| Why
No Cure? Congressional Hearings-Sept. 2000 Dr. Cheung Speaks Out Dr. LaQuaglia Speaks Out |
Meg's
Testimony Take a Minute, Save a Life; Link to Congress |
Why
No Cure?
The subject of cure is a painful one for parents and Childhood Cancer
Researchers. Sadly, it comes down to money and social pressure. Childhood
AIDs research receives double the funding that childhood cancer gets,
even though there are 15 cancer diagnoses to every 1 AIDS diagnosis! Why?
Because public outcry over AIDS and media attention to AIDS brought government
pressure for more research. Nobody could ever say it better than Dr. Nai-Kong
Cheung, M.D., PhD., NB research oncologist at Sloan-Kettering, in his
recent Congressional Testimony:
"On the research front, as an investigator, I try to develop new drugs and new strategies to improve patients' chances to be cured, and early on, I was quite naive. I thought that finding a cure for cancer would be welcome news, not just for the field of medicine but for the scientific community, as well. Unfortunately, funding for clinical research has been quite limited. Clinical grants often get rejected because the scientific questions are perceived as applied research and not addressing the fundamental mechanisms of disease. These drugs and biologics, like antibodies, that target the rare patient cancers, are unlikely to be ever profitable for any company. The only source for such support has to come from either the government or philanthropy. It is devastating for any patient when the research effort has to be interrupted or a clinical trial put on hold because of lack of funds or a lack of a new agent. …Every year, cancer strikes over 10,000 children in this country. Two out of every 1,000 children born today will develop a cancer before the age of 15. What it means is one out of every 500 families in the U.S. will be hit with such catastrophe."
As Dr. Michael LaQuaglia, M.D., testified, "This situation is intolerable."
September
Was National Childhood Cancer Awareness Month:
Rep. Deborah Pryce Leads the Way for New Legislation on
Behalf of Kids with Cancer
Extension
of Remarks
The Honorable Deborah Pryce (R-15-OH)
October 27, 2000
ON THE CANCER AWARENESS WORKING GROUP'S
HEARING ON CHILDHOOD CANCER
Ms.
PRYCE: Mr. Speaker, I rise today to report on an important event that
took place on Capitol Hill last month. September was Childhood Cancer
Month and during this time the Cancer Awareness Working Group held a hearing
on the subject. On September 15, 2000, Mr. HOBSON, Ms. CAPPS and I gathered
to listen to medical experts, afflicted children, parents, survivors and
advocates from all over the country, share with the working group their
stories, their knowledge, and their ideas on how best to fight this terrible
disease.
It was truly a privilege to have so many wonderful individuals here in
Washington to speak on this most important of subjects. An estimated 12,400
children and young people will be diagnosed with cancer this year and
2,300 children will die from the disease. It is the number one cause of
death by disease in children under 15, and for the children and families
who experience the tragedy of affliction there can be no greater harm.
Leukemia, chemotherapy, lymphoma, neuroblastoma - these are terms a small
child should not have to pronounce. Yet the incidence of cancer among
children has been rising steadily for the past 20 years and the resources
devoted to research and treatment of pediatric cancers remain relatively
small. For these reasons, the efforts provided by these individuals to
increase the awareness of this devastating disease, are not only appreciated,
but also truly needed.
Mr. Speaker, with this in mind, I would like to present to you the names
of the individuals who gathered for this special event to provide testimony
on their experiences with all aspects of childhood cancer. Unfortunately,
I am unable to include in these remarks the full text of each individual's
testimony. Instead, I have provided summarizations and excerpts from them.
I would encourage all Members to review the full transcript from this
important hearing that is available on my website at http://www.house.gov/pryce.
In addition, a text copy of the transcript can be found in the collection
at the Library of Congress.
Read more about the event and the result it had in Congress http://www.house.gov/pryce/ccm.htm
Testimony
of Dr. Nai-Kong Cheung, M.D., Ph.D.
