Dear Editor:
September is National Childhood Cancer Awareness Month. You've
seen the chemo-kids in fundraising brochures, the baldheaded ones
with the IV's in their arms, innocent and helpless unless YOU
help, contribute. These kids didn't smoke, disregard a cancer
warning, or tempt fate. They were truly innocent and more helpless
than you may think. Beyond using them for sympathetic, fundraising
tools, what do we adults and the medical profession really offer
these kids in return for their innocent images? It's time to become
aware.
While it is a fact that childhood cancer is rare, it is also true
that cancer is the number one killer of children over the age
of one. According to the National Childhood Cancer Foundation
(www.nccf.org) estimates, there
will be 12,500 new cases of childhood cancer in the US this year
with almost 2,000 deaths. Compared to American Cancer Society
figures for new cases of the "Big Four" adult cancers,
breast-212,600, lung-171,900, colon-105,500, and prostate-220,900,
childhood cancer is hardly noticeable. Unfortunately, it is the
relative rarity of childhood cancer that is often used as the
explanation why it is poorly diagnosed, treated with "hand-me-down"
drugs, and neglected when it comes to research funding earning
the sardonic nickname "Orphaned cancers."
Some childhood cancers are not easy to diagnose. Most pediatricians
may see only a handful of rare cancer cases during their entire
career. Since many of the symptoms mimic other more common childhood
diseases, cancer is usually suspected only after other possibilities
have been investigated and ruled out. Subtle sarcomas often have
nagging pain as the only noticeable symptom and with any active
child, bumps and scrapes are part of being a kid. It is common
that after as long as a year or more of pain complaints from a
child, scans that can detect tumor cells, X-Rays and MRIs that
show irregular bone and tissue formations are finally brought
into the picture and a biopsy and chromosome study are done to
make a proper diagnosis. But, the critical time advantage for
early diagnosis is gone.
Most drugs that are used to treat pediatric cancer were originally
developed for adult cancers; breast, lung, colon, and prostate,
diseases children are unlikely to get. These "hand-me-down"
drugs started with years of clinical trials before they became
widely available to adults. If they showed effective results in
adult treatment, often more years of clinical trials had to be
repeated for pediatric use in order to, for example, test whether
a drug developed for lung cancer could have a positive effect
on an 8 year old with bone cancer.
The simple truth is that there are differences between pediatric
and adult cancers, and yet a staggering amount of research for
adult cancers and patients continues while pitifully little is
being done for cancers that target kids exclusively. Large drug
companies, who often pay to have their products used on patients
for clinicalstudies, charge huge fees for the use of their drugs
to recover research and development costs once the FDA has approved
them. Therefore, it's good business to research the diseases that
provide the most customers and to promote the notion that chemotherapy
is the best treatment available. Once again, the rarity of childhood
cancer works against the health of children.
If basic research
and innovative new therapies are to be undertaken, funds from
the public sector must provide most of this support. The National
Cancer Institute, a branch of the National Institutes of Heath,
awards grants for basic research and clinical trials for innovative
new treatment ideas. One of the problems for some non-profit groups
like the American Cancer Society and even the Sarcoma Foundation,
is that they fund research for more common adult cancers because,
in part, that's where their own dollars come from, not kids. In
a sense, they compete with drug companies for the funds from the
same adult group, one for profit in the use of their products
and the other through soliciting donations, reasoning that to
do so is in their own best interest.
Without economic resources,
political clout, education, even the right to vote, kids are helpless
to influence the direction of research for their own best interests.
The weapons they are left with to fight a life threatening disease
are the drugs available from adult cancers and adult research.
Kids who are unlucky enough to be stricken with a cancer that
focuses almost exclusively on adolescents, like Ewing's and Osteosarcoma,
are truly the orphans among orphans.
Nearly all of the
research and clinical trials being done in the US make an assumption
that is very profitable for drug companies; the best treatment
for cancer is chemotherapy. But what if the cancer is chemo resistant?
For some unlucky patients, a return of one's cancer can reduce
the chance for survival to single digits. This horror is unfortunately
true for adults and children alike. For example, if the cancer
returns to a pediatric Ewing's sarcoma patient, which happens
in about 50% of cases, the survival chances drops to 15%. There
is a limit to the effectiveness of chemotherapy. It is in the
best interests of both adults and children to quickly find non-chemo/non-toxic
treatments, because sadly every day patients are running out of
ammunition against cancer.
Dr. James Geiger,
tumor immunologist from the University of Michigan's Mott Children's
Hospital, is hot on the trail of a cancer vaccine. His non-toxic
approach "teaches" the patient's immune system to recognize
resistant tumor cells and kill them. With public funds from the
NCI and grants from the University of Michigan, the results of
his Phase I Clinical Trial using this approach were very positive,
showing the stabilization or regression of cancer in pediatric
volunteers with significant bulk disease (dying kids). The implications
of these results for all cancers are thrilling. The biggest side
effect from the treatment was fatigue.
The expanded Phase
II Clinical Trial proposal that would utilize the vaccine on adolescent
specific Ewing's Sarcoma patients, was not approved. Why? It didn't
include adults. So, what chance does a Ewing's kid (survival rate
of 50%) have if the cancer comes back (survival rate now at 15%)
and one of the most promising treatments left was not approved
because adults were not included in the clinical trial for a disease
that targets adolescents. In my opinion, this is not only logically
mindboggling but shows bureaucratic indifference to kids who are
actually dying every day waiting to receive this treatment, not
to mention the adults who could receive it "off-study"
(not part of the trial) anyway.
If this month of Childhood
Cancer Awareness is to be truly meaningful to our children and
ultimately ourselves, we must respond by giving to cancer research
on the condition that our funds go specifically to pediatric research.
That way, we give kids a fighting chance to enjoy the same specialized
treatment we adults demand for ourselves. We can show these vulnerable
youngsters that they are a valued part of our society and not
just important for sympathetic promotional pictures soliciting
donations for organizations that will ignore them when it comes
to research allocations.
Fred Morden
The Brian Morden Foundation
2809 Columbia Dr.
Altoona, 16602
946-9369
www.brianmordenfoundation.org