46 Mommas Reach Million Dollar Goal


On Sunday, the 46 Mommas St Baldrick’s team reached their million dollar goal. For the occasion, I wrote a press release. Here is the release:


clip_image002

Website

www.46mommas.com

Donations

www.stbaldricks.org/events/mypage/5682/2013/

Campaign

www.stbaldricks.org/campaigns/46mommas/

Facebook

www.facebook.com/46Mommas

FOR IMMEDIATE RELEASE

February 26, 2013

46 Cancer Moms help Their Children Feel “Normal” AND Raise $1 Million IN the Process

“Our children lose their hair by treatment, we lose ours by choice”

Nashville, TN, February 26, 2013– In May 2009, Miranda Beamer celebrated her fifth birthday. She was barely a year out of treatment for Ewing’s Sarcoma, a rare childhood cancer. As Miranda blew out her candles, her mom Tiffany Beamer set a goal to raise one million dollars for childhood cancer. Tiffany rallied Cancer Moms nationwide and formed 46 Mommas. 46 months later, on February 24, 2013, that goal was finally reached.

“The number 46 is important,” says Tiffany Beamer, the founder of the 46 Mommas team. “Every week day, 46 children are diagnosed with cancer; every year, 46 new mommas shave for the brave. Our children lose their hair by treatment, we lose ours by choice.”

Officially, the mommas shave for the St. Baldrick’s Foundation, the largest private funder of childhood cancer research. Unofficially, they shave for their children, as each momma has been touched by the ravages of childhood cancer. Since the mommas’ inaugural shave in September 2010, 138 different cancer moms have shaved for the team, 46 at a time. By the end of this June, another 46 will shave, bringing the official tally of mommas to 184.

In the United States, more than 13,000 children are diagnosed with cancer every year. Of those, 20%, or about 2,500, lose their lives, making childhood cancer the number cause of death by disease for children and adolescents in America.

While most of the children lose their lives to cancer, some are victims of the treatments they go through, most of which were originally formulated in the 1970s. Until a few years ago, there had been no new drugs designed solely for the treatment of childhood cancer in more than 30 years. Those that do survive the treatment often suffer complications, even decades after the end of treatment.

About 46 Mommas
46 Mommas Shave for the Brave team is a grassroots group of women who have shaved their heads for St Baldrick’s to raise money and awareness for childhood cancer. The group was started by Tiffany Beamer in 2009. The mommas shaved for the first time in September 2010. To date, 138 mommas have officially shaved for the team, with dozens more organizing events to help in their fundraising efforts.

The 2013 team of 46 Mommas will shave this year on June 30, 2013 at the Arneson River Walk Theater in San Antonio, Texas.

About St. Baldrick’s Foundation
The St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives. Since 2005, St.Baldrick’s has awarded more than $103 million to support lifesaving research, making the Foundation the largest private funder of childhood cancer research grants. St. Baldrick’s funds are granted to some of the most brilliant childhood cancer research experts in the world and to younger professionals who will be the experts of tomorrow. Funds awarded also enable hundreds of local institutions to participate in national pediatric cancer clinical trials. For more information about the St. Baldrick’s Foundation please call 1.888.899.BALD or visit www.StBaldricks.org.

# # #

If you would like more information about this topic, please contact Tiffany Beamer at 615.646.9665 or email at tbeamer@comcast.net


September is National Childhood Cancer Awareness Month


Five years ago this week, my life changed forever. It started with a small lump between my daughter Miranda’s ribs. It compounded when she was admitted to the hospital on September 1. It spun out of control when she was diagnosed with cancer on September 6.

It is fitting Miranda would be admitted to Vanderbilt Children’s Hospital on September 1, the first day of National Childhood Cancer Awareness Month. It is coincidental she spent the entire month of September in the hospital, fighting Ewing’s Sarcoma, a very rare form of children’s cancer. At the time neither my wife nor I had any idea there was a National Childhood Cancer Awareness month. Today, I am convinced the awareness is not much better with the American public. Running a Google news search this morning, I found more links for Breast Cancer Awareness Month, which occurs in October, than Childhood Cancer Awareness Month.

