The New York State Department of Health (DOH) is continuing its efforts to transition participants in the New York State Traumatic Brain Injury Waiver Program into managed care and the Nursing Home Transition and Diversion Program. The Health Department continues its efforts despite wide spread opposition from TBI Waiver participants and other stakeholders including the Brain Injury Association of New York State.
The transition has serious implications for all TBI Waiver participants and may jeopardize their continued eligibility or the types of services they receive.
A workgroup meeting has been scheduled by DOH for Wednesday March 1, 2017 10:00 am -12:00pm, but an agenda has not been announced. [nothing like waiting to last moment to surprise everyone, but typical of the attitude of the Health Department to persons with a brain injury]
Stakeholders are invited to either attend in person in Albany at the Office of the Division of Long Term Care: One Commerce Plaza, 99 Washington Avenue, room 1613, or via webinar/conference call.
To participate by webinar or call you must first register.
- Click here
- Then Click "Register".
- On the registration form, enter your information and then click "Submit".
Chronic Traumatic Encephalopathy (CTE) has been found for the first time in the brains of retired soccer players in a new study published in the Feb 14th edition of the journal Acta Neuropathologica.
Researchers examined the brains of six retired soccer players who were diagnosed with dementia. All six were found to have Alzheimer’s disease and four of the six were found to have evidence of CTE.
Although prior studies have found links between CTE football and boxing caused by repetitive head trauma, this study confirms the link between CTE and soccer.
Driving may be dangerous following a concussion, even after an individual’s symptoms improve or they think they have recovered, researchers report in an article published on line in the Journal of Neurotrauma.
"Despite being asymptomatic, concussed participants exhibited poorer vehicle control, especially when navigating curves," the authors wrote. "Driving impairments may persist beyond when individuals with a concussion have returned to driving”.
The full article is published on line: Driving after Concussion: Is It Safe To Drive after Symptoms Resolve?
Here is a list of brain injury conferences scheduled for March, 2017:
Pacific Northwest Brain Injury Conference
Scripps Brain Injury Conference
San Diego, CA
BIA of Virginia Annual Conference
BIA of Nebraska Annual Conference
The federal judge presiding over the NFL concussion settlement case at a hearing earlier this week reminded players that they must register for the settlement by August 7th to be eligible for any benefits. Awards cover ALS, Parkinson’s disease, dementia and some deaths for players diagnosed with chronic traumatic encephalopathy (CTE). The settlement does not provide any cash benefits for those players suffering with the post concussive syndrome, but players should still register and be tested to be eligible for benefits if their conditions worsen. Registration information is available by at the official settlement website
A new study sponsored by the United States Department of Defense and the Veterans Administration will track service members who served in Iraq and Afghanistan to learn more about mild traumatic brain injuries (mTBI) including evaluation, treatment and long term outcome.
The researchers hope to be able to follow approximately 1,100 service members for 20 years to study the long term effects of mild TBI.
Information about the study can be found in the journal Brain Injury.
About 80 percent of those being enrolled have a history of at least one mild TBI, while the others have no TBIs. That will allow the researchers to compare the two groups. The focus is strictly on mild TBI; those with more severe brain injuries are excluded.
The study will include an extensive interview and comprehensive testing including brain scans, eye movement studies, neuropsychological testing, balance testing and blood tests.
The study is currently enrolling participants at four VA sites in Richmond, Tampa, San Antonio, and Houston--and one Defense site, the National Center for the Intrepid at Fort Belvoir in Virginia. Three more VA sites will begin enrolling this spring--Boston, Minneapolis, and Portland.
You can read more by clicking here.
The National Hockey League is taking a page from big tobacco in challenging the research on chronic traumatic encephalopathy (CTE) and its link to repetitive head trauma. See article from New York Times, The N.H.L.’s Problem With Science. How can NHL condone fighting as part of sport? Time for Congress to shine the spotlight on NHL!
