Transforming Health Care through Innovative and Impactful Research

When John F. Kennedy (not related to the former U.S. President) was 33 years old and his wife, Stacey, was 8 months pregnant with their first baby, he had a routine appointment with his gastroenterologist to refill a prescription and to talk about the vast improvement in his heartburn symptoms since he began taking the medicine. For John, all of the symptoms of heartburn and nighttime awakenings were gone since he began taking the medicine. Now, he thought, life was really starting to look up for him since he was expecting his first child in about a month. John could not suppress his excitement that day as he headed to his doctor’s office.

Upon arrival in the exam room, John could sense something was wrong. When John excitedly discussed the impending birth of his first child with the gastroenterologist, the doctor seemed oddly distant and unimpressed with John’s excitement. Instead, the doctor explained, John's biopsy results from an upper endoscopy performed in his esophagus a month earlier had indicated that although the nasty heartburn symptoms had disappeared with the new medicine, the dysplasia in his esophagus had proliferated "below the radar." In fact, the lesions in John's esophagus had gotten much worse without the symptoms. Those lesions had morphed quietly into dysplastic tumors and were now considered severe. It was carcinoma in situ, which meant that the tumor was situated on the surface of the esophagus and appeared to be contained in that one area. It was an insidious adenocarcinoma in the making.

The conversation soon turned grim. Instead of expanding the buoyant discussion of the approaching birth, the doctor began to explain the looming crisis that required immediate medical care and the removal of much of John’s esophagus. The doctor explained that esophageal cancer is one of the worst ones to endure and that there was very little the medical community could do for it. He apologized to John for the lack of a positive prognosis and told John that he ought to "get your affairs in order; this is serious."

Faced with the fact that the type of cancer the doctor discussed had no cure, John set out to defy the odds and become the first patient ever to be cured of this disease. John put a "business plan" together, called his "Cure Plan." He sought advice from, and even visited with, some of the best medical minds on the planet. After several terror-filled weeks, John discovered a clinical trial to eradicate cancerous, and precancerous, esophageal tumors. Within days, John, along with his very pregnant wife, landed in Knoxville, Tennessee for a month of experimental treatments.

John describes the treatments as something out of a science fiction movie. He was injected with a photosensitizer, which made every cell in his body extremely photo-sensitive. Not an inch of skin could be exposed to sunlight or bright light for the duration of a month or John would face potential third-degree burns. John looked like "The Invisible Man" during his treatment protocol, dressed from head to toe in long sleeves, ski mask, wraparound sunglasses, gloves, and a wide-brimmed hat at all times to keep the sunlight and bright lights from burning his skin or eye cells. This "uniform" was worn for a month until the photosensitizers dissipated enough to slowly expose the skin to sunlight again. Those "side effects" were actually the desired effects as the tumor cells held onto that photosensitizing chemical in much stronger concentrations than the healthy cells. The doctors passed lasers into the esophagus over the next few weeks and began methodically killing only the tumor cells, while leaving the healthy cells all around it, intact. After a month of treatment and "The Invisible Man" outfit, John's wife gave birth to a beautiful, 10-pound, red-haired baby boy! It was at that moment John vowed to devote a significant amount of his life to the same life-saving efforts from which he had benefitted so greatly. He understood firsthand that there was an enormous community of noble-minded individuals trying to save lives and take care of patients and families of which he needed to be a part. "How could I be the beneficiary of such kind and good will without contributing to that same community myself?" he thought.

John has devoted much of his life since those days in 1995 to causes of patient advocacy and clinical trials. While his "real" job is that of Chairman and CEO of several railroad companies in Massachusetts, John has spent much of his time speaking to medical and patient audiences, and he volunteers for a wide range of boards and groups. John is a proud, yet new, Consumer Reviewer for the Congressionally Directed Medical Research Programs (CDMRP). He is also a longstanding member of the Cape Cod Healthcare Institutional Review Board that oversees all of the healthcare system's clinical trials. John has been a board member of his regional American Cancer Society, The National Association of Hospital Hospitality Houses, and many others. John is also an active member of the National Coalition for Cancer Survivorship. John's greatest work, besides being Dad to his three young boys, is that of mentor and speaker to thousands of patients and medical professionals nationwide to discuss the efficacy of clinical trials in the treatment, and possible cure, of countless "incurable" diseases. John is living proof that a dire medical prognosis with little to no hope may not necessarily mean there is truly no hope. The CDMRP is one organization fighting hard to undo those types of terminal prognoses. John will fight right alongside Congress and others to effectuate better medical treatments for those in real need. Helping the CDMRP to review medical science and potential treatments from a patient’s perspective is a high honor that John takes quite seriously. "The people I have met and work alongside as a Consumer Reviewer for CDMRP are among the smartest and most compassionate medical professionals I have ever met! And I have met many," John said. "I am proud to be a small part of this truly incredible group that has the well-being of the many, for many generations to come, at heart."