It does not surprise me the awareness is low, as childhood cancer affects less than 1/3rd of 1% of the children in America. Compared to the 250,000 women who will get breast cancer this year, it is a very small number. Yet, each year 13,500 families will have their lives changed forever and 2,700 will bury their children, victims of either cancer or the antiquated treatments.

Up until two years ago, there had been no new treatment specifically targeting childhood cancers in over 3 decades. Even today, the new options are few and far between. Most children, like Miranda, are subjected to chemotherapy regiments formed in the 60s or 70s – only the specific mix, dosage and treatment schedules have changed. Many of the chemotherapy treatments would kill a grown adult. It is fortunate children’s bodies rebound better.

Cancer has a serious downside. Without cancer, I wouldn’t have seen the devastation when a parent loses their child. Without cancer, I would have never had to close the hospital door so Miranda didn’t see R. J. Brisland’s lifeless body wheeled down the hallway of the pod. Without cancer, I may have lived my life without witnessing the funeral of a child, and certainly never would have witnessed the number I have.

But cancer also has it upside. Without cancer, I would have never witnessed the wonder of my wife founding the 46 mommas, a group raising money through St. Baldrick’s, an organization that is on track to beat the United States government this year in grant money for childhood cancer research. Without cancer, I would have never been able to grant a child’s one heartfelt wish through Make-A-Wish. Without cancer, I would never have the pleasure of helping other families through the pain of cancer in their own children. And without cancer, I would not have had the chance to see the hope each cancer parent holds that one day we will find a cure.

Peace and Grace,
Greg

Twitter: @gbworld

The Climb


I have always loved the song the Climb, which was made famous by Miley Cyrus. Today, I saw a post on FaceBook that cemented my view of the song. It sounds a lot like the battle our children go through when they are diagnosed with cancer. This picture says a thousand words to me:

image

Here is the entire video, if you want to watch the song:

Miley singing to young cancer patient

I am not sure who the little girl in the video is. The video was shot through a cell phone, or at least that is how it appears. It is quite obvious the little girl is going through some sort of medical treatment. The bald head and NG tube give it away. To me, it is fairly obvious the medical condition is some form of cancer. The bald head and NG tube give it away. Bald due to the cancer, NG tube due to the fact her throat is raw from the mucositis from her chemo treatments and the fact nearly everything solid causes a vomiting reflex.

These are not pretty words, but cancer is not pretty in children. It rips them apart and leaves them with lifelong effects. The treatment protocols, overall, are ancient in the cancer world, some dating back to the 60s. Sure there have been tweaks, but unlike adult cancer patients, who often have less damaging options, the children generally only have the options chemo, radiation and surgery.

My daughter Miranda was diagnosed on September 6, 2007 at the age of 3 with Ewing’s Sarcoma. Ewing’s is a cancer of the bones that affects about 250 people a year, primarily male children in their pre-teens and early teens. Miranda’s was an Askin’s tumor, which is a Ewing’s tumor of the soft tissue. Only 10% of the cases of Ewing’s are soft tissue. As only a handful of Ewing’s patients are under the age of five, and few in soft tissue, she was a very rare case. And today she lives. Unfortunately, so many we have met are not here with us today. Statistically speaking, this small child has an overall 80% chance of survival. If she has certain forms of tumors, her prognosis is worse. And, if her cancer is metastatic, especially to the lungs, or a diffuse brain tumor, she could well be gone today. That is the reality of this world.

In September, my wife and 45 other women are shaving their heads for these little heroes. The event will take place in California in the Los Angeles area. Then they will appear on national television on Friday and work on getting on other television shows. The main goal is to raise awareness for a disease that is largely swept into the dark corners.

Peace and Grace,
Greg

Twitter: @gbworld

Everything Has a Cost; Make Sure What You Do is Worth It


I was talking to a coworker the other day about an initiative to save money on a project I am currently working on. He stated there is a cost to doing business and if the contract is written so the cost is higher than reward, you need to get out of that business. This got me to thinking about the song “Everything that Glitters is Not Gold” by the late Dan Seals, especially this part:

Everybody said you’d make it big some day
And I guess that we were only in the way
But someday I’m sure you’re gonna know the cost
’Cause for everything you win there’s something lost

We sometimes like to think there is a free lunch or that good things in life come without a price tag, but as long as you have to choose how to spend your 24 hours, you have to make trade offs. I am currently making some trade offs in being with my family to make more money, with the focus on spearheading our debt so we can live anywhere we like without the thought of having to focus on high paying jobs ever again. At the same time, I am keenly aware of a personal story of a man who traded his family for every promotion offered to him. If you choose to spend more time with your family, it will likely stop you from becoming a billionaire. Conversely, you might reach that billion dollar goal if you sacrifice your friends and family. Each person has to decide the currency they want to keep.

