Friday, November 11, 2016

Renowned Gulf War Illness Researcher Urges Americans: Don't Forget the Men and Women of the "Forgotten War" on Veterans Day

Beatrice Golomb is one of my heroes. While you may not immediately recognize her name, she is one of the world's leaders in the study of the causes of and potential treatments for Gulf War Illness (GWI), the confounding condition that plagues hundreds of thousands of our veterans who served in the 1990-1991 Gulf War.

The Gulf War, also known as Operation Desert Storm, has been rightly called "The New Forgotten War." People think because the conflict was so short that there were relatively few casualties. But GWI, which studies now show was caused by our troops’ exposure to a variety of toxic chemicals while on active duty in the Gulf, has been as devestating to our veterans as exposure to Agent Orange was during the Vietnam War..

Gulf War Illness is a horrible condition that is accompanied by a large number of often debilitating symptoms. And it's shamefully taken the Department of Veterans Affairs (VA) more than a generation to even begin to adequately recognize that this condition is real and that it is affecting the lives of so many of our brave men and women who honorably served. The VA, at virtually every turn, has downplayed GWI and accused our veterans who suffer from it of being liars.

Golomb, who's leading the way to find treatments for GWI, is my favorite kind of scientist. She cares about people. She gets it. She understands that her work in the lab has human, very real-world ramifications and potentially improves health. She is relentless in her pursuit of knowledge that will help our veterans live better lives. 

Golomb, a professor of medicine at the University of California, San Diego (UCSD), served as a primary care physician for a panel of veterans for more than 15 years, and has served as a health consultant at RAND. 

Her research is broad and accomplished, but she is best known for her work on Gulf War illness, statins, placebos – and chocolate. Dr. Golomb has a very urgent message to share, and I’m honored to have her as our guest blogger on this Veteran’s Day 2016:


Beatrice Golomb, MD, PhD
This Veterans Day is a good opportunity to remember veterans of the 1990-91 Persian Gulf War, who have borne singular challenges. Of the 700,000 US personnel deployed in that War, an estimated one-quarter to one-third of them developed chronic health problems, attributable to their service, that evidence shows have not abated in the 25-plus years that have followed.

Fatigue, muscle pain, weakness, cognitive challenges, gastrointestinal, sleep and respiratory problems are among the symptoms most often experienced. Characteristically, multiple domains are affected in veterans with “Gulf War illness” (GWI), with symptoms that are moderate to severe.

Rates of this symptom complex are markedly higher among 1990-91 veterans who were deployed to the Gulf than among veterans who weren’t deployed, or who were deployed in other conflicts. Though routine blood tests are normal, affected veterans show objective changes in a spectrum of tests, ranging from autoimmune and “autonomic” functions (like heart rate control) to clotting and inflammation.

Studies have also shown heightened risk of health conditions, some serious, like ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease, a fatal muscle-wasting condition), and, for some, brain cancer.

A quarter century has elapsed since the Gulf War, and many who served feel they are the forgotten veterans – and feel an urgency to see GWI understood. The Holy Grail to these veterans is effective treatments, to alleviate the problems they developed, as a consequence of their service to their country – while they are alive to reap the benefits.

GWI is not synonymous with the signature conditions of more recent conflicts. Post-Traumatic Stress (PTSD) is due to psychological injury; Traumatic Brain Injury (TBI) to mechanical injury (e.g. blast injury from improvised explosive devices or IEDs).

For GWI, convergent evidence implicates chemical injury. Stress does not significantly relate to GWI, while again and again, key chemical exposures do. The strongest evidence implicates “acetylcholinesterase inhibitors” (“AChEi”), a class of chemicals that encompass nerve gas (~100,000 were exposed when US personnel demolished an Iraqi chemical munitions depot at Khamisiyah), pesticides, especially organophosphates and carbamates, used widely and sometimes overzealously; and a nerve agent pretreatment pill, pyridostigmine bromide (“PB”) given to ~250,000 of those 700,000 deployed.

It was thought that PB might protect soldiers in event of a nerve agent attack. My 1999 RAND report showed these pills would be expected to harm rather than protect – for all nerve agents except possibly one, which Iraq did not have. This led to a change in US military policy regarding use of this drug, which subsequent deployed US veterans have not taken.

The ground war for the 1990-91 conflict lasted just four days, and rates of PTSD were lower than in veterans of other conflicts. While psychological stress has no relationship to GWI in analyses that adjust for other exposures, the aforementioned chemicals show a clear “dose-response” relationship to GWI: 

Those taking more PB pills become ill more, and became more ill; those closer to the nerve gas demolition show more brain abnormalities on MRI imaging, worse cognitive function, and increased risk of brain cancer.

Specific enzymes detoxify these chemicals: genetic variants of these enzymes that are less good at detoxifying (resulting in a higher de facto exposure), are linked to heightened risk of GWI. Because veterans declared their exposure and health status without knowing their genetics; and because veterans cannot manipulate their genetics based on suggestibility or media influence, which some have tried to claim accounts for GWI, this is especially powerful evidence for a causal link to chemical exposure.

