Foundations should not be judged solely on how much money they raise for charities. Often its actions are based on who they know, just making a call, not expecting anything in return. In other words doing the right thing in life can be equally, if not more, rewarding than donating funds to a particular cause. There is an old saying “there are those that talk the talk, and then the ones who walk it.” Richard Plotkin, Vice Chairman of The Max Cure Foundation, a 501 ( c ) ( 3 ) non-profit charity (MCF) devoted to making a difference in the area of pediatric cancer, retired in 2008 after practicing law for 38 years as a partner in a regional law firm, Day Pitney LLP, to form MCF with his family following his grandson, Max’s, diagnosis of cancer (Max is now 10 years old and considered a six year cancer survivor). MCF, including the period of one and one-half years prior to its formation in December 2008 through the Max Cure Fund, has given over $1.5 million to pediatric cancer causes – to fund research and through its Roar Beyond Barriers program, to financially and emotionally assist families (generally low income or military) while their children are battling the disease.
A few months ago Richard received a call about a young boy, age 10, the same age as his grandson, with a rare form of brain cancer called Diffuse Intrinsic Pontine Glioma commonly referred to by the acronym DIPG. Richard knew the disease was generally terminal and afflicted children up through the pre-teen years. Richard, who learned of this family through one of MCF’s supporters, referred the family to Dr. Oren Becher who is doing research at Duke University Medical Center in an effort to find a cure for DIPG, one of the many cancers that afflict children. Of the 13,500 children diagnosed with cancer each year, approximately 200 to 300 are afflicted with DIPG. MCF has financially supported Dr. Becher’s research over the last few years. Richard was recently told by the family that their journey started in earnest from the time communications with Dr. Becher began. In fact, Richard was told the family is in continuous contact with Dr. Becher as he has become a central figure on the team the family assembled to attack the disease and to hopefully cure their son or, if that is not possible, to at least extend his life. Another significant member of the team is Dr. Sharon Gardner, an oncologist at NYU Langone Medical Center, specializing in children’s cancers, including those affecting the brain. The family looks to Dr. Gardner to coordinate the efforts of the team. MCF has worked with Dr. Gardner in connection with its Roar Beyond Barriers program.
Drs. Becher and Gardner in concert with other medical professionals on the team recommended the boy be given a new drug developed by Novartis that was still in trial known as BKM 120. It had been proven to be successful in women with breast cancer and some other adult diseases. The FDA granted what is known as a “Compassionate Waiver” to allow the use of this drug to determine if it had any positive impact on the boy’s tumor. He had been on this drug for some time with good results but after a while, its effectiveness had waned. He had however far exceeded the two months that he was given to live by one of the doctors the family first consulted. Dr. Becher refused to give up hope and based on research he had been doing, recommended that BKM 120 be combined with two other drugs, one of which is manufactured by Novartis and the other by another drug manufacturer. Novartis’ approval and cooperation was needed. Time was of the essence. Richard was contacted by the family to determine if he knew anyone at Novartis. Richard did not but stated he would determine if anyone at his former law firm had any such contacts. Through Richard’s immediate efforts, with the assistance of two of his former law partners, the family was able to speak to the Sr. Vice President, U.S. Clinical Development and Medical Affairs, at Novartis who was in England but volunteered the family could call him at any time. This was just last week. The family recently met with Richard, and it was there he was shown a recent video of the youngster climbing a rock wall at a gym – even though his mobility was weakened due to the disease. When the boy reached the top of the wall, he gave the victory sign to his Dad below. Seeing that video and speaking to the family underscored to Richard that he made the correct move retiring from the practice of law and devoting his life to making a difference in the area of childhood cancers – perhaps, as with this young boy, one child at a time.
Richard explained to the family that all he did was introduce them to Dr. Becher and later, communicated with his former law firm to see if anyone had any dealings with Novartis; from that, one of his former partners, after speaking with Richard, reached out to folks at Novartis; one of the Novartis representatives who was contacted reached out to the head of the entire drug development function at Novartis – he, as noted, was in England and invited the family to call him immediately, even if in the middle of the night in England. They connected and Novartis took it from there, immediately getting the whole Novartis drug development group involved. It became a top priority at Novartis and, as of earlier this week, things were progressing, with the hope that within a relatively short time, the requisite commitments and approvals will be forthcoming in order to permit the treatment to start. The health provider has already approved the treatment with the combination of the three drugs.
Could this series of events prove to be a turning point for pediatric cancer and how Big Pharma looks at our children who need them more than ever before? Not only will this potentially be life saving for the youngster (or at least extend his life), but it will potentially be a major accomplishment for Novartis if the drug combination, recommended by Dr. Becher, improves the boy’s condition, expands his life and potentially, what we are all praying for, allows the child to live a long and healthy life. The benefits to Dr. Becher, who recommended the treatment protocol, if it works, would be monumental – he has devoted his life to the task of studying DIPG and attempting to find a cure. He is the man “behind the curtain” who we all take for granted until we need him. What this story demonstrates, among other things, is that the steps taken by a family faced with one of the worst nightmares imaginable, a child with cancer, can reshape the way doctors, pharmaceutical companies and insurers can all band together for a greater purpose – achieving good medical treatment.
So remember, “don’t be so quick to judge a book by it’s cover,” or as in this case, a foundation by its size. Small foundations know how to Roar for a Cure, and in this case, the Roar was heard and embraced.