Tuesday, September 1, 2009

Dr. Pheo's musings on health care cost

I usually do not pay much attention to political arguments. In these days, however, I cannot go a single day without hearing discussions on health care or health insurance reform. A lot of discussions, I feel, are not on the really important issues. Today, I'd like to share my thoughts on one of the key issues in health insurance reform: health care cost.

The one thing everyone seems to agree upon is that the health care cost is too high for our society to afford and "we" spend way too much money on health care in America but only to achieve the same levels of health that other developed countries achieve with much less cost. But who are "we"? Am I one of the "we"? Are the readers of this blog some of the "we"? Who are responsible for the high cost in health care? How do we cut down the cost?

I, as a physician, may contribute to the high cost. For example, although I know that the MIBG scan probably does not add much to the localization of pheo if CT or MRI already finds a clear adrenal tumor in a middle-aged patient with high markers, I order the MIBG scan anyway for this patient because I worry about the small possibility that there may be a second pheo somewhere that I may miss otherwise. Although the literature and my own research show that ordering multiple tests for pheo is not necessary, I sometimes do order 2 markers because there is a small chance that there may be a lab error.

As a patient, you may also contribute to the high cost. Yearly follow-up of pheo markers is sufficient after pheo resection; some patients, though, insist on testing every 3 months because they worry about the small chance that they may have a fast-growing pheo. Some patients demand to have an MRI even after CT shows clear results because MRI does have a small advantage over CT in describing the pheo.

All medically justified costs are not waste. But who determines if a test or a treatment is justified? In reality and in theory, the physicians are the ones who eventually determine if a cost is justified. The insurance clerk who declined the coverage of your MRI just acted on the recommendations made by physicians hired by the insurance company. Although physicians have the intellectual capacity to perform this function, the society as a whole has to decide on a few key issues to make physicians exercise their best judgment on cost justification.

1. Do we trust physicians to do this job at the first place? If we don't, who else do we trust?

2. If we trust physicians, how do we make sure that physicians always exercise their best judgment without playing favoritism?

3. What is the maximal acceptable risk? If there is a 1/million chance a pheo may be missed, most reasonable people don't worry about it. What if the chance is 1/1,000, or 1/100, or 1/10?

4. How much do we want to pay for "peace of mind" and how much physical discomfort is intolerable?

5. Who is responsible for the risk? If I do not order an MIBG on a patient who I feel rather sure only has a solitary pheo but it turns out that the patient does have metastasis, whose fault is it? Am I free of blame because I exercised my best judgment?

6. What is the appropriate mechanism to reward physicians so that physicians are motivated both to avoid unnecessary tests and treatments and to use all necessary tests and treatments?

7. Do the answers to the above questions depend on whether a patient pays everything by her/himself, has private insurance, has public insurance, or has no insurance at all?

Our society has to be reasonable and responsible to achieve an efficient, equitable, and satisfying health care system.

Dr. Pheo

22 comments:

  1. I think we shouldn't have to pay until we are fixed/cured. It would push doctors into investing into finding cures instead of pills that just mask the problems.

    I hated, really hated paying for six 131MIBG scans, all coming back negative, because nothing changed my status. I still felt like crap all the time, I still had to take a handfull of pills(which I was paying for as well), and now I was in debt to hospitals and all for nothing. I didn't mind paying for the 123MIBG scan cause it actually found something!

    After the second MIBG scan insurance companies kept denying me to get another one. It took hours on the phone trying to explain to them that I needed one and that my chemical tests were showing that I positively had a pheo.

    I hate money...lol.

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  2. You made a good point. The care of patients with rare diseases has unique challenges. Often the doctor is not familiar with the condition and tends to order unnecessary tests.

    Dr. Pheo

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  3. Interesting points Dr. Pheo. I'm sure there is waste in just about all aspects of healthcare. I think the treating doctors should have final say in treatment for their patients. Who else has better knowledge of the patient and their condition? This also means the doctor would be responsible to tell patients no when they are insisting on tests that are not necessary. I don't think this would be a stretch for most doctors. I get told no all the time. Most recently for genetic testing.