What makes this whole time currency tricky, is other people are determining the currency they are willing to put up for their goals. A good “salesman” is the person who can achieve their goals while helping others achieve their own goals. This leads us to:

Win-Win versus Lose-Lose

We often think of salespeople at the masters of maximizing what they want while minimizing what we get. I think a large part of this comes from dealing with particular types of salesmen (car salesmen come to mind). But this does not describe the good salesman.

One thing that good salesmen have in common is the ability to create win-win situations. Zig Ziglar stated it nicely when he said:

You can have everything in life you want, if you will just help other people get what they want

There are a couple of important takeaways, as this relates to “everything has a cost”

  • You have value and should not sell yourself for less than your value – the next topic
  • Your value goes up when you have proper synergy, whether this is just you and the right knowledge/tools or you are in a group
  • Anyone trying to have you sell yourself for less than your value is not a good salesman (and definitely not your friend)

Not realizing your value

Let’s talk about value.

The bible states that God has granted each of us with immeasurable value. Aristotle stated that the whole is greater than the sum of its parts. This means so many of us undersell the value we have. When we combine in groups, this value can be even greater.

The important thing to note is the price you are willing to pay should be greater when you are getting greater value. In like manner, the price you are willing to let yourself go for should be greater when you hold greater value. Too many of us undersell ourselves.

Relating this back to “everything has a cost”, you must correctly estimate your value correctly and assert yourself to somewhere in the vicinity of that value. The dynamics, once again, go up when you are dealing with more than one person, like a group or your family.

Trade Offs and Agendas

I have a degree in Mass Communication with a specialty in film and video. In my career, I have worked with media and I have a keen understanding of how the media works. Often, for a variety of reasons, the story is already determined before the media arrives to report it. My wife finally saw this in action when my daughter Miranda was going through cancer treatment. We had a local news station show up to highlight a fundraiser for Tiffany’s Team in Training effort, focused around Miranda. The songwriter’s fundraiser raised a small portion of the total amount Tiffany had hoped, but the media reported they had met their goal. The story was already written before we were ever interviewed.

Sometimes you can steer the media in another direction, however. Below is a video about the Vanderbilt Cares for Kids event. The reporter was there to highlight the event, which focuses on all children that spend time in the hospital. In the process of interviewing Tiffany, the direction changed, and a good portion of the slot focuses on childhood cancer.

   
Changing the set path for a story

Turning the media is not the norm, however, unless you have a more compelling story than the one they set out to tell. It is extremely difficult if they have a competing story coming in at a greater volume. Let me put a real life example to this concept.

In September, 46 women are going to shave their heads for childhood cancer. It was a crazy idea Tiffany came up with last fall that has grown into a full blown effort. Currently, there is an effort to decide where to shave their heads and how to engage the media. One option is being on a national show.

On the surface, the show appears like a great option. Millions of people will watch the show and the mommas will be featured on stage for a short time. If everything works out, the following will be achieved:

  • Millions of people will tune into the 46 mommas site and hear the stories and awareness will be raised
  • Celebrities will be influenced to take up the banner for childhood cancer

But there is a potential it will go the other direction:

  • National media exposure will be lost to the louder message from the show
  • Celebrities will already have their own cancer focus and none will be turned to raise the banner

Of the two options, and my experience with the media on both sides of the camera, I find it more likely show will get the majority, if not all, of the national media attention. And, since the celebrities often show up for just a few minutes and then leave, and often have their own private green rooms, it is unlikely any of the mommas will get enough time with any of them to sway their opinions enough to make a difference.

The point here has nothing to do with whether the mommas should be on show, or even whether they should shave their heads before the event or not. The point is there is a value in what they are doing, and, if they are wise, they will figure out the value and determine the correct course of action.

