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capitol hill report: IMPROVING CARE FOR VETERANS WITH NEUROLOGIC CONDITIONS

January 10, 2022

Latest Advocacy News

  • Check out the AAN’s Top 10 Advocacy Successes of 2021
  • Progress on the Build Back Better Act (BBBA) has grinded to a halt after a statement from Sen. Joe Manchin (D-WV) expressing his unwillingness to support the bill in its current form. The AAN will continue to advocate for proposals the Academy supported that were a part of the BBBA, such as those that will make prescription drug prices more sustainable, improve our health care workforce, provide affordable insurance coverage to more Americans, and help address critical health care inequities.
  • The AAN submitted official comments on December 21 in support of the Biden administration’s vaccine mandate for health care workers. The AAN recognizes the necessity for this mandate and is strongly supportive of all efforts being made to vaccinate health care workers to protect them, and their patients, from COVID-19. Elements of this mandate are being held up in court and the AAN will continue to monitor and advocate on this issue.

Issue in Focus

Nine million Veterans are enrolled in Veterans Health Administration (VHA) care around the nation, including many who suffer from neurologic disease. Many of these veterans benefit from the unique care of neurology-related Centers of Excellence—which focus on epilepsy, headache, Parkinson’s disease, and multiple sclerosis—that are fully integrated into a VA medical center to better coordinate multidisciplinary care.

Unfortunately, funding for most of these centers has been stagnant, some for two decades, despite the growing need for neurologic care for veterans. To help address this need, recently the AAN and our coalition partners successfully persuaded Congress to include language for the Fiscal Year 2022 appropriations process that urges strong funding for all the VA Neurology Centers of Excellence.

The AAN will continue to advocate for strengthening care for all veterans with neurologic conditions—including robust funding for the VA Neurology Centers of Excellence. To accomplish this goal, we work with our coalition partners who have been instrumental in supporting the AAN’s advocacy and in leading efforts to promote the important work of each disease-specific center.

Information on each Center of Excellence is included below from our coalition partners: the Alliance for Headache Disorders Advocacy, Epilepsy Foundation, National Multiple Sclerosis Society, and The Michael J. Fox Foundation for Parkinson's Research.

Epilepsy Centers of Excellence
Contributed by Epilepsy Foundation
Established pursuant to a 2008 federal law, the VA Epilepsy Centers of Excellence (ECoE) is a network of 17 sites that provide comprehensive epilepsy evaluation and care for veterans with epilepsy and seizure disorders. In FY 2021, the VA Epilepsy Centers of Excellence served 91,054 unique patients with epilepsy and seizures. Many of these acquired seizures and epilepsy through Traumatic Brain Injury (TBI), which is the leading form of injury or head trauma in servicemen and women.

The VA ECoE offers the full array of outpatient and inpatient services for veterans with epilepsy. Outpatient services include magnetic resonance imaging (MRI), electroencephalography (EEG), and video monitoring. Inpatient services include examining certain seizure types more closely, changing medications in a monitored setting to ensure safety, and presurgical evaluation. Another critical aspect of the ECoEs is that they are linked with Polytrauma Centers in order to monitor veterans with moderate and severe TBI that are at the greatest risk for post-traumatic epilepsy. Long a leader in telehealth providing telehome care visits, tele EEG services where VA CoEs read EEGs from other VAs and at some centers, tele cognitive behavioral therapy, the focus on telehealth has only increased during COVID-19. More information can be found here.

Headache Centers of Excellence
Contributed by the Alliance for Headache Disorders Advocacy
Headache disorders are a major health problem for military veterans and migraine is the second-leading cause of global disability. 350,000 Global War on Terror veterans sustained traumatic brain injuries (TBIs) during their service. Nearly half of these veterans with deployment-related TBI, reported headaches 15 or more days per month, 4 to 11 years later and 89 percent met the criteria for migraine. Additionally, 3 million Global War on Terror veterans were exposed to toxic open burn pits and years later reported nearly twice the risk of functional limitations due to migraine.

The Alliance for Headache Disorders Advocacy (AHDA), in collaboration with leadership from Senator Brian Schatz (D-HI), has worked to provide access to the much-needed specialty care for our veterans living with migraine and headache disorders. Through this joint advocacy, the VHA Headache Disorders Centers of Excellence (HCoE) program was established in FY18". The centers were created to provide comprehensive direct patient headache medicine care, consultation, and referral services within the VHA. The centers also provide education and training of VHA health care providers and conduct research to improve the quality of headache disorders care for veterans and civilians.

As is the trend across the civilian migraine population, there is a severe shortage of access to care. In 2020, more than 408,000 veterans sought specialty care for headache disorders within the VHA; however, only half of those seeking such care were within reach of one of the 14 HCoE sites.
Through AHDA’s continued advocacy and funding in FY2022, the VA Headache Centers of Excellence has grown to 19 locations around the US, with plans to expand to a total of 28 national sites.

Multiple Sclerosis Centers of Excellence
Contributed by National Multiple Sclerosis Society
The VA Multiple Sclerosis Centers of Excellence (MSCoE), established by the VHA in 2003, are dedicated to furthering the understanding of multiple sclerosis (MS), its impact on veterans, and ensuring access to effective treatments to help manage the disease and its symptoms.

The MSCoE work is organized around four functional cores: clinical care, research and development, education and training, and information and telemedicine. Through these core areas, the centers strive to minimize impairment and maximize quality of life for veterans with MS. Federal funding for the MSCoE has remained relatively flat since 2003; therefore, the MCOE expands its impact through partnerships with veterans, caregivers, health care professionals, MS advocates, veterans service organizations, and community health care institutes. Through a referral VA Network of MS Regional and Support Programs, the MSCoE works collaboratively with university affiliates and community partners to manage care and optimize the veteran experience.

Additional funding for the MSCoE would allow these centers to hire additional staff and increase their impact by expanding their outreach, educational resources, support, and other opportunities for veterans, families, caregivers, and health care professionals. For more information, please visit the MSCoE website.

Parkinson's Disease Research, Education, and Clinical Centers
Contributed by The Michael J. Fox Foundation for Parkinson's Research
Parkinson’s disease (PD) is a chronic, idiopathic, progressive neurological and dementia disorder for which there is no cure or current treatment to slow or stop progression of the disease. There are over 1 million people living with PD in the US, and roughly 11 percent (or 110,000) of those individuals are military veterans. All too often, soldiers may experience physiological or psychological stress, head trauma, severe brain injury, or become exposed to dangerous toxins from solvents, burn pits, or pesticides that are known or suspected triggers of PD.

The Parkinson’s Disease Research, Education, and Clinical Centers (PADRECCs) are part of the VA system and provide comprehensive medical and surgical care to veterans with PD and other movement disorders. There are six PADRECCs and each serves as a referral and consultative center for a larger service area encompassing several surrounding states and dedicated to providing specialized clinical care and support for patients and families within their designated areas.

The Michael J. Fox Foundation for Parkinson’s Research goals for the PADRECCs include advocating for increased federal funding to support enhanced access to care, education and outreach, and research for our nation’s veterans living with PD. For more information, please read our Five Facts for Veterans about PD along with this blog and know that we’re always looking for new volunteers, including people with and without PD, to register for the Parkinson’s Progression Markers Initiative and join our Parkinson’s policy network of advocates.

What We're Reading

  • Decision Looms That Could Determine Fate of Alzheimer’s Drug (The New York Times)
  • CMS releases guidance on healthcare worker vaccination mandate (Becker’s Hospital Review)
  • CDC shortens isolation time for health care workers with Covid-19 (CNN)