(Researcher), Memorial Sloan-Kettering
DR.
CHEUNG: Congresswoman Pryce and members of the Congressional Cancer
Awareness Working Group, thank you again for providing me with the opportunity
to offer my thoughts on childhood cancer and what I believe are urgent,
urgent concerns that need to be addressed. I'm attending at Memorial Sloan
Kettering Cancer Center. I obtained my education, my M.D. and Ph.D. degree
at Howard Medical School. Since 1983, I have devoted my professional life
to a childhood cancer called neuroblastoma. What I'm trying to find out
is what causes this cancer, why some children die, and how some who survive,
what treatments we can develop in a timely fashion so that we can cure
all children with this disease while minimizing--minimizing--the side
effects of the treatment. I have been studying side-by-side with many
brave youngsters, the parents, and the dedicated health care professionals.
Although we are winning more and more battles, but we are not winning
the war.
What I am going to say is in my 17 years of hands-on experience with children
and families affected by this cancer. From my research bench to the bedside,
I could hear the children and I witness how the disease took the toll
on these children and the families. Childhood cancer is a catastrophic
illness not just for the child but for the family.
The initial diagnosis of cancer invariably results in these overwhelming
emotions of shock, of guilt, of anger, depression, and fear. Parents quickly
become aware what the odds that the child is facing--these are both real
and some are potential--their immediate and their acute problems, their
long-term risk, and the painful reality that there may be no cure in sight.
And parents, understandably, they research the best treatment options
there are and they learn firsthand the frustration and the despair that
they face with this health care system. First, parents and even the doctors
cannot find out the statistics and actual treatment results by diagnosis,
by age. They couldn't find this out from individual oncologists or hospitals
or institutions, data that are very viable. New treatments sound very
good, but without careful follow-up and analysis, they may be premature.
It is unacceptable in the 21st century that such vital data relating to
the cancer treatment are not available when such comparisons are commonplace
when you want to buy a television, when you buy an automobile.
Out of the painstaking homework, parents find the treatment method, only
to realize that the insurance policy will not allow them to go out of
network, that their coverage does not extend to the hospital of their
choice. If they try to maximize the chance of cure for their child, they
have to give up their house, their lifelong savings, forego the college
plans for the other children and the retirement dreams that they have
built for themselves. Whether there is cure or no cure, they are left
with a lifetime of debt without any recourse.
And so the young child starts the treatment and soon the parents find
out that their child needs 24-hour attention and 24-hour care, that either
the mom or the dad really has to take off from work. Although dad's job
may be a promising future, mom's employer is a much better coverage plan,
so they have to make a tough decision. Under the Family Medical Leave
Act, parents can only ask for 12 weeks of leave without pay. However,
their child's treatment is a year and a half, so employment and health
coverage are threatened, and in fact, they will be terminated. And they
soon find out that insurance covers 80 percent of the quarter to a half-million-dollar
bill that they are going to have to pay and the frequent hospital visits
and the in-patient stays means gas, parking, meals, and many other incidental
expenses that are not covered by insurance. They are glad that they can
stay in the Ronald
McDonald House, but many times there are no rooms available.
These out-of-pocket expenses can be crippling for these parents.
Obviously,
with all the frequent hospital visits, the other children are neglected.
The family begins to tear apart and the marriage suffers and arguments
and confrontations. The older child may be staying out late at night and
they may have problems at school and neither parent is able to deal with
these needs of the other children. Coping becomes harder and harder and
the family unit is severely threatened and some, in fact, will break apart.
What I described is a typical scenario of a family whose child has been
hit by cancer. This effect on the parents, on siblings, on the marriage
and the family unit are profound and they're devastating. How can we stop
this vicious cycle?
We need a bill of rights. We need a bill of rights for children with cancer
and other serious illnesses. Every year, cancer strikes over 10,000 children
in this country. Two out of every 1,000 children born today will develop
a cancer before the age of 15. What it means is one out of every 500 families
in the U.S. will be hit with such catastrophe. We need a bill that has
very viable treatment outcomes that will be available from hospitals and
doctors. We need to have access to care regardless of the insurance policies.
