Protect Access to Sight-Saving Treatment for People Living with Blepharospasm

Thousands of Americans with blepharospasm could lose access to the treatment that allows them to see.

Medicare changes under review could severely restrict this care, putting patients at risk of functional blindness.

Living with blepharospasm is a daily battle. It’s not a simple eye twitch—it’s a debilitating neurological disorder that causes uncontrollable, often painful blinking and forced eye closure. These episodes can last seconds or hours. In advanced stages, the eyes can clamp shut so tightly that a person cannot see.

For many, this means losing the ability to read, drive, work, or even walk safely. It takes away independence and profoundly impacts quality of life.

For most patients, the only effective treatment is periodic injections of therapeutic botulinum toxin. These injections are not optional—they are essential. They allow people to keep their eyes open, function day-to-day, and maintain a sense of normalcy.

But now, that access is under serious threat.

Medicare Administrative Contractors (MACs) have proposed new coverage limits that would drastically restrict this treatment.  Despite detailed medical documentation, these proposals could:

• Reduce dosage amounts or cap dosing at just 5 units per eye, when many patients require up to 50 units per eye for effective relief,
• Limit injections to only 3 sites per eye, which is medically insufficient, and/or
• Restrict treatment frequency to every 12 weeks, despite the fact that many patients experience symptom return at 8–10 weeks

These limits do not reflect real-world care and would make treatment ineffective for many patients.

If finalized, this policy could leave tens of thousands of Americans functionally blind.

Blepharospasm affects at least 50,000 people in the United States, many of them older adults who depend on Medicare for access to care. Without appropriate treatment, they risk losing not just their vision, but their independence, safety, and mental well-being.

This decision doesn’t just impact patients—it affects families, caregivers, and communities who watch their loved ones struggle unnecessarily.

We are calling on the Centers for Medicare & Medicaid Services (CMS) and policymakers to:

• Reject these proposed restrictions on dosing, injection sites, and treatment frequency 
• Ensure coverage decisions are based on medical necessity and clinical evidence
• Protect physicians’ ability to treat patients based on individual needs—not arbitrary limits

No one should lose their ability to see because of preventable policy decisions.

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