Relating all of this back to “everything has a cost”, we have the following points:

  • Everyone has a value – we might also add, in the above example, that the whole being greater than the sum of the parts dictates even greater value
  • The value must be determined based on the dynamics of the situation at hand. This is true of events, but also true of determining the correct job one should take, how to spend Friday night, etc.
  • The value of time is then weighed against different demands.

The end game is you take the value and make sure you choose the demand that most respects your value, whatever the traded currency is.

Wrapping It Up

When we first got on television with Miranda, we felt the exposure was the important message. In the process of doing the interview and watching the story degrade, we determined that the value of correctness in the story, and started making sure the media had fact sheets. We also learned how to turn the media to what was important to our cause by making it a more compelling story. It all comes to the value we placed on getting the story out and getting it right.

For you, it could be negotiating your next job or your next raise. It could be determining which event to go to this coming Friday. Or it may even be a once in a lifetime event. No matter what it is, don’t sell yourself short.

Peace and Grace,
Greg

Twitter: @gbworld

46 mommas –


This week, I worked on taking over a project that probably did not need taking over thankful to a momma and her friend. Hopefully soon the 46mommas.com site will be up. In the process I got wind of some of the photos of cancer mommas with their children. Take a look at the pictures and see the beauty in what you see. Then read the bottom of the post for perspective.

jumama1

import pic 11 10 2009 195

DSCN3629

Tiffany and Miranda

Arden Bucher (7)

Some of the pictures are professionally done. Almost all can pass as professionally done. Now here is an exercise. Guess which of the children above are alive today. If you want to go by statistics, 80% of these children should be alive. Want to take your guess?

I know this may sound a bit morbid, but this is the reality of childhood cancer. And, if you run with the rates in 1995 against current population, 46 children are diagnosed every work day. If you run against newer incident rates from the American College of Pediatrics, it is 53. Once I can churn the SEER stats and run them against the census numbers, I will have a true picture.

One more thing. In most instances, the treatments are almost the same they were in the 1970s. Despite huge strides in adult cancer, the children are still working on 30 year old protocols. Very harsh news.

Peace and Grace,
Greg

Twitter: @gbworld

Scanxiety


I am sitting in a room in Austin, Texas. My youngest daughter, Miranda, went in for tests today. The doctor has recommended she start going to the survivor clinic and she will only have to see him once a year. It is a good feeling. Yet, deep in the back of my mind I have a small bit of uneasiness as I still don’t have results from the scans. We call this scanxiety.

If it were in Miriam Webster’s Dictionary, it would appear like this:

Main Entry: scanx·i·ety
Pronunciation: skaŋ-ˈzī-ə-tē
Function: noun
Inflected Form(s): plural scanx·i·eties
Etymology: Middle English scannen, from Late Latin scandere, from Latin, to climb; akin to Middle Irish sceinnid he springs, Sanskrit skandati he leaps and Latin anxietas, from anxius

Date: 14th century to circa 1525

1 painful or apprehensive uneasiness of mind in parents over medical scans performed on their children
2 : an abnormal and overwhelming sense of apprehension and fear often marked by physiological signs (as sweating, tension, and increased pulse), by doubt concerning the reality and nature of the outcome of a scan, and by self-doubt about one’s capacity to cope with it

The odds are on my side. We are past the normal median mark for recurrence for Ewing’s Sarcoma patients. We also have a child who had favorable age,  along with placement and “staging” of her cancer (“staging” in quotes, as Ewing’s is not staged like most cancers). Yet there still hangs a small amount of uneasiness at what might come back.

The level of scanxiety is increased in cases with parents of children that have cancers very likely to recur. In some cases, the scanxiety level is so high it overwhelms.