    What really bothers me is the insurance companies spending 30% of my premiums on administrative cost including lobbying law makers not to make changes to the existing broken system.

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  4. We live in Australia and while our health care system is far from perfect, we haven't had to pay for anything because we were advised to go as public patients, nor were we made to wait for treatment for our son.(We also have private health insurance - but we understand that the experienced doctors are in the public system)
    My husband has the SDHB gene as does does four of our five children (the fifth has not been tested yet - so it could be 5 out of 5) Youngest son has metastatic pheo. We saw the genetist last week and since my husband is one of nine children we were wondering if they need to get the genetic tesing done? The genetist said they can if they were concerned - but i am not sure they need to? Should we be suggesting testing to the extended family who are all healthy and well. There has been no family history of previous pheo. Testing would be "free" .... well our tax dollar pays for it - but how far should the net be cast to find those with the SDHB gene? Should our grandchildren be tested if their parents have the gene - if so what age?
    Thanks AusieMum
    PS Our genetist hasn't had anything to do with SDHB gene before

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  5. Obviously, there are no easy answers to the cost of the health care itself. However, the health INSURANCE system, as mentioned above, is, in my opinion, evil. I have given a lot of my money to insurance companies who are now not willing to cover my pheo...so I am broke and have gotten public assistance. The public pays while the health insurance companies make a profit. Study after study has found that health care for profit is less healthy than not-for-profit systems. (I'm specifically thinking of studies of nursing homes, but I have no doubt other health systems are the same).

    I would like to not get the MIBG for environmental reasons, as well as financial...but who can i even have a reasonable conversation about this with?!

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  6. Dear AussieMum,

    The situation you describe is a good example of cost. The guideline is that children and siblings should be tested. In reality, children have a larger chance than siblings to have the mutation (as your husband can be the founder of the mutation). Your husband's siblings can opt to test or not to test but they have to remember that brother with a mutation to cause para.

    Dr. Pheo

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    Replies
    1. More than 4 years have passed since this post. Since this post another of our sons was diagnosed with an inoperable abdominal paraganglioma. My husbands brother was diagnosed with a pheo and mets, and our 11yr old grandson had surgery to remove an abdominal paraganglioma.

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    2. Dear AussieMum,

      Thank you for sharing. Please send them my regards.

      Dr. Pheo

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  7. Hi Dr. Pheo,

    I had a paraganglioma removed in 07 of 03 , The doctor had me scanned every four months , after a yr I asked to be scanned once a yr, reluctantly he agreed, three yrs after my resection I had three new tumors with two new tumors every two months of scans.
    My Boston Dr. said I had two months to two yrs left.
    Well , I found N.I.H. and after a two week study they place me on chemo every three weeks for fourteen months .
    I have no new tumors from that point and all of the other tumors shrank and have not increased in size.
    But as such I am scanned much to my disliking every three months .
    I have a real good attitude and have from day one .
    Thanks .
    Islandbound

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  8. Dear Islandbound,

    Thank you for sharing.

    Dr. Pheo

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  9. Interesting debate. No system is perfect. My personal opinion is that those who can afford it should pay more via taxes and support those less fortunate but socialism isnt popular these days.....
    1. Patients have to trust physicians, just as you have to trust a mechanic not to miss a faulty brake cable. No-one's perfect, even consultants make mistakes but there has to be an element of trust in all relationships. Unfortunately the managers don't trust physicians and simply look at balancing the books rather than the benefit to the patient. We have had to fund raise to pay for the drug the consultant oncologist twice recommended after the management at the health service twice refused to fund it.
    2. Isn't being professional being able to set aside prejudice and base decisions on the facts available?
    3. In pheo terms - as they are so rare anyway - just gaining a diagnosis is a bonus. Any risks after that pale into insignificance.
    4. Has to be the individual's decision. Some people will want to try everything, others will prefer to avoid any intervention. This is more difficult if it is your child with a pheo of course.
    5. Risks have to be shared - ongoing communication between physician & patient is vital.
    6. Training & gaining experience?
    7. No - cost should not come into it. The health of a nation, in fact - the world - should be the priority and those who can afford to should support those who cant.