The 12th World Conference on Brain Injury is scheduled to take place from March 29 to April 1, 2017 in New Orleans, LA. My partner, Shana De Caro and I are both scheduled to attend and participate in the legal conference. The international conference is the largest multidisciplinary gathering of brain injury professionals with an outstanding faculty and program. Click here for more information.
Vultures are circling to take advantage of NFL players in concussion settlement. Read article in today’s New York Times ,Lender Deceived Ailing N.F.L. Retirees, Suit Claims including my comments on these predators.
Traumatic brain injury is a major cause of epilepsy. Epileptic seizures can develop days, weeks or even months following head trauma.
The National Institutes of Health has just announced a grant of $21 million to develop betters means of preventing epilepsy or seizure disorder following a traumatic brain injury.
The study will be lead by researchers at UCLA School of Medicine and Albert Einstein College of Medicine, Bronx, New York.
According to a new study published online in the journal of the American Academy of Neurology, soccer players who repeatedly head the ball are three times more likely to have concussion symptoms than players who do not. The study is entitled: Heading in soccer: More than a subconcussive event?
The study raises important implications for heading in the ball in soccer, since these players at risk for concussion symptoms are suffering sub-concussive blows to the head.
Most recent research implicates repeated sub-concussive blows as a major risk factor for long term disability.
You can read more by clicking here.
This week, Professor Joseph Fins wrote an article advocating for the rights of brain injury victims. The article entitled, Why advances in treating those with brain injuries require advances in respecting their rights is a worthwhile read.
Some important comments that need repeating:
[A]fter gratitude for a life that has been saved, the truly difficult part begins. Patients and families face a slow-paced and often fickle recovery. Tragically, this phase is often made more challenging by the burden of poorly designed insurance coverage.
Families struggle to get their loved ones needed rehabilitation. If they do get rehabilitation, it is often too short to make a difference. Indeed, if patients are too slow to demonstrate improvement, services can be cut off because of stringent “medical necessity” admission criteria, often from third-party insurers.
This cutoff makes no sense. if we don’t know how long it takes the injured brain to heal, how do we know the pace is too slow? In the end, the vast majority are placed in a nursing home or institution, which is euphemistically called “custodial care.”
It's time that insurance companies provide the care to brain injury victims that they deserve. Anything less is a violation of their rights.
The Brain Injury Association of America (BIAA) has provided the following legislative update for December 2016:
Brain Injury Association of America Submits Amicus Brief Today to United States Supreme Court To Reject NFL Concussion Settlement
I am pleased that the amicus brief that Shana De Caro and I wrote was submitted today on behalf of the Brain Injury Association of America to the United States Supreme Court in support of the Petition for a Writ of Certiorari to reject the NFL class action concussion settlement.
"This action, commenced for the multi-faceted repercussions of brain damage as a result of longstanding NFL misconduct, fails to compensate the majority of players who have suffered the devastating and enduring effects of traumatic brain injury. The court has an obligation to protect the entire class based upon well-researched, recognized, and cogent medical science. Any settlement that does not, should be rejected as unfair and contrary to the best interests of the majority of class members."
A conference reviewing developments in Chronic Traumatic Encephalopathy will be held at the Boston University Alzheimer’s Disease and Chronic Traumatic Encephalopathy Center on November 3rd & 4th, 2016.
Boston University, Metcalf Trustee Center, 1 Silber Way, 9th floor, Boston, MA 02215
More information can be obtained by clicking here.
The following legislative update was prepared by the Brain Injury Association of America (BIAA).
Protection and Advocacy for Veterans Act
Members of the Consortium for Citizens with Disabilities (CCD) Task Force on Veterans and Military Families submitted a letter of support last Friday to Representatives Martha Roby (R-Ala.), Dina Titus (D-Nev.), Timothy Walz (D-Minn.) and Lee Zeldin (R-N.Y.), sponsors of H.R. 5128, the "Protection and Advocacy for Veterans Act." H.R. 5128 would establish a pilot program within the Department of Veterans Affairs (VA) to ensure veterans receive proper support in the areas of mental health and substance use. As a member of the CCD Task Force, the Brain Injury Association of America (BIAA) signed the letter.
