If you decide to dive into the start-up journey, it can be the most peculiar balance between exhilaration and quarantine.
After months of working in isolation, with relatively frequent work-related travel maintaining my sanity, we can now afford to have a daytime office for me; thanks to our latest angel investor. This morning, I smiled as I got back to my old routine of turning on BBC World Service Radio whilst getting ready to face the autumnal colours on my way to my new co-working office. Just as I was leaving, I was stopped in my tracks by a Business Daily episode on “The cancer scammers”: how social media is used to target cancer patients with fake cures. Only yesterday, I was having a discussion with our Head of Marketing and our newly appointed Clinical Customer Services Manager about how we need to be careful about suggesting alternative therapies to cancer patients.
Clinical information, social media, and the internet
Despite the practicality of some of the information and content that ‘Dr. Google’ and social media platforms hold, those mediums are not programmed to filter through the multitude of content that is used and followed by billions. The proliferation of unvalidated, impersonal and opinion-lead, rather than clinically validated and scientifically sound information on the internet and social media, can lead to negative and sometimes harmful outcomes. This also includes the information and advice that wellness trackers and digital health monitoring devices provide to individuals. The latter category warrants a separate article.
A person with no clinical background or training should not use any of the mediums described above as a diagnostic, therapeutic or prognostic tool. The Business Daily report I heard this morning specifically covered scammers, or individuals who exploit health vulnerabilities to market unvalidated products as treatments for cancer. The internet and other digital mediums are a great bait for such incentives. However, there is another level of information that can be equally harmful, and the problem is that this is often on mainstream news and reports. Media is often too quick to jump with joy when a scientific report hints at a promise for the treatment of some difficult or underserved disorder, but more often than not, the results of such reports are either preliminary, not powered enough, or are in their pre-clinical stage; this means that they have not been shown to work on humans with the condition in question, yet.
Cancer: the value of diversity and clinical validation for non-conventional therapies
September is the official Gynaecological Cancer Awareness Month, and at Nabta Health, we have decided to dedicate the last quarter of this year to the topic. Five different cancers that originate from one organ system; are we correct to address them under one roof? This is beyond the point of this article, but to illustrate the need for such awareness, when asked to name a single gynaecological cancer, one in seven women couldn’t name one. This number is even lower if women are from certain parts of the world where such information is scarce for cultural or accessibility reasons. Nabta’s awareness campaigns aim to provide accurate, clinically validated information and support in both Arabic and English, thanks to our dedicated team of scientific writers, marketers and clinicians.
We had a private message recently from one of our cancer awareness group members asking what more she can do, outside of a rigorous chemotherapy regime, to help with her stage 3 ovarian adenocarcinoma. Our advice to her was that there are no clinically-validated alternative therapies that have been proven to work on improving the outcomes of metastatic cancer. When a person is diagnosed with cancer, and has been told that what he/she must do, what their chances of survival is, what the cost implications of such treatments are, and the list goes on, why wouldn’t that person find alternative, more natural and affordable ways to manage their condition? In an era which hails natural and alternative medicinal approaches, and one which continues to find direct associations between disease and exposure to processed food, radiation, chemicals and pollutants, I do not blame anyone for wanting to avoid the above at all costs. It is confusing; why would I expose myself to the very thing that is supposed to be bad for me? The science is still advancing, and new promising therapies in the cancer field are moving away from chemotherapy towards the use of immunotherapy, cell therapy and gene editing technologies. However, these are still artificial treatments.
Skyler Johnson and colleagues at Yale University published a study in the Journal of the National Cancer Institute 2 years ago which has looked at comparing cancer survival outcomes in individuals who have chosen either conventional or alternative therapies. Conventional therapies are defined as chemotherapy, hormone therapy, radiation, and/or surgery. Non-conventional therapies were defined as “other-unproven: cancer treatments administered by non medical personnel”. Their findings show there was a 25–50% drop in survival of the individuals who have used non-conventional or alternative therapies, when compared to those who have followed a conventional therapeutic schedule, with the most impressive difference seen for colorectal cancer. The study does require further validation, and the main caveat in this study, as is the case with the majority of data in scientific literature, is the fact that close to 80% of the individuals in either group assessed are white or Caucasian. This means that we cannot with certainty extrapolate those results to other genetic backgrounds. Why is this important? because we now know that genetic variability plays a major role in both disease presentation and response to therapy. This is exactly why personalised medicine, or the utilisation of physiologically and genetically tailored diagnoses and treatment, is the best way to improve on the accuracy of health outcomes. I do not blame the researchers in the aforementioned study, as the bottleneck is generally cultural. Some cultural backgrounds will not address their healthcare in a proactive manner and may not agree to participate in such studies because they do not fully understand or appreciate what the value of their engagement is for scientific or clinical research, or for their personal healthcare journey and outcome in general. It is a massive barrier for researchers and clinicians alike, and has a considerable economic impact. We have a duty to improve on how research-based outcomes are communicated back to the volunteers and participants.
