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The Overlooked Crisis: How Rare Eye Disease Patients Are Left in the Dark

Writer's picture: The Rare360 Editorial TeamThe Rare360 Editorial Team
An image of a young child, around 6-8 years old, sitting in an optometrist's chair during an eye exam. The child is wearing a small pair of trial frames while looking straight ahead, as the optometrist prepares to check their vision.

Routine eye care is often dismissed as a luxury or an elective service, but for millions of U.S. adults relying on Medicaid, the absence of this coverage can have profound, long-term health implications. This gap is particularly alarming for individuals living with rare eye diseases who rely on consistent, specialized eye exams to diagnose, and once diagnosed, prevent the progression of their conditions and safeguard their vision. Medicaid, a vital program serving over 90 million Americans, frequently excludes routine eye care from its benefits for adults, leaving many without access to essential services that could preserve or even enhance their vision.


While most Medicaid enrollees do have some form of coverage for eye exams, a staggering 6.5 million adults live in states where comprehensive eye care is not covered, and approximately 14.6 million lack access to prescription glasses. Recent findings published in Health Affairs underscore the urgent need for policy reforms, especially as vision impairment affects over 12 million Americans aged 40 and older—a figure that is projected to double by 2050. The omission of routine eye care coverage represents not only a public health issue but also a growing crisis for individuals with rare eye conditions who face preventable vision loss due to these systemic barriers.


The Glaring Gap in Medicaid Coverage

Despite Medicaid’s comprehensive scope in covering various health services, the exclusion of routine eye care represents a critical oversight in the program’s benefits. Millions of enrollees are left without access to essential vision services such as annual eye exams, prescription lenses, or specialized treatments for chronic vision issues. This gap is not only concerning but dangerous—without regular eye checkups, early indicators of vision loss or underlying eye conditions can go undetected, potentially leading to irreversible damage and more severe health complications in the long run.


For individuals with rare eye diseases, the consequences of this gap in coverage are even more devastating. Routine eye care is vital for managing their conditions, as early intervention often determines whether they can maintain or lose their vision. Without access to regular eye exams and proper treatment, these individuals face a heightened risk of permanent vision loss, a drastically reduced quality of life, and secondary health complications tied to their underlying conditions. This issue is more than just a healthcare oversight—it is a silent crisis, where the price of neglect is felt both on a personal and societal level, as preventable vision impairments lead to increased healthcare costs, lost productivity, and greater disability rates.


Rare Eye Disease Communities Hit the Hardest

For individuals living with rare eye diseases like Retinitis Pigmentosa (RP), Usher Syndrome, and Stargardt Disease, the absence of routine eye care coverage under Medicaid has a disproportionately severe impact. These conditions require continuous monitoring and early intervention to slow disease progression and improve outcomes. Yet, many patients are unable to afford regular exams or necessary treatments due to the coverage gap that could make a life-changing difference.


Retinitis Pigmentosa (RP)

Retinitis Pigmentosa is a group of genetic disorders that impair the retina's ability to respond to light, causing a gradual decline in vision. Individuals with RP often experience symptoms such as night blindness and loss of peripheral vision, which can eventually lead to complete blindness. Regular eye exams are critical for tracking the progression of the disease and exploring potential interventions, such as retinal implants or vitamin A therapy, which could help preserve remaining vision.


However, without access to routine eye care, many RP patients miss crucial opportunities for early intervention, accelerating their vision loss. The lack of Medicaid coverage forces many to either pay out-of-pocket or forgo care entirely, hastening the deterioration of their eyesight.


Usher Syndrome

Usher Syndrome is a rare genetic condition that causes both hearing and vision loss, combining progressive retinal degeneration, similar to RP, with congenital hearing impairment. The dual sensory loss faced by those with Usher Syndrome makes routine eye care even more essential. Regular vision screenings allow early detection of retinal degeneration, enabling patients to access low-vision aids and prepare for their changing needs.


