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.
Navigating enrollment for Medicare coverage is a process that requires time, and a thorough understanding of the options, with a particular focus on access to providers, medical services, and drugs. For everyone turning 65, including those with primary immunodeficiency (PI), choices must be made whether to use original Medicare or Medicare Advantage as their health insurance. Which type to choose is a decision that should be reached after examining the benefits and drawbacks of each plan.
Keep in mind that original Medicare provides more options because Medicare Advantage plans are run by private insurers and have some of the same restrictions/limitations as other private insurance plans, in areas like formularies and networks.
Original Medicare is a federal health insurance program that offers benefits, some free but most at a cost, to those 65 and older and to those under 65 who meet specific disability criteria. Depending on your plan type, you may receive coverage for services such as primary medical care, hospital stays, or prescription drugs. The coverage is divided into Parts A, B, C, and D, with other letters assigned to Medigap, or supplemental plans.
Most people turning 65 should enroll in original Medicare Part A, even if they receive health insurance from an employer because most don’t pay a premium for the plan. Part A offers coverage for hospitalization, skilled nursing facilities, hospice care, and some home health care. Part B is optional, but most people enrolled in Part A also choose Part B. Part B covers doctor’s office visits, preventive care, scans and tests, medical equipment, and other medically necessary services, including immunoglobulin (Ig) replacement therapy for certain PIs. Enrollees can also enroll in Part D, which covers prescription drugs. Parts B and D, and sometimes A, require premiums.
Because Part B of original Medicare covers only 80% of the cost of covered services (other than preventative services, which are covered at 100%), enrollees often pay a premium to have a Medigap policy, or supplemental plan, cover the remaining 20%. The Medigap policies, sold by private insurance companies, range in price. Having this supplemental insurance is important for Ig coverage, which is costly. Medigap is only for those who don’t have other insurance through an employer or retirement plan to cover the 20%.
In contrast, Medicare Advantage, also known as Medicare Part C, is an option where enrollees choose from private insurance plans for their healthcare needs. Types of Medicare Advantage Plans include Health Maintenance Organizations (HMOs), and Preferred Provider Organizations (PPOs). To join a Medicare Advantage Plan, participants must enroll in Medicare Parts A and B as an administrative step. Premiums vary by plan.
When it comes to choosing a plan that best suits the needs of a person diagnosed with PI, it’s important to remember that, unlike original Medicare, Medicare Advantage plans may apply different rules, costs, and restrictions. Consider these differences between original Medicare and Medicare Advantage:
Immune Deficiency Foundation (IDF) Community Resource Navigator Angela Kotarski said that, in her opinion, original Medicare with a drug plan and a supplemental plan, best fits the needs of most people with PI. People with chronic conditions require the flexibility offered by original Medicare.
“While the Medicare Advantage plans are good for some people, they do pose a lot of restrictions,” she said.
Kotarski also stressed that whether a person chooses original Medicare or Medicare Advantage, they must submit the results of all testing for PI, such as a pneumococcal vaccine challenge, low IgG levels, and a history of recurrent infections results and other diagnostic evaluations, to the plan administrators. Otherwise, enrollees may have to pay out-of-pocket for the health care services or go off of therapy to have these tests redone.
“It’s extremely important that that documentation is on file,” said Kotarski.
The IDF Walk for Primary Immunodeficiency (PI) is an opportunity for communities across the U.S. to raise both funds and awareness for PI. At each event, you can form a team, join a team, register as an individual walker, or make a contribution.
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