Washington, D.C. -- You would not know that
Congressman Bruce Vento has one lung, or that he has recently completed his third cycle of
chemotherapy, or that this past weekend he was hospitalized due to a fluid accumulation
around his heart. Yes, if you looked close enough, you could detect signs of fatigue --
but you had to look real hard.
His grip was firm, his smile genuine, and his enthusiasm
contagious. He may have been hurting on the inside, but in that stubbornly stoic Minnesota
fashion, he wasnt going to let you know about it. There was too much to celebrate,
and with so many old friends and even rivals on hand it was easy to forget that Bruce
Vento was engaged in his biggest fight against his most powerful opponent of all time:
asbestos-related malignant mesothelioma.
It was easy to forget because thats the way Bruce wanted
it, at least for this night. His friends and colleagues came from everywhere and
represented all walks of life. There were Republicans and Democrats, rich bankers and
swarthy labor unionists, philanthropists and lobbyists, young and old. Even Eugene
McCarthy, at the age of 84, had come to salute his worthy successor.
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Ann
Worthington, Rep. Bruce Vento and Roger Worthington Washington, D.C. - June 6, 2000 |
The words "cancer," "mesothelioma" or
"asbestos" were never mentioned. President Clinton came the closest to
addressing Ventos condition. He praised Rep. Vento, who was a high school biology
teacher, as a caring man who "never stopped being a teacher. Tonight, as he
fights a disease that has not yet yielded all its secrets to science, he's our teacher
again. He's certainly shown us all a lot about courage, and we're very grateful to
him."
President Clinton was right -- the mesothelioma tumor has not
yet
yielded all of its secrets to science. In fact, it has yielded precious few of its
secrets to science. Just yesterday President Clinton had a press conference at the White
House where he announced that we had finally completed an initial map of the human genome,
which we hope will help us learn how to turn off particular genes that give rise to
diseases, such as cancer.
The optimism is understandable. Optimism is standard currency
for Americans in general and politicians in particular. We want to believe that a cure for
cancer is just around the corner. We even expect it. But the reality for Bruce
Vento and for thousands of mesothelioma patients just like him is that the mysteries of
mesothelioma will never be known if we dont start investing the research
money now. Optimism without investment is merely wishful thinking.
Prior to going to Washington DC for the salute to Bruce Vento, I
learned from one of MARFs science advisors that the National Cancer Institute (NCI)
had recently terminated his grant to continue his research on the genetic basis for
mutations which give rise to mesothelioma cells. NCI had been funding the basic research
at Fox Chase Hospital for 13 years at about $260,000 per year. The research had yielded
more than a dozen peer reviewed articles, among other publications. Fox Chase had been
inching closer to locating the genetic markers for the tumors, a discovery which, once
established, could prove useful in plotting early detection and basic prevention
strategies.
When I first spoke to Bruce Vento after his diagnosis several
months ago, the first issue he raised with me was the need for early detection. He asked
whether MARF had any ideas about finding tumor markers in high risk populations. I
responded that at least one of MARFs science advisors was hard at work on that very
issue. This fact seemed to give him relief, and eventually Bruce Vento went on to
endorse
MARF and its mission.
But were headed in the wrong direction. The NCIs
budget for 2001 is $20.5 billion dollars. According to the Chairman of MARFs Science
Advisory Board, Dr. Harvey Pass, none of that $20.5 billion has been allocated for
mesothelioma research, whether basic or applied, in the form of RO-1 grants, which are
considered to be the major or most prestigious awards.
The real world score card shows that mesothelioma is winning and
we are not even trying to stop its deadly advance. While there are at least 30 national
group trials for lung cancer (itself a small number), there are only two trials for
mesothelioma. And these trials are funded by private industry (namely, drug companies),
which are loath to share their data and collaborate over their methods. In the U.S.,
despite our knowledge of this disease for over 50 years, there is no "task
force" among treating doctors to address the big questions, such as 1) where are we
in terms of potentially if not putatively effective treatments now and 2) if we are
not where we should be, how do we intend to get where we need to be, through both basic
research and nationwide clinical trials?
So, against the background of boundless optimism that medical
science can find a cure, we must confront the reality that a breakthrough wont
suddenly appear ex nihilo unless we cultivate the conditions under which
breakthroughs are possible. Its like expecting an orchid to grow in the sandiest,
hottest spot on the Mojave desert without water.
It is now up to Rep. Ventos colleagues in Congress to
water the flowers of medical research. They now know that mesothelioma does not respect
the color of your collar, or your wealth or power, your rank or influence, or your beauty
or courage. They now know that one of their own -- a man celebrated by conservatives and
liberals alike -- has been afflicted by this insidious tumor. Rep. Ventos
colleagues, as the chief setters of policy in this land, are also in a unique position to
mobilize this countrys resources to turn the tide against mesothelioma.
Recently Congress appropriated $3 million to two southern
universities to investigate whether the tobacco leaf could be used to fight cervical
cancer. You read that right. Congress gave $3 million to find out whether tobacco -- which
is responsible for the deaths of millions of humans -- could be used to cure cancer! But
nary a dime of public money has been spent to find a cure for a disease that has already
taken the lives of Admiral Elmo Zumwalt and Steve McQueen, and is threatening to add Bruce
Vento to its list of casualties.
