Epilepsy After TBI May Offer Pathway for Cure

In the United States, about 1 in 26 people will develop epilepsy at some point in their lives.  Though this is a staggering number as it is, traumatic brain injury can greatly heighten the risk of developing this seizure disorder.  According to the NIH, “Seizures…happen in 1 to 5 of every ten people who have had a TBI, depending on where the injury occurred in the brain.”  Though this statistic is very vague, even the fact that ten percent of brain injured individuals may develop epilepsy is a horrifyingly large number.  However, the reality of this awful statistic may present an opportunity for a broad range medical breakthrough.

A TBI is caused by a single moment, a single jolt to the brain.  “Because the precise time of the epilepsy-causing insult is known, traumatic brain injury offers the best opportunity for determining how epilepsy develops…,” says Dr. Jerome Engel, Jr., professor of neurology, neurobiology, and psychiatry and biobehavioral sciences at UCLA.  That means that a head injury, a single moment that severely disrupts one person’s life, may allow doctors to find a cure for millions of others.

In this UCLA-led study for a cure, a.k.a. Epilepsy Bioinformatics Study of Antiepileptic Therapy (EpiBioS4Rx), “the research team will identify biomarkers associated with the development of epilepsy and develop therapies to prevent or modify the condition.”  Specifically, along with UCLA, the project will be a cooperation of UCLA with 13 centers for traumatic brain injuries and seven preclinical research centers.  The NIH has pledged a grant of $21 million for the five-year study, $7.5 million of which will be granted to UCLA.  Led by so many world-class neuroscientific teams and with the government’s financial assistance, EpiBioS4Rx may give hope for a cure, for an incurable disease.

Link: Rights Come to Mind

Dr. Joseph J. Fins is a nationally-known and well-esteemed physician specializing in neuroethics.  Specifically, he is, “focused on advancing the care of patients with severe brain injury and bringing the fruits of neuroscience to a very marginalized population”.  Beyond heading a Division at the New York Presbyterian Hospital and Cornell and other prestigious appointments, he was appointed by President Bill Clinton to The White House Commission on Complementary and Alternative Medicine.

In 2015, Fins published a book, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness that encapsulates his interviews with more than 50 families, who are all personally affected by severe brain injury.  A particular story in an article about the book caught my eye: “Several years ago a father approached me, concerned about the care his son was receiving. The son had been in a car accident… was placed in a nursing home…  The father feared his son was being ignored or, worse, left in pain or distress.”

As with many brain injured individuals, I have a similar story.  To be candid about my experience, within a day or two of my brain injury, because of the severity of my injuries, the doctor handling my case asked my parents if they would sign off to allow my organs to be donated upon my imminent death.  Fortunately, my parents said no and immediately requested another neurologist to handle my case.  I was lucky to have parents who were so forthcoming regarding their expectations from my doctors.  The article, Why advances in treating those with brain injuries require advances in respecting their rights, shows that the mentioned father loved his son very much, but it does not state what happened with his son beyond the father’s fear.  (One can only hope for the best.)  I find that it advances understanding and can even be reassuring to learn about others’ brain injury survival stories.

The world seems to be gaining more knowledge of brain injury.  For example, the recently passed federal 21st Century Cures Act allocates $1.5 billion for brain research.  “New treatments bring new hope,” and hopefully, more understanding and acceptance.  As a brain injured person myself, I definitely plan on reading this book.

Arizona Proposed Helmet Law Heads Nowhere

On Wednesday, January 18, the Arizona House Transportation and Infrastructure Committee made a unanimous call against House Bill 2046, a “helmet law” proposed by Rep. Randall Friese.*  Specifically, the bi-partisan committee voted against a law that would require adults driving motorcycles, all-terrain vehicles or motor driven cycles to wear helmets or to pay a fee into a special trauma-injury fund.

Regarding this rejection, many of the bill’s critics said that what Arizonians need is simply better training.  Another critic, “Rep. Noel Campbell, R-Prescott, who chairs the [Committee], said he personally wears “every piece of equipment you can get on” when he rides his motorcycle. But he said a better legislative approach would be incentives for riders to protect their heads, rather than penalties for those who do not.”  I disagree, rewarding someone just because they are “safe cyclists” is not the answer.  (Should you really be rewarded for not hitting another vehicle?)  The idea proposed by other critics, better and more thorough training for cyclists, may be a better solution.