They are designed for routine health needs. We need to extend the job
protection beyond the 12 weeks that we have right now, maybe reimburse
somehow the out-of-pocket expenses the family has to pay and coverage
for emotional, social, psychological stresses that the family had to go
through.
On the research front, as an investigator, I try to develop new drugs
and new strategies to improve patients' chance to be cured, and early
on, I was quite naive. I thought that finding a cure for cancer would
be welcome news, not just for the field of medicine but for the scientific
community, as well. Unfortunately, funding for clinical research has been
quite limited. Clinical grants often get rejected because the scientific
questions are perceived as applied research and not addressing the fundamental
mechanisms of disease. These drugs and biologics, like antibodies, that
target the rare patient cancers, are unlikely to be ever profitable for
any company. The only source for such support has to come from either
the government or philanthropy. It is devastating for any patient when
the research effort has to be interrupted or a clinical trial put on hold
because of lack of funds or a lack of a new agent. I often wonder, what
if the government can designate some sustained support for some orphan
drugs that have clear patient benefits but are not commercially viable
for any company, at least support the development up to the point where
parents and philanthropy can take up the rest. Help the commission scientists.
Help them load the bases. Let the parents and the philanthropists get
the grand slam. We need to do that. Not all drugs require millions to
make. There are some that could be made at very low cost.
You may ask, why do we put so much money in cancer research in children,
but it's important. It's important to consider the life you save. In fact,
it is very cost effective to put cancer research money into childhood
cancer. If you take a median life expectancy of an American male of 73
years, if you cure a three-year-old boy, you can give 70 years of life.
On the other hand, if I take a 71-year-old man, I can gain two years.
When you compare these kinds of calculation to AIDS, prostate cancer,
breast cancer, pediatric cancer is allocated only a third to a sixth of
life value. All the neglected in the overall equation is the potential
productivity per life you save for these children that we're trying to
help. Obviously, these considerations are only meaningful if cure is the
goal. We have to take and focus our work on patient outcome, cure.
There are two areas, I think, that the Federal dollar is critical. First,
increase in research funding. I think we should support science, but we
don't want to lose sight of the child. I need to pay, and I think you
should pay, attention to actual patient survival data. We have to emphasize
facts. We have to emphasize the quality of life considerations. Hospitals
should be obligated to provide actual patient outcome. They should be
updated every year. They should have long-term follow-up data for all
new treatments that are very viable. The second thing I think the Federal
dollar can be helpful is to target orphan drugs, not just regular orphan
drugs but orphan drugs that have no commercial value. These are drugs
that are extremely useful and potentially life saving, but because of
the small number, no company is ever going to develop it. The awarding
of such funds should be based on patient outcome. It should be renewable
and be able to sustain. Let parents and let philanthropy help out. Thank
you for your attention.
Testimony
of Dr. Michael LaQuaglia, M.D.
(Surgeon), Memorial Sloan-Kettering
DR
LAQUAGLIA: Thank you, Congresswoman Pryce and I thank the committee
for allowing me to speak. I will be very brief.
I think that the treatment of pediatric cancer and its approach should
be supported because I think it transcends the numbers. The first chemotherapy
given and effective in humans was given for a tumor in childhood. Given
that, though, I think we should point out the suffering that these families
go through. I don't think I can be more eloquent than those of you who
have gone through this whole trial, but I can be a witness and to state
that with all my heart, that what you are going to hear is true and that
despite significant progress in disease treatment, there is a long way
to go and there is often a lot of needless pain and suffering.