Evidence now shows that civilians occupationally exposed to these chemicals – again, particularly those whose genetics heighten their vulnerability to these toxins – show similar health problems, providing important “triangulating” evidence. 

This underscores that research to understand GWI has ramifications extending beyond Gulf War veterans to other military, and beyond military to civilians.

New life has breathed into Gulf War research in the last few years, via the Department of Defense's (DoD) Congressionally Directed Medical Research Program on Gulf War illness. This has enabled many qualified researchers with good ideas, not just those with >5/8 VA appointments, to strive to understand this condition. 

Disclosure: I am a recipient. My group, for instance, has shown that affected veterans have altered lipids, and defective production of cell energy - dysfunction of “mitochondria," and that their symptoms and function improve with coenzyme Q10, a dietary supplement that supports energy production. Our current projects follow-up on these, assess effects of treatments tried, and look at genetics of antioxidant toxin protection.

In my view, and the view of many veterans, the DoD is making more progress in less time with far less money, by coupling a will to understand the issue with an approach that actually heeds the input of those with the greatest stake – affected veterans – in funding decisions. “Relevancy review” by Gulf War veterans complements the separate scientific review – something I think should be required for all funding programs.

These veterans’ service came at a great price. Those who might wish to help affected Gulf War veterans can do so in several ways, by helping in research, e.g. as healthy control subjects, volunteering, or donating to help defray costs for veterans’ participation in, or travel to, research.

Those who might wish to help, or learn more, can call 858 558-4950 x201.

Thursday, November 3, 2016

EXCLUSIVE: The Powerful, Untold Story Of Personal Triumph For 2016 World Series Star Anthony Rizzo

Anthony Rizzo, a winner on and off the field
The 2016 World Series is already being hailed as one of the greatest Fall Classics of all time, with easily the finest game seven in recent sports history. But for me, at the heart of this epic, hard-fought battle between the Chicago Cubs and Cleveland Indians is a powerful, poignant tale of personal triumph that has almost nothing to do with baseball.

Anthony Rizzo, the Cubs' soft-spoken slugger, is a household name now. But not a lot of folks know what Rizzo is really made of, and what he's really been through off the baseball diamond. 

Anthony has faced real adversity in his life. At age 18, he was told he had Hodgkin's lymphoma. Naturally, cancer rocked his world. But he never gave in. He never gave up. And since he completed his chemo and was told he was in remission, he has quietly become a deeply committed advocate for his fellow lymphoma patients, especially the kids.

I was honored to be among the first and only writers to talk to Anthony in great depth about his battle with Hodgkin's lymphoma. The interview was for my book, "Hope Begins in the Dark: 40 Lymphoma Survivors Tell Their Exclusive Life Stories."

The book takes an unflinching look at how these folks, including many celebrities who rarely talk publicly about their cancer, fought and beat various types of lymphoma, one of the fastest-rising cancers in the US and across the globe. 

I've battled the disease three times myself in the last 20 years, and now I'm in my fourth battle. The lymph nodes are stable, but they are there. They could start growing at any time. Meantime, I try to make the best of every day.

When I was diagnosed with stage IV follicular non-Hodgkin's lymphoma 20 years ago this month, I desperately wanted to read a book with stories of people who survived lymphoma. But that book didn't exist. So I wrote it.

And among all the inspiring and heroic folks I met while writing the book, Anthony was and is one of my favorites. 

Tough but humble, passionate but soft-spoken, intense but amiable, he is of course a gifted athlete. And I wanted people to know that even the strongest, most able-bodied people in the world can get cancer. It doesn't discriminate. 

Anthony seems to live by Teddy Roosevelt’s motto, “Speak softly and carry a big stick.” I his case, of course, it's a bat. 

An old-school, aw-shucks kind of guy, a throwback in the best of ways, Anthony was tearing it up in Triple A when he was called up in June 2011 to the big-league San Diego Padres. He was subsequently traded to the Chicago Cubs – big mistake, Padres! - and he’s been punishing opposing pitchers and making spectacular catches at First Base ever since.

He’s obviously one of the Cubs’ leaders and best players and one of Major League Baseball’s newest and brightest superstars. But what impresses me most about this stoic young man is his kindness off the field.

Anthony has spent a good portion of his time since he battled and beat lymphoma visiting sick children in hospitals and cancer clinics. 

In 2012, he founded the Anthony Rizzo Family, a non-profit organization benefiting cancer research and the families fighting the disease. 

Another thing that impresses me about Anthony is his inner strength and positive attitude. 

He told me that he never believed that cancer would defeat him. Yes, he was concerned, because he is human. But he always believed he would play baseball again after his cancer treatment concluded. 

The term “role model” is overused in professional sports, but this guy is one.