NIH Pediatric Concussion Workshop
On Oct. 13-14, 2016, the National Institutes of Health (NIH) is sponsoring a Pediatric Concussion Workshop to bring together experts in the field of pediatric concussion to present their most recent findings. The goals of this workshop are to: (1) identify gaps in knowledge about pediatric concussion, (2) identify high priority areas of research in pediatric concussion, and (3) identify populations and study designs that will prove most feasible for addressing knowledge gaps. The workshop will be held at the North Marriott Hotel & Conference Center, Bethesda, Maryland. Participating NIH institutes are the National Institute of Neurological Disorders and Stroke (NINDS); National Center for Medical Rehabilitation Research (NCMRR); National Institute of Child Health and Human Development, known as the Eunice Kennedy Shriver Center (NICHD); and the National Institute on Drug Abuse (NIDA). For details, click here
CDC Report on Guideline for Managing Mild TBI
The Board of Scientific Counselors (BSC), an advisory board to the Centers for Disease Control and Prevention (CDC), met last week and accepted the mild traumatic brain injury (mTBI) workgroup report prepared for Congress. The BSC recommended that CDC move forward with developing the mTBI guideline. More information on the public comment period for this guideline will be forthcoming as that process gets further underway. The TBI Act Reauthorization of 2014 directed the CDC, in consultation with the National Institutes of Health, to conduct a review of scientific evidence related to brain injury management in children and to submit a report to Congress in 2016. CDC's Injury Center is expecting to release the report around the annual Congressional Brain Injury Task Force Awareness Day in March. Click here to review the report.
The 12th World Congress on Brain Injury will be held at the Sheraton New Orleans Hotel March 29 - April 1, 2017. The congress has issues a call for abstracts. The deadline for submitting an abstract is November 7, 2016. More information can be obtained by clicking here.
Neuroscience Caucus to Hold Briefing on CTE Next Week
On Sept. 13, 2016, the Congressional Neuroscience Caucus and the Congressional Brain Injury Task Force, in partnership with the American Brain Coalition, the American Academy of Neurology, and the National Association of State Head Injury Administrators, will present a briefing that explores our current understanding of sports-related injuries and research efforts aimed at gaining a deeper understanding of these injuries on the human brain. The briefing, "Sports-Related Brain Injuries: From the NFL to the Laboratory," will be held from 3 p.m. - 4:30 p.m. at the Capitol Visitors Center H-201A-B. This briefing will feature Chris Borland, a linebacker formerly of the San Francisco 49ers who stunned the sports world by retiring after one year in the NFL due to concerns about CTE. Chris is now forming a foundation to work with high school athletes who serve their communities. Dr. Ann McKee, a professor of Neurology & Pathology at Boston University, who is a renowned brain researcher and one of the leading authorities on TBI and CTE in the nation, will also be presenting information.
Important action alert from the Brain Injury Association of America concerning the Americans with Disability Act
The following alert has been issued by the Brain Injury Association of America concerning proposed amendments to the Americans with Disabilities Axt:
Early Preventive Therapy in Severely Brain-Injured Patients Lowers Risk of Pulmonary Embolism and Deep Vein Thrombosis
Victims of severe traumatic brain injury are at high risk for developing deep vein thrombosis (DVT) and pulmonary embolism (PE). Patients with TBI are at higher risk of forming blood clots because of their long-term immobility. DVT occurs when the blood in the veins pools and forms a clot in the arms or the legs. PE occurs when a clot breaks loose and travels to the lungs.
New research published in the Journal of the American College of Surgeons web site advocates the use of blood-thinning medications beginning within 72 hours of hospital arrival. The research study found that staring these medications early has a significant protective effect against these conditions in patients with severe TBI, and does not increase risk of bleeding complications or death. The study can be accessed by clicking here.
