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Honoring Ted Kennedy and Deeper Sorrow for the Emerging Epidemic of Glioblastoma Brain Cancer

By       Message Phyllis Huster     Permalink    (# of views)   2 comments

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I feel that today is a sad day of mourning for many reasons, not the least of which is the passing of another American hero, Senator Ted Kennedy. As a very young girl, I remember hearing of the Kennedy's as my father engaged in lively political discussion, mostly with the TV set late at night watching political TV shows and recaps of the congressional news of the day. Nobody loved the Kennedys more than my father, Phillip Eli Huster. My big "D" democrat values come squarely from the Kennedy's and my father's capacity to instill in me the now seemingly rare value of 'caring about everyone not just oneself.' Dad treated that almost like it was my American civic duty to care about others. I can almost hear Ted's words and his wise courageous speeches resonating as a final farewell to one of 2 remaining Congressional legacies of the greatest family to hold democratic office.
But today, I'm also deeply saddened that Senator Kennedy, by virtue of his commitment to seeing healthcare take a quantum leap under the Obama administration, was unable to act as spokesman for Brain Cancer. What most people don't realize is that Brain Cancer is the AIDS of this decade. It is spreading like wildfire and similar to early AIDS growth, the government will not only be clueless, but there will be no significant government funded research. Did you know that Brain Cancer is the #1 cause of cancer in children aged 19 and under according to the leading Brain Tumor Association? Did you know that we spend $4 Billion on depression and only $195M on brain cancer research according to the NIH National Institute of Health? How can we combat the #1 most lethal form of cancer with pennies for research?
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The timing of Kennedy's death, like most of his amazing feats in life is meant to teach wisdom and honor and integrity and shine a spotlight on this form of brain cancer. We are supposed to ponder what Brain Cancer means as the most lethal form of Cancer and more seriously to discuss why doctors studying this for 10 years have only been able to push the needle from more than 1 year to maybe 3 years survivability with this disease. Imagine telling any other cancer victim, you got 6 months to live and it's gonna be ugly, you'll lose your speech, you'll have your head cut open several times, and we have no way of extending your life. What this highlights is that no one in the entire healthcare field and clearly not government with it's overlap and duplication of departments, considers the entire healthcare continuum, and nobody certainly considers ranking and investing according to a disease's lethal nature. I know sadly, Ted Kennedy is only the beginning of millions that will die globally from Cancer of the brain unless we contemplate and legislate 'standards of care' along all aspects of the healthcare continuum.
The healthcare continuum includes 6 key Phases of a person's health:
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1. Prevention
2. Education, Identification, Analysis
3. Diagnosis
4. Treatment
5. Post Operative
6. Monitoring
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Our current healthcare system only chooses to pay for #3 and #4. Even in these 2 categories they use reasons like 'pre-existing conditions' or choose certain diseases not to cover. If the companies paid for prevention like chiropractic, homeopathic and physical fitness programs, many people would never get the the #3 and #4 gates of poor health. Worse, if you have an operation, there is little to no monitoring or follow up so cancers such as the one my friend Nancy had in her colon, manifest later in life in 4 other areas such as the pancreas, liver, lungs and brain. In fact, many times brain cancer happens because cancer existed elsewhere in the body and ended up in the brain.
I recently spent the last year becoming an expert on a thing called Glioblastoma, which is the worst of 4 stages of brain cancer. When you get this diagnosis of Glioblastoma you are told you have 6 months to live. It has hard to detect symptoms because it masks itself as blurred vision, depression, strange bouts of losing one's speech or motor control. But then one day, you just keel over, like Chris Elliott, a father aged 39 with 2 kids and an American pie kind of life. Visit the site at read about his amazingly courageous story how he managed to live a few more years and he and his wife started a foundation to research this disease. His death in 2001 led his wife, Dellann to be so convinced that this disease was overlooked that she promised her husband, Chris, she would create a foundation and begin raising money to find a cure for the disease. Herculean though her efforts, and even though raising over $1M and donating to Dana Farber Cancer Institute, widely considered one of the top centers of Excellence for Glioblastoma, Dellann's efforts are a bit like throwing pebbles at an oncoming tidal wave. What really bothered Dellann and Chris was the extreme effort they had to go to to get basic care. That is why Dellann recently donated $300K to Swedish hospital in WA to create an Integrated Patient Support Specialist to help patients with the myriad problems that occur such as speech loss or job/insurance hassles, etc.