Unfortunately, Medicaid’s exclusion of routine eye care leaves many individuals with Usher Syndrome vulnerable to untreated vision loss. This adds to the already significant challenges posed by their condition, exacerbating their struggle to maintain independence and quality of life.


Stargardt Disease

Stargardt Disease is the most common form of inherited macular degeneration in children and young adults. It causes progressive central vision loss, severely impacting daily activities such as reading and recognizing faces. Early detection and monitoring are essential to managing Stargardt Disease, as emerging therapies, including gene therapy, offer hope for slowing disease progression.


Regular eye exams are vital for tracking Stargardt Disease and determining when emerging therapies might be most effective. Yet, the absence of Medicaid coverage for routine care means many individuals face a heightened risk of rapid vision loss, often without the timely interventions that could help them retain their sight.


The Broader Impact on the Rare Disease Community

Rare eye diseases rarely exist in isolation. Many individuals with rare diseases face a host of interconnected physical and mental health challenges, and the inability to access routine eye care often compounds these difficulties. Vision loss not only worsens existing conditions but also leads to increased healthcare costs, reduced independence, and a severely diminished quality of life.


For those with rare diseases, managing their overall health is already a complex, often overwhelming process. Vision impairment adds another layer of difficulty, affecting their ability to navigate healthcare systems, adhere to medication regimens, and maintain mobility—especially when vision aids, regular checkups and early interventions are inaccessible. The impact extends far beyond physical health; the emotional toll of vision loss can be profound. Studies have shown that vision loss is strongly linked to feelings of isolation, anxiety, and depression, further straining the mental health of individuals who are already managing significant health burdens.


Moreover, the inability to address vision loss early on can result in a cascade of negative consequences, including increased dependency on caregivers, a loss of employment opportunities, and greater financial strain on both the individual and the healthcare system. For patients with rare diseases, untreated vision loss is not simply a personal hardship—it can lead to greater societal costs as well. The lack of Medicaid coverage for routine eye care thus perpetuates a cycle of preventable decline, exacerbating health disparities and worsening outcomes for a vulnerable population.


Addressing this issue through comprehensive Medicaid reform is essential, not only to improve the quality of life for rare disease patients but also to reduce long-term healthcare costs and support broader health equity.


Addressing the Crisis

Tackling the lack of routine eye care coverage in Medicaid is not just a matter of necessity for the millions who depend on this healthcare program—it is a critical issue for the rare disease communities that are disproportionately affected. Expanding Medicaid to include routine eye exams, prescription lenses, and specialized treatments could have a transformative impact. By preventing avoidable blindness and enabling early interventions, these changes would not only enhance the quality of life for individuals with rare eye diseases but also reduce long-term healthcare costs associated with unmanaged vision loss.


Advocacy efforts led by organizations such as the Foundation Fighting Blindness and the Usher Syndrome Coalition are at the forefront of pushing for these much-needed policy reforms. Their work highlights the urgent need for comprehensive eye care within Medicaid, underscoring how such coverage could empower individuals to maintain their independence, reduce the progression of their conditions, and improve overall well-being.


Expanding Medicaid to cover routine vision care would be a major victory, not just for these advocacy groups, but for the patients they represent—ensuring that no one has to face preventable vision loss simply because they cannot afford regular eye care. It is a crucial step toward health equity, offering hope to millions who currently face the threat of blindness without the resources to prevent it.


Conclusion

The absence of Medicaid coverage for routine eye care is a glaring oversight that disproportionately harms individuals with rare eye diseases. For those living with conditions like Retinitis Pigmentosa, Usher Syndrome, and Stargardt Disease, regular eye exams are not a matter of choice but a critical need to preserve their vision and maintain their quality of life. Policymakers must acknowledge this urgent gap in healthcare and work toward expanding Medicaid’s coverage to include routine eye care for all.


Millions of Americans stand to benefit from such a change, especially the rare disease community, for whom timely eye care can mean the difference between vision and blindness. The time for action is now—the future of countless individuals depends on it.


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