Note that this is not the first time that the Arizona House has rejected a helmet law, proposed by Friese.  “When [Friese] introduced this bill two years ago, the first thing [he] heard was, ‘It is my right to ride my bike without my helmet.”  However, in his view, “I don’t believe it’s a right. I believe it’s a privilege.”  Whatever it may be, a right or a privilege, riding unhelmeted is irresponsible.

* Rep. Randall Friese, D-Tucson, definitely has a different perspective than many members of the Transportation and Infrastructure Committee and of the State Assembly at large.  Friese is a trauma surgeon.  Presumptively, he has operated on head-injured motorcyclists.  He has seen first-hand what a severe motorcycle accident can do to the brain and to the person.  Having directly viewed the brain after such an incident definitely gives him a unique, and more cautious, perspective.

A Penny for Your Brain

Imagine if all you had to do was carry around a penny to know if something has negatively affected your brain.  The Office of Naval Research (ONR) is sponsoring the development of such a product, called BLAST (Blast Load Assessment Sense and Test).  Specifically, the ONR, in association with NASA, the University of North Carolina, and Applied Research Associates Inc., a New Mexico-based research firm, is in development of a coin-sized device that would be no burden to the soldier and can be worn on the helmet or body armor, and can identify brain injury, letting the soldier know if they should get immediate medical help.  As Dr. Timothy Bentley of the ONR says, “A system like BLAST is vitally important because it can help recognize the signs of TBI early and tell warfighters they might need medical attention.”

While it may take 5 years to be fully developed and tested, the prospect of such a product has great possibilities, both in and outside of the armed forces.  For example, brain injury in American football has been big news in the past several years, and a coin-sized brain injury “detector” attached to players’ helmets could aid in the quick diagnosis and treatment of such an injury in football and other sports where helmets are worn, such as hockey.  Beyond that, the possibilities are endless.

For more information:

Navy BLAST Sensor Development Looking to Improve Data on TBIs, Military.com

BLAST: Greater Speed, Accuracy in Recognizing Brain Injury, AMERICA’s NAVY

Naval Research seeks to tackle traumatic brain injury, MilitaryTimes

 

 

 

Michigan Helmet Law Revision May Save Lives, But Hurts Heads

“Make sure you wear your helmet.”  Many people recall this statement from their parents when they said that they were going outside to ride their bicycle.  As an adult, the government plays the role of a parent about helmet safety issues.  While 3 states have no law about helmet use for motorcycle riders, “28 states require some riders to wear helmets; and 19 states and the District of Columbia require all motorcyclists to wear them.”  In April 2012, Michigan law changed from requiring all riders to wear helmets to merely some.  The purpose of the loosening of the helmet law was to increase tourism to the state.  Unfortunately, all it increased was the number of head injuries.

As the Michigan Secretary of State says, “Michigan law now allows motorcyclists to decide for themselves…”  Granted, there are certain legality conditions that must be met, but for most cyclists, helmets are optional.  Many may find it surprising and positive that some studies show that the revision of the Michigan helmet law has had no effect on, or even lessened the number of motorcycle-related fatalities. However, the law has resulted in a 14% increase in head injuries.  Specifically, reported mild concussions fell by 17%, “while the proportion [of injuries] due to skull fractures increas[ed] 38% during the same period.”

Ultimately, whether or not the government should be telling you to wear a helmet is debatable.  However, there can be no debate on the fact that any law that increases the chance of a head injury is negative.

Another Obamacare?

On December 13, 2016 President Obama signed H.R.34 and so, the 21st Century Cures Act became law. Sponsored by Rep. Suzanne Bonamici* (D-OR) and co-sponsored in a bipartisan manner, many say this is the biggest legislation of Obama’s presidency, after the Affordable Care Act.  However, just like the Affordable Care Act, the bill has its detractors.

H.R. 34 first was introduced on January 6, 2015, “to accelerate the discovery, development, and delivery of 21st century cures, and for other purposes,” as the bills synopsis states.  The 21st Century Cures Act addresses mental (neurological) disorders, such as Alzheimer’s, trys to find a cure for cancer and pays special attention on America’s current opioid epidemic.  Though many articles do not mention that H.R. 34 specifically supports tbi research, an overview of the bill shows that of the $6.3 billion allocated to medical research, $1.5 billion are alloted to the Brain Research Through Advancing Innovative Neurotechnologies Initiative (BRAIN Initiative).  (As I note in a previous article, BRAIN is associated with tbi research.)  “Congressman Frank Pallone, Jr. (D-NJ), ranking member on the House Energy and Commerce Committee, applauded President Obama for signing the 21st Century Cures Act into law… [as he says] the 21st Century Cures Act will advance medical research, fund the fight… towards mental health reform. As a leader in medical innovation, New Jersey and [medical] institutions… stand to benefit from 21st century cures investments in medical research.”

