Day 17 - Children's cancer Awareness Month

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This is Michael. Today is Thursday and a great day because Melissa and Ashley head to Washington, DC for CureFest, a weekend rally and series of meetings to lobby and rally for issues important to children suffering from cancer. I am proud of both of these ladies and the work they do for our kids with cancer and Cannonball Kids' cancer Foundation, and you will hear more about this over the next 4 days.

I expect that this weekend there will be discussion of why there aren't more therapies available for children that suffer from all 12 types of children's cancers, and more developed specifically for children and not "dosed down" versions of drugs developed for adult cancers. And, most of the time, that conversation quickly goes to the simple conclusion that "it's the fault of the pharmaceutical companies". I'd like to discuss that today in more detail, in hopes that someday there will be more development of child cancer-specific drugs by pharma companies, but also because I'd like to hope that a focus can be appreciated as to where CKc believes real solutions can be found.

Children's cancer Awareness Facts of the Day:    Pharmaceutical companies fund over 50% of adult cancer research, but less than 5% for children’s cancer research. In the last 20 years, the FDA has initially approved only 3 drugs for any childhood cancer. SOURCES: PAC2, CureSearch

So, the problem is the pharmaceutical companies, right? I have read a couple of posts in response to ours stating these facts are all the fault of the greedy pharmaceutical companies. True? No.  

Why?

Drug manufacturers and pharmaceutical research companies are private companies. They have the right to do whatever research and manufacturing they believe is in their best interests of their owners, employees and shareholders. Should anyone be able to  walk into a private corporation of any size, small or mega, and force the company to spend close to $1Billion (with a B) to develop a product that may or may not work, but even if it does, the amount of "customers" is relatively small and it will take years, if ever, just to recoup the initial investment into developing it. It won't happen and doesn't, and the last 25 years have proven it.

We know what the market is for children's cancer. We already know that “only” 13,500 children a year are tragically struck with cancer, and that 13,500 is divided up among 12 major types of cancer found in children. It takes many, many years for a pharmaceutical company to have a drug approved for use in the U.S. by the FDA. Hundreds of millions of dollars are invested in research and development into potential drugs and therapies before one cent of sale occurs. When a drug or therapy is finally approved, there must be a population and a market to sell the drug into to recoup the investment and have a reliable stream of revenue for the company. Remember, drug companies are not charitable organizations --- they are in business to make revenue because they employ hundreds, if not thousands, of people who have families to support, too. These companies also have shareholders of their stock. What right do we have to force pharmaceutical companies into bringing a drug to market that is not known to be a cure and can only be sold to a limited number of patients? Answer:  None.

The blame is not with drug companies. These companies are made up of people, too, and they all have families. They are not the "bad guys" --- far from it, and I know. I have worked with and known many of them over the past 20+ years.

So what’s the answer? There is no debate that it is absolutely shameful that only 3 drugs for childhood cancer (for all 12 types of cancer combined, and some would argue there has only been one new drug) have been made available to kids with cancer in the last 21 years. Think about that. Of all the strides made in different adult diseases, including cancer, the kids have fared by far the worst. Think of any adult onset medical problem (examples: diabetes, cancers of all type: breast, prostate, lung, etc., heart disease) and try to figure out if treatment and survivability has improved for that disease or affliction in the last 20-25 years. Almost every single one has. Yet in children's cancer, it largely has not. Chemotherapy agents used 25 years ago on kids with cancer are the same ones given to Cannon and kids this week treating for various forms of children's cancer. Can that really be true in this “modern age of medicine”???? It is. Shame.

The answer lies not in blame of the pharmaceutical companies. The answer lies in making more people aware of these children suffering from cancers and the horribly painful treatment they receive in an effort to try to live. The answer lies in making our government representatives aware that the National Institute of Health (NIH) is only allocating to children's cancer research 3.8% of the approximate $5 Billion dollars allocated annually to all cancer research. The answer lies in telling all of our neighbors about our children suffering from cancer, and telling them about the faces of children who have died of cancer, and make them so aware that they help us fund privately the places that will someday solve and find a cure for children's cancer:  the researchers at Children’s Hospital of Philadelphia, Memorial Sloan-Kettering, St. Jude’s, Dana Farber, Helen DeVos Children's Hospital, Phoenix Children's Hospital, Texas Children’s Hospital, Seattle Children’s Hospital and so many others.

Screaming for the heads of the pharmaceutical companies is, in my mind, pointless and misdirected wasted energy. Private funding from private charitable foundations is where this cruel puzzle will ultimately be solved. Public awareness will bring dollars to these private foundations, and from there, the research and new drugs and therapies necessary to win this fight will come.  

Please help us at Cannonball Kids' cancer Foundation. Consider donating at the secure link found here:

https://secure.squarespace.com/commerce/donate?donatePageId=5403bb30e4b0a7034afbc6dd

Tell someone in line at the grocery store, ask your children to do a project in school on kids' cancer, or send an educational link from CannonballKidscancer, St. Baldrick's, Alex's Lemonade Stand or CureSearch to all of your friends and those on your email list. Doing so will ultimately increase funds to charitable foundations in small, but sometimes big, ways. Increase in funds to charitable groups and foundations means more and broader research into why children's cancer occurs and trying to find a cause, and in the interim, less painful and more effective treatment so that kids currently suffering from cancer have a better chance to live to be an adult. This can be done. Please --- in honor of all the children lost to cancer every single day and to honor the pain suffered in the hearts of families who have lost a child, a sibling, a niece or nephew, grandchild or godchild to cancer. Help us make people aware that cancer strikes children and we need help to fund more research to bring an end to it.