6 posts tagged “injury”

Tackling brain illness, together

Posted September 4th, 2015 by

Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement:

Our brains need answers.

And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a friend or family member, need? It’s not just about researching better treatments or improving the diagnostic process for conditions like PTS and TBI. Rather, it’s about everybody coming together to share their own experiences with brain injury to help raise awareness and increase general knowledge about brain health. Tankmartin, a PTS member of PatientsLikeMe, is the centerpiece of the campaign. Read what he had to say:

If you’d like to participate in the #BrainsNeedAnswers campaign, visit One Mind’s website to learn more about how you can make a difference. And if you’re living with PTS, TBI or another mental health condition, reach out to others like you in the PatientsLikeMe community and find the answers to your own brain questions.

Don’t forget to share this post on Twitter and help spread the word for #BrainsNeedAnswers.


You are not alone in brain injury

Posted March 16th, 2015 by

#NotAloneinBrainInjury. That’s the overarching theme of the 2015 Brain Injury Awareness Month, organized by the Brian Injury Association of America (BIAA). 2.5 million Americans survive a traumatic brain injury (TBI) each year, and and it’s time to raise awareness for the 5.3 million people currently living with a brain injury.1

In addition, Wednesday, March 18 is “Brain Injury Awareness Day.” There are many different ways to get involved – you can share one of six promotional posters created by the BIAA, listen to several public service announcements and even get involved with the TBI Portrait Project.

Finally, don’t forget to share your support for TBI awareness on social media through the #NotAloneinBrainInjury hashtag. Just click on the Twitter icon below or spread the word on your Facebook page.

Our co-founder, Jamie Heywood, said it best when discussing PatientsLikeMe’s recent partnership with One Mind, a non-profit organization dedicated to benefiting all affected by brain illness and injury:

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions. Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

If you’ve been recently diagnosed with a TBI, join the more than 1,500 PatientsLikeMe members living with different traumatic brain injuries. The community is ready to answer any and every question you might have.

Share this post on Twitter and help spread the word for TBI.


1 http://www.biausa.org/brain-injury-awareness-month.htm


Give veterans access to the care they need

Posted March 11th, 2015 by

By Peter Chiarelli, retired U.S. Army general & CEO of our partner One Mind

As originally seen in the Washington Post

Soldiers listen as U.S. Secretary of Defense Ash Carter (not pictured) holds a question-and-answer session with U.S.military personnel at Kandahar Airfield in Kandahar February 22, 2015. (Jonathan Ernst/Reuters)

 

The high-grossing film “American Sniper” was nominated for an Academy Award for best picture, but it deserves higher honors for highlighting one of the greatest causes of casualties in our recent wars: post-traumatic stress (PTS).

The story of Iraq war veteran Chris Kyle, who was killed by a Marine veteran suffering from the effects of PTS and other mental-health problems, makes a powerful case that PTS needs to be a higher national priority. (You’ll note that I don’t include the word “disorder” at the end of PTS; the longer PTSD label actually discourages some service members from seeking treatment.) Since “American Sniper” debuted, Veterans Affairs and Defense Department leaders have been highlighting their programs for helping veterans diagnosed with PTS. But are those programs working?

In too many cases, the answer is no. Our PTS diagnostics remain crude, and no drugs have been approved specifically for treating the condition. Complicating matters, because of genetic and other differences among individuals, patients react differently to varying drugs and dosages. Finding the right mix can be a frustrating saga of trial and error. The wrong drug or dose can, if not caught in time, become a factor in other serious mental-health and behavioral issues, even including suicide.

It only makes sense that once Defense Department doctors identify an effective treatment for a service member, that same treatment should be available when the service member leaves active duty and moves to VA for care. More often than not, however, it is not.

The disconnect occurs because Defense has an all-inclusive drug formulary that allows clinicians to prescribe almost any medication approved by the Food and Drug Administration, while VA has a very limited formulary, primarily to control costs. Medically discharged service members who are given a 90-day supply of PTS prescriptions eventually must report to their VA medical facility for refills, where they are often denied — not for medical reasons but because the medications they rely on are not on VA’s approved list.

This is not a case of one prescriber issuing Bayer aspirin while another uses Saint Joseph. Service members whose symptoms are being controlled by specific anti-depressant, anti-anxiety or anti-psychotic drugs, as well as pain and sleep medications, are forced to give them up and search for a replacement — often a painful and dangerous process — simply because Congress has failed to require Defense and VA to harmonize their drug formularies.

Let me be clear: The problem is not that doctors within the two systems disagree over which drugs should be part of their formularies. Their hands are tied. They must operate within the rules set out by Congress.

Rather than repeating the laborious process of finding another drug that works, many veterans have told me they sought out private providers to fill their prescriptions, usually paying for their medications out of pocket. Imagine how they feel about VA when their first experience with the agency is a doctor telling them they cannot fill a prescription that has relieved their PTS symptoms for months or even years. In some cases, the veteran is not even given enough of the recommended drug to safely discontinue its use.

I have testified about this serious discrepancy, most recently as a member on the Military Compensation and Retirement Modernization Commission, and have discussed it privately with members of Congress. A few have said they will try to address the problem, but most have declined, citing the added cost to VA of a fuller formulary and the time the Government Accountability Office would require to determine the budgetary impact of such a change. Shouldn’t the long-term cost, danger and social impact of denying vital medications to veterans provide a sufficiently compelling reason for Congress to act?

The obvious solution is to include the same medications in both formularies. If this is not possible, Defense Department doctors should exhaust all the options available on VA formulary first before considering any drugs not covered by VA. If neither of these options can be adopted, Defense doctors should at least warn service members that their current prescriptions will be unavailable in the VA system.