At the time of Chris' battle, advanced treatment was not available and both had to travel to Boston to get the very best care. Sadly, most Americans without such coverage or financial ability to pay for the extras insurance doesn't cover, would never be able to travel.
There are only 7 centers of brain cancer excellence in the US, that means in 43 states, you are sadly "SOL" when it comes to brain cancer. In Washington state, we are lucky to have Swedish Hospital a 100% nonprofit hospital offering state of the art treatment, and recently added Dr. John Hinson, one Harvard's brightest neurologist and a former Ted Kennedy doctor. People lucky enough to land at Swedish will meet Dr. Hinson or Dr. Greg Foltz who have to be doctors and healthcare activists. They have to be 24 x 7 raising money for brain cancer equipment and research because it is truly the most underfunded disease on the planet, and I respect these 2 people and their evolved hospital enormously.
The worst part, is if WA residents have Group Health insurance, they are not allowed to go to Swedish and have it covered. So they end up at the Group Health hospital where doctors like rats in a maze, perform the same treatment for brain cancer that has been happening for 20 years, they cut your head open, remove the tumor and then just play 'chase the tumor' till you die. Sadly, they are not aware of the new form of treatment that utilizes DNA molecular testing, and with innovative mapping of DNA genes that are 'expressed or not", or "on or off", the doctors at Swedish can provide a tailored regimen of treatment and medicine such as Avastin that extends your life to as much as 3 years versus 6 months. It would be sad for me to hear from Dellann when folks called her from Group Health. Because of their stubborn rules, she would shake her head knowing that person who just called her would have 6 months or less to live and it was needlessly so.
What's most disturbing is that this is affecting our children. In addition, according to the NABT National Assoc. of Brain Tumors, kids from aged 20-29 experience Brain cancer as the #3 cause of death. There are no 'definitive' root causes, but research points to paint thinners, WIFI/EMR transmissions from wireless devices and even Iraq veterans and the ways they were exposed to harmful environmental agents, as causes of the disease. Could we be slowly killing our kids when we get them those sexy little clamshell phones? I've spent 20 years in the telecomm industry only to spend my 40's scratching my head asking the question, was I poisoning the airwaves for our children all those years I thought I was revolutionizing communication?
Like most things, the real answers are hard to find. I found it odd that one of the key sponsors of the DC area Race For Hope sponsored by groups on the East Coast raising money for the disease was Dupont, maker of great volumes of paint thinner. There again, American corporate greed in action, proactive participation in a civic and 'seemingly giving' activity, on Dupont's part, largely to stave off the inevitable lawsuits for the victims of their products. It figures, Kennedy's death leaves huge holes in the American healthcare landscape, holes even his own disease exposes. Holes we ignore at our own peril and our children's greatest health risk.
That said, Senator Kennedy did amazingly well to live almost a year beyond his 2008 diagnosis and is a real testament to his character, his stamina and his grace. I'll never forget the the impish and evil grin on Nixon's face as he entered the Catholic church for the funeral of Robert F. Kennedy. It was almost like he was laughing at Americans for being so stupid as to refuse to connect the dots as to who was behind Kennedy's assasination. Just how much suffering the Kennedy family suffered at the hands of Johnson and Nixon, will never be known but the parallels to the 70's and now are frightening. Like Bush and Cheney, Nixon took power forcefully and ruined our country's economy for decades with his childish, war mongering, teenage actions that in the form of Rumsfeld and Cheney went on to haunt us in this century. Eric Holder doesn't understand the heart of a progressive, but this progressive has one thing to say to Eric, stamp out the cockroaches before they cause another $10 Trillion dollar deficit in years to come.
If Republicans want to be proud of their party, they must remember, the cockroaches that infested our last 8 years of American economic ruin, are not that far removed from the slime and filth that worked to assassinate and ruin the Kennedy family. Because the Kennedy's tried to dismantle the insurance companies and the banks, they were targeted and tormented endlessly. My military friends like to point out how Kennedy drove over a bridge, and I like to point out how their children won't have jobs, his wife, can't sell arbonne because the Republicans have bankrupted Americans to the point we can't even buy a tube of face cream. I love to point out how their portfolios have lost 30 to 40% under Republicans and gained under Democrats. How we have a $10 Trillion deficit under Bush and Clinton left with a $186Billion dollar surplus.
