If you do not have health insurance and need assistance paying for therapy, the Immune Deficiency Foundation has a list of organizations that provide financial assistance and support on their insurance page here
IDF has a wealth of resources, but theirs are general resources that apply to patients all over the U.S. This is our guide to health insurance providers in CT.
How Are Coverage Decisions Made?
It can be incredibly frustrating to have to deal with your health insurance company after receiving the shocking news of a diagnosis of a primary immune deficiency for yourself or a loved one. Been there, done that. More than once. If you understand how the process works, it can be a bit easier to navigate.
Q. I just got the diagnosis and my doctor says I have to get immunoglobulin (Ig) therapy, now what?
A. First, take a deep breath. You are not alone on this journey. There are many of us here to help. Your doctor will submit information to the insurance company to get approval for your treatment. Insurance companies themselves don’t usually review the records your doctor submits; they usually send them to another company that provides these review services.
Q. Why do I need a review?
A. Insurance companies require special review, called “prior authorization” for treatments or diagnostic tests that cost a lot of money, such as MRI and Ig therapy.
Q. Who makes these decisions?
A. Insurance companies publish documents called Clinical Policy Bulletins. Some are short, others can be 40 pages or more. These documents identify who is eligible for Ig therapy by diagnosis, what supporting information they require to support the diagnosis, and who is not covered for this treatment.
Clinical policy bulletins (CPB) have references to medical journals, research, guidelines, and other appropriate resources. They are usually comprehensive reviews of the therapy, and are reviewed a few times per year.
Understand that it is a pretty simple process — the reviewer checks your records against the CPB and it either matches up or it does not.
Q. Then why do I have to wait?
A. Unfortunately, the company is not sitting and waiting for a request to pop up in their computer. Your doctor’s request will go in the queue.
But, you may need to stay on top of the process. When I had to change insurance companies, I missed an infusion because my request sat on someone’s desk. Some insurance companies have been known to slow-walk paperwork for approval of expensive therapy, like Ig. I got sick and my husband was so frustrated at the delay that he called an officer of the company. In two hours, my infusion company called to arrange a visit.
Q. Where do the rules comes from?
A. That’s not a real simple answer. It all starts when you or your family member fills out the election form. The services, companies, providers, and drugs that are available to you are actually determined by the employer who chooses the plans that are offered to employees. The employee (and family members if there is a chronic disease in the family) should sit down and review the options (and not the night before!) The IDF link above has a worksheet to help you figure out which plan available will best meet your needs. No plan is perfect. For example, I can manage a high-deductible plan because the company that makes my Ig replacement drug provides a generous co-pay assistance program that takes the sting out of having to hit that deductible each January.
Q. Is there anything to help me navigate this path?
A. Glad you asked! Here is the new Navigating Insurance from the Connecticut Zebras. Just click on the image to download the E-book. It contains an overview of the information insurance companies use to decide on coverage, suggestions on how to keep your material organized, and forms you can use to keep track of your personal information.
Links to Connecticut insurers’ Clinical Policies for coverage are here
If you need help with a denied claim or have questions about your company’s policies, you can contact the Office of the Healthcare Advocate. More information is available on our Helpful Links page