Advocate

Patients Have a Voice

VeDA advocates for the vestibular community to increase awareness about vestibular disorders, while implementing programs to reduce diagnosis times and improve treatment effectiveness, thereby improving the quality of life for vestibular patients.

• Read about VeDA’s advocacy strategy in our Advocacy Plan and learn more about Public Policy Advocacy.
• Download VeDA’s Advocacy Toolkit to learn how you can make a difference.
• Download NORD’s Advocacy Toolkit (National Organization for Rare Diseases).
• Interested in becoming involved in legislative advocacy? Let us know!
• Take action now.

You can be an advocate for vestibular awareness!

• Share your story
• Become a VeDA Ambassador
• Volunteer with VeDA
• Follow VeDA on Facebook – “Like” and “Share” our posts
• Write a letter to your legislator (Not sure who they are? Find out here)
• Share our “Top Ten Facts About Vestibular Disorders“
• Participate in Balance Awareness Week
• Give a presentation about balance disorders
• Host an information table about vestibular disorders at a health fair

Don’t forget to contact us and tell us how you are helping to raise awareness about vestibular disorders!

What is public policy advocacy?

Advocacy encompasses a wide range of activities that influence decision makers. Advocacy may include traditional activities such as lobbying, and public education. It can also include relationship building, forming networks, and raising awareness through public commentary.

To influence the legislative debate on issues of importance to you, establish a relationship with your Members of Congress and their staffs by introducing yourself, VeDA, and vestibular issues through letters, e-mails, and meetings.

Why is it important?

Vestibular disorders are widely misunderstood by legislators. These are the people who make decisions about your healthcare, research funding, and insurance coverage. As a citizen and constituent, you have a right to communicate your thoughts and ideas to legislators, federal officials, and the White House. If you want to see action taken to increase federal funding for vestibular research, better insurance coverage for vestibular testing and treatment, and overall improvement in healthcare policies, you need to make your voice heard – we need to make our collective voices heard.

VeDA’s goals

VEDA’s goal is to reduce the time it takes for vestibular patients to receive an accurate diagnosis and improve their treatment outcomes. To achieve these goals, we must:

• Increase the amount of funding allocated toward research into the diagnosis and treatment of vestibular disorders.
• Improve diagnostic criteria for the many different types of inner ear and brain balance disorders.
• Create systematic protocols for the triage, diagnosis and treatment of vestibular patients.
• Ensure that necessary diagnostic tests and treatments are covered by insurance.
• Make it easier for vestibular patients who can no longer work to receive disability insurance.

VeDA’s methods

• Connect with elected officials; cultivate those relationships.
• Educate policy makers on issues that affect vestibular diagnosis and treatment.
• Stay up to date on policy decisions impacting vestibular disorders.
• Provide tools to help patients become effective advocates.

What you can do

• Send a letter to your local, state and/or federal legislator.
• Call your local, state and/or federal legislator.
• Attend town hall meetings. Introduce yourself and share your concerns about the lack of awareness about vestibular disorders.
• Write a letter to the editor of your local paper telling the story of your vestibular journey.
• Contact your local TV or radio station and encourage them to talk about vestibular disorders (refer them to VeDA for more information).
• Engage your family and friends in your advocacy efforts.

VeDA’s advocacy efforts

• October, 2013: Submitted comments to the Social Security Administration regarding changes to the medical criteria for evaluating hearing loss and disturbances in labyrinthine-vestibular function.
• February, 2017: Submitted comments to the National Institute of Deafness and Communication Disorders on their 2017-2021 Strategic Plan.
• October, 2017: Submitted comments to the Department of Health and Human Services on their 2018-2022 Strategic Plan.
• January, 2018: Sent letter to the FDA urging them to grant fast track designation to Otividex as a treatment for Meniere’s disease.
• February, 2018: Signed onto National Organization of Rare Diseases’ letter to Medicare urging them to preserve patient access or orphan therapies.
• July, 2018: Sent letter to Medicare asking them to cover essential vestibular testing, such as Canalith Repositioning Procedure (CRP) for BPPV, Computerized Dynamic Posturography (CDP), and Videonystagmography (VNG).
• July, 2019: Engaged vestibular community in sending letters to their legislators in support of reauthorizing the Patient-Centered Outcomes Research Institute (PCORI), which funds vital research on hearing and balance disorders.
• September, 2019: Submitted comments to the National Institute of Neurological Disorders on their 2020 Strategic Plan.
• November, 2019: Engaged vestibular community in sending letters to their legislators in support of S.970/H.R. 2802, which would add physical therapists to the National Health Service Corps, thereby increasing access to rehabilitation services for individuals in rural and underserved areas.
• December, 2019: Sent letter to the National Center for Interstate Compacts supporting the enactment of the Audiology and Speech-Language Pathology Interstate Compact, which would improve access to audiological services for hearing and balance disorders.
• December, 2019: Engaged vestibular community in sending letters to their legislators in support of H.R. 4056/S.2446 – the Medicare Audiologist Access & Services Act of 2019, which would increase direct access for patients to audiological diagnostic and therapeutic services.
• January, 2020: Engaged vestibular community in sending letters to their legislators urging them not to support proposed changes that would make it more difficult for vestibular patients to apply for Social Security Disability.
• March, 2020: Submitted comments to the National Institute of Deafness & Communication Disorders  on their 2022-2026 Strategic Plan.
• June, 2020: Submitted comments to the National Institute of Neurological Disorders and Stroke regarding health disparities and inequities in the treatment and care for neurological disease.
• September, 2020: Rep. Bernice Johnson brought to the floor of the House of Representatives a resolution to recognize Balance Awareness Week, September 13-20, 2020.
• November, 2020: Signed onto National Organization of Rare Diseases’ letter to America’s Health Insurance Plans urging them to continue waiving copayments and deductibles for certain telehealth visits for patients during the COVID-19 Public Health Emergency (PHE).
• April, 2021: VeDA wrote a letter asking Representatives to co-sponsor the Expanded Telehealth Access Act of 2021 (H.R. 2168), which would make permanent the current temporary policy that allows physical therapists and physical therapist assistants to deliver and bill for services provided via telehealth under Medicare. Thirty-four community members took action and sent this letter to their federal Representatives.
• September, 2021: Rep. Bernice Johnson brought to the floor of the House of Representatives a resolution (H.R. 661) to recognize Balance Awareness Week, September 19-25, 2022.
• September, 2021:  VeDA signed onto a letter sent by the National Organization of Rare Diseases (NORD) to prominent Senators urging them not to approve changes suggested by the House Ways & Means Committee that would undermine the Orphan Drug Act by limiting the availability of the Orphan Drug Tax Credit.
• November, 2021: VeDA signed onto letters sent by the National Organization of Rare Diseases (NORD) and the Alliance for Connected Care to state Governors urging them to maintain and expand licensure flexibilities for the duration of the federal public health emergency caused by COVID-19, and to reinstating licensure flexibilities if they have expired or implement new flexibilities to better address patient needs during the ongoing pandemic.
• July, 2022: VeDA sent a letter to our federal legislators urging them to support the Speeding Therapy Access Today, or STAT Act, H.R. 1730/S. 670, a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community. The centerpiece of the STAT Act is the creation of a Rare Disease Center of Excellence at the US Food and Drug Administration. We also encouraged community members to reach out to their legislators.