Rare Disease Day 2019

I am living in a time when cancer has affected an alarming number of people in my circle of family and friends. February 28 marks Rare Disease Day around the world. While research for cancers continues, many cancers remain rare, yet they are affecting more people every day. This post is dedicated to those already on their cancer journey and in support of everyone working for a cure.

Cancer in Kenya

None of us should speak for cancer patients and survivors, because patients can advocate for themselves better than most can. I am talking about Kenyans like Gillian, who has shared her journey with osteosarcoma nine years into her diagnosis. I want as many people to know more about cancer in Kenya, as a public health practitioner keen on where we live and how we react to the spaces and places around us.

Primer: Starting to Fight Non Communicable Diseases (NCDs)

The International Agency for Research on Cancer (IARC), as part of the World Health Organization shared a 2018 report showing new cancer cases affect 0.93 persons out of every 1000 Kenyans. The most common cancers are breast cancer, cervix uteri cancer, oesophageal cancer (affects the food pipe), prostate cancer and colorectal cancer.

What Causes Cancers in Kenya?

Kenyan researchers Macharia and Mureithi (2018) found that in Kenya, cancer ranks third after infectious and cardiovascular disease as a cause of death. Their review of hospital records of cases of cancer in Kenyatta National Hospital and Moi Teaching and Referral Hospital between 2008 and 2012 revealed that between 31-49% of cancers detected were caused by infectious agents. However, cancer itself is caused by a number of core factors: (1) Direct Carcinogens; (2) Immune Suppression; (3) Chronic inflammation and (4) Cause Not Fully Known.  (Masrour-Roudsari et al. 2017)

Cancer is very unfair. A few years back, I was privileged enough to be at the bedside of a childhood friend just  before her death from cancer. It was a jarring experience to lose someone who was just starting her career and long awaited life after college. Despite my own training in epidemiology at the public health academy, I was caught off-guard, unprepared to ask myself why such a vibrant and amazing young person should have had to suffer so after her cancer diagnosis. I had spent years understanding how non-communicable diseases (NCDs) affect the population yet for Kenya, I still wondered when cancer became so common.

I remembered that when we were in school, many teens were treated for  illness when we were in primary and high school. Some with stomach and digestion conditions, others developed auto-immune response conditions like Lupus and at least one girl from our school days underwent treatment for breast cancer as a teen. We feared asking about terminal illnesses, because at the time, in the late 1990s – mid 2000s, the leading diagnosis for these illnesses was a HIV positive test, and if untreated, development of AIDS. Stigma and silence governed most of our conversations about HIV and AIDS. Cancer simply was not part of the vocabulary. I know now, that cancer prevalence was growing during that time, and whether you visited a cancer patient or not, it was a growing problem, and no less devastating.

Cost of Treatment

Today, I need not even ask. I know too many people who have a patient in India – a short code for cancer because that has become the primary destination for affordable cancer treatments. I do not have to log on social for long, before I come across a fundraiser poster or mobile paybill number for a close contact’s medical bill for cancer-related expenses. Cancer is costing us a lot, affecting and taking away people who still have so much to give to the world and lack of affordable healthcare is rapidly reducing the financial ability of families and communities to support cancer care and treatment. Omondi and Opanga, et. al (2018) have published their work assessing the cost of cancer treatment in the country with the leading cost drivers being the cost of medicines and the inpatient admissions.

Googling How To Prevent Cancer

Although a cure for all cancers is not yet here, Mexican scientist Eva Ramón Gallegos and her team announced in February 2019 that they managed to cure the Human Papilloma Virus, several strains of which are known to cause cervical cancer) The movement to prevent non-communicable diseases, (#NCDs) has brought together experts from all over the world to continue prevention of cancer and other diseases. Some of the best ways of doing this include:

  1. Develop better understanding of the cause and effect mechanism between infectious diseases and cancer.  Masrour-Roudsari et. al share that, screenings of cancer patients for infectious diseases can start to help us understand the mechanism by which these infectious agents increase the risk factors of developing cancer. They add, ‘Infectious agents, such as hepatitis B (HBV) and C viruses (HCV), Epstein-Barr virus (EBV), human papillomavirus (HPV), human immunodeficiency virus type 1 (HIV-1), Helicobacter pylori (H. pylori) and Streptococcus bovis (S. bovis) contribute to the pathogenesis of different cancers’ For the better part of the last century, we have had scientific proof that prevention of infectious diseases is possible, and where that fails, treatment of many of these diseases is within reach.
  2. Understand the role of known (and unknown) carcinogens as a cause of cancer.

Every time I hear the word carcinogen, I always remember cigarette commercials. As a college junior, I researched the role of advocacy in tobacco prevention campaigns that led to the 1999 racketeering charges that the US Justice Department brought against large tobacco companies. 20 years later, they are only just starting to tell the truth regarding the known harm that tobacco can cause to the body, including major carcinogenic effects the industry has known about for decades.

Cancer advocates have identified many other carcinogens. Known substances that can lead to development of cancer include  tobacco, radon, asbestos, deep fried foods, formaldehyde, ultraviolet rays, alcohol, processed meat, engine exhaust and polluted outdoor air (American Cancer Society, 2016). However,  the effects of our level of exposure to these items, together with the exact processes which lead them to cause either changes to our DNA or to speed up cell division of abnormal cells is the continued subject of laboratory research.  

The news in 2015 adding processed meat to the known list of carcinogens created a global scare that temporarily gave us all a second thought about purchasing and eating our bacon, ham and salami. However, there remain questions about whether the bacon itself is carcinogenic, or whether it was the chemicals used in the processing that were creating additional risk of cancer. When it comes to deep frying as a risk, the US National Cancer Institute has published evidence that acrylamide, which one can find in, among other sources, foods deep fried at high temperature and tobacco smoke is a known carcinogen. The report further explains the carcinogenic effect to be because acrylamide is converted in the body to a compound called glycidamide which causes mutations to and damage to DNA, although the cancer-causing mechanism was observed in laboratory animals, whose findings can mimic that of humans.

  1. Understand the immune response and ways of boosting the immune system response: The immune system is important because ‘cancer can weaken the immune system, cancer treatments can weaken the immune system and the immune system can be used to fight cancer.’ Before a cancer diagnosis, the immune system can benefit from protection we have from birth, and protection we acquire throughout our lives e.g. through vaccines. Once there is cancer diagnosis, one of the main targeted treatments is immunotherapy, through which lab chemicals that act in the same way as the immune response are used to target cancer cells in the body. For more on the cancer and the immune response.
  2. Cause not fully known. The mind – body connection to healing is becoming a bigger part of many cancer treatment plans. Psychology Today contributor Amy Morin LCSW suggests believing your treatments will actually work, incorporating gratitude into your daily routine, steering towards optimism, meditation, imagining yourself healing, and laughter are keys to managing one’s physical health and wellbeing. A newly released Netflix doc, Heal explores the mind-body connections in more detail

Non-communicable diseases are growing in countries like Kenya, where the standard of living is creating more opportunities for us to eat and live in ways that expose us to more cancer causing agents. We have to do better by those living with cancer, and caring for loved ones with cancer in Kenya and around the world.

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