The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
What is Medicare, and how does it support the primary immunodeficiency community? Nichole Clark, Associate Director of Patient Advocacy at the Immune Deficiency Foundation, addressed that topic on Oct. 1 during an IDF Forum entitled, “Medical Insurance: Navigating Your Access to Care.”
Medicare is a federal health insurance program that offers benefits, some free but most at a cost, to those 65 and older, as well as those who meet specific disability criteria. Depending on the type of plan you choose, you may receive coverage for services such as primary medical care, hospital stays, or prescription drugs. The coverage is divided into Part A, B, C, D, F, and G.
Medicare enrollees must adhere to certain deadlines when choosing to take advantage of health coverage. You must enroll in Medicare during a 7-month period, which includes the three months before you turn 65, the month of your 65th birthday, and the three months after you turn 65, to avoid paying a penalty. If you are already collecting social security at age 65, however, you are automatically enrolled. In order to enroll due to disability, you must collect disability payments for two years before you are eligible to enroll in Medicare.
You may also join, switch, or drop a plan during the open enrollment period, which takes place each year from October 15 to December 7. Coverage starts January 1 of the period after open enrollment. For example, if you joined Medicare during open enrollment this period in 2020, your coverage would begin on January 1, 2021.
“So, what do you have to consider when being covered by Medicare, particularly with immunoglobulin?” asked Ms. Clark. “There are many options available, so investigate to see what will work best for you.”
Some factors to consider with Medicare and immunoglobulin are:
“If you do choose Medicare Advantage Plans, you really need to look at the plan details to see how your Ig is going to be covered,” said Ms. Clark. “Make sure you know the coverage before enrolling.”
As of August 2019, both intravenous immunoglobulin treatment and subcutaneous immunoglobulin treatment offered in the home setting and covered with reduced out-of-pocket costs under Medicare Part B has expanded from five conditions to over two dozen conditions. Click here to see the diagnoses now covered.
“These diagnoses were commonly covered under their regular private health insurance plan, and then they would switch to Medicare, and it wasn’t covered. So, adding these has been a huge benefit to our beneficiaries in our community in allowing them to get less out-of-pocket costs and better coverage for their treatment,” explained Ms. Clark.
IDF’s latest advocacy efforts include working to pass legislation that will continue to provide in-home Ig services through the Medicare IVIG Demonstration. Legislation that allows coverage expires in December 2020. IDF encourages PI community members to sign up for action alerts to send to their representatives, urging them to support the legislation. Click here to sign up for Action Alerts.
In addition to being an advocate for IDF, you must also advocate for yourself in picking the Medicare plan that is right for you. A dependable resource for choosing a plan is the State Health Insurance Assistance Program or SHIP. SHIP provides counseling to Medicare beneficiaries. You can review the specifics of the plans you are eligible for and help you make educated, informed decisions.
Important SHIP tips include:
Click here to find your state’s SHIP contact information.
IDF also has a Patient Insurance Center, accessible at www.primaryimmune.org. All of the information regarding Medicare is explained in the Center, including comparing plans that provide a worksheet to use when reviewing various options.
After choosing a Medicare plan and enrolling, you can find assistance programs to help you with financial needs. The two listed below are at capacity but are placing interested applicants on a waiting list:
In addition, infusion providers, including specialty pharmacies, home healthcare companies, and infusion centers, often offer hardship/assistance programs.
For more information about enrolling in Medicare or if you have questions about Medicare, such as billing issues or finding an appropriate provider, visit Ask IDF or call 800-296-4433.
Click here to watch the full presentation.
Receive news and helpful resources to your cell phone or inbox. You can change or cancel your subscription at any time.
The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
Combined Charity Campaign | CFC# 66309