A Myeloma Warrior Who Inspired Us All
It was a very sad day in December 2018 when I learned of the passing of Hardy Jones, a patient who was a myeloma warrior and true inspiration to the myeloma community. Since 1978, Hardy had pursued a life devoted to the study and protection of dolphins. He became the “dolphin defender,” and with actor and activist Ted Danson, established BlueVoice.org, an organization devoted to protecting dolphins and whales. Along the way, Hardy received numerous awards for his documentary filmmaking, including the Lifetime Achievement Award from the International Wildlife Film Festival.
Hardy Jones’s Story
Hardy was diagnosed with myeloma in 2003. His initial therapy was thalidomide and dexamethasone at high doses. I first met Hardy when the question of his having an autologous stem cell transplant arose. In Atlanta, at the time of the annual meeting of the American Society of Hematology (ASH), we did a nationwide radio show together, reaching out through about 30 stations across the country. I talked about myeloma; Hardy talked about dolphins! The listener questions were endless.
That day, we realized that Hardy’s work with dolphins could be related to myeloma. Hardy had noticed that the pod sizes of his favorite dolphins (with special recognizable markings) was steadily dropping each year. But why? The answer was a bioaccumulation of toxins in the food chain, which we had both been aware of for dolphins and humans. The chemicals involved are organochlorides, such as the agricultural fungicide hexachlorobenzene. Dolphins tolerate high doses of these toxins, which accumulate in body fat because they lack a particular gene to break them down. The unexpected problems are two-fold: dolphins ultimately get sick with infections and cancers, one of which is very similar to myeloma; and the toxins occur in high levels in dolphin breast milk, tragically leading to a high mortality in dolphin calves.
In a strange twist of fate, Hardy consumed a large amount of fish, which he loved, just like the dolphins. He, too, had been consuming bioaccumulated toxins along the way. (These can be avoided by making informed choices of which fish to eat, via this website [add link to Seafood Watch seafoodwatch.org/seafood recommendations or other site focused more on health than on sustaining the environment]. Indeed, eating fish is good. As part of the IMF-funded iStopMM project, the diet in Iceland has been studied, and the data show that sticking with the traditional high-fish diet is associated with a lower risk of progression from MGUS or SMM to active MM.) At my suggestion, Hardy’s blood was checked and revealed very high levels of mercury, hexachlorobenzene, and other toxins. Hardy underwent chelation therapy to help purge the toxins. Thereafter, fortunately, Hardy did very well on much lower doses of thalidomide and dexamethasone without proceeding to a stem cell transplant at that time. He was fully active for many years fulfilling his passion, alongside his wife, Debra. A major plus was that he was able to continue to explore the oceans and expand his advocacy for dolphins and whales.
Climate Change and Pollution
Back in 2003, both Hardy and I understood the looming impact of pollution and climate change. Both were affecting ocean life and people. It turned out that the occurrence of myeloma clustered at sites in coastal regions where polluted runoff entered the food system of aquatic life. High consumption of polluted fish correlated with increased likelihood of myeloma and related cancers.
Today, in 2019, as a life-threatening cold drives across the northeast and Midwest of the U.S., the reality of climate change is upon us. The web of life in the oceans and on land is affected. At the World Economic Forum in Davos, Switzerland, Greta Thunberg from Sweden confronted a star-studded audience with the truth. Her simple argument, “Everyone is not to blame for climate change… You, the decision makers, are to blame!” There was a short pause before Bono, in the audience, started clapping for the Swedish student, who is leading a global school strike against inaction on climate issues. She noted that climate change and pollution are not priorities for leaders gathered in Davos. She considered this outrageous.
It is certainly easy to identify many consequences of global changes to generate rage. This week, we learned of the continued dramatic decline of the monarch butterflies in California caused by climate change and pollution. A specific factor is the disappearance of the milkweed plant, as I have discussed in the past. Without the milkweed plant, now wiped out by chemicals, butterflies cannot progress from caterpillar to butterfly. Activists have many suggested remedies, including replanting milkweed!
In addition to the targets set by many countries in an effort to reduce the steadily increasing temperature globally, many other strategies can help maintain the feasibility of a sustainable future. Two recent reports are encouraging. Using genetic engineering approaches, extinct flowers are being recreated in Hawaii. Also using genetic techniques, house plants can be modified to filter the air to eliminate toxins. It is already known that water hyacinths naturally remove toxic chemicals from water. So, there are many options. As Greta Thunberg points out, what is missing is the global will to prioritize and implement what is necessary to avert what is a true crisis.
The Impact of a Myeloma Warrior
Hardy Jones was a true myeloma warrior. He learned to understand his disease and to seek out the best treatments to allow his life to continue as the dolphin defender. He participated in seminars giving back his wisdom to other patients. The achievements of BlueVoice.org are enormous and bring into focus the many threats to our oceans, indeed all of life, on planet earth. Inspired by Hardy’s spirit, the search for the cure continues, myeloma patients educate themselves each day, and we citizens of earth endeavor to advocate for a sustainable future.
Dr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.