According to Peter Glidden, ND (Naturopathic Doctor), chemotherapy kills 97% of cancer patients. To wit: “People who accepted chemotherapy die within three years of diagnosis, a large number dies immediately after a few weeks.” The clock is ticking. My 16 rounds of chemo ended about a year ago. By Glidden’s estimate, I have about two years left before chemo kills me. Should the ink be drying on my last will and testament? Glidden’s video first appeared on Facebook in 2012. It’s been posted on a regular basis by Facebook armchair oncologists as if Glidden’s word is gospel. To give his anti-chemo rant an air of authenticity and believability, Glidden bases his ideas on the work of Hardin B. Jones, a Professor of Medical Physics and Physiology at Berkeley, California. In 1956, Jones published a paper (not a study as Glidden claims) titled “Demographic Consideration of the Cancer Problem.” Jones’ opinions were culled from several previous studies. It is not the scope of my article to go into details regarding Jones’ opinions. What interests me is a quote by Jones that has been taken out of context and used as some kind of anti-chemo “proof” on numerous alt-med sites. Jones offers a dim view regarding treatment, i.e., chemotherapy. In general, “skepticism surrounded the clinical usefulness of chemotherapy for cancer in the 1950s. A great deal of resources were being invested in a controversial effort to develop drugs, yet there was no evidence that drugs could cure or, for that matter, even help cancer patients in any stage despite some impressive antitumor responses…The ability of combination chemotherapy to cure acute childhood leukemia and advanced Hodgkin's disease in the 1960s and early 1970s overcame the prevailing pessimism about the ability of drugs to cure advanced cancers, facilitated the study of adjuvant chemotherapy, and helped foster the national cancer program. Today, chemotherapy has changed as important molecular abnormalities are being used to screen for potential new drugs as well as for targeted treatments.” (“A History of Cancer Chemotherapy,” Vincent T. DeVita Jr. and Edward Chu, November 2008) On page 331 of his paper, Jones writes: "It is most likely that, in terms of life expectancy, the chance of survival is no better with than without treatment, and there is the possibility that treatment may make the survival time of cancer less" It’s been noted elsewhere that “Jones made a number of such judgements while never himself ever being involved in cancer treatment or clinical research. He was a physiologist and statistician, attached at the time to the Atomic Energy Commission in Berkeley, California.” (“Hardin Jones and Cancer: the "Untreated Patients Live Four Times Longer" claim,” Alternative Medicine and Cancer.) Aside from his non-credentials in relation to cancer, Jones’ quote has gained life and misrepresentation in alt-med. It has mutated into various contexts and forms in alt-med’s crusade against chemo. The most common misquote is: “My studies have proved conclusively that cancer patients who refuse chemotherapy and radiation actually live up to four times longer than treated cases.” This isn’t what Jones wrote. Yet like a mutated cancer cell, Jones’ quote has changed shape and meaning and has become almost unrecognizable. Indeed, Jones’ life has morphed into a world famous cancer doctor if one is to believe some of the alt-med headlines like: “This Doctor’s 25 Years of Research Showed: Cancer Patients Live 4X Longer by Refusing Chemotherapy.” Never mind the fact that Jones was not a cancer researcher or clinician. In the world of alt-med, distortion and outright misrepresentation is what matters in their chemo-Big Pharma conspiracies. Then there is the matter of Glidden and his video. Oddly, some sites that feature the video identify Hardin B. Jones as the interviewed doctor. Unless you’re watching an episode of The Twilight Zone, this simply can’t be since Jones died in 1978. The real gist of Glidden’s video is his tirade against Big Pharm: “Ninety-seven percent of the time chemotherapy does not work…so why is it still used? Money. Chemotherapeutic drugs are the only classification of drugs that the prescribing doctor gets a direct cut of…the only reason chemotherapy is used is because doctors make money from it…period…it doesn’t work…97 percent of the time.” This makes sense since Glidden has his own naturopathic treatment to sell. Glidden says: “We have lost the war on cancer in the United States…why…when you try to bring a reductionistic phenomena like drugs and surgery to bear on a holistic phenomena, you will completely miss the boat each and every time…if every girl in this country took 200-micrograms of Selenium, in one generation, we’d eliminate breast cancer by 82%; now why aren’t we doing that?” According to the Memorial Sloan Kettering Cancer Center: “Selenium has not been shown to treat cancer or heart disease. Selenium is an element obtained in the diet from Brazil nuts, seafood, meats, cereals and grains. It is an essential part of the antioxidant enzyme glutathione-peroxidase, which protects cells from damage and DNA from mutations. For this reason, it has been studied for the prevention of diseases that are caused by or aggravated by this type of cellular damage, including cancer, heart disease, and rheumatoid arthritis. Selenium is also necessary for proper function of the immune system, but it is not known whether higher-than-normal levels of selenium can stimulate the immune system. Long-term use of selenium may increase the risk of certain types of cancer.” Brett Hermes writes: “Naturopathic cancer treatments have not been proven to replace conventional cancer treatments or to work safely or effectively in tandem with them. Since insurance