had already phoned around looking for a way to get her seen promptly either at the charity clinic at the medical school or by a private doctor who'd see her on Medicaid. When I spoke to her, all we could offer was a letter, copies of her lab tests, and an address where she could apply for Medicaid. A few days later, I thought we'd gotten things arranged well enough that a doctor would see her on a "Medicaid pending" basis.
Last week I learned that was wrong. In fact, when she went to apply she apparently was told by some clerk that she needed more papers of some sort. The clerk also apparently made some derisive reference to "the doctor who said you have leukemia." I suspect the clerk was looking for an excuse to ignore the letter and copies of lab work the lady had brought with her.
Friday I prepared a letter for the lady to send to a US Senator and her state Senator. I usually try to get a patient's Representative in the US House involved in such matters, but this lady's current representative just lost his re-election race so his office was unlikely to be doing much constituent service. (So did her state representative; fortunately her state Senator was re-elected.) I also wrote a letter to the state and US Senators to go with her letter. After introducing her, the text of my letters was:
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[This lady] needs to get started on chemotherapy, SOON. Apparently she needs to qualify for Medicaid and Social Security disability before treatment can start.
It is no exaggeration to say that this is a matter of life and death for this young mother.
Had I failed to refer her to an oncologist promptly for these lab findings, I would very likely have committed malpractice. For her treatment to be further delayed by red tape would be just as reprehensible.
It's hard enough to tell a patient he or she has cancer. It's worse telling someone they have cancer that we can't cure. But telling Mrs. [---] she has a leukemia that responds well to treatment, but we may not be able to arrange for that treatment, is the hardest thing I ever remember having to tell a patient. If that happens again, I'll think hard about moving to someplace that has a more humane health care system.
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It doesn't make me optimistic that Texas legislators are talking about having the state withdraw from the Medicaid program. Hell, our newly re-elected Governor talked about secession during the campaign. (I hope he wasn't serious; as I recall, the last attempt at secession led to the Civil War.) But it would be perfectly constitutional and legal for a state to withdraw from Medicaid.
http://www.nytimes.com/...
If anyone doubts that eliminating Medicaid would lead to unnecessary deaths, I now can give them the name of a young mother who would be an odds-on bet to suffer one of those preventable deaths.
UPDATE: Making the Rec List is like getting on the front page of a major newspaper that is critically edited by peer reviewers. It's my first time, and I'm honored. Now that I've achieved one of my life goals, I'll put my energy into getting publicity for cases like this.
UPDATE #2 -- Good News! Through some combination of private string-pulling and/or political noise-making, the patient has an appointment with an oncologist next week!
I'll post details, probably in a new diary, when they become clear. One hangup seems to have been that somebody wanted to see a pathology report to confirm the diagnosis of leukemia. Now the lady will probably get a bone marrow aspiration and biopsy, and that plus an examination of her blood smear will probably create enough of a pathology report to satisfy any bureaucrat. The blood smear alone probably makes the diagnosis with 95% or better certainty, and for sure means she needs to see a hematologist/oncologist, first to rule out the other rare things that could be masquerading as leukemia, and then to start treatment.
The system may have been stumbling over the Catch-22 type problem that she won't be funded for the oncologist until she has a diagnosis, and she won't have a for-sure diagnosis until she's seen by an oncologist. That kind of trap can fall into place without anyone having evil intent; it shouldn't take an act of Congress to get past such a trap, but we doctors need to be ready to get a patient's Congresscritter involved if that's what it takes.