Mary Shomon's Letter to Dr. Bill Law of the AACE, January 13, 2006 from Mary Shomon, Your Guide to Thyroid Disease

This letter details my concerns about the AACE's "Target Your Numbers" campaign for January 2006's Thyroid Awareness Month. You can download a copy of this letter in PDF format as well.

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Mary J. Shomon
Patient Advocate, Author
January 13, 2006

Bill Law Jr., MD
President
American Association of Clinical Endocrinologists
1000 Riverside Ave., Suite 205
Jacksonville, FL 32204
Fax: (904) 353-8185


Dear Dr. Law,

I remain hopeful that you and AACE will be responsive to the thyroid patient community. So, again, on behalf of that community, I am writing to call to your attention to some serious concerns regarding your "Target Your Numbers" campaign marking 2006's Thyroid Awareness Month, and to present some questions that are crucial to responsible thyroid patient care.

My concerns are also highlighted in this week's editorial, located online at: http://thyroid.about.com/od/publicawarenessoutreach/a/aace2006problem.htm.

In my decade working as a thyroid patient advocate, I have always felt it was essential that patients be treated as people, NOT as lab values or "numbers." Laboratory tests are not an endpoint -- they are just one aspect of a skillful thyroid diagnosis. Every successful, patient-oriented thyroid expert I know -- and I define success not as the ability to achieve euthyroidism in patients, but to achieve satisfied, healthy, happy patients -- treats test results as part of a comprehensive diagnostic process that includes a thorough clinical examination, detailed patient history, and careful evaluation of symptoms.

My concern is that your "Target Your Numbers" theme is pointing practitioners in the other direction -- urging that the highest value be placed on the numbers, rather than the skill of practitioners, the art of medicine, and the experiences, symptoms and history of patients.

It would seem that this 2006 "Target Your Numbers" campaign is also "campaigning" endocrinologists out of a job. Because, if diagnosing and treating thyroid disease is as simple as "targeting the numbers," as AACE says, why would a thyroid patient ever need to see an endocrinologist? Any family doctor, GP or physician's assistant -- or even a computer program, for that matter -- can spit out a diagnosis and prescription slip based solely on numbers on a lab report. Years of specialized training are irrelevant if it all comes down to the result of a TSH test.
What is most disturbing about the campaign is that your members do not even agree on the "numbers" you are so eager for patients to target.

According to the January 2006 AACE press release, "The optimal goal TSH level for patients on treatment ranges between 0.3 to 3.0 mIU/L."

What it not mentioned in your campaign, however, is that laboratories in the U.S. are still using the normal range of 0.5 to 5.0. The laboratories have not adopted the "new" range as of early 2006. That means...

You have among your members endocrinologists who continue to follow the old range, diagnosing and treating according to the TSH normal range of 0.5 to 5.0. The laboratories also continue to use this older range for testing and lab reports.

You also have among your members endocrinologists who believe that doctors should follow this newer, narrower normal TSH range of 0.3 to 3.0.

And there are legions of family practice doctors, and others who are not thyroid specialists who simply haven't heard of the new range, and since labs aren't flagging results as abnormal, these doctors just don't know any better.

In failing to mention this major dichotomy in your membership, and the nearly four-year battle between two opposing camps in your own community, AACE is doing a huge disservice to patients.

The implications of the "old range" vs. the "new range" are staggering.

One 2005 study found that if the upper portion of the normal range was lowered to 3.0, approximately 20% of the population are hypothyroid. That means 59 million people in the U.S. are hypothyroid, and the vast majority of them undiagnosed.

How many of those millions of people are going to doctors who don't recognize the new range, and therefore, would never diagnose or treat them?

If we're going to take your 2006 campaign to heart and "target our numbers," AACE first needs to answer some questions. In fact, there are four questions AACE should target -- questions, whose answers will have a critical impact on the health of millions of Americans!

1. Why hasn't AACE updated its Clinical Practice Guidelines for thyroid disease since 2002, in particular, given the importance of including these new TSH levels for diagnosis?
2. What is AACE doing to get America's laboratories, HMOs and insurance companies to adopt the 0.3 to 3.0 TSH normal range?
3. What is AACE going to do about the thousands of doctors and endocrinologists who openly refuse to practice according to the new range?
4. How do you propose patients get the proper diagnosis and treatment they deserve if their doctors refuse to follow the new recommended guidelines, the labs aren't flagging results as abnormal, and/or HMOs and insurance companies are refusing to treat or pay for treatment for thyroid levels within the 0.5 to 5.0 TSH range?

And after you answer these four questions, I'd really appreciate it if you would answer the still unanswered, and still important questions in my letter of November 25, 2005. Because, despite assurances by your PR staff that you planned to respond, no response has been sent. I can only assume that, after waiting for two months, you do not intend to respond. I'm particularly disappointed, as AACE wants to be seen as a credible source of information. Yet, you have made a number of public assertions about thyroid diagnosis and treatment, but when questioned and asked to provide "solid scientific evidence" to back your opinions and assertions, AACE has so far been unwilling and unable to do so. Naturally, this is rapidly eroding AACE's credibility as a professional organization with the patient community.

As I put together my annual "Thyroid Cheers and Jeers" recap of thyroid news of 2005 and disseminate this to the national media as part of Thyroid Awareness Month activities, I regret that I will have to highlight AACE's inability to stand behind its statements and provide "solid scientific evidence" to support its public positions.

I hope that moving forward you will rethink this position, and make the right decision to answer patient questions, and provide information and scientific evidence that will support your opinions and help restore your credibility with patients.

Sincerely,

Mary J. Shomon
Patient Advocate, Author