companies do not cover alternative cancer practices, patients can easily rack up tens, if not, hundreds of thousands of dollars paying for therapies that do not help and that can cause harm. Naturopaths present these services as if they are beneficent, but make no mistake, the supplements, vitamins, and other therapies delivered to patients in a naturopathic clinic are all marked-up and sold to make a profit. This scheme is exactly what Glidden criticizes in the video: selling something that is not effective.” (“Naturopathic medicine has too much quackery,” Naturopathic Diaries, 2016.) It’s disconcerting that FB armchair oncologists indiscriminately post Glidden’s video. I’m not sure why they do this. Do they think they are helping cancer patients? The overwhelming majority of people who post Glidden’s video and other alt-med cancer cure remedies are not cancer patients themselves. At most, some may have lost loved ones to cancer and blame the doctors and/or chemo. But the only ones who can truly speak for cancer patients are the cancer survivors. We know, they don’t. If non-cancer people want to really understand what Cancerland is about, they should read the stories at www.ihadcancer.com/ IHadCancer provides current and archived stories that are written with great insight by cancer survivors. The best place to read and understand the cancer journey is Blue Hope Nation, sponsored by the Colorectal Cancer Alliance, on Facebook with over 10,200+ members. Want to know the reality of chemo? Blue Hope Nation has the answers. The main topic of discussion is chemo. You won’t find any members talking about chemo-Big Pharm conspiracies. Rather, we understand what chemo is about and share our experiences with chemo. Unfortunately, Blue Hope Nation is a closed group, and for good reason. It prevents trolls from coming on-board to spread their misinformation. In summing up chemo, Dan Wilson writes: “So how effective is chemotherapy? What makes this question hard to answer is that there are over 200 chemotherapies or cancer related drugs. Not every drug is equally as effective and some cancers are more easily treated than others. What we can say is that chemotherapy can be an effective tool against cancers, especially when used in conjunction with other treatments. This has been shown throughout history with multiple examples of chemotherapeutic drugs drastically increasing survival rate in and even outright curing certain kinds of cancer.” (“Debunked: Dr. Peter Glidden: Chemotherapy only works 2% of the time,” Dan Wilson, Metabunk.org, 2017) FB armchair oncologists are not doing cancer patients any favors by spreading misinformation about quack cancer cures and remedies. The danger of giving false hope is that it gives an excuse for some cancer patients to forego proper treatment for their disease and, instead, use snakeoil formulas that will not do one thing to halt the progression of The Beast. This isn’t to say that chemo is a walk in the park. After sixteen rounds of chemo in 2016-2017, I know about the nausea, fatigue, appetite loss, diarrhea, cold sensitivity, and hair loss. A few of those side effects still linger. But that’s the price I’ve paid to battle The Beast. Perhaps someday The Beast will reappear. If so, it won’t be because chemo failed me. It will be because of the nature of The Beast – cunning, baffling, and powerful. As for FB armchair oncologists – kept your misguided empathy to yourself. Don’t walk a mile in our shoes unless you’re in our shoes. © All Rights Reserved, Robert DesJarlait, 2018
0 Comments
On March 22, I attended the Native American and Rural Health Summit at the University of Minnesota Medical School at Duluth. I was there to provide the opening and closing prayer for the summit. The summit was open to researchers, clinicians, healthcare professionals, and to patients. As a cancer patient, the summit opened the doors on a topic that I knew little about. Afterward, I decided to write an article about the topic of the summit – precision medicine. But after writing several paragraphs, I found the topic too complex and I jettisoned my writing to the recycle bin. I felt defeated because once I hook into a subject to write about, I pursue it until the end. But then an odd thing happened. Several articles appeared on the Internet on precision medicine in regard to cancer and some of the advances being made. I wasn’t totally unfamiliar with personalized medicine and immunotherapy. I was aware of former President Jimmy Carter’s use of immunotherapy that resulted in the remission of his brain cancer. The main focus of the summit was pharmacogenomics. Pharmacogenomics is defined as "the study of the role of the genome in drug response. Its name (pharmaco- + genomics) reflects its combining of pharmacology and genomics. Pharmacogenomics analyzes how the genetic makeup of an individual affects his/her response to drugs." In “Bringing Indigenous Researchers to the Forefront of Genomics” by Katrina Claw (Navajo), PhD (who was the keynote speaker at the summit) and Náníbaa’ Garrison (Navajo), PhD, Claw writes: “Genomics is the study of the function, structure, and evolution of the complete set of DNA of an organism, including genes. Unlike genetics or molecular biology where single-gene studies are typical, genomics examines all genes and their interaction with each other, and the environment and its relation to diseases. …Genomic data can be used to conduct genome-wide association studies (GWAS), and over the past decade, hundreds of GWAS studies have been conducted to identify common genetic variants that are associated with particular diseases (i.e., Type 2 diabetes and cancer), some of which are major health disparities in Native American communities.” Claw continues: “What is most