Beyond research, though, the bill focuses on pharmaceuticals.  It is with this that many take issue.  Currently, the FDA has to approve the efficacy and safety of all medications or medical devices before they go on market.  Going through the government’s red tape can take years.  “Under the Cures Act, companies will be allowed to submit observational data and ‘in house’ registry data as evidence for the safety and efficacy of a new product.”  The bill’s proponents attest that this will significantly reduce the cost of medication, thereby promoting research and development.  Detractors, like myself, worry that getting rid of the “safety and efficacy” red tape may mean less safe and ineffective drugs.

*Another bill, also called the 21st Century Cures Act (H.R. 6), was introduced by Rep. Fred Upton (R-MI) on May 19. 2015.  In Uptons words, “21st Century Cures is an innovative game-changer and a truly once-in-a-generation opportunity to bring our healthcare system light years ahead of where it is today.”  The last action on this bill was on July 13, 2015, when it was referred to the Committee of Health, Education, Labor, and Pensions by the Senate.  (Word-for-word, H.R.34 and H.R.6 have the same synopsis, so they essentially seem to be the same bill.)

John Glenn: Astronaut, Politician and TBI Survivor

This past Saturday, December 17, was the memorial service for aviator, engineer, astronaut, and United States Senator from Ohio, John Glenn.  The first man to orbit the Earth, metaphorically left the world on December 8, 2016.  What many are not aware of, though, is that beyond his time in space, Glenn’s success in the U.S. Senate occurred after he had suffered a traumatic brain injury.

In the past, I have written about the issue of space travel and brain injury.  “On February 20, 1962, [Glenn] flew the Friendship 7 mission and became the first American to orbit the Earth and the fifth person in space.”  However, reports and profiles show that Glenn did not suffer any mental calamities during his time working at the National Aeronautics and Space Administration (NASA). In 1964, however, Glenn started his political career, announcing his candidacy for Senator in his home state of Ohio.  Soon after, though, he withdrew his candidacy, as he was injured in a bathroom fall in his Ohio home.  Glenn’s hit to his head was not a mere bump because, as a biography on the Ohio State University website says, “The injury left him bedridden with severe vertigo and unable to campaign.”  Presumptively, vertigo was not the only issue the Glenn had after his fall, even ten years later New York Times referred to it as a “serious head injury”.  However, at the time, the media was not as intrusive as it is now, so even celebrities had some degree of privacy.*

Glenn devoted his life to government service.  Before his time at NASA, he served in the Marines in World War II and the Korean War.  After his time in space, and after his recovery from a TBI, he was a Senator for Ohio for 25 years.  As NASA writes in Glenn’s online biography, “John Glenn, became a national hero and a symbol of American ambition,” after he became the third American in space and the first to orbit the Earth.  The fact that he embarked on a successful political career following a traumatic brain injury makes Glenn an inspiration to the disabled population, too.

*For example, “in 1970, Glenn ran a campaign that relied on his celebrity and patriotic image to draw crowds to his stump speeches. He lost…”  As a personal note that you may disagree with, I ask:  Using celebrity, instead of substance, as the cornerstone of a campaign – who does that remind you of?  (In his later, successful campaigns, Glenn campaigned with celebrity AND substance.)

NHL Commissioner Bettman Denies the Obvious

Hockey is, essentially, thought of as America’s winter sport.  This year, the National Hockey League started its play for the 2016-2017 season, the 100th season of the NHL (99th season of play), on October 12, 2016 with four games in which the Ottawa Senators, the Edmonton Oilers, the St. Louis Blues and the San Jose Sharks won.  Since the teams have already started their season, it is relevant now to look at what the government is doing to support safe play for professional and amateur ice hockey players.

