You, Your Medications, and Your Healthcare Insurance

June 1st 2023 | 10 minute read
Anita Wilkerson
So, you’ve completed your diagnostic journey and have been diagnosed with Hereditary Angioedema (HAE). Your doctor has prescribed a treatment protocol and you discover that your healthcare insurance will not cover the cost of the medicine. Now what?

This situation can be all too common for people with a rare disease and their caregivers, but it is not impossible to overcome. Just as you went through a diagnostic journey, the second part will be a care coverage journey. In fact, much of the work has already been done.
The first step is to discover where the problem lies.
Did your company select a bare bones policy that simply does not provide this level of coverage? For example, a ski resort may only furnish its employees with insurance to cover accidental injuries because it is temporary, part-time work and the company assumes that the employee also has insurance from another source. In other instances, the minimal insurance may be a cost-cutting measure taken by the company. If any of these are the situation, the challenge is a labor issue, not an insurance issue, and you need to discuss the situation with Human Resources, your Union, or directly with your employer as appropriate. We will consider how to have this discussion in another blog.

Conversely, after reviewing your policy, you discover that your employer has selected the proper insurance and that insurance company, or the pharmacy benefit manager has rejected coverage. For example the letter you receive might say something to the effect of “…..does not establish medical necessity for this drug. Medical necessity is determined by adherence to accepted standards of medical practice.”

Another approach often used goes something like this: “Your request for [Drug name] has been determined as not medically necessary. Per physician review, current New to Market plan criteria only allows coverage of [Drug] if the patient has had an inadequate treatment response, intolerance, or a contraindication to all of the formulary alternatives." [They usually name an older, less effective drug.] This approach is called a step down in which the patient has to prove, by trial and error, that they cannot take the “preferred” drug. This is a dangerous and cruel process.

To overcome these challenges, you will have to prove Standard of Care or Medical Necessity. By now, you’re probably thinking, “I’m not a medical professional or a scientist; I don’t have the first idea of how to take on an insurance or pharmaceutical company.” Fortunately for you, most of the work has already been done on your behalf. In the coming paragraphs, we will review how to gather the information you will need and then how to prepare your appeal package. If your doctor is interested in assisting, you may not have to write the package yourself. Let’s begin!
1. Know your Diagnoses and Treatment Plan. The very first step is for you to become completely knowledgeable about your diagnosis and your doctor’s approach to treating your symptoms. Generally, this involves an appointment with your doctor to discuss your exact diagnosis, HAE Type I, II, or HAE with Normal C1-Inhibitor (previously Type 3), and possible treatment options, both to prevent an attack and to address an attack once it occurs. Once you have decided on options that will work for you, the next step is to have your physician document the plan in a treatment plan. A treatment plan is an excellent document to keep with you in case of an emergency where you may not be able to speak for yourself. A copy of your labs indicating your HAE diagnosis with your treatment plan is also important. In addition, it can help you prove medical necessity. A treatment plan can look something like the example below.
2. Add Scientific Proof. This is the part that intimidates most people as they are neither a scientist nor a doctor. The gold standard for medical necessity is something called the findings of a medical advisory board (MAB). In 2013, the US HAEA Medical Advisory Board (MAB) published Guidelines for the Management of Hereditary Angioedema and in 2020 the MAB updated and expanded those guidelines to incorporate the latest scientific advances. The 2020 Guidelines are posted online at and can be downloaded by either you or your physician.
3. Write a letter to your insurance company or pharmacy benefits manager. The letter should cite the above pieces of information and request that your physician’s prescription be approved. Be sure to attach the Treatment Plan, your lab results indicating diagnosis, and the findings to your letter and copy your physician. A challenge letter can be generally worded this way:
4. Be persistent. The insurance company may push back. Work closely with your physician and be persistent. Eventually, they will have to recognize the standard of care and grant the request.

Hopefully, you will find this information helpful as you complete your healthcare coverage journey. In future articles, we will discuss how to address the labor issue and what to do if your insurance company continues to deny your request.
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