But they don't get it. The Republicans don't even get the healthcare continuum. It's "me, me me" all the time or as Ashton Kucher, my least favorite Republican in 'independent' clothing likes to say "I'm not paying for that guy that eats too many hamburgers and fried snicker bars." I would tell Ashton to open his oppulent pocketbook spoiled hollywood brat and donate $2M to brain cancer and impact the lives of 100's of thousands who currently today, have 6 months to live.
Which is why it may take a Democrat to die of brain cancer to explain to the world the very serious danger of this one disease. Others have died. American Idol David Cook's brother died in May and 9,000 racegoers in DC collectively cried with David as he described his courageous brother Adam's brave fight with the disease. Now David Cook donates proceeds from his albums to research. David, at least is one human who gets the importance of parting with a few of his own pennies to help others who need help. Ashton, go visit with David for a while.
I guess it was half way thru working for a 99% republican volunteer group in the Chris Elliott Fund that I finally had my fill of republican values. I realized that most the money being raised and spent was pushing rich / insured patients into the arms of even wealthier doctors. They somehow thought that sending it all to research (even though only 10% of the public could get access to those treatments) was good enough. I remember reading an email about a little 3 year old boy in Texas who's insurance would not pay and nowhere in Texas is there serious treatment for this disease. Imagine if all this little boy's family needed was gas money and hotel to get to Florida for treatment?
I did an analysis and realized only 10% of the WA state victims of brain cancer were able to go to Swedish or would be directed to Swedish because of teh greed of other hospitals who don't have a standard of care to uphold related to brain cancer. The rest of the 90% folks with Glioblastoma in Everett, Tacoma, and elsewhere in the state are confined to losing years of their life because nobody is really held accountable to keeping hospitals and doctors up to a minimum standard of care for Glioblastoma. In Germany, you'd have every doctor in the state trained and doing genomic testing and having the latest equipment for testing the brain cells, but here you have Neanderthal egotistical neurologists scratching their butts saying "well this is how I have always handled brain tumors."
Kennedy's death is an anachronism in any other culture but America. Even China has amazing standards of care that we can only hope for. Because brain cancer only affects 20,000 per year the pharmaceutical companies could care less about researching this disease. Avastin, the #1 drug for patients of brain tumors, is really a generic tumor drug that has not been modified to suit brain tumor patients. As a result you get a huge holes in your intestine when using it, but patients don't mind, it buys them a few years and they have nothing else to choose from.
Greed. Greed. Greed. When I told my republican brain cancer volunteer friends that we needed to help the poor folks too, they just looked at me blankly and made fun of how Howard Dean likes to scream. I had donated my personally signed Howard Dean bat to one of their auctions and they laughed when I placed a high value on the item. They can't possibly understand how Howard Dean reshaped the face of grassroots politics, and what a genius the man is on healthcare reform.
I guess neither can Obama and neither can egotistical Rahm Emmanuel. Both of whom jettisoned Dean out the door after taking all his grassroots money as soon as the election was over. Obama hasn't the backbone, the spine or the courage that the Kennedy's have, and his legacy will be to act as a one hit wonder.. doomed it seems clear now, to one term as a 'mediocre' leader unwilling to take bold steps for healthcare reform.
It's sad to me America has all the tools and all the leadership and all the Democrats in place to score a huge victory for healthcare and instead, what I know to be true, is that 5 years from now, 90% of the uninsured will still die in 6 months from brain cancer and Kennedy's suffering will not have shifted a country to act swiftly and devote research to a substantive cure.
His death means more to me than the death of a democratic family heritage of honor and integrity, it means a death knell for Brain cancer advocacy and it means my children and children's children will have to pick up the pieces the ways we've broken the system of healthcare.
The other centers worth exploring in case folks care:
Emory University
Dana Farber Cancer Institute
Sload Kettering
Swedish Hospital
Duke Research Hospital.
My deepest regret is that my father could not see how far Senator Ted Kennedy advanced our nation in the area of healthcare. Obama's plan succeeding or not, Senator Ted Kennedy was the tireless gladiator of healthcare reform for centuries and we owe any progress we currently have to his willingness to keep going after the vitriolic extremists of the Republican party could not beat back the Kennedy courage, determination and integrity. I only hope Carolyn Kennedy will carry the mantle and become the spokesperson for one of the scariest diseases on our American landscape for years to come.
If you want more information on Glioblastoma, I don't recommend going to the CDC or websites. Their data is 5 years old highlighting how bureaucratic and asleep at the wheel we are on educating the public about the disease. I recommend the 2 sites and
Or email me at and I can guide you to organizations that help people who can't get insurance to pay for the disease such as the Butterfly fund in several states.


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