You want to feel a bit of what it feels like. Imagine the picture below is your child. The picture was taken in November of 2007 and is a picture of Julian Avery, who was diagnosed with Medulloblastoma in March of 2007. Cancer finally murdered him on January 19, 2008 and he earned his wings. Forever 4. He just wanted to be 5. The cropping of the picture makes you long to see what is outside of the boundaries, much like a parent waiting for news about whether or not the cancer had come back. Cement the picture in your mind, and imagine it was your own child.

cancer14_024

If that is not enough to get the picture through, examine these two pictures below:

24119395_124518526611 24119395_124518535113

Above is the outcome none of us wish on any parent, not even our worst enemies (although you find you have fewer and fewer enemies after going through this route, as you find the things that used to make you hate are inconsequential). And it is both possible and perhaps very probable with many children. While 75-80% of children with cancer survive in the United States, about 2750 children are housed in stone gardens every year, their parents robbed of their laughter, their cries. About 2750 families lose a child, a brother, a sister. About 2750 wish they had one more day, one more week, one more month, one more year, one lifetime.

And the words each parent fears is “the cancer is back”. Imagine it for a moment and you will understand about 1% of what scanxiety is about.

Peace and Grace,
Greg

Twitter: @gbworld

Childhood Cancer: 46 Mommas Shave for the Brave


As many of you know, my wife Tiffany is trying to raise awareness for childhood cancer this September (National Childhood Cancer Awareness month) by getting 46 women together to shave their heads. Currently, there are 33 participants in the group. Here is a map of where the participants are from.

46Shave

Here is a state by State List of the states represented, with the number of participants:

California      2
Florida         1
Illinois        1
Kansas          2
Kentucky        2
Louisiana       3
Michigan        1
North Carolina  2
New Hampshire   1
Ohio            1
Oklahoma        1

Pennsylvania    5
Rhode Island    1
South Carolina  1
Tennessee       1
Texas           1
Virginia        3
Washington      4

For those not familiar, the reason for the number 46 goes like this:

  • 12,500 children diagnosed with cancer every year
  • 46 diagnosed every week day
  • 7 die every day

The figures are based on the incidence statistics from 1995 with current population estimates. The figures are incorrect, however, as I have detailed here. Tiffany did not know the incidence rate had risen at the time she came up with the idea and 46 is the most commonly cited number. Hopefully this event helps catapult this horrible disease into the forefront.

Peace and Grace,
Greg

Twitter: @gbworld

Easing Childhood Cancer Treatment Symptoms


  • I have not written on this subject in this blog, although we have detailed much of the information on Miranda’s site:

http://www.caringbridge.org/visit/mirandabeamer

I wanted to give out this information, as is. It is not scientifically sound, as a study of 1 is not scientifically significant. Perhaps over time we will amass enough cases we can push for a study on some of these items.

What I describe are Complementary treatments, or treatments to be used in conjunction with standard oncology treatments. They are not alternative treatments, meaning in lieu of standard treatments. Here are two things to keep in mind, one against either side of decisions on complementary treatment options:

  • Always talk over any complementary treatment with your doctor, as there are supplements that interfere with chemo (selenium and cisplatin come to mind)
  • Conversely, when you doctor states “there is no evidence that suggests it works” understand that there is generally no evidence it does not either.

    NOTE: It is unlikely, if the current system persists, there will ever be evidence complementary treatments are effective, as complementary treatments are not generally tested in clinical trials (there are currently 63 for antioxidants with cancer, but most are aimed at abating symptoms, none deal with antioxidants at the same time as chemo – on the other hand,, there are 354 trials for actively using trastuzumab (aka, Herceptin) in cancer treatment – 63 for antioxidants and 354 for 1 drug).

We found nothing in what I write about here that goes counter to standard treatment, nor did Miranda’s primary oncologist. We also found great success with each of the items mentioned. But, as I will state over and over again, a study of one is not a scientific study. At best it is anecdotal evidence. If I had to do this over again, I would have started these methods earlier to completely avoid the pain.

Background

In September of 2007, Miranda was diagnosed with Ewings Sarcoma, a rare childhood cancer, at the age of 3. Over the next month, we experienced both the horror of cancer and the horror of the treatments used to fight cancer. once we realized that the doctors main, if not sole, job was to kill the tumor, we felt it necessary to research options to alleviate some of the pain of the treatments.

Miranda’s treatment regimen was 7 cycles of two alternating rounds of chemo:

Round 1 (VinCAid)

  • Vincristine (the Vin in VinCAid)
  • Cyclofosfamide (the C)
  • Doxorubicin (Adriamycin, thus the Aid)

Round 2 (IE)

  • Ifosfamide
  • Etoposide

Many of the chemo agents above can cause severe gastro-intestinal problems. In addition to the above, she was given prophylactic doses of antibiotics to keep infection at bay, killing off much of the gut flora.

