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Since You Asked: Question & Answer (August 2018)

These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.

Question 1: I have CVID and will be going on Medicare next year. What do I need to know about Medicare coverage, and how is my immunoglobulin (Ig) replacement therapy going to be covered? 
Question 2: My son has a primary immunodeficiency disease and is starting Kindergarten. What can I do to inform the school and his teacher about his illness?


Question: I have CVID and will be going on Medicare next year. What do I need to know about Medicare coverage, and how is my immunoglobulin (Ig) treatment going to be covered? 

Answer: Yes, the fall is open enrollment season for many! Medicare’s open enrollment starts October 15, 2018 and ends on December 7, 2018 for a January 1, 2019 start date.

There are many options when it comes to Medicare coverage, and you will have to do a little investigative work to determine what is going to work best for you. How Ig replacement therapy is covered largely depends on one’s specific diagnosis and their site of care.

With your diagnosis of CVID your Ig therapy will be covered under the traditional Medicare Part B (medical benefit). This is only covered at 80% so you will want to look at getting a supplemental/Medigap plan (Part F or G) to help with the remaining 20%. Many report they have less out-of-pocket cost for their Ig therapy with Part B and the additional Part F or G.

There are Medicare Advantage plans (Part C) you can get. These plans are sold as an “all in one policy” (medical and prescription coverage), and act more like a private insurance. According to Medicare regulations, the managed care plans must provide enrollees with all Part A and Part B benefits. Medicare Advantage plans are not required to provide enrollees the same access to providers that is provided under original Medicare.

The cost for your treatment is dependent upon the plan design. You could have a flat $25 copay, or you could be responsible for a percentage of the cost (co-insurance). Honestly, over the past several years, those with Medicare Advantage plans have reported to IDF that they have a 20-30% coinsurance for treatment! Most opted for the Medicare Advantage plan thinking it acted the same as traditional Medicare Part B and a Medigap plan together. It is important to keep in mind that if you choose an advantage plan, you are not eligible to obtain a secondary policy. Make sure you know the coverage before enrolling!

Additionally, CMS has a new policy for Medicare Advantage plans that allows the option to apply step therapy to Part B drugs that are physician-administered. Step therapy usually requires you to start with the lowest cost option, and then you can “step-up” to higher cost products if there are medical reasons for the change. If you are well established on a product and do not wish to change your treatment plan, you may want to avoid the Part C option, or at least confirm whether the plan will use step therapy.

Since Medicare plans vary from state to state, and even by counties within a state, you need to research what plans you are eligible for. You can contact your State Health Insurance Assistance Program (SHIP) to find trained counselors who can tell you the plans you are eligible for and assist you in finding the answers to your questions regarding coverage. Click here to find your state’s SHIP program contact information.

Make sure you do a thorough plan comparison to determine what will work best for you.

Information to know before purchasing a plan:

  • What is my out-of-pocket maximum?
  • Do I have a deductible?
  • Is my deductible included in the out-of-pocket maximum or is it in addition to the maximum?
  • How is immunoglobulin (Ig) replacement therapy covered?
  • Do I have a coinsurance or a flat co-pay?
  • Do I have options for site of care?
  • Are there restrictions on Ig product?
  • Are there out-of-network benefits?

Once you have the details of your plan options, you can do a thorough comparison of the plans in order to make an informed decision on what will work best for you!


Question: My son has a primary immunodeficiency disease and is starting Kindergarten.  What can I do to inform the school and his teacher about his illness?

Answer: It’s exciting that your son is starting school, but we do understand there is also stress for parents who have a child with a primary immunodeficiency disease (PI).

It is extremely important for parents to establish and maintain a strong, open line of communication with the school, including teachers, administrators, nurses and counselors. These individuals, along with your child’s physicians, play important roles in your child’s health and well-being.

If you have not already done so, contact the principal and request a meeting to discuss your child’s PI. Your physician can contribute to this meeting by providing a letter or other medical documentation to help explain your child’s disease. Let them know that you may want to establish accommodations for you son through a 504 plan or an IEP. 

The main problem that arises for students with a PI is absenteeism due to illness, doctors’ visits and/or scheduled treatments. During the initial meeting with the principal, you can discuss how your child’s absenteeism should be handled, and what further plans need to be implemented.

The other problem for students with PI is potential exposure to certain infectious diseases such as chickenpox, influenza and streptococcal infections. You can ask that you be notified right away if these diseases are occurring in your child’s classroom.

Finally, if your child is receiving intravenous immunoglobulin replacement therapy (IVIG) or subcutaneous immunoglobulin replacement therapy (SCIG), they most likely will not have received all of the required immunizations for school entry. You would need to have your doctor provide a letter justifying why he or she does not need to receive these immunizations.

The IDF School Guide is an incredible resource for parents and school personnel. You can download or order a copy here.

If you have further questions, contact us at 800-296-4433 or use your IDF My Account to access Ask IDF by going to www.primaryimmune.org/my-account. Being prepared and educated about your child’s rights in the school system will help to ensure a successful and fulfilling educational experience for your child!

These answers should not be used as a substitute for professional medical advice. In all cases, patients and caregivers should consult their healthcare providers. Each patient’s condition and treatment are unique.

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