That Bruce Vento is loved, respected and admired is beyond
question. He does not ask for pity. He continues to get up in the morning and go to work,
without complaint. I believe his friends are being earnest when they make glowing
predictions that because of Bruces uncommon strength and faith he will
"overcome" his disease. But, again, the reality is that overcoming mesothelioma
is not simply a matter of will. The tumor does not rage or recede because of its
victims personality profile. Like the cyclist Lance Armstrong wrote in his book
about his successful battle against stage IV testicular cancer: "Cancer will decimate
a strong person with a wonderful attitude, while it somehow miraculously spares the weaker
person who is resigned to failure."
Bruce Vento is a strong person with a wonderful attitude.
He is a role model for mesothelioma patients everywhere. He does exemplify
the character traits of a patient who can beat the odds. But thats not enough.
Beating the odds is not the same thing as "overcoming" this particular tumor.
Even under the best scenario, the odds are that only 50 percent of all mesothelioma
patients who do undergo rigorous treatment survive more than 12 to 18 months. As it now
stands, a mesothelioma patient will not die of natural causes or old age.
Bruce was lucky as compared to most patients because he was
diagnosed and treated by doctors at the Mayo Clinic who were familiar with the disease and
the scant treatment options. But even though he had his lung removed and has undergone
three cycles of chemotherapy, stray malignant mesothelioma cells are still circulating in
Bruces body. He cannot will their demise. Unlike many other tumors, the
chance of a remission is slim to none. The only reasonable chance Bruce and others like
him have to "overcome" the tumor is if medical science steps up to fill the void
with new and powerful treatment weapons that the patients can use before time runs out.
Spirit, charity, tranquility, love of life -- these are our highest virtues, but they are
not enough.
We need to find bullets that can penetrate the tumors
shield at the genetic level and "turn off" its deadly reproduction. The majority
of mesothelioma patients have had some exposure to asbestos while serving their country in
the Navy or in some war-related industry. For too many Americans, mesothelioma is truly a
war-related disease. The duty to help treat mesothelioma patients falls first on the
manufacturers who are responsible to begin with for selling and profiting from asbestos
and second on the government which has a duty to protect the public.
How will this happen? Vento gave a clue to the answer when he
spoke of the awesome power of cooperation. Instead of division and bickering, Vento
has found ways to appeal to those qualities that we all share: the need to protect our
resources, the need to provide affordable housing, the need to protect basic civil
liberties, the need to attract the best and brightest teachers. As one speaker noted, he
championed the cause of the homeless before it became popular, and he certainly did not do
it for the votes. He has tried to help those without a political voice because it was
right and just, not expedient or self-serving.
In this same vein, MARF believes that we can win the war against
mesothelioma if everyone -- government, the asbestos companies, the trial lawyers, the
drug companies, and the patients -- comes together, pools their resources and applies
their considerable expertise and knowledge for the common good.
After the speeches fade away, we are left where we started: The
tumor is still alive, its still hungry and its still marching unchecked
through the pleurae and peritoneums of thousands of innocent people. The best salute we
can give to Bruce Vento is to work together to find a cure for this evil tumor. To me, a
"Man for All Seasons" means one you can count on at all times, in summer and
winter, through thick and thin, determined to do the right thing and take action.
This is how we need to be, and what we must do, with mesothelioma.
Im sure Bruce Vento at this stage of his life is devoting
some thought to his "legacy." I think he wants to be remembered for what
propelled him forward, not for what slowed him down. Even with mesothelioma slowly
ravaging his once stalwart body, Vento continues to be more concerned about the health and
welfare of others, especially our countrys children. On this one night, his friends
and foes put aside their sometimes bitter differences and raised $500,000 for a
scholarship fund to help future high school biology teachers finance their college
education. As Vento chuckled to President Clinton, "Now that weve mapped the
human genome, we need teachers who can teach the children what all of this means."
Now that we are learning more about what causes and kills cancer
cells, we need leaders who will take a stand against this disease that is expected to
cause the premature deaths of over 4,000 Americans a year for the next 50 years. Earlier
this year, the House Judiciary Committee considered a bill that would have dealt a serious
blow to the civil rights of asbestos victims. Fortunately, the bill
did not become law. During the give and take of drafting the
bills language, a proposal was made to require the asbestos companies to spend $40
million annually on the research of asbestos-related diseases. This language was deleted
unceremoniously without debate.
Mesothelioma patients need time. The time is now to
revisit the role that the US Government should play in either forcing the responsible
parties to fund the necessary research or subsidizing the research itself. The money is
there; now we need the will.
As I write these words, I cannot help remembering the gratitude
and genuine affection Bruce exuded on this special evening. Here is a man who -- having
dedicated his life to teaching, protecting and serving others -- is now stricken with a
terrible cancer. Yet he smiles genuinely, and is surrounded by friends who celebrate his
accomplishments. How does one make so many friends? How does one accomplish so much in
such a short period of time? Bruce Vento is living proof that good things can happen if
people find common ground and put away their superficial differences. He has never shied
away from "unpopular" issues, and has always fought for whats right
despite the obstacles.. He has truly been a "Man for All Seasons." His example
should guide us to unite and work together to combat mesothelioma.
Roger G. Worthington
Mesothelioma Applied Research Foundation, Inc.
June 28, 2000
*** POSTED JUNE 29, 2000 ***