shocking is that 96% of all genetic association studies in humans were conducted in populations of European ancestry (Bustamante et al., 2011), while Native Americans and Indigenous people were largely left out of the picture. The 1000 Genomes Project sequenced 1,092 human genomes representing major populations around the world — among which, Indigenous people from the Americas are not represented (The 1000 Genomes Project Consortium, 2012). Similarly, Indigenous peoples in the United States are not included in the HapMap projects or the Human Genome Diversity Project, mainly because Indigenous peoples did not see any potential benefit to participating (International HapMap Project, Human Genome Diversity Project). Whole genome and exome (coding regions of DNA) sequencing is now being used to discover the exact locations of genetic variants that cause rare diseases within families, which may be important for discovering the genetic basis of rare, inherited diseases such as Xeroderma Pigmentosa (XP), a fatal genetic disease that causes skin cancer from any exposure to sunlight, that have high incidence in some Native communities. In addition, the genome sequencing of the ancient remains of a 12,600-year-old boy in Montana (to uncover Native America roots in the Americas) has stirred the ongoing ethical debate over the use of skeletal remains (Rasmussen et al., 2014), and this epitomizes the importance of having trained Indigenous researchers with knowledge of science and ethics. Despite the excitement of genomic advances and the potential benefits to human health, these advances mostly benefit European-descent populations, leaving Indigenous groups largely excluded. How do we bring Indigenous researchers to the table?” And therein lays the problem. The acceptance of genomics in Indian Country. The seeds of mistrust were sewn in 1989 when “researchers from Arizona State University (ASU) embarked on a research partnership called the Diabetes Project with the Havasupai Tribe, a community with high rates of Type II Diabetes living in a remote part of the Grand Canyon. The Diabetes Project with the Havasupai included health education, collecting and testing of blood samples, and genetic association testing to search for links between genes and diabetes risk. After several years of trying, the researchers were not successful in finding a genetic link to Type II Diabetes. They then used the blood samples containing DNA for other unrelated studies such as studies on schizophrenia, migration, and inbreeding, all of which are taboo topics for the Havasupai. “In 2004, the Havasupai Tribe filed a lawsuit against Arizona Board of Regents and ASU researchers for misuse of their DNA samples (Havasupai Tribe of the Havasupai Reservation v. Arizona Board of Regents and Therese Ann Markow 2004). The lawsuit articulated concerns about lack of informed consent, violation of civil rights through mishandling of blood samples, unapproved use of data, and violation of medical confidentiality. The initial case complaints also listed misrepresentation, infliction of emotional distress, conversion, violation of civil rights, and negligence, but it was ultimately dismissed due to a procedural error. "The Arizona Court of Appeals later reinstated the lawsuit, leading to a lengthy legal battle. Eventually, the Arizona Board of Regents v. Havasupai Tribe case reached a settlement in April 2010 in which tribal members received $700,000 for compensation, funds for a clinic and school, and return of DNA samples (Harmon 2010; Mello and Wolf 2010). Because the lawsuit ended in an out-of-court settlement, there is no legal precedent emerging from this case over how informed consent issues in research should be handled. Tribes could benefit from becoming informed of the issues that arose in the case and develop safeguards to prevent similar issues from arising in future studies.” (Náníbaa' A. Garrison, “Havasupai Tribe and the lawsuit settlement aftermath”) Garrison also writes: “Migration studies are a concern for many tribes because the scientific evidence for tribal origins may go against cultural beliefs on tribal origins or be taken as true. Tribes who are considering involvement in migration or ancestry studies should think carefully about the implications this work would have on their tribes and other related tribes. For example, if a migration study suggests that a tribe originally came across the Bering Strait from Asia, the results of the study might have political implications and challenge tribal sovereignty and land rights. Similarly, if a tribe is genetically related to other nearby tribes, involvement in research could affect those related tribes. In these ways, nearby or related tribes might be affected by the actions of one tribe who decides to participate in genetic research. To address these potential concerns, it might be important for tribes to communicate with each other to come to an understanding or agreement about what types of genetic research might be acceptable (such as understanding a disease in the community) or not as acceptable (such as research that may support negative stereotypes or that might suggest a tribe is not “Native” to the U.S.).” Claw and Garrison are but two of many Native American scientists working in the area of genetic research. In “Shifting Roles, Shifting Research: Collaborative Genetic Studies with Indigenous Communities,” Sally Lehrman writes: “But a new way of doing things is emerging, with Native American scientists playing a vital role in shaping a balance of power between the people traditionally under study and those who do the studying. Such an approach involves far more than staying in touch with research subjects and reporting results back to them, the generally accepted