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Writer's pictureThe Rare360 Editorial Team

Vision Services Disparity: How Medicaid’s State-Level Policies Affect the US Rare Disease Community

An image of a person sitting in an optometrist's office, undergoing an eye examination.

Vision impairment affects millions of Americans, and for the rare disease community, this challenge is magnified. According to recent data, more than 12 million adults in the U.S. experience vision impairment—a number expected to double by 2050. Despite the fact that many vision problems can be corrected with glasses or low vision aids, millions of adults, especially those relying on Medicaid, struggle to access the care they need due to fragmented state-by-state coverage. For individuals with rare diseases, many of which have ocular complications, this lack of consistent care can have serious consequences.


A recent study finding published in the Journal of Health Affairs study highlights a troubling disparity in access to vision care for adults enrolled in Medicaid, a gap that can significantly impact individuals with rare diseases.


Understanding Medicaid's Role in Vision Coverage

Medicaid provides vital health coverage to millions of low-income Americans, including adults, children, elderly individuals, and those with disabilities. However, when it comes to vision care, Medicaid's coverage policies for adults vary widely from state to state. While the federal government sets basic guidelines, states have the power to determine specific services, such as eye exams and glasses, for adults.


For children, the situation is different—federal law ensures that Medicaid-enrolled infants, children, and adolescents receive guaranteed vision services, ensuring early detection and management of vision impairments. However, for adults, the law allows states to decide whether to cover routine eye exams, glasses, or low-vision aids. Unfortunately, this has resulted in significant disparities in access to vision care, particularly for those with rare diseases.


A Patchwork of Coverage Across States

A recent analysis of Medicaid data from 2022-2023 highlights just how fragmented adult vision care coverage is across the U.S. Key findings include:

  • In 20 states, Medicaid fee-for-service programs did not cover glasses at all, and in 12 of those states, eye exams were also not covered.

  • Seven states (Arizona, Idaho, New Mexico, Oklahoma, Tennessee, West Virginia, and Wyoming) offered no coverage for exams or glasses under both fee-for-service and managed care policies.

  • Thirty-five states did not cover low vision aids like magnifiers and loupes, which are often essential for people with severe vision impairment.


Even in states where vision care is covered, enrollees often face significant hurdles, such as high copays or restrictive policies that prevent them from accessing the care they need. In fact, two-thirds of states require Medicaid recipients to share the cost of their eye exams and glasses, making it difficult for low-income individuals to follow through on getting necessary vision care.


The Impact on Rare Disease Patients

These coverage gaps are particularly concerning for rare disease patients, many of whom suffer from conditions that can affect their eyesight. Diseases like Stargardt disease, Marfan syndrome, and muscular dystrophy often have ocular manifestations that require regular monitoring. Without access to routine eye care, patients risk irreversible damage to their vision, exacerbating the already complex challenges of managing a rare disease.


For example, early detection of conditions like keratoconus, a progressive corneal disorder, is crucial to prevent severe vision loss. However, in states without coverage for routine eye exams, rare disease patients may go undiagnosed, leading to long-term complications that could have been prevented with timely intervention.


Financial Barriers to Vision Care

For many low-income adults, including those with rare diseases, the cost of vision care can be prohibitive. An eye exam and a pair of glasses can cost nearly $485, which is a significant portion of the monthly income for someone living at or below the federal poverty level. This financial strain forces many individuals to forgo necessary care, leading to worse health outcomes.


Moreover, the consequences of untreated vision impairment go beyond poor eyesight. Research shows that vision impairment can increase the risk of falls, fractures, social isolation, depression, and cognitive decline. For rare disease patients, these additional health risks can severely impact their quality of life and overall well-being.


The Need for Policy Reforms

Medicaid’s fragmented approach to vision care not only creates barriers for millions of adults but also places rare disease patients in a particularly vulnerable position. Addressing these disparities is crucial to improving health outcomes and reducing long-term healthcare costs. Expanding Medicaid’s coverage for routine eye exams, glasses, and low vision aids would ensure that individuals with rare diseases receive the care they need to maintain their vision and overall health.


Conclusion

The lack of consistent Medicaid coverage for vision care services underscores a broader issue of healthcare inequality, especially for rare disease patients who already face a lot of medical challenges. As policymakers consider reforms to Medicaid, they must prioritize expanding access to vision care. By doing so, they can improve the quality of life for millions of Americans and reduce the financial burden of untreated vision impairment.


Vision care is not a luxury—it’s a basic healthcare need, particularly for individuals with rare diseases. Ensuring that everyone, regardless of where they live, can access the eye care they need is a vital step toward a more equitable healthcare system.


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