Showing posts with label Johnson. Show all posts
Showing posts with label Johnson. Show all posts

Monday, December 15, 2014

Son of a Mesothelioma Victim Urges VA Secretary of Health to Fund Medical Program Dedicated to Veterans Stricken with Asbestos Cancer

LOS ANGELESDec. 12, 2014 /PRNewswire/ -- The Pacific Meso Center (PMC) is urging the US Veterans Administration (VA) to enhance mesothelioma healthcare services at the West Los Angeles VA Medical Center (VAMC). Mesothelioma is an aggressive cancer caused by asbestos exposure. Nearly one-third of the 3500 Americans diagnosed annually with mesothelioma were exposed to asbestos in Navy shipyards or military facilities, making veterans among those most at risk for this cancer.

The campaign to establish a comprehensive meso center at the West LA VA was spearheaded by the family of John Johnson, a former US Marine who lost his battle with mesothelioma in 2012.  They believe that if Mr. Johnson had had timely access to specialized care, he might be alive today. The family has pledged substantial funds to help create, publicize and build the program, citing the need to prevent other veterans from receiving substandard care.

The US Government has never fully funded a medical program dedicated to veterans stricken with asbestos cancer. The Comprehensive Meso Center will give veterans access to an early diagnosis, optimal treatments, and leading mesothelioma specialists, including Robert B. Cameron, MD, FACS, who pioneered the innovative lung-sparing surgery for patients with malignant pleural mesothelioma.

While veterans fortunate enough to know about this Center receive an unprecedented high standard of care, the Center itself remains a virtual secret. The Center and its specialized services are not mentioned on the VA's website.

In an online video plea Michael Johnsons Powerful Message to VA Secretary Robert A. McDonaldMichael JohnsonJohn Johnson's son, said, "We're asking the VA to simply educate doctors and veterans via its website and media promotions so that veterans can learn about resources at this Center. How many veterans have to die to get your attention?" 
Supporters of the Comprehensive Meso Center ask that it be called the "Elmo Zumwalt Comprehensive Mesothelioma Treatment & Research Center," in honor of the Navy Admiral who succumbed to mesothelioma. In addition, advocates are petitioning Secretary McDonald for VA funding of $5 million per year to cover the Center's expansion costs. "With adequate financial backing, the Center can provide comprehensive treatment services to an increased numbers of veterans nationwide. Funding also will allow top scientists to conduct clinical trials to benefit veterans diagnosed in the future," said Clare Cameron, Executive Director of the PMC.
For further information, please contact:
Clare Cameron - 310-478-4678
www.phlbi.org
SOURCE Pacific Meso Center  

Tuesday, May 20, 2014

Secretary Shinseki – Please Notify Veterans There’s No Waiting List at the Zumwalt Mesothelioma Treatment Program in Los Angeles

Dear Secretary Shinseki,

Zumwalt Meso
Treatment Program 
The best medical plan 
no veterans know about.

It’s upsetting to read the allegations in the news about secret wait lists, cover-ups, shabby treatment, premature deaths and a culture of apathy permeating the Department of Veterans Affairs.

What’s equally upsetting is letting veterans suffer and die with either no or minimal treatment even though a qualified medical team is standing by and eager to treat them.

For months now, patients and advocates (including Lt. Colonel James G. Zumwalt, USMC (Ret.)) have been entreating you and Under Secretary Petzel to simply notify patients and doctors within the vast VA network of the world-class treatment available to veterans suffering from mesothelioma as a result of service-related asbestos exposure. 

About a year ago, the VA Medical Center in West Los Angeles, California approved (but did not budget) the Admiral Zumwalt Mesothelioma Treatment Program. The program is headed up by Dr. Robert Cameron, a well-respected thoracic surgeon who has dedicated his life to the rational treatment of pleural mesothelioma, a cancer which disproportionately impacts US service veterans.

Dr. Cameron and his crew are eager to treat veterans. Unfortunately, despite multiple requests and promises, the VA has yet to perform the simple administrative task of  updating its website and other social media about the existence of the program--notices that would alert veterans suffering from mesothelioma to the high quality treatment which is available them. Neither the VA nor West LA VA websites even mention the program. Please see our letter to Dr. Dean Norman, Chief of Staff, VA Greater Los Angeles Healthcare System. 


"When a veteran is
denied care, we are 
all dishonored." 
Barack Obama, 
Aug. 2007.
The mesothelioma treatment team at the West LA VA Medical Center would love to have a list of veterans to treat. But there’s no list, no waiting list and no effort to educate our war heroes stricken with asbestos cancer that help is available.

You’ve read about the double digit number of veterans who have allegedly died while waiting to be treated.  We may never know how many veterans with mesothelioma have died after receiving no or sub-standard treatment. 

According to the popular literature, about 4,000 Americans are diagnosed with mesothelioma each year. Of those, roughly a third were exposed to asbestos while serving in the Navy. It’s not a stretch to surmise that at least 600 Navy veterans are diagnosed with mesothelioma every year--a diagnosis that carries a 9 month life expectancy with no treatment and 11-12 months with chemotherapy only.

Mesothelioma is a rare disease and few doctors are either interested or qualified to treat it with the full arsenal of options available.  It’s a beautiful thing that a world-renowned surgeon like Dr. Cameron is willing to treat veterans, but it’s sad that the VA has done nothing to help educate patients about his extraordinary talents.

Secretary Shinseki, how many vets have to die before this issue finally works its way up to the inbox in your office? We’ve been sending letters to Under Secretary Petzel as well as our representatives for several months. Now that he’s resigned in the wake of the Phoenix scandal, what will happen to those heart-felt letters from patients and their families? Who will read them? Anybody? And more importantly, what will the VA do?