Injuries from domestic violence can result in brain damage to 60% of domestic abuse victims according to research published in the journal Family and Community Health. You can read more by clicking here.
The number of adolescents diagnosed with concussions is growing, according to researchers at UC San Francisco. They recommend that adolescents be prioritized for ongoing work in concussion education, diagnosis, treatment and prevention.
The study found that 56 percent of concussions were diagnosed in the emergency department, 29 percent in a physician's office, and the remainder in urgent care or inpatient settings. As such, outpatient clinicians should have the same confidence and competence to manage concussion cases as emergency physicians, Zhang said.
A 60 percent increase in concussions occurred from 2007 to 2014 (3,529 to 8,217), with the largest growth in ages 10-14 at 143 percent and 15-19 at 87 percent. Based on classification, 29 percent of concussions were associated with some loss of consciousness.
The findings appear online August 16, 2016, in the Orthopaedic Journal of Sports Medicine. Click here to read full article.
The University of California, San Francisco has posted information about a stem cell therapy clinical trial program for eligible individuals.
A registry has been created to identify potential participants and for future clinical research studies.
You may enroll in the participant recruitment registry for TBI research if you:
- Are age 18 or older
- Have suffered TBI
- Have ongoing symptoms as a result of the TBI
Note: Other inclusion and exclusion criteria apply for each study.
Further information can be obtained by clicking here.
Veterans returning to college following a traumatic brain injury may fact special challenges caused by headaches, sleep disturbances, pain, vision and hearing problems, dizziness, and mood changes. You may also feel overwhelmed or have difficulty staying focused.
Here is a link to an article with helpful information and resources. Click here.
Strong support systems at colleges and universities can help you through these challenges. However, it's important to be your own advocate and educate yourself about what resources are available.
Borrowing from what i have frequently lectured and written about, the New York Times has reported today that the NFL has finally decided that the only way to enforce their concussion protocols is to impose strict penalties upon teams that fail to follow them.
The New York Times article, NFL Introduces New Rules to Back It's Concussion Protocols reports that the league intends to punish teams that do not follow concussion testing measures and allow players to return to play prematurely by imposing heavy monetary fines and other penalties including losing draft picks.
The NFL has a long history of failing to provide adequate protection to players following a concussion. Just creating protocols with no enforcement is not sufficient.
The NFL still needs to go further and enforce its own rules pertaining to illegal hits and other conduct which promotes head trauma. Players who engage in prohibited conduct need to be ejected from the game, fined and perhaps even suspended for the remainder of the season. Brain injuries and conduct that causes these injuries must become a league priority. Five yard penalties are not enough.
A new study establishes lasting structural damage to brain long after concussion symptoms improve. You can read further information here: Brain changes persist in student athletes six months after a concussion, study suggests
The Congressional Brain Injury Task Force in association with the Brain Injury Association of America have scheduled a Congressional briefing: Women and Traumatic Brain Injury: A Frontier Yet to be Explored for Tuesday, June 14, 2016 from 2:30 pm - 4:00 pm at the Rayburn House Office Building.
NFL: Did they get away with "murder"-- NFL Settlement Upheld by Third Circuit Court of Appeals this afternoon
Unfortunately, the Third Circuit Court of Appeals this afternoon denied the request for an En Banc hearing to re-examine the settlement reached by the NFL and the class action attorneys purportedly representing the interests of 20,000 players. Any chance of the Supreme Court agreeing to hear this case is slim to none. What does all this mean? It means that the truth may never be told and the NFL is getting away with "murder"? With this decision the truth may never be discovered regarding what the NFL knew, when did they know it, and how did they hide it? Read story on line in New York Times. Appeals Court Won’t Revisit N.F.L. Concussion Settlement
We have been requested to circulate the following action alert by the Brain Injury Association of America (BIAA)
Brain injury advocates have helped get the Advancing Research for Neurological Diseases Act (S. 849) further than it has ever advanced in the U.S. Senate. This bill would establish a data collection system to track the incidence and prevalence of neurological diseases including brain injury. Having passed committee unanimously in February, the next few weeks are critical in determining whether the Senate will bring the bill-along with other medical innovations bills-to the floor for a vote.
