The Intersection of Age, rare Disease, and Healthcare Access

The saying goes, age is just a number. However, in the complex world of rare and chronic diseases, youth can present unexpected challenges, particularly when navigating the healthcare system. A 41-year-old aHUS patient’s recent experience transferring medical insurance to Florida underscores this reality, revealing potential age-related biases and systemic inefficiencies.

Access to healthcare is defined as the timely use of personal health services to achieve the best health outcomes [[3]]. But what happens when age becomes a barrier to that access?

The Insurance Transfer Turmoil

The patient’s attempt to transfer medical insurance has been fraught with complications. What seemed like a resolved issue quickly unraveled when prescriptions for aHUS medications incurred full price charges, exceeding $200 for just two drugs. The root cause? A denial of the Medicare transfer request due to allegedly invalid Medicaid information.

The patient previously discussed the benefits of dual enrollment (Medicare and Medicaid) [previous column]. However, Florida’s stipulations present a hurdle: Medicaid coverage is conditional, contingent on monthly out-of-pocket medical expenses exceeding $1,500. While the patient’s expensive aHUS medication ensures this threshold is consistently met, the requirement to submit medical bills monthly adds administrative burden and uncertainty.

Department of Children and Families to the Rescue?

Seeking clarification, the patient contacted Florida’s Department of Children and Families (DCF). The conditional Medicaid coverage jeopardized vital benefits, including prescription assistance, a free gym membership, and utilities assistance. Without these, affording essential medications becomes impossible. Consider the stakes:

• $200 for blood pressure medications
• $27,000 for Soliris (eculizumab) infusion every two days

While Medicare covers 80% of Soliris costs, Medicaid typically covers the remaining 20%. Though, without active coverage, the patient faces a meaningful financial burden.

Fortunately, the DCF representative identified critical errors: the Medicare information was missing from the system, and the income was incorrectly listed as Supplemental Security Income (SSI) instead of Social Security Disability Insurance (SSDI).

The Age Factor: Assumptions and Inconsistencies

These errors are not isolated incidents. The patient, diagnosed with aHUS at 36, frequently encounters age-related assumptions in healthcare settings. I’m almost always the youngest person at the infusion centers where I receive Soliris. I always get strange looks from the older patients when I sign in, or from the pharmacist when I’m picking up my medicine. I’ve even been asked who I’m there to pick up — the assumption being that I’m not a patient.

The age disparity between the patient and the typical Medicare recipient (65) often leads to confusion. So when I tell someone my Medicare information, they usually ask, “Do you mean Medicaid?” I have to explain, “No, Medicare is my primary coverage and Medicaid is my secondary.” I’ve also had to correct people that I have SSDI, not SSI.

These interactions highlight a potential for ageism in healthcare, where assumptions based on age can lead to errors and inconsistencies in treatment and coverage.

Health equity is a commonly asserted goal of health systems.However, there is a limited understanding on how best to promote equity as a part of health system reform initiatives.

[2]

Income vs. eligibility: A Mismatch?

Despite receiving Social Security Disability Insurance (SSDI), a fixed income source, the patient has repeatedly been told that their income exceeds Medicaid eligibility requirements. Though, the DCF representative clarified that, with four people in the household, the income cap for Medicaid is over $3,200, exceeding the patient’s disability income.

This discrepancy underscores the complexities of navigating income-based assistance programs and the potential for misinformation to create barriers to care.

The Ongoing Saga: Patience Required

The patient’s experience highlights the challenges faced by young adults with rare diseases in accessing affordable healthcare. One would think that being young is great. But my young age seems to lead to awkward conversations and inconsistencies in my healthcare. Resolving the insurance issues is crucial for accessing essential blood pressure medication. As the insurance saga continues, patience remains a vital asset.

The pursuit of global health coverage, where healthcare services are fair and thorough [[1]], remains a critical goal. Addressing systemic errors and age-related biases is essential to ensure equitable access for all.