best practices for genetic research today. Instead, indigenous communities actively participate in the entire enterprise. Research questions emerge from the community, not from the lab, and interpretation reaches beyond an outsider’s perspective looking in, taking into account community knowledge and experience.” In one such collaboration “that reaches across Native American and rural communities in Alaska, Montana, and Washington, geneticists are investigating possible variations in DNA that might influence a person’s response to drugs used in cancer, heart ailments, and kidney disease.” Other collaborations include the Salt River Pima-Maricopa Indian Community and the Walking Forward program in South Dakota. Rebecca St. Germaine, Commissioner of Health and Human Services for the Mille Lacs Band of Ojibwe, is working to bring precision medicine to the band. Under a memorandum of understanding and collaborative agreement between the Mille Lacs Band and University of Minnesota College of Pharmacy, the band will "conduct a precision medicine study to determine the most effective smoking cessation medications for Mille Lacs Band members based on their unique genetic makeup." Lehrman continues: “Native Americans such as [Jill] Peters [Navajo] and [Rosalina] James [Lummi, Duwamish] who are working in academia and corporations say they hope to guide the process to be more sensitive, respectful, and productive. Several efforts also are under way to institutionalize change through guidelines, manuals, and decision trees. The Havasupai case may have served as a wake-up call across the nation, raising long-simmering issues and adding a sense of urgency for tribes to develop clear oversight and review mechanisms. Ron Whitener (Squaxin Island Tribe), executive director of the Native American Law Center at the University of Washington, recommends that tribes get involved in study design and process, establish community ownership of data, develop their own data repositories, and require re-consent for new uses.” How does all this relate to the average Native American? Much of our perceptions of DNA stem from the Havasupai case and/or with issues regarding migration theories, i.e., the Bering Straits theory. We have a mistrust of genetic research. The notion of biogenetic-colonialism isn’t unfounded given the history of exploitation. The mistrust continues today among individuals (and tribes) largely because there is little information available on pharmacogenomics for the average Native person. Presently, I think that on a personal level, it becomes a personal question of ethics. When I had both of my operations, I was asked if I would sign release forms regarding my DNA. I choose to sign. I felt that my DNA could be used to further medical research. Perhaps it could be used to help find a cure for cancer or another disease. One never knows. But I do think about the organs that were removed from my body. What happened to my ascending colon and left lobe of my liver? Obviously, after DNA samples were taken, they were destroyed. In my culture, the body is sacred. It is that in which our spirit dwells. When we have an operation, a part of that sacredness is removed and unceremoniously destroyed. We probably don’t think about it because of the disassociation between the surgery and our traditional beliefs. Some might seek a healing ceremony, but in this the whole body and spirit is treated and not specifically the organ(s) that were removed. Some, like me, put asemaa (tobacco) out as a way recognizing that which was taken from me. The reason why I mention this is that in the way of Western medicine, we have to set aside personal and cultural norms if we want to survive a chronic disease. And, unfortunately, one’s survival is sometimes dependent on the removal of organs and/or body parts. Traditional norms still apply and play an important role in our healing process. But our survival is dependent on two systems - Western and traditional. My argument is that if we accept the fact that surgery provides for a continued life span, then there should be more openness toward genomics and medical research, particularly in regard to precision medicine. The development of precision medicine in Indian Country would lead to healthier communities in which personalized medicine saves lives and, indeed, organs and limbs. One example I can give is a conversation I had with a Native woman I know. She came up to me after I had given colon cancer testimony at a powwow. I had said nothing about precision medicine. But she surprised me with her story. Her father has Stage IV lung cancer. He has been through numerous radiation treatments. His doctor took a DNA sample. His DNA was a match for Keytruda, an immunology drug for small-cell lung cancer. Keytruda (Pembrolizumab) is the same immunotherapy drug used by Jimmy Carter for his brain cancer. The combination of radiation and the immunology drug led to remission of this individual's lung cancer. So here is a case of a Native man using precision/personalized medicine for his cancer. He had no problem providing his DNA for the opportunity of using immunotherapy to extend his life. He had a choice. Another Native person might choose differently based on mistrust and the use their DNA. In this regard, the lack of individual genetic literacy could very well shorten one's life span. One of the messages that I carried away from the summit was about health equity among Native Americans and that the lack of inclusion of genomics has the potential to further existing health disparities. Pharmacogenetics provides new paths for healthier people and healthier communities. It’s a Brave New Indian World. We shouldn’t exclude ourselves from it. © Robert DesJarlait, 2018
|
Robert Desjarlait
|