Here’s the good news:  Heather does not have SPTCL.

Here’s the bad news:  Heather does have another type of T-cell lymphoma called CGD-TCL, cutaneous gamma-delta t-cell lymphoma.  Also written with Greek letters:  cutaneous γ/δ T-cell lymphoma

To say that both Heather and I were shocked is an understatement.  If you read my post a few weeks ago, you know that she contacted me when she had a lump biopsied, and was told she had SPTCL (subcutaneous panniculitis-like T-cell lymphoma.)  Thing is — like in my case four years ago — she has no other symptoms.  Further, since then she has had additional tests, including a CT scan that shows no abnormalities, and blood work that is clear.  So yes — shocked.

And, as if it’s not bad enough that she’s been dealt this blow — listen to this: when a review from the NIH is requested, the protocol is for it to be submitted by her primary care doctor or her oncologist, then for the NIH to report back to the doctor who requested the review.  That doctor is then responsible for getting the results back to Heather.

Heather’s biopsy was submitted to Dr. Jaffe at the NIH in early June. When she hadn’t heard anything back by yesterday, almost a month later, she sent an email to Dr. Jaffe just asking when she could expect the results.

Turns out the review was completed June 18 — two weeks ago! — and returned to Heather’s doctor…. and yet no one — not the primary care doctor OR the oncologist has contacted Heather with the results.  Still.  Today.  Not a single phone call.  No one!

The reason Heather knows about her diagnosis is because Dr. Jaffe was considerate enough to attach it as a pdf to her reply email.

So we’ve learned a couple of lessons from Heather’s odyssey so far…. first, to be assertive about reviewing a diagnosis.  Yes — it turns out Heather was misdiagnosed, too — although in this case, she does seem to have lymphoma.  But if she had not pursued a review of her diagnosis, she would be treated for the wrong lymphoma.  Then what?

Second — when you don’t get test results back — go looking for them!  And don’t take no for an answer.  You can be polite, but you need to be assertive.  Had Heather not gotten in touch with Dr. Jaffe, she would still be waiting for the word.  And as far as her doctors are concerned — she’s still waiting!  (I’m having trouble stopping myself from calling these medical bozos what they are.  Oh.  Did I call them that?)

CGD-TCL is just as rare as SPTCL, no doubt about it.  It will be impossible to find a doctor to treat it who has experience with it.  I’ve suggested to Heather that she find a doctor who is willing to research and learn alongside her — a true partner for this unusual disease.  Easier said than done, I’m sure!  But what a blessing if she can actually find one.

If you’d like to follow Heather’s odyssey, I’ll keep you updated here… or better yet…. check out her new blog.  Then, keep Heather and her family in your prayers.

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Notice that the title doesn’t say “can’t Help You.” It says “won’t.” There’s a big difference.

CPT codes are the stuff a doctor’s practice is made from. I know — you thought patients were the basis for a physician practice, but no, CPT codes are more important than patients — even though I can guarantee that most doctors wish that was not true.

CPT Codes, Current Procedural Terminology Codes, are all those little numbers that show up on the bill you are handed as you walk out of the doctor’s office. They are supposed to represent every type of task performed in medicine — from a basic check-up, to diagnosis, to administering a shot, to giving a medical test, to the levels of that test, to surgeries, to anything at all. They are developed by the AMA, the American Medical Association, and are intended to be the standard by which all doctors get paid, and all insurance reimburses. The codes are revised regularly, and new codes are developed by an editorial board that represents the membership of the AMA.

Among the most frustrated of patients I hear from are those who can’t get diagnosed. There can be a number of reasons for not getting a diagnosis, but one of the big problems is that patients can’t find one central person to review all the evidence. They are sent from specialist to specialist, each looks at his own tests and results, but they don’t look at results from other doctors, except maybe the one who referred the patient.

I call this daisy-chaining. Each doctor represents a link to the answer. Each link might look at the information from the link it is connected to. But none of those links review information from links they are not directly connected to.

So what does that have to do with CPT codes? Plenty. Because the reason they won’t look at the other records is because there is no code for doing so — therefore — there is no way they can get paid (reimbursed by Medicare or insurance) to look at the big picture for a patient.

Why not? I have theories, and they all relate to money, of course. The AMA represents the doctors. One would think that if doctors wanted to do this kind of big picture diagnosing, or review of other’s notes and reports, then the AMA would develop a code for it, right? So theory #1 is that doctors don’t want to be doing so. They don’t want to be responsible for that particular task.

Theory #2 is that why would the AMA waste its time if insurance won’t cover the cost anyway? And that’s actually the root of today’s blog. A review of the new codes for 2008 shows that codes have now been developed for doctors who take phone calls or email from patients. However, the report includes a caveat that says Medicare and insurance companies won’t be reimbursing for them anyway.