This problem needs to be fixed immediately. A directive released by VA in late January seeking to address the problem without correcting the misaligned formularies contains too many loopholes and is totally inadequate. We need a solution, and not a patch. Chris Kyle’s death underlines the urgency of providing effective treatments for PTS. We can start by getting the Defense and Veterans Affairs departments on the same page.

Learn more about One Mind.

Read what the PatientsLikeMe community is saying about Peter Chiarelli’s article.


Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military.

Like many others who are living with chronic conditions, the injuries our military men and women sustain are not always visible. Thousands of veterans are affected by post-traumatic stress disorder (PTSD), 30,000 have been diagnosed with a traumatic brain injury (TBI) since 2000 and many others are living with depression. Sometimes their symptoms don’t even manifest until many years after their service.

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

If you’re looking to learn more about US veterans, head to your nearest book store and grab a copy of “For Love of Country,” Howard Schultz’s and Rajiv Chandrasekaran’s new book (just released on November 4). Check out the video synopsis below:

 

There’s also the Concert for Valor today – it’s a free live event that is being organized on the National Mall in Washington, D.C. for veteran’s awareness. If you can’t make it in person, tune in on iHeartRADIO.

If you’re a veteran living with PTS or TBI, you can find others and connect to people who understand what you’re going through on PatientsLikeMe. There are more than 4,000 of members in the Veterans Forum, and every day, veterans are learning more about their health and the best ways to cope. Share a bond, and live better, together.

Share this post on Twitter and help spread the word for veterans.


One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury

Posted June 12th, 2014 by

Collaboration Will Uncover Real-World Experiences, Generate Patient Data That Improves Daily Living and Overall Understanding of Conditions

SEATTLE, WA—June 12, 2014—One Mind and PatientsLikeMe announced a new multi-year collaboration to help the millions of people worldwide who are experiencing post-traumatic stress (PTS), traumatic brain injury (TBI), or both. The two organizations will work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

Building on the headway One Mind has made in seeking out real solutions for patients, One Mind CEO, General Pete Chiarelli, U.S. Army (Retired), said the collaboration will address longstanding issues for people with all forms of PTS and TBI. “You only have to look at the way we diagnose and treat people to know that we’re decades behind in our understanding of these conditions. We have an amazing ability to save soldiers on the battlefield, but we don’t do a good job addressing their invisible wounds. And we prescribe a mix of off-label drugs because nothing has been developed specifically for their condition. We need to look to the future to improve outcomes and lives, and this innovative partnership will do just that.”

Almost 8 percent of adult Americans will experience PTS (including the disorder known as PTSD) at some point in their lives, according to R.C. Kessler’s findings from The National Comorbidity Survey (NCS) Report. In addition to veterans, victims of sexual assault and others who have experienced a traumatic event may develop PTS. TBI is broadly defined as an alteration in brain function or pathology caused by an external force that can occur at home, at work, during sports activities, or on the battlefield. In 2009, the Center for Disease Control and Prevention reported that there were at least 2.4 million emergency department visits, hospitalizations, or deaths related to TBI across the country, and that the leading causes of TBI are accidents, sport-related injuries or other incidents.

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

One Mind is also supporting multi-center clinical studies called TRACK-TBI and CENTER-TBI, which will follow thousands of TBI patients over three years. Both studies enroll patients within 24 hours of their injury and are focused on improving treatments through developing new diagnostics tools such as imaging protocols and biomarkers. Heywood added that in the future, the patient-reported data from the TBI community on PatientsLikeMe may be combined with the TRACK-TBI and Center-TBI data, as well as other studies, to create a rich and unprecedented set of information about people’s real-world experiences.

One Mind and PatientsLikeMe are actively seeking nonprofit and other partners to grow the online community and learn together about people’s real-world experiences. People living with any form of PTS or TBI can join fellow members of the PatientsLikeMe community today to become early users of the site and provide feedback on future customizations for the community. Go to www.patientslikeme.com for further information.

About One Mind
One Mind is an independent, 501(c)(3) non-profit organization dedicated to benefiting all affected by brain illness and injury through fostering fundamental changes that will radically accelerate the development and implementation of improved diagnostics, treatments, and cures; while eliminating the stigma. One Mind believes in open science principles and creates global public-private partnerships between governmental, corporate, scientific, and philanthropic communities. Visit us at www.1mind4research.org or follow us via Twitter or Facebook.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

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CONTACTS

ONE MIND                                                              
Brooke Whitney
Office: +1 206.946.1768
brooke.whitney@1mind4research.org           

PatientsLikeMe
Margot Carlson Delogne
Mobile: +1 781.492.1039
mcdelogne@patientslikeme.com


What do you know about brain injuries?

Posted March 23rd, 2014 by

The Brain Injury Association of America (BIAA) explains it simply – a brain injury can happen anytime, anywhere, to anyone. That’s why March is Brain Injury Awareness Month. It’s time to learn more about traumatic injuries that can affect the brain and nervous system and share our experiences to increase awareness about everything from concussions to long-term disabilities.

If the skull gets hit hard enough, the brain can experience concussions, contusions and other types of traumatic conditions. It’s a little different for anoxic or hypoxic brain injuries – these happen when the brain receives too little oxygen, or none at all.

This month, there are plenty of ways to raise awareness about all types of brain injuries.  Reach out to your state’s BIAA affiliate to see if there are any local activities to participate in. The BIAA also has a great Brain Injury Awareness Month logo. Share it on Twitter and Facebook to spread the word on social.

If you’ve been recently diagnosed with a brain injury, you can visit the TBI community on PatientsLikeMe and share your experiences in the injuries and traumas forums. Over 900 TBI members are tracking their symptoms and sharing information about their treatments –join in today.