This year, on October 6, four members of the Legislative Committee on Energy and Commerce sent a letter to Commissioner Gary Bettman about the issue of CTE, brain injury, and the NHL.  Specifically, Hon. Frank Pallone, Jr. (D-NJ). Hon. Gene Green (D-TX), Hon. Diana DeGette (D-CO) and Hon. Jan Schakowsky (D-IL), wrote to Bettman, “to request information on the National Hockey League’s (NHL) policies and procedures for the prevention and treatment of concussions and related head injuries…. [as] there is significant scientific evidence to support a link between the types of concussive and subconcussive hits inherent to the game of hockey and brain injury.”  (It seems evident to me that having your head hit repeatedly thoughout the season will result in head trauma.)  The Committee members also noted that participation in contact sports as a youth may increase the likelihood of developing CTE.

In response, on October 24, Bettman wrote a letter to the Committee that stated the National Hockey League/National Hockey League Players’ Association is very concerned about the health of its players.  Prior to this season, for example, the NHL updated its concussion protocol so that it is now mandatory to remove an athlete from play if the coach sees that the player has been physically or neurologically hurt and to then get the player evaluated by a certified athletic trainer.  However, the Committee says that Bettman’s letter of response sounds, “a little bit like the tobacco industry, when it comes to linking concussions with Chronic Traumatic Encephalopathy (CTE).”

Ironically though, just as there are some Congress members who are smokers, annually there is a Congressional Hockey Challenge.  Begun in 2009, “The Congressional Hockey Challenge is a 501(c)(3) organization committed to ensuring that the incredible and dynamic sport of ice hockey is accessible to everyone who wants to play.”  On the Congressional games website, one can note that the game is played for lawmakers’ enjoyment, yes, but also to benefit charity.  This year, the game was played on March 2nd and had five Congressmen on the ice.  Even Bettman, who criticizes Congress, as the above paragraph notes, attended the event in support of the team and the cause.

Personally, just as I believe should be true for all other sports, I do not believe it should be the role of Congress to determine the rules of professional sports, especially one that they enjoy themselves.  Education is the key.  Players need to be informed, by the team and by former players who have suffered the horrible lasting effects of brain injury, of the possible consequences of violent defense in the game and post-game fights.  More so, the National Hockey League needs to fully enforce its concussion/head injury rules.

Link: A Head for the Future

This past Friday was Veterans Day, a time to honor soldiers and veterans who fought for the principles upon which America was founded.  In commemoration, I searched for information about the military and brain injury.  It was upsetting that my search resulted in so many news articles, at least one article per day in the recent past.  However, some of these daily articles involved efforts of the military to help those wounded in service, such as that of a retired General who just received an award for his efforts related to brain injury,  and inspiring stories of recovery, such as one involving the healing support of trained dogs.

Of particular interest was the website A Head for the Future.  The site, a collaboration of the Defense and Veterans Brain Injury Center (DVBIC) and the Defense Centers of Excellence, is associated with every branch of the military.  On the front page of the site, one can find links to sections on how to PREVENT, RECOGNIZE, RECOVER and GET INVOLVED and a section called MATERIALS, in which one can view and download facts about brain injury.  Featured on the site is a BLOG, where veterans and their families can submit personal stories of brain injury to the DVBIC.  The page also allows visitors to view videos featuring veterans telling their stories on camera.  These stories, both those in print and on video, are quite poignant and worth viewing.

Wait and See

Based on his statements and actions, a Trump presidency with a Republican-controlled Congress may seem to be the worst election outcome possible for disabled Americans.  In a poll cited by CNN, for example, people agree that mocking a reporter with the joint condition arthrogryposi was the most egregious error that Trump made during his campaign.

However, those worries may not entirely be warranted.  Trump is a businessman and a television personality.  He says what will get him a deal, acts in a way to give him an audience and, in the case of the election, promises what will get him votes.  For example, one of the hallmarks of Trump’s campaign was his promise to repeal and replace the Affordable Care Act.  Since winning the election, though, “Trump [has] said he would [at least] like to keep the portions of the law requiring coverage of pre-existing conditions and children living at home under the age of 26.”  From what I can determine, Trump simply wants his name tied to a major legislation.  (He wants to keep some of the principles of Obamacare, but replace the wording with some synonyms, so that people will call it Trumpcare?)

As for the Republican-controlled Congress, it is good to remember that most people, including Senators and Representatives, are related to or have some association with a disabled person.  During the Obama Administration, almost half of the brain injury-related legislation that became law were sponsored by Republicans, specifically 8 of 20.  As I noted in the past, Republicans do care.  While Hillary Clinton may have won the popular vote, it is best not to presume that a Trump presidency will negatively impact those with a brain injury or all of those with a disability.