Movement Disorder Advocacy: Making Policy a Priority

Movement disorders such as Ataxia, Parkinson’s, Huntington’s, and tardive dyskinesia can affect every aspect of a person’s life.  That includes the ability to work, travel, exercise, engage in leisure activities and interact with friends and family.

But wise policymaking can help these people continue to live a full life.  That’s why the Movement Disorder Policy Coalition is committed to uniting advocates to inform policymaking that protects access to treatment and encourages patient-centered care.

Comprehensive & Affordable Medicare Coverage

Medicare policy offers an important example.

Whether seniors age 65 and older, or people who qualify for Medicare through Social Security Disability, many movement disorders patients rely on Medicare to access medication.  Coverage must be comprehensive enough to meet the full spectrum of these patients’ health care needs – allowing them to treat physical symptoms, mental health symptoms and comorbidities as well.

For this reason, the Movement Disorder Policy Coalition advocates for policies such as Medicare’s six protected classes and out-of-pocket smoothing, which keeps Part D medications within reach by evening costs out across the calendar year.

Patient-Centered Care & Access Barriers

The coalition has also encouraged policies that allow for continued care during the COVID-19 pandemic.  Expanding telemedicine capabilities by allowing reimbursement for telephone and video appointments, for example, has been important. 

Removing barriers that delay or block access to treatment is another priority for the Movement Disorders Policy Coalition, both at the public and private insurance levels.  These include obstacles such as non-medical switching, step therapy and prior authorization.  Progress has been encouraging.

For example, Louisiana and South Dakota instituted laws that require insurers to consult evidence-based and peer-reviewed clinical guidelines when establishing their step therapy policies.  The laws also require exception procedures, where patients can opt out of step therapy under certain circumstances.

The new laws represent an important step toward protecting patient-centered care, where patients and their clinicians – not insurance companies – determine the course of treatment.

Innovation & Treatment Options

Finally, the Movement Disorders Policy Coalition celebrates and encourages innovation. 

While there are no cures for movement disorders, advocates have made it clear that research for these diseases is a priority. Through innovation there are now therapies available to manage symptoms like stiffness, tremor, fatigue or dizziness. With Parkinson’s disease, for instance, the treatment toolbox has rapidly expanded in a short period.  Nine new medications have been introduced in just the last six years.  Medications approved in recent years also help address symptoms and maintain quality of life for people with tardive dyskinesia, dystonia, essential tremor and Ataxia.

The Movement Disorders Policy Coalition recognizes that the policies that govern health care have a tremendous impact on the day-to-day lives of people with movement disorders.  The coalition remains committed to advocating for policies that ensure access to care, cultivate quality of life and allow for patient-centered care.

To learn more or browse the coalition’s resources, visit movementdisorderspolicy.org.

To find a Movement Disorder Clinic near you, visit ataxia.org/neurologists-and-specialty-clinics/

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