Imagine for a moment, those of you who have not had to go through this,
if in your own families a son or a granddaughter complained of hip or
abdominal pain. After an indirect process, you are told that this child
had cancer. Then imagine that child's previous life as it flashes before
you. You might think of the day they were born, their first day at school,
the day that they graduated, and now the deadly word "cancer" intrudes
on all those thoughts. Imagine how you might feel. Fear, anger, denial,
bewilderment, they are all the things that are reported. Now picture the
confusion and anxiety associated with your inability to turn to the best
care, where to go, how should this child be treated? Imagine the anger
you might feel after an arduous and indirect route when you finally decide
the center that's appropriate and you're told that it's out of network.
Finally, if you find that a center is the most experienced, how do you
stay there? How do you travel there? Who takes care of the other children?
What is the optimal treatment? What if there is no treatment? What if
there's relapse and basically it's the end of the road in terms of what
we're able to do? I believe this situation is intolerable. Why can't we
have a national act of support for children with catastrophic illness?
Why can't we improve our research budget in this area? Why can't we have
a medical bill of rights for children that guarantees access to the best
care for all and support for all? Why can't we develop this infrastructure?
It's a time of surplus. It's a time to act. How can we help?
Spoken
Testimony of Meg Crossett
Parent,
Centreville, VA
MS. CROSSETT: Rachel wanted to tell you that she wants to have a store when she grows up and she wants to sell ice cream, slurpees, and candy. She wants to be known as the ice cream-slurpee-candy lady, and that she loves Barbies, and what else, Rachel?
MS. RACHEL CROSSETT: Mommy wants to say something.
MS.
CROSSETT: Rachel's going to leave us right now. Good afternoon. I
have a child with cancer. She has neuroblastoma. She may not live. That's
a very good possibility. She's here today so that you can put a face to
the statistics that have been mentioned many times over today. There are
not many children here because most battling cancer are not well enough
to be here. Rachel is an exception. Rachel has a joyous spirit. She's
my princess that cannot be held down for long.
I wanted you to meet her for a minute and I wanted you to look hard at
her. I want you to imagine putting this child in that beautiful dress
in the ground in a white coffin. I'm her mother. To say to you these words
causes me great pain, but I must say them because they could be a reality
for me and for 2,999 other parents this year. You don't see many parents
here with children. You see parents here who have lost children but feel
strong enough to continue with the fight. I am here because my child is
alive and I need your help to keep her that way. We need a public uproar
about this tragedy. You know, 88 people died from Firestone tires and
it is front page news across the nation. Everyone was outraged--88 people.
I'm so very sorry for their loss. We lose 3,000 children a year and no
one does anything about that. You don't see that in the paper. Twelve
children die from a faulty playpen and there's a nationwide recall on
the playpens. Why is there not a nationwide plan to cure childhood cancer?
Is it so overwhelming for most people? Maybe.
We need the nation to know this is happening. We need NCI to know funding
must go to childhood cancer. Childhood AIDS gets double the budget for
research than childhood cancer, yet there are 15 cancer diagnoses to every
AIDS diagnosis. Why? Because public outcry over AIDS and media attention
to AIDS brought government pressure for more research. Do I need to put
my child on a raft in the ocean to get attention? My child is a citizen
of this country, and as far as I'm concerned, worth every penny of the
$10 million that we spent on Elian. Will we spend $10 million on her care?
I don't think so, but I would like it. I don't have it to spend. But we
spent it on his parents and they didn't have it, either.
I believe in life. We have a purpose. Maybe it is God who has brought
us all together in this room, doctors, parents, speakers, to come together
to work towards this. This is the day. Maybe you as the aides and the
people here that don't even have a purpose here, the photographers, God
put you here today. You can take this out. This can be your mission today.
Take it out. Let people know that this is happening. Let other people
know we have this. Let's have an uproar. Thank you.
Back
to the top
It
Only Takes a Minute to Help Save Lives
Let's have a public outcry for kids with cancer! Be an advocate for our
kids -- click on the sample letter, copy it over in your e-mail browser,
fill in the blanks, and e-mail it to your Congressional Representatives.
Or you can fill in the blanks, print it and mail it. Please take a minute
to do something good for these kids today! Find your Representatives'
addresses by clicking the icon below.
