Childhood cancer Awareness (Action) Month - Day 19

This is Michael. Today is Friday, and Cannon is feeling much better than at the beginning of this week and seems to have gotten his legs back under him and some pep and some smiles. I know Melissa has written about this before, but one of the continuing, never ending battles of children with cancer or who have fought cancer is to continually fight off regular kid viruses and colds, flu, germs, etc. When a child is treated with chemotherapy, the immune system is severely compromised. When that same child receives a stem cell or bone marrow transplant, the immune system is completely wiped out. Cannon has to have all of his infant immunizations all over again because his immune system was taken down to zero in Philadelphia last Fall when he had his stem cell transplant and the hell of 108 straight continuous hours of chemotherapy. As a result, we are always on the lookout for him for fevers and bugs and viruses--- much more danger to him, potentially, than the normal kid who is not in the cancer world.  

We will have a busy weekend with the kids. Olivia and her high school volleyball team are in a prestigious tournament at Berkely Prep in Tampa and Melissa will go with her to support her and the team, and I will get the boys up tomorrow with help from their godmother and her daughter (Angela and Nicole—the best) and take them downtown to run the Miracle Miles 5K to benefit the Winnie Palmer NICU in Orlando. We are very big fans of Drs. Gregor Alexander and Mike McMahan at the NICU, and the work done at the Winnie Palmer Hospital for Women and Babies to save the lives of babies born prematurely is fantastic. So, Cannon, AJ and Gray will be in the strollers and we will push them 3.1 miles for charity at 7 a.m. in the morning and have a good time afterward.  

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. 

SOURCE:  SolvingKidsCancer.org           

In the last 21 years, the FDA has initially approved only 2 drugs for any childhood cancer

SOURCES: PAC2; CureChildhoodCancer.ning.com; SolvingKidsCancer.org; Jeff Gordon Childrens Foundation

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 $1 Billion (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 familes 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 know many of them over the past 20+ years.

So what’s the answer? There is no debate that it is absolutely shameful that only 2 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 is only allocating to children's cancer research 3.8% of the $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, MD Anderson, Texas Children’s Hospital, Seattle Children’s Hospital and 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 Melissa and me make the general public more aware. Tell someone in line at the grocery store, ask your children to do a project in school on kids' cancer, or send a 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.

 

 

 

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