You are here

Since 2014, Medicare beneficiaries with primary immunodeficiencies (PI) have had access to in-home intravenous immunoglobulin (IVIG) therapy through enrollment in the Medicare IVIG Access Demonstration. First authorized by an act of Congress in 2012, and extended in 2017, this demonstration is set to end on December 31, 2020. In order to ensure that beneficiaries with PI continue to have access to in-home IVIG, the Immune Deficiency Foundation (IDF) is advocating for Congress to take steps to extend the current Demonstration and to create a permanent Medicare benefit for in-home IVIG by 2022.

If you are currently enrolled in the IVIG demonstration or if you are receiving IVIG at home through private insurance, then IDF would like to hear your story to possibly share with legislators about the value of in-home IVIG for individuals with PI.

If you are able, please let us know:

  • Why did you make the decision to receive IVIG at home and what do you like about it? If you previously received IVIG in a healthcare facility, talk about the difference getting it at home has made.
  • Do you or did you have private insurance that covered IVIG at home? Please share any experience you have had transitioning from private insurance to Medicare with regard to home IVIG therapy.
  • When the demo ends, what is your plan for receiving Ig therapy and what concerns do you have related to this? Options include switching to SCIG, receiving IVIG at an infusion center or hospital, stopping treatment. 
  • What burdens have you experienced or do you anticipate if you need to switch your treatment, treatment setting, or mode of treatment? This could include burdensome travel to an infusion center, exposure to germs by others, added out-of-pocket expenses.

If you already have experience recording videos, simply record your video, click here to upload, and send us your video via our WeTransfer upload service. Below are some helpful recording tips. If you would prefer to share your story in writing, you can do so here.

Tips When Creating a Video

  • Get the Wide Shot - If you are filming with your phone, be sure to turn your phone horizontally. This will provide a better shot than a limited vertical view.
  • Bright Light Makes Everything Better - If you have a quiet place outdoors, outdoor lighting can be great for your video. If you can only record the video inside, try to be around windows or in a room with a lot of light. Bright light usually makes the video quality better.
  • Keep Your Phone Steady - It’s important to make sure your video is not shaky, so place your phone on a stand or prop it up onto something steady while you’re recording.
  • Finishing up Your Video - When you’re finished, click here to send your video to us via our WeTransfer upload service.