Secretary Shinseki,
please include 
building the Zumwalt
Meso Program in 
your mission to 
provide better and 
more timely
care to veterans.
Secretary Shinseki, we agree with you when you say that it’s your “mission” to provide quality care to each and every veteran. You say you’re “mad as hell” about recent allegations and vow “to do better.” With a budget of $164 billion, to your credit, you haven’t blamed the missteps on a lack of money. And you’re wise to investigate the nexus, if  any, between the waiting lists, which are a fact of life in modern patient management, and premature deaths.

But we are still waiting for a response. The request is simple: Will you please educate veterans and all caregivers within the VA system that the Zumwalt Mesothelioma Treatment Program is alive and well and eager to provide prompt, world-class treatment to veterans suffering from mesothelioma (without placing them on a long list!).

With new reports of the VA medical system’s failures capturing headlines every day, what better time to finally bring attention to an area where the VA has gotten it right!


Sincerely,

Roger G. Worthington
May 20, 2014

The family of former Veteran John Johnson has pledged to help 
fund the Zumwalt Meso Program at the West LA VA.

Monday, March 26, 2012

Michael Johnson Repudiates Suffering, Dedicates Redlands Criterium to Dad and Meso Patients

REDLANDS, CA. Michael Johnson thought he knew a few things about suffering.  As a former professional motocrosser and cyclist, he knew first hand what it felt like to push the body so hard that the mind nearly shut down in a dizzying fog of immeasurable pain.
The Spirit is Strong
Michael Johnson kisses his
Dad's dog tags as he
wins the Redlands Criterium
in epic fashion.  "When I
came out of the corners,
the dog tags would jingle
jangle against my jersey,
reminding me to push harder."

And then Michael’s Dad, John Johnson, died from malignant mesothelioma. MJ watched as his Dad went from a robust and wiry mountain biker to a cancer patient curled up in a lounge chair desperately struggling to breathe, like a fish out of water.  MJ learned about a new kind of suffering, the stupid kind, the kind that takes but doesn't give, and begets only more misery.

After mesothelioma took his Dad, MJ didn’t feel normal. Normally, he loved to race his bike. He loved the training, the intervals, the climbing, the sprinting, the prospect of a personal best or, better yet, the exhilaration of beating the best in the peloton. For seven weeks, MJ couldn't muster the energy to get back on his bike.

On Saturday, MJ returned to the field of battle.  Wearing his “Breakaway from Cancer” kit, in a tough pro race, he had made the breakaway, and his chances for winning looked very good. But bad luck struck. He flatted. Game over.  Dejected, but not defeated, he suited up the next day for one of the grittiest criteriums in the country at the Redlands Classic.

“No excuses,” he kept repeating, mantra like, as MJ lined up under forboding grey skies for the start of a technical, 50 minute criterium in downtown Redlands. Fittingly, the greatest criterium rider in U.S. cycling history, Davis Phinney, gave a send-off speech in which he celebrated the primal joys of watching his son carry the family torch.  Davis has progressive Parkinson’s disease. His son, Tyler, is one of the fastest time trialists in the world with a very bright future.

The gun went off.  The pack bolted.  The winds picked up as the skies grew darker. A storm was coming. Ten minutes into the race, bad luck again struck MJ. He broke a spoke on his front wheel. Frustrated, but determined, MJ pulled into the pit and grabbed a new wheel. When he re-entered the race, MJ’s focus took on an all new intensity.

“I wasn’t racing for myself,” he recalls. “I was racing for my Dad. What I’d normally call ‘pain’ – the fatigued legs, the gasping lungs – were no longer painful. They were simply a reminder that I was going for it, pushing myself, going bigger.”

MJ attacked. Against all odds. One man against 90. By his own accounts, not a textbook move. “I still had 40 minutes to go,” said MJ. “Normally it would make no sense. But today was different. I went into that sort of out of body ‘zone’ that people dream about. ”

Zone indeed. MJ pounded off the front, pedaling through each sharp turn, stomping out of the saddle to regain speed, carefully monitoring his gap on the hard charging field. With five laps to go, the crowd of 3,500 was on it’s feet, sensing that this move was no fluke. It wasn’t for show, or fleeting glory. This was real.

“I kept asking for strength. Asking myself. The skies above. The crowd. Even the trees.,” MJ revealed, in a whisper. “There’s a spirit out there. I know my Dad’s apart of that, and I was tapping into it, like I never have before, and may never again.”

The spirit moved him and kept MJ in full gallop all the way to the line. He crossed the finish line, raised his fist, and kissed his Dad’s dogtags that had been dangling from his neck.  Twenty seconds later, the peloton sputtered in, spent, as the skies opened up and the gutters filled with rain.

MJ had pulled off the unthinkable – against the odds, if not better judgment, he attacked, opened a gap, and held it for more than half the race against a field of raging chasers to whom both “gifts” and “giving up” were sacrilegious.

But was MJ “alone?”  “It was a solo V,” the powerfully built former fullback said, carefully choosing his wordw, as if entering unchartered territory. “But I wasn’t alone. My Dad was with me. My family was with me. My Mom, who had always come to my races with Dad. All cancer survivors were with me. Heck, your brother [David Worthington] was on the corner giving me splits and cheering for me. Your Dad was with me, too.” 

Michael “MJ” Johnson dedicated the win to his Dad, all mesothelioma survivors, and their families. MJ is sponsored by Amgen’s Breakaway from Cancer  initiative and the Pacific Meso Center, a non-profit medical foundation whose mission is to create new therapies that will convert meso into a chronic but not fatal disease.

Roger Worthington
Breakaway from Cancer
3/26/12