So that explains why your doctor won’t do what you wish he would do — take a comprehensive look at all your health challenges, and help you get diagnosed even after seeing a slew of specialists. They wish they could — but they can’t. If they can’t get paid, they can’t stay in business. If they aren’t in business, then what good does it do for anyone?

I do give a bit of credit to the AMA for at least giving their new codes a shot — it’s a start. Many more are needed.

But what’s really needed is someone to kick the payers in the backside. They work for US, afterall — we pay taxes and we pay premiums. So why aren’t they held accountable to reimburse for all those codes?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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	………………………………………………………………..
	Join Trisha in the Patient Empowerment Forum at About.com
	………………………………………………………………..
	Or link here to empower yourself at EveryPatientsAdvocate.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Notice that the title doesn’t say “can’t Help You.” It says “won’t.” There’s a big difference.

CPT codes are the stuff a doctor’s practice is made from. I know — you thought patients were the basis for a physician practice, but no, CPT codes are more important than patients — even though I can guarantee that most doctors wish that was not true.

CPT Codes, Current Procedural Terminology Codes, are all those little numbers that show up on the bill you are handed as you walk out of the doctor’s office. They are supposed to represent every type of task performed in medicine — from a basic check-up, to diagnosis, to administering a shot, to giving a medical test, to the levels of that test, to surgeries, to anything at all. They are developed by the AMA, the American Medical Association, and are intended to be the standard by which all doctors get paid, and all insurance reimburses. The codes are revised regularly, and new codes are developed by an editorial board that represents the membership of the AMA.

Among the most frustrated of patients I hear from are those who can’t get diagnosed. There can be a number of reasons for not getting a diagnosis, but one of the big problems is that patients can’t find one central person to review all the evidence. They are sent from specialist to specialist, each looks at his own tests and results, but they don’t look at results from other doctors, except maybe the one who referred the patient.

I call this daisy-chaining. Each doctor represents a link to the answer. Each link might look at the information from the link it is connected to. But none of those links review information from links they are not directly connected to.

So what does that have to do with CPT codes? Plenty. Because the reason they won’t look at the other records is because there is no code for doing so — therefore — there is no way they can get paid (reimbursed by Medicare or insurance) to look at the big picture for a patient.

Why not? I have theories, and they all relate to money, of course. The AMA represents the doctors. One would think that if doctors wanted to do this kind of big picture diagnosing, or review of other’s notes and reports, then the AMA would develop a code for it, right? So theory #1 is that doctors don’t want to be doing so. They don’t want to be responsible for that particular task.

Theory #2 is that why would the AMA waste its time if insurance won’t cover the cost anyway? And that’s actually the root of today’s blog. A review of the new codes for 2008 shows that codes have now been developed for doctors who take phone calls or email from patients. However, the report includes a caveat that says Medicare and insurance companies won’t be reimbursing for them anyway.

So that explains why your doctor won’t do what you wish he would do — take a comprehensive look at all your health challenges, and help you get diagnosed even after seeing a slew of specialists. They wish they could — but they can’t. If they can’t get paid, they can’t stay in business. If they aren’t in business, then what good does it do for anyone?

I do give a bit of credit to the AMA for at least giving their new codes a shot — it’s a start. Many more are needed.

But what’s really needed is someone to kick the payers in the backside. They work for US, afterall — we pay taxes and we pay premiums. So why aren’t they held accountable to reimburse for all those codes?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	………………………………………………………………..
	Join Trisha in the Patient Empowerment Forum at About.com
	………………………………………………………………..
	Or link here to empower yourself at EveryPatientsAdvocate.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I learned this week that a loved one who has been battling cancer for many years was encouraged to sign up for an online personal health record (PHR) called Caring 4 Cancer. It’s a perfect example of the kind of PHR that I think can be dangerous for patients because there is no privacy.

Even their privacy statement (a misnomer — it should be called a No Privacy Statement) tells you that they are not required to follow HIPAA regulations. And I love this: the mission statement is this: “increase efficiencies for Physicians, Patients, Pharmaceutical companies, and Payers.” Uh-huh. Exactly what efficiencies does this take care of for patients? The efficiency of stripping them of their privacy?

I actually spent quite a bit of time on their website. There is some excellent information there — and I don’t discourage anyone from using the website to find articles or to use the message boards. I DO discourage you from sharing any information that can identify you personally — so where they ask for your mailing address or phone number or — ? — don’t do it! Make up some bogus information and set up an email address through some other means beside your main email address.

Yes, there is plenty of advertising — to your best ability, ignore it if you can. That’s the price of a “free” online application.

Here’s the part that gets me. Evidently there was someone right there in the oncologist’s office to encourage my loved one to sign up for the program….

As you know well in every other aspect of your life, there is no such thing as a free lunch. And thus it is true here, too. Only in this case, it could come at the cost of purchasing health or life insurance in the future, spam in your email box, junk in your postal mail box, or — who knows what they’ll dream up next?

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