Proposed changes to Medicare will limit access to treatment with botulinum neurotoxin for spasmodic torticollis/cervical dystonia. If passed, these changes could be adopted by private insurance carriers, which may affect everyone receiving this treatment. Public comments are accepted until May 16, 2026

The Centers for Medicare & Medicaid Services (CMS) works with regional contractors, known as Medicare Administrative Contractors (MACs), to manage Medicare coverage. These MACs are responsible for making decisions about what treatments are covered in their regions through Local Coverage Determinations (LCDs). Because coverage for botulinum neurotoxin (BoNT) is determined locally, each MAC can decide how it will be reimbursed for treating conditions like dystonia, which includes all the focal dystonia including cervical dystonia. 

In July 2024, five MACs proposed significant changes to these policies. Feedback from people who spoke up and submitted comments made a difference and some changes were made on that proposed Medicare policy. The final rules were issued in January and took effect in February, but since then, patients and physicians have reported challenges in accessing appropriate treatment. In response, five MACs have reopened the comment period, creating an important opportunity for patients to share their experiences and help inform future decisions.

Several provisions could still limit access to effective treatment and create unnecessary barriers. Some of the key concerns include:

• Restrictions on bilateral injections, which are commonly used and often more effective for many patients 
• Lack of recognition for treatment of less common forms, such as abductor spasmodic dysphonia 
• Restriction on the frequency of injections (no sooner than 12 weeks)
• New requirements that add administrative burden without improving care 
• Limitations on sedation or anesthesia, even when medically necessary 
• Restrictions on the use of tools that help ensure accurate and safe injections 

These changes are not aligned with how care is currently delivered and may increase the number of visits, costs, and challenges for patients without improving outcomes.

Even if you are not currently on Medicare, this still matters. Medicare policies often set the standard that private insurance companies follow. Changes like these can extend beyond Medicare and impact coverage decisions across the healthcare system, potentially affecting access to treatment for many people.

WE ARE ASKING FOR YOUR HELP! To make changes that will make the process easier for people living with dystonia have access to the botulinum toxin they use for their chemical denervation treatment, your voice needs to be heard on this issue.

Below is a template of a letter that can be customized and emailed to submit your public comment. The deadline to submit comments for most of the MACs is May 16. 

TAKE ACTION NOW

• Copy and paste the template letter below and add your personal story to voice your concerns about the proposed changes. This is very important.
• Find your state below.
• Use the email address and subject line for your state.

CLICK HERE to open a PDF file with information specific to your state, including the email address and subject line to use. The LCD numbers and email addresses are active links in the PDF.

*TEMPLATE LETTER*

Subject: Public Comment for LCD – Botulinum Toxin Injections (ADD LCD NUMBER)

Thank you for the opportunity to comment on the proposed changes to coverage for botulinum neurotoxin (BoNT) injections.

I live with cervical dystonia, a neurological movement disorder where the symptoms are caused by intermittent or sustained contractions of the muscles around the neck which control the position of the head. This causes the head to lean to one side, or be pulled forward or backward. The shoulders may also be uneven, and some patients experience tremors in the head or arms. Cervical dystonia is usually accompanied by constant and extreme pain that affects my ability to speak and function daily. Botulinum toxin injections treatments are essential for communication and quality of life.

I am concerned the proposed guidelines are overly restrictive and do not reflect current clinical practice. Treatment for this condition is highly individualized, requiring physician judgment on dosing, injection approach, and technique. Added administrative barriers, and limitations on care delivery may reduce treatment effectiveness and increase burden without improving outcomes.

Flexibility is critical, as some patients require sedation or specialized tools for safe and effective treatment.

[Optional: Add 1–2 sentences about your experience.]

I respectfully ask that you reconsider these proposed changes.

Sincerely,
[Your Name]
[Your Address]