Mucositis

First, what is mucositis? Mucositis, in simple terms is swelling and the formation of ulcers in the mucous membranes along the digestive tract. Essentially, it is chemo tearing up the lining of the entire digestive tract. One teen boy described it like “getting a potato chip stuck in your throat”, but the pain being thousands of times worse with no way to wash it down.

During Miranda’s first round, she experienced horrible mucositis. So much so, we could not get her to eat. The two most startling symptoms were:

  • A sore that covered almost her entire tongue (imagine a canker sore this size and you get the idea)
  • Vomiting up what appeared to be giant spiders (from ulceration of the throat and stomach)

The doctors gave us mouth wash and pain meds, neither of which seemed to offer much relief.

After the first round, we determined something had to be done and found L-Glutamine. After putting her on L-Glutamine, most of the symptoms disappeared and we certainly never had a round anywhere near as serious as the above.

Our method of choice was mixing L-Glutamine in with her juice and having her drink it. At the time, there was no way to get her to swallow pills, so it was necessary to find something she could drink. You can buy L-Glutamine in powder form and give a scoop once or twice a day to abate symptoms.

The idea that L-Glutamine works on mucositis was noticed by the NCI, who started a clinical trial, which was later withdrawn due to lack of funding. I am sorry to see the trial cancelled as it would be interesting to see if others had the same success we had.

Clostridium Difficile (or C Diff)

C Diff is a opportunistic bacteria that creates a whole host of problems for the cancer patient. You first notice it by its unique odor, which is unmistakable. It is generally combined with very bad bouts of diarrhea. It can be fatal if not treated. The solution to C Diff, from a medical perspective is to give very high doses of strong antibiotics, like Vancomycin and Gentomycin. In Miranda’s case, these led to some rather severe kidney problems. In my book, that makes C Diff a good thing to try to avoid.

We went through three rounds of C Diff early on in the treatment. We then started researching and found that probiotics showed promise against C Diff. C Diff appears to be a rather weak bacteria, compared to the natural gut flora. But it is also opportunistic and grows like a wild fire when the gut flora is killed off. This is common when you use antibiotics as readily as they are used with a child with cancer.

After starting probiotics, we never saw another C Diff infection. We found out later that the main oncology transplant doctor at the hospital prescribes probiotics for his patients.

Others

I don’t have the details on what we used when Miranda had her kidney problems, so I don’t want to write about it here, as incomplete information is useless. We also used a variety of supplements to combat potential future heart problems, including fish oil (anti-inflammatory) and CoQ10 (antioxidant), although we did not use any antioxidants during the actual chemo drip, as doctors state it will render chemo ineffective (there are animal studies that refute this, but none in humans).

Peace and Grace,
Greg

Twitter: @gbworld

Caroline Pryce Walker Conquer Childhood Cancer Act Funding Update


If you have not seen my earlier post on the Caroline Pryce Walker Conquer Childhood Act (entitled The Caroline Pryce Walker Conquer Childhood Shill Game), this post is a follow up for that one.

The latest news for 2010 is as follows, according to Cure Search

  • $3 million for the CDC to set up a childhood cancer registry
  • $1 for HHS to provide outreach, resource and program services for children with cancer and their families
  • $1.6 million for pediatric cancer research in the defense appropriation bill (not sure why it is here)
  • $4 extra in the NCI budget for childhood cancer

Summary

$30,000,000 promised
$  9,600,000 delivered (32%)
———————————
$20,400,000 short (68%)

Funding expected to date

$60,000,000 promised
$  9,600,000 delivered (16%)
———————————
$50,400,000 short (84%)

 

I wonder if we will have to have someone in Washington fighting each year to get a small portion of what was promised? If you go back to my earlier post, you see this quote from the appropriations committee:

The National Cancer Institute reports that it is meeting the funding
level identified for pediatric cancer research in the Caroline Pryce
Walker Conquer Childhood Cancer Act of 2008 within its base budget. The
conferees commend NCI for its attention to this issue.