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  10. Thank you for your thoughtful comments.

    Dr. Pheo

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  11. I am concerned my mother may have a paraganglioma and would like some advice on how to get her the proper evaluation.

    She has many of the symptoms of pheo or para, but has been given a mental health diagnosis.

    Recently, she was evaluated for a pheo by a specialist she had consulted about her high and uncontrollable blood pressure.

    A 24-hr urine catecholamine test showed moderately elevated dopamine, epinephrine and norepinephrine. A subsequent MRI of the abdomen came back clean. (No contrast agent was used.)

    The doctor said case closed. He was dubious from the get-go, but was prepared to authorise an MRI.

    I am still concerned that she could have a paraganglioma somewhere.

    I would like a second opinion, but may have to pay for some tests out of pocket in order to persuade her family doctor (who is also skeptical) that he should refer her to an endocrinologist for a second opinion.

    I am thinking I should do a bunch of those 24-hr urine catecholamine tests thru a private lab (neuroscience?) in order to see if we get more clear-cut results this time around.

    Then I could take those results to her GP and insist on a referral.

    Can anyone advise me on how to proceed? My mother is in the UK, fyi.

    Thanks

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  12. Dear Charlotte,

    I am not familiar with UK's practice. If she were in the US, I would order plasma metanephrines, followed by a clonidine suppression test if needed. My clinical suspicion is not high.

    Dr. Pheo

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  13. Dr. Pheo,

    In the last 6-7 weeks I've showed some but not all symptoms (no headaches, no sweating, no weight loss, etc.) of a pheo. I had blood tests done which showed a few slightly abnormal readings in the two areas of concern when dealing with pheos (potassium and catecholomines). I went in for a CT scan yesterday and am waiting for the results in which I dread might be a pheo. I've had episodes of panic attacks and anxiety in the past but this time it's been coupled with slightly elevated blood pressure. The blood pressure IS hereditary in my family as my dad and his dad both have it, but as a 26-year-old I am concerned. This is all very new for me and I have a lot of questions for you. Please contact me as soon as possible. Thank you.

    Matt
    Age: 26
    Reno, NV
    emceedowell@gmail.com

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  14. Dear Matt,

    Please post your questions here so that other people can read them and the answers. Please do not reveal any private info. You may want to read previous postings which should answer at least some of your questions on pheo.

    Dr. Pheo

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  15. Hi Dr. Pheo. I am wondering how pheo may or may not impact a woman's menstrual cycle? I am 40, and just got back results from bloodwork that would indicate that I am post-menopausal (LH 109.1 - ref 0.0-76.; FSH 41.6 - ref 1.4-18.1). Can pheo "mess" with female hormones? Thank you again for your help.

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  16. Dear rosecp,

    Pheo usually does not mess with reproductive function. The menopausal timing is determined by genetics, nutrition, history of autoimmune disease, or chemo. To be menopausal at 40 is not normal and you have "premature ovarian failure." I suggest you discuss with your gynecologist to see why.

    Dr. Pheo

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  17. Just to note, I was on a 21 day cycle while suffering with my para, a month after it came out it switched to 28 days. (I thought it might be of some interest.) I also don't suffer the pre- and post-menstral migraines since it was removed.

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  18. Thank you, Foxy. The effects of pheo on female reproductive system has not really been addressed clearly. Most female patients with pheo are usually around menopause. I think it will be a great idea to do survey on younger female patients about their experience.

    Dr. Pheo

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  19. To Charlotte (or Dr Pheo - if you can get us in touch)
    I am in the UK, please click on my profile and email me.
    Regards
    Jane

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  20. Here's a "Grand Unification Theory of Healthcare" which attempts to answer some of the philosophical questions you pose regarding healthcare and healthcare costs:

    http://www.yourdoctorinthefamily.com/grandtheory/

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