Amy Fisher, MS
Terri Klein, NPGC
Individuals with MPS and ML and their families often need to call on their care providers to support them in their requests to insurance companies or other service providers for durable medical goods, ongoing therapy services, specialized treatment, testing or procedures, medical and care supplies, and adaptive equipment.
Funding is available for the unique needs of those with an ongoing disability but differs widely between states and between insurance plans. It is not uncommon for an initial request for coverage to be denied and to become jumbled in the appeal process. Therefore, it is best to have your supporting documentation available when the first request for services is submitted. It is most common to have your health care provider write a letter of medical necessity. This person may be your local primary care physician, a specialist, or a therapist. Other individuals involved in the care of an individual with MPS, like a teacher or case manager, may also be very helpful in writing a letter.
Each circumstance is different when asking for a letter of medical necessity, letter of justification, or general letter of support. However, when approaching your care provider to draft supporting documentation for your request, there are several general points that may be helpful.
If you are familiar with another family’s request for a similar item/service, do your research to learn how they were successful. While it may be challenging, investigate any legislation that will support your claim. Make all possible efforts to avoid a last minute request. If you have submitted your request to a covering agency and have been declined, present that paperwork to the person from whom you are requesting a letter. Often, a reason for denial has been stated on that letter and can be specifically countered in a new letter of support.
Determine if your covering agency has a definition of medical necessity stated in their policies. This definition should form the basis and direction for a letter of medical necessity. When making a request for a letter from your health care provider, be clear and concise. Try to provide as much information about your specific request and how your child will benefit from the item/service, and conversely, how lack of a particular item/service will be to their detriment. If possible, obtain a name, direct fax number and address where to send the letter of support, rather than just asking for a general “to whom it may concern” letter.
Everyone involved in the care of a person with a disability should be skilled in writing a letter of medical necessity. Several points are often helpful in successfully drafting a letter of support.
First, the letter should be addressed to a specific person or agent. The heading to the letter should include a name, date of birth, and insurance policy number (if applicable and needed). The body of the letter should be clear, concise, and composed in language appropriate for those with limited medical knowledge. The features of the individual for whom the services are being requested should be briefly detailed, including the relationship between the patient and care provider, current care plan, and prognosis. The importance of obtaining coverage for the item/service for ongoing care and medical management should be stressed. The specific name and cost of the item/service should be detailed. If the request requires out of network care, specify and support the limited availability to meet that need. If possible, explain why alternatives to the request are not optimal. If denial of the request may lead to future medical needs and increased financial burden, explanations of these potential anticipated complications may also be discussed. The name and contact number of the person writing the letter should be included should future contact be needed.
Should a request be denied, be an active advocate in the appeals process, and know your entitlement to understand why your claim was denied. Ask for clarification of the relevant policy provisions, any additional information that would assist in future approval, and the proper procedures for submitting an appeal.
Henninger, Megan. Writing letters of Medical Necessity. 2003. EP Magazine March; 70-72.
Shappell, Healther L and Ellen T. Matloff. 2001. Writing Effective Insurance Justification Letters for Cancer Genetic Testing: A streamlined approach. Journal of Genetic Counseling 10(4): 331-341.
If yo would like to download this fact sheet, click below.