It takes government math to make $4 million equal $26 million (considering the defense appropriation bill was not included at the time the statement was made). And you want to hand over your lives to these people?

Peace and Grace,
Greg

Twitter: @gbworld

The Caroline Pryce Walker Conquer Childhood Cancer Shill Game


RANT WARNING: I am a bit cheesed off about our government at this moment.

In 2008, President Bush signed legislation that would allow Congress to appropriate $150 million to research for childhood cancer. It would be appropriated in $30 chunks over 5 years. the Act was signed on July 29, 2008 and allowed funding starting in 2008.

When the Act went through Congress, it was voted on unanimously. All but 17 Representatives voted yes and the 17 were non-votes, making it an unanimous vote. The Senate sent it through to Bush with unanimous consent.

The allusion, or illusion if you like that word better, is that an extra $30 million would be given to childhood cancer each year, for five years. The truth is it was a wonderful game, or lie if you wish, from our Congress.

In 2008, nothing was given to the Act. In 2009, nothing was given to the act. Now, we have the following statement coming out of our government for 2010:

The National Cancer Institute reports that it is meeting the funding
level identified for pediatric cancer research in the Caroline Pryce
Walker Conquer Childhood Cancer Act of 2008 within its base budget. The
conferees commend NCI for its attention to this issue.

So, the NCI has already agreed to spend more than $30 million, so we just call it a wash. For the record the NCI funds “childhood cancer” at about $170 million per year. Here is the graph (from http://www.nci.nih.gov/aboutnci/servingpeople/pediatric-snapshot.pdf):

funding

Looks pretty good at first glance. An additional $30 million would mean over $200 million for pediatric cancer. But what percent of this money is actual spent on childhood cancer trials (as that is where gains are made)?

image003

We are spending more, but doing less? How can this be. AUTHOR’S NOTE: $26 million is less than $30 million. Here is the intent of the Caroline Walker Price Conquer Childhood Cancer Act (see actual text of H.R. 1553 here):

To amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers.

Note the intent of the law is “to advance medical research and treatments”, not to advance the public relations of our elected officials as they switch the money promised to advance cancer research and change it into monies already allocated.

Spending for 2010 (

  • $4 million for the CDC to study looking into a pediatric cancer registry
  • $1 million for educational materials for parents of children with cancer

So we MAY get a registry finally and we have some reading material. The other $25 million for 2010 is already in the NCI budget, probably to fund the $26 million they were already going to spend on pediatric cancer so they can take away that money and devote it to pediatric AIDS (NOTE: a portion of the pediatric cancer budget is spent on pediatric AIDS).

That is how a shill game works folks. Watch the pea! Watch the pea! No, it’s not there, so I am taking your money and putting it elsewhere. You should have kept your eye on the pea. Thank you for playing. Don’t you just love me for giving you the opportunity to play.

On a positive note, Congress has passed an act from Committee to regulate the BCS bowl system. The Democrats (no Republicans allowed?) have agreed to compromise on health care and they are already talking re-stimulating the economy to add to the massive failure from earlier this year (well, success if you include the jobs in non-existent Congressional districtsColorado had 17 out of 7 Congressional districts reporting jobs saved or created). But no additional monies for childhood cancer.

Let’s summarize:

  • No additional funding for childhood cancer in 2009 (unless the $2 million earmark stays in the defense appropriations)
  • $1 million in brochures and a $4 million on a study for a pediatric cancer registry in 2010

To quote Joe Wilson (only a bit more appropriate this time and not aimed at Obama):

YOU LIE!!!

Please note there are some Representatives and Senators that are interested in funding this. As soon as I can get some names, I will pass them on. Our elected officials who believe a promise is a promise should be commended for their actions on childhood cancer. The rest of them should be berated, especially those on the appropriations committee.

If you are interested, I would mark down June 21-22, 2010 for Cure Search’s reach the Day. This is a great time to descend on Washington DC and bring the media in tow.

Other posts in this series:

·         Working with Relative Numbers (AIDS vaccine, Cancer Drugs)

·         Childhood Cancer Statistics (13,712 estimated diagnosed in 2008)

·         Understanding Appropriations – The Carolyn Price Walker Conquer Childhood Cancer Act

Peace and Grace,
Greg

Twitter: @gbworld