When we talked, Anthony told me about how Jon Lester, the former Boston Red Sox ace who is now Rizzo's teammate in Chicago, helped Rizzo when he was first diagnosed. Lester, too, is a lymphoma survivor.

So is Larry Lucchino, the former CEO of the Red Sox who is also profiled in our book. So is Dave Roberts, the former Boston Red Sox player and now manager of the Los Angeles Dodgers. And so is John Farrell, the Red Sox manager. Unbelievably, all are lymphoma survivors. 

Below is Anthony's story, excerpted from our book:

"My name is Anthony Rizzo. I play first base for the Chicago Cubs. I was raised in South Florida in a suburb of Fort Lauderdale called Parkland. I have one older brother, he doesn’t play baseball, he’s a working man. I’ve played baseball most of my life.

"When I was 18 and playing Single A ball for the Boston Red Sox organization in Greenville, Southern Carolina in the Atlantic League, my legs began to swell, and I started feeling super tired. I didn’t think much of it at first and didn’t want to say anything, but these symptoms didn’t go away. I was swelling pretty badly in my legs, and I gained 15 pounds in a week. That was a real red flag to the trainer on staff, and eventually the Red Sox flew me to Boston and ran some tests. 

"That’s when I was diagnosed with Hodgkin’s lymphoma. It was a shock. When we found out I had lymphoma, Larry Lucchino (CEO of the Red Sox and a lymphoma survivor himself who is also profiled in this book) sent me a letter in the mail expressing sympathy. Jon Lester helped me out, too. 

"Jon is a pitcher for the Red Sox who is also a lymphoma survivor who won a World Series game after his treatment. Larry and John both prepped me on what to go through, what to expect, and how to handle everything. It helped to have people who worked in professional baseball to support me, people who had already been through it

"I was inspired by their words, but the truth is I was really focused on myself and just getting through it.

"When I played for the San Diego Padres, Dave Roberts, who was also a Red Sox player before becoming a Padre and is a lymphoma survivor, and I shared stories about our lymphoma. But he and I are alike in the sense that we are just happy to be back on the field.

"The most inspirational people in my life would have to be my grandparents. They were always there for me, along with my brother, and my mom and dad. My grandparents were so close to us, they were always there. My grandmother was battling breast cancer at the time, but you could never tell even though I know she was in great pain.

"The lymphoma diagnosis changed me as a person in the sense that it made me realize that you can’t take anything for granted. You can be playing this game one day and then the next day it can all be taken away from you, just like that. That thought of never playing again, well, yes, it crossed my mind, but as I tell everyone, I knew I’d be back. I knew I’d play baseball again.

"Having lymphoma really has taught me to never, ever take things for granted. And the thing is, what I went through was easy compared to what others are going through. I’ve visited lots of kids in hospitals and elsewhere, kids who have autism and kids who are handicapped. What I went through was easy compared to what they go through.

“I had what was called ADBVD chemo. It wasn’t fun. I had it every other week, every Tuesday, and for the next five of six days after each treatment,

"I was pretty much totally out of commission. I’ve learned a lot about myself and about life since my diagnosis, and about lymphoma. l had no idea about lymphoma before I was diagnosed, I knew the word, but that’s about it. I didn’t know much about cancer or chemo, I had no idea about how any of that went.

"I was very fortunate. I had some of best doctors in world. I was treated at Massachusetts General Hospital. I was also fortunate that the Red Sox helped me out so much. They even set me up with a Florida doctor. He’s still my oncologist. My home is still in Florida, but I love Chicago and I love being a Cub.

"My words to live by are simple: live strong. I’m a big believer in the philosophy of Lance Armstrong’s foundation. I wear the yellow wristband every single day, on the field and off the field. I also really appreciate the fans. The fan mail was great even in Single A, the Red Sox nation really supported me. Padre fans are great, too. They know my story and they tell me congrats and really support me. It’s really comforting.

"Now my goal is just to stay healthy and help my new team win baseball games. I definitely want to talk to kids more, I want to continue reaching out to them and give them some hope and some inspiration and tell them there is always light at the end of the tunnel. Because there always is.

"After I got healthy again, I remember the first time I stepped back into the batter’s box, it was in an instructional league, at the end of 2008, in Fort Myers. When I walked out there and got my first hit in the league, and heard the fans cheering, it was a great feeling. But playing in Spring Training the following season, that’s when I really felt like I was back. And now that I’m in the Big Leagues, I hope I’m here to stay.

"If there is one message, one piece of information, that I would want readers of this book to know, it’s that I want you to go out and enjoy life. I know it’s a cliché term, but you really don’t realize how good life is until something like cancer happens, you learn to appreciate the tiny little things.

"I want to have a family some day. Cancer was a shocker for me, but no matter what I was going through, I always reminded myself that someone out there has it worse, no matter how bad I was feeling. I really focused on the kids out there who are suffering, and I want to continue to inspire them."