Highs and Lows of Childhood Cancers

HighsLows_edited-1As a trial lawyer for 40 years until my retirement a few years back to form The Max Cure Foundation, I was involved in thousands of cases – some I won, some I lost and most were settled. I do not recall any cases that carried over with me after they were concluded. I was always on to the next case without skipping a beat. That is not the situation, however, when dealing with children with cancer – some live, some die and others continue in treatment. Yesterday, March 12, 2015, demonstrated better than any other example the “highs and lows” experienced by those of us in the childhood cancer community seeking to make a difference for children with cancer and their families.

Josh Hardy, 1 year later playing in the snow

Josh Hardy, 1 year later playing in the snow

Yesterday was the one year anniversary celebrating the date that 7-year old Josh Hardy was given the lifesaving drug, Brincidofovir, by Chimerix, a small bio-tech firm located in Durham, North Carolina, that saved his life. Josh had been diagnosed with kidney cancer when he was nine months old and during his seven years, had 4 operations and several recurring bouts of cancer. In January, 2014, he had a bone marrow transplant. One month later, in February, 2014, he developed an Adenovirus and given his compromised immune system, his life was threatened. His treating physicians at St. Jude determined there was an experimental drug that could save his life, Brincidofovir, but Chimerix, as it had done for 300 prior patients who had asked for the drug between 2012 and March, 2014, rejected the request, stating it had discontinued the practice of giving the drug to individual patients and was devoting all its efforts to bringing the drug to market. Josh was given the drug on March 12, 2014, following an extensive social media and television media campaign, as part of a newly formed clinical trial (he was the first patient). St. Jude had previously speculated he would die by the weekend of March 15th without the drug.

Josh is now doing well. See the attached blog written by Josh’s mother, Aimee Hardy, and the attached photo of 8-year old Josh Hardy as he looks forward to a long and healthy life. As a result of Max Cure’s efforts to assist in getting the drug to Josh, I was appointed the pediatric cancer advocate on a Working Group established by NYU Langone Medical Center, Department of Ethics, formed as a result of what is called the Josh Hardy matter, to examine the manner in which terminally ill patients (like Josh) are given experimental drugs. One of the questions examined is whether with the use of social media, network and cable media, and print media, it is fair to favor one patient over the numerous others who do not have access to the various media outlets. In addition to being appointed as the pediatric cancer advocate for the NYU study, I was also asked to, and did, give presentations on the Josh Hardy matter to a graduate business class at The Mays School of Business at Texas A & M and to a diverse group of physicians, ethicists, medical students, professors, an author, a former politician, friends and others at Harvard Medical School. Recently, I was interviewed by Brooke Gladstone for her syndicated radio program – 500 stations nationwide – “In the Media”, on National Public Radio (NPR). It will be aired starting in New York City on March 27th.

Zachary Bernstein taken by DIPG

Zachary Bernstein taken by DIPG

My elation felt yesterday in celebrating the one year anniversary of what Aimee Hardy calls the miracle that saved her son’s life was tempered by knowing it was also the one year anniversary of the death of Zachary Bernstein, age 11, from a rare pediatric cancer known as DIPG. Zachary’s family reached out through a mutual friend to The Max Cure Foundation for assistance when Zach was first diagnosed. We referred the family to Oren Becher, MD, at Duke University Medical Center, who was doing research to find a cure for DIPG (and one of the scientists whose work was financed in part by Max Cure Foundation) and to Jonathan Agin, a friend who is now Director, External Affairs, of Max Cure, whose daughter, Alexis, died of DIPG in 2011 and who was, and is, a leader in the effort to find a cure for the disease striking children. Oren and Jonathan worked closely with the Bernstein family as they, with Zach, fought the disease. In early 2014, I received a call from David Bernstein, Zach’s Dad, asking me if I could enlist oncologists from Memorial Sloan-Kettering Cancer Center (where Max was treated for his cancer) that would support giving Zach an experimental drug manufactured by Novartis recommended by Oren Becher that would be combined with two approved drugs already on the market (one manufactured by Merck and the other by Novartis). Rather than enlist doctors from Memorial Sloan, I was able to connect David directly to the Chief of Drug Development at Novartis, Dr. Steven Stein, who was in England at the time. Novartis was a client of my former law firm, Day Pitney.

Novartis and the FDA quickly approved giving the experimental drug to Zachary as part of a combination drug therapy with the two approved drugs. I was later congratulated by a member of the pediatric cancer community in obtaining the first compassionate use waiver from the FDA for a combination experimental drug therapy for a child with cancer. This was the first I heard the term “compassionate use waiver” which one or two months later became the issue we were confronting in the Josh Hardy matter. See the blog below received today from David Bernstein. The Bernstein family following Zach’s passing formed a pediatric cancer foundation known as FlyAKite Foundation.

I attended the Shiva at the home of the Bernstein’s following Zach’s death and spoke to Zach’s grandfather, expressing my condolences. I will never forget that conversation. He thanked me for giving him hope, telling me that without having that hope, he did not know how he would have survived the several month period since Zach’s diagnosis. When I got to my car following the Shiva, thinking about Zach and my conversation with his grandfather, I cried like a baby – much like I am doing now as I finish this blog.

It is stories like those above regarding Josh and Zach, recognizing the “highs and lows” I have experienced since Max Cure was formed in December, 2008, that reinforce to me my decision to fight with all my heart and soul for children with cancer and their families. In that fight I am utilizing the skills I developed as an attorney over my 40 year legal career to advance the cause so that one day, after I am gone from this earth, children like Josh and Zach will no longer be at risk for developing cancer, subjecting their families to a parent’s worst nightmare, a child with cancer. And when that day comes, I am hopeful that my progeny (children, grandchildren, great grandchildren) will know that their ancestors (Max, his folks, Annemarie and David, and his grandfather) contributed in some small way to ridding the world of cancer in children.

Author: Richard Plotkin

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