From the Executive Director

From the Executive Director

Urgent Action Needed: Fight Medicare’s New Proposal on Botulinum Toxin Injections

Hello everyone,

If you’ve received an alarming email regarding your access to botulinum toxin, it’s because Medicare’s new proposal could significantly impact your treatment. Here’s a breakdown of the situation and how you can help:

What’s Happening?

Medicare has proposed new regulations for botulinum toxin injections, including:

  • Minimum interval of 12 weeks between injections.
  • Limiting injection sites to three specific areas.
  • Capping the maximum number of units per eye at five.

These changes threaten effective treatment for many, particularly those on Medicare.

Why You Should Care

Even if you’re not currently on Medicare, these changes could affect you in the future. It’s crucial for everyone impacted by these treatments to respond and help prevent these restrictive regulations.

How to Respond We have two primary ways to fight this proposal:

  1. Respond to Medicare:
    • Medicare’s local coverage determination (LCD) proposal is open for public comment.
    • Follow our step-by-step guide to submit your comments via the provided templates.
  2. Contact Your Legislators:
    • Write to your Congressperson and Senators.
    • Use the sample letter and personalize it with your story.
    • Sending a physical letter might have more impact than an email.

Step-by-Step Guide

  1. Copy and Paste the Template:
    • We’ve provided a template for your response. Copy it into a new document.
    • Include your personal story: your history with blepharospasm, your treatment details, and the potential impact of the new proposal on your life.
  2. Submit Your Comment:
    • Go to the specified LCD link.
    • Follow the instructions to submit your comment.
  3. Contact Legislators:
    • Find your representatives’ contact details on their official websites.
    • Send them a personalized letter urging them to oppose the new regulations.

Medicare Coverage Database- Proposed Policies and Correspondence Information

MACStatesLCD Proposal
CGSKentucky, OhioDL39857
NGSIllinois, Minnesota,
Wisconsin, Connecticut,
New York, Maine,
Massachusetts, New
Hampshire, Rhode
Island, Vermont
NoridianCalifornia, Hawaii,
Nevada, American
Samoa, Guam, Northern
Mariana Islands, Alaska,
Arizona, Idaho, Montana,
North Dakota, Oregon,
South Dakota, Utah,
Washington, Wyoming,
PalmettoAlabama, Georgia,
Tennessee, North
Carolina, South Carolina,
Virginia, West Virginia
(excludes Part B for the
counties of Arlington and
Fairfax in Virginia and the
city of Alexandria in
WPSIowa, Kansas, Missouri,
Nebraska, Indiana,

Here are the Addressees and Subject lines for each MAC. Enter them EXACTLY as they appear below.

Subject line: Public Comment for Proposed LCD – Botulinum Toxin Injections (DL39857)
Subject line: Public Comment for Proposed LCD – Botulinum Toxin Injections (DL39832)
Subject line: Public Comment for Proposed LCD – Botulinum Toxin Injections (DL35170)
Subject line: Public Comment for Proposed LCD – Botulinum Toxin Injections (DL39836)
Subject line: Public Comment for Proposed LCD – Botulinum Toxin Injections (DL39909)

For your benefit, here is the template for your response:

Sample response to Medicare Proposal:

Thank you for this opportunity to respond to your proposed local coverage determination on botulinum toxin injections for treatment of blepharospasm. My biggest concern is that the 5 unit per eye dosage limitation was clearly put together without input from patients who are living with blepharospasm and rely upon botulinum toxin treatment, as determined by their doctor, to maintain daily function.  Allow me to tell you my story:

[Tell your blepharospasm story in 1 paragraph to give your brief history with blepharospasm and 1 paragraph to describe how your life would change if this proposed change of dosage should become policy]

This proposal, if finalized, would be absolutely devastating to anyone with blepharospasm by depriving them of access to medically necessary care. It would, in essence, allow up to 150 thousand people to become virtually blind. Surely, that is not the intention, but will be the reality if not corrected.

Thank you again for this opportunity to share the patient perspective. I hope your consciences cause you to re-think this decision.


Your name

Your address

Important Deadlines

The deadline to respond to the LCD proposal is July 13th. Make sure to send your responses promptly.

Need Help?

If you have any questions or need assistance, don’t hesitate to reach out to the BEBRF office. We’re here to support you through this process. Your participation is crucial in protecting access to necessary treatments. Thank you for your attention and action on this critical issue. Stay informed and proactive for your health and the health of others.

Thank You!