On St. Patrick’s Day 2016, my then four-year-old granddaughter, Clara, was diagnosed with a stage 4 glioblastoma multiforme tumor – terminal brain cancer. Since that day, I have been fully dedicated to supporting her parents’ tireless efforts to find a cure.
The treatment Clara received is referred to as standard of care (SOC) and is comprised of surgery, radiation, and chemotherapy. Unfortunately, this treatment was, and is, the only treatment available, and is not a cure. Thus, we set out on a mission to find one. In our search for a cure, we met with oncologists from several of the most respected cancer centers, we attended brain tumor conferences, and we explored experimental treatments outside the United States. Sadly, we found that in fact there was no cure. However, we did learn that the recent progress in gene sequencing, immunotherapy and vaccine technology could well deliver a cure within the next five to ten years, time we didn’t have.
These findings changed our mission from finding a cure to finding a treatment that would sustain her until there is a cure. Unfortunately, we quickly learned that there were no such treatments, nor were any cancer centers working on one. In fact, we couldn’t find any institution with an initiative whose mission was to develop a treatment to sustain the lives of terminally ill patients, regardless of the disease. There were and are economic and FDA barriers:
- Economic – the expected financial return a life-sustaining treatment offers is insignificant compared to that for a cure. Research for a cure is supported by pharmaceutical companies with patented technology.
- FDA – Clinical trials are very expensive, the protocols are highly restrictive and constraining, and require years and years of testing – not an option for terminally ill patients, nor for the development of life-sustaining treatments.
With nowhere to go, we started researching all elements of the disease and possible drugs, herbs, devices and other ingredients and therapies that might delay the cancer returning. Through this process we established a framework for developing life-sustaining treatments for terminally ill cancer patients and any other terminal disease. Although developing life-sustaining treatments was not their mission, oncologists at Memorial Sloan Kettering, Duke, The New York Genome Center and others agreed that this framework made sense. This was just the encouragement we needed to continue to pursue this initiative.
There are several million terminally ill patients who wake up each day to the dark reality that they will not benefit from the latest advancements in research that will lead to a cure. Worse, there are no treatments available that might extend their life until there is a cure, thus wiping out any sense of hope. Hope inherently offers curative properties. Adding to this the possibility of a life sustaining treatment can only have an upside. That is the motivation behind Bridge to a Cure.
Essentially all cancer research funding is focused on finding a cure. While advancements in DNA and RNA sequencing, immunotherapy, and vaccine technology are providing optimism, a cure is likely years away.
The mission of Bridge to a Cure is to provide funding to research efforts intended to develop life-sustaining treatments. The expectation is that the research will not only consider current and prior clinical trials, but also drugs that are off patent, and the many non-traditional or alternative treatments.
For terminally ill patients, their greatest hope is to be in a position to benefit from the recent breakthroughs in sequencing, immunotherapy and vaccine technology. But time is not on their side. There is a gap between now and the future; one that is not being addressed. Our hope is that Bridge to a Cure will.
LIFE-SUSTAINING TREATMENT FRAMEWORK
- For most terminal diseases, there are essentially four areas to consider in the development of a life-sustaining treatment.
- The cause of the disease
- The disease itself
- The body’s natural protective pathways that have been compromised
- The disease’s energy source
- Within each of these areas, there are numerous possible attack points to be explored so as to identify the best course of action. With the support of IBM’s Watson, this would be determined by an analysis, performed by specialists (i.e. onocolgists for cancer) and molecular biologists, of the patient’s DNA/RNA sequencing and medical history.
- With the support of IBM’s Watson, the sequencing center and the patient’s treating specialist would determine which of the science-based and alternative treatments (drugs, natural ingredients, diet, devices and others) that target each of these points, should be considered in the development of the patient’s life-sustaining treatment.
- A treatment would be recommended based on an acceptable approved protocol that is less vigorous than a clinical trial, but reliable to provide an acceptable degree of comfort to the terminal patient.
- As an alternative to a clinical trial, the disease would be replicated in the laboratory to allow for the testing of numerous options.
- The probability of effectiveness of each of the final proposed treatments would be determined by capitalizing on Watson’s algorithm predictive capability.
Key Success Factors:
- Robust database: about the disease, patients, sequencing results, scientific and alternative treatments.
- Accepted alternative to clinical trials
Currently in discussion with IBM, The Rockefeller University, The New York Genome Center, The Broad Institute, Duke, and Memorial Sloan Kettering. There is interest, but funding is their concern. As I progress with this initiative I will update the status. More to follow.