Email or call your U.S. Senators today to urge them to continue working in a bipartisan fashion to bring the medical innovations bills-including S. 849-to a vote. To find your Senators contact information including email address click here. Or call your Senators. Call the Capitol Switchboard at 202-224-3121.
Sample Email/Script Language
As a person with a brain injury or brain injury advocate or brain injury professional and constituent, I am contacting you today to ask that you help bring the Senate's medical innovations package to the floor and vote YES on the package. The policy proposals found in this legislation are bipartisan and were passed by the Senate's Health, Education, Labor, and Pensions (HELP) Committee. Of particular importance to people affected by brain injury and other neurological conditions and diseases is inclusion and passage of the Advancing Research for Neurological Diseases Act (S. 849).
Emerging therapies offer promise of cures for life-threatening diseases such as brain injury, Alzheimer's, MS, cancer, Parkinson's, and others. We are on the cusp of personalized medicine that takes into account a patient's unique genetic, environmental, and lifestyle factors. We must ensure research and regulatory institutions can keep pace. This pending legislation would streamline and modernize the biomedical research pipeline, and help bring new, safe and effective treatments and cures to Americans.
I am particularly grateful that the medical innovation bill includes S. 849-which would establish a data collection system to track the incidence and prevalence of neurological diseases. This system will provide a foundation for evaluating and understanding aspects of neurological diseases on which we currently do not have a good grasp such as the geography of diagnoses, variances in gender and disease burden-also helping expedite our path to cures.
I respectfully request you advocate to your colleagues to bring the Senate's medical innovations package including S.849 to the Senate floor and vote YES for this important legislation.
Your Name and Signature
Legislative News from the Brain Injury Association of America:
The United States Senate Committee on Commerce, Science, and Transportation, chaired by Senator John Thune (R-S.D.) passed the Youth Sports Concussion Act, S. 2508 out of the committee on Wednesday, April 27, 2016. The Youth Sports Concussion Act is sponsored by Senator Tom Udall (D-N.M.) and in the House of Representatives, Reps. Bill Pascrell, Jr. (D-N.J.) and Thomas J. Rooney (R-Fla.), co-chairs of the Congressional Brain Injury Task Force. BIAA thanks Chairman Thune, Ranking Member Nelson (D-Fla.), and Senator Udall for their leadership on moving this important piece of legislation forward.
The Youth Sports Concussion Act expressed the sense of Congress that the Consumer Product Safety Commission (CPSC) and the Federal Trade Commission (FTC) should review the National Academies' report on sports-related concussions and future research in such area for any matter that may impact products under the CPSC's jurisdiction or inform the FTC's efforts to protect consumers.
The bill makes it unlawful to sell or offer for sale in interstate commerce, or import into the United States for such purposes, athletic sporting equipment for which the seller or importer makes any deceptive claim with respect to the safety benefits of such an item. Violations shall be treated as unfair or deceptive acts or practices under the Federal Trade Commission Act. The bill sets forth the enforcement authority of the FTC. States may bring civil actions in federal court to obtain injunctive relief on behalf of state residents unless a civil or administrative action has already been instituted by the FTC. The FTC may intervene and appeal in state actions.
The Youth Sports Concussion Act is an important piece of legislation because it will protect our nation's youth who participate in sports related activities from concussions and other injuries by discouraging false advertising claims regarding protective equipment used in competitive sports.
BIAA and NASHIA recently spearheaded a letter of support to the Senate Commerce Committee to include the Youth Sports Concussion Act in the next executive session. Thirty six organizations signed on in support of moving this important legislation through the committee process.