The alternative therapy industry is projected to be worth more than 2 billion dollars over the next decade. Until we advance our understanding and improve on scientific and clinical research to harness the power of natural and alternative remedies, we should continue rely on various conventional therapeutic approaches to combat cancer and other potentially terminal disorders.
Complementary approaches
Whilst alternative approaches should not to be used as a stand alone treatment choice for chronic diseases, this should not prevent anyone from complementing the conventional with the non-conventional. Standard therapies can work hand in hand with other, complementary, wellness measures; in fact, this should be encouraged more by oncologists and other medical professionals. After all, environmental, or lifestyle choice aspects, significantly contribute to the development of the majority of cancers and other non-communicable diseases (NCDs) such as cardiovascular disease and type 2 diabetes. Therefore, it goes without saying that NCDs and their treatment outcomes can be improved by general wellness and lifestyle adjustments. Whilst they may not be able to reverse some of those disorders, they can improve on disease chronicity, treatment response rate and the anticipated side effects of medication.
This is no different than the advice I give to all of my fitness clients when they ask on how to improve on their health. The ‘sleep, eat, and exercise well triangle’ is the best remedy. Exercise and eating a healthy balanced diet collaborate to improve on sleep, mental well-being, and pain management; they also arm the body with the necessary repair mechanisms needed to combat the side effects of chemotherapy and other drugs. Sleep is the ultimate natural detox therapy. Our bodies can be the most incredible organic machines if we allow them to function as they are programmed to. They have built-in natural mechanisms with the ability for self-repair. Respect and treat your body well, and it will do the same to you.
Cultural inhibitors of Cancer diagnosis and treatment
I have Arab heritage and know that mentality well, but this does not mean that I am not perplexed by aspects of it, particularly when it comes to how women address health. The attitude of the average Arab woman when it comes to managing her health is the opposite of her gregarious nature. By that, I mean that she will avoid discussing or addressing a potentially negative health-related issue, particularly if it has to do with any part of the female reproductive system. I am generalising here, and there are exceptions, especially with the younger generation, but of the many ‘taboo’ topics on that list, from sexually-transmitted diseases to menstruation, cancer certainly sits at the top.
I grew up with a culture that calls cancer المرض الخبيث, which literally translates to the vicious, cunning or evil disease. The word سرطان, or cancer, is one I may read about, but it’s very rarely uttered. I will not mention specific individuals out of respect for their privacy, but the fact that I have to tiptoe around the topic highlights the gravity of the issue.
Last year when we launched our first cancer awareness campaign at Nabta Health, I approached 2 Arab women I know who have been diagnosed with breast cancer and are in remission with the hope of finding a couple of advocates to support our campaign. Both are open minded, highly educated women who have in fact addressed and treated their condition well. However, they refused to publicly talk about their journey or share their experience. This is not atypical, and I hear it more often than not. In fact, only today I was speaking to a friend whose grandmother died of ovarian cancer and whose mother and 2 aunts, despite coming from a family of doctors, refuse to have breast or ovarian screens. Ovarian and breast cancer comprise two of the most well-known hereditary cancers, with certain gene mutations conferring a lifetime risk up to 85% for breast cancer and 40% for ovarian cancer. Children of women who have had those genetic mutations are themselves at a 50% increased risk of developing either. I have thought a lot about why, and what makes our parents’ generation less likely to be proactive about their health than our generation.
Because of the strides that research and the clinical community has made to advance cancer therapy over the last 50+years, cancer can be curable or treatable; it is no longer المرض الخبيث it used to be. Despite the many discussions I have had with either family, friends or others who have come to me for advice because they can’t find it elsewhere, the big C almost always inevitably leads to the bigger D for most. I know that this is not specific to the Arab culture as I have found this to be present in every part of the world that I have lived, in varying degrees.
Closure
I have never written a blog, yet I find myself feeling the urge to write my first; not only because of the BBC Business Daily programme I heard recently. I feel that it is my duty to refine what is used by the masses to gather information, to arm vulnerable individuals with the tools necessary to weed through unvalidated content, to improve health outcomes by addressing the bias and lack of diversity in clinical and scientific data, and to empower women to be more proactive, rather than reactive, when it comes to their health and wellbeing. After all, women make more than 80% of healthcare decisions for themselves and their families.
The last 16 years of my career were spent researching how the body combats disease with the hope of creating more robust therapies. It takes too long for discoveries to move from bench to bedside, if they do. If the research funds are available to advance them along that pipeline, if they will work for everyone, if they have been tested in the right population and with the proper controls, if they present no side effects, if they are affordable, and if the disease in question can in fact be halted by a pharmaceutical intervention. Too many ‘Ifs’; now I want to make a more immediate impact.
