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Immunoglobulin inaccessible to some disabled by PI

April 25, 2023

For some members of the primary immunodeficiency (PI) community, immunoglobulin (Ig) replacement therapy isn’t a treatment option—and not because they don’t need it. Rather, because they can’t afford it.

Some of the most vulnerable are individuals with PI are under 65, collect Social Security due to a disability, and are insured by Medicare. Though many primary immunodeficiencies are covered under Medicare, the government-subsidized insurance only pays for 80% of medical care, including Ig therapy, leaving the patient to foot the bill for the remaining 20%.

Ig therapy can cost upwards of $10,000 monthly, making the out-of-pocket cost under Medicare more than $2,000 a month. According to the Social Security Administration, in 2019, disabled individuals received an average monthly payment of $1,234, making lifesaving Ig therapy too expensive for many individuals with PI who are disabled.

The primary option available to assist with the 20% of costs not covered by Medicare is Medigap, which is supplemental insurance. However, while Medigap is required by federal law to be offered to those 65 and over, the law does not require states to provide it for those younger than 65. For those who are disabled and under 65, four states provide no Medigap plans, and the remaining states offer some coverage.

2018 Kaiser Family Foundation issue brief, “Medigap Enrollment and Consumer Protections Vary Across States,” outlines the challenges and disparities in access to Medigap plans throughout the U.S. Even if a patient lives in a state with these protections, they can be subject to increased costs due to being disabled, and premiums can be cost-prohibitive. Furthermore, while the Affordable Care Act prohibits private plans from denying access to health insurance due to a preexisting condition, such prohibitions do not apply to Medigap plans. 

IDF recognizes that access to Medigap policies for disabled individuals under the age of 65 on Medicare is a challenge and has included this issue in advocacy efforts.

IDF is beginning efforts to support state and federal legislation to address this issue. H.R. 35, legislation sponsored by U.S. Rep. Lloyd Doggett (D-TX), aims to ensure that those who are under 65 and are on Medicare due to a disability have access to Medigap plans. Currently, the federal legislation has primarily democratic sponsors, which may make it difficult to pass.

States may also introduce legislation to guarantee supplemental plans are offered to everyone on Medicare in the state regardless of their health condition. 

When patients who need Ig therapy aren’t on it because they can’t afford it, ultimately, the outcome is more expensive, said IDF Director of Payor Relations and Policy Stephanie Steele. She pointed out, for example, that the average cost of a hospital stay for pneumonia is $36,000.

“Essentially, it’s costing Medicare more money because patients are having infections that require antibiotics and hospitalizations,” said Steele.