Sample Letter to Insurance Company

Dear Insurance Company Claims Adjuster,

The Malignant Hyperthermia Association of the United States (MHAUS) is a non-profit volunteer organization dedicated to the promotion of optimum care and scientific understanding of MH and related disorders.

MHAUS is a non-profit volunteer organization committed to reducing the morbidity and mortality of Malignant Hyperthermia (MH) by:

improving medical care related to MH;
providing support information for patients; and
improving the scientific understanding and research related to MH.

With this letter we at MHAUS would like to take the opportunity to provide you with information about the diagnostic test for which a muscle biopsy is being requested. This diagnostic test is called the Caffeine Halothane Contracture Test (CHCT) and is considered to be the “gold standard” for the evaluation of a patient’s susceptibility to MH.^1-3 The patient’s muscle is challenged with caffeine and halothane; based upon the muscle’s response to these agents, the patient will be considered susceptible or not susceptible to MH. Importantly, for this test to be performed, a muscle biopsy must first be completed at a specialized testing center.

The completion of the CHCT provides the patient with important information regarding his/her susceptibility to MH:

A patient armed with this vital information now has proof that the wrong type of medication can kill him/her.
If this patient should need to undergo surgery, his/her family and doctors will be aware of his/her true medical condition and a possible death or a long expensive stay in the hospital or ICU can be averted.
Prevention is better than a cure. Once armed with the knowledge resultant from this test, a patient can determine whether his/her present or future children are at risk also.

An explanation about who should undergo testing, as well as details about the procedure follow.

WHO SHOULD BE TESTED?

The CHCT is indicated for anyone who shows any of the signs associated with MH during administration of an anesthetic.

Since MH is a genetic disorder, all members of a family in which MH has occurred must also be considered MH-susceptible and treated accordingly, unless proven negative through the CHCT.

PROCEDURE

I. The Muscle Biopsy:

A muscle sample will be removed from either the vastus lateralis or vastus medialis muscle of the patient. A non-MH-triggering anesthesia will be used for the procedure. This usually involves a block of the lateral femoral cutaneous nerve along with mild sedation. Children will usually receive general anesthesia using a non-triggering agent. The biopsy procedure will be performed on an outpatient basis. Anesthesia and surgical care will be performed according to standard outpatient protocols.

II. The Caffeine Halothane Contracture Test (CHCT):

The CHCT will be performed in accordance with the guidelines developed by the North American Malignant Hyperthermia Registry of MHAUS.³ The test will be initiated as soon as the muscle sample is available. There are currently only a few test centers located in the US. This list is available at www.mhaus.org or upon request.

III. Test Results and Patient Counseling:

The results of the CHCT will be described to the patient in terms of the sensitivity of the patient’s muscle sample to halothane and caffeine in vitro. The patient will be told if he/she is susceptible to MH. The sensitivity of this test is considered to be close to 100%; that is, false negative test results are rare.

The test results will be sent to the North American Malignant Hyperthermia Registry of MHAUS. The results will be explained to the patient and the following topics discussed:

1. known genetic details of MH and newer genetic testing procedures;

2. testing of other family members;

3. clinical implications for future anesthetics in MH positive individuals and their family members; and

4. precautions concerning risks for the MH–susceptible individual in relation to exposure to heat and vigorous exercise.

All patients who had a positive contracture test will be advised to wear a medical identification tag. In addition, the patient will be evaluated to determine whether he/she is a candidate for genetic testing. Currently, the sensitivity of genetic testing is considered to be low; thus, a contracture test is still needed, especially for patients who have undergone genetic testing with either negative results or results of unknown significance.

IV. Blood Samples:

Each patient will be asked to provide a blood sample for future genetic analysis. The North American Malignant Hyperthermia Registry recommends that each testing center attempt to obtain such a sample for each tested patient.

For further information regarding malignant hyperthermia and bibliographic information in relation to this test, please feel free to contact us at 607-674-7901.

Sincerely,

Henry Rosenberg, MD

MHAUS President

References

1. Litman RS, Rosenberg H. Malignant hyperthermia: update on susceptibility testing. JAMA 2005; 293:2918-2924.

2. Rosenberg H, Antognini JF, Muldoon S. Testing for Malignant Hyperthermia. Anesthesiology 2002; 96: 232-7.

3. Allen, GC, Larach MG, Kunselman AR, and The North American Malignant Hyperthermia Registry of MHAUS: The sensitivity and specificity of the caffeine-halothane contracture test: A report from the North American Malignant Hyperthermia Registry. Anesthesiology 1998; 88:579-88.