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Endometriosis, a gut-wrenching disease that continues getting ignored

Endometriosis is a disease so debilitating it can wreak havoc on the physical and mental well-being of women all over the world

A pain so searing the simple task of getting out of bed becomes a chore. Unable to move, you lay there, immobile, never knowing if the pain will lessen or ramp up. Hoping that if you position yourself a certain way the crushing pain will dwindle to something bearable. Alone you cry, trying to remedy the situation via a concoction of self-administered methods and prescribed medications — all to no avail. As the suffering progresses you begin to lose hope, asking yourself why doctors continue to doubt your symptoms, assuring this as normal and turning you away.

Endometriosis is a disease that affects one in 10 women and can present itself in four levels of severity. It occurs when the lining tissue of the uterus, similar to the endometrium, grows outside of the organ. The exposed tissue thickens, breaks down, and bleeds inside the body with no way of escaping, causing inflammation resulting in bouts of extreme pain and in many cases possible infertility.

Maria-José Arauz is one of the many people who deal with the disease. Before her diagnosis, Arauz dealt with symptoms related to endometriosis for five years. After visiting multiple specialists, she continued receiving the same conclusion: that her pains were related to menstruation and there was nothing that could be done. “They were good doctors, I mean they weren’t bad doctors with bad reviews, […] they’re just not prepared to treat people with endometriosis so most of them told me to take Advil.” Though she waited for nearly half a decade before getting diagnosed, Arauz says it usually takes some women even longer to receive a definitive diagnosis.

Dr. Sarah Maheux-Lacroix is a gynecologist who specializes in research and clinical care for endometriosis at the CHU de Québec Laval University research centre. Maheux-Lacroix believes that medical negligence that women like Arauz face  derives from the complexity in identifying endometriosis in the body to provide a proper diagnosis. “The gold standard to diagnose endometriosis is surgery. The fact that it requires surgery is one of the factors that can contribute to a delay in diagnosis.” Maheux-Lacroix says the only way to avoid misdiagnosis is to spread awareness on both a medical and societal level. “There are some doctors that are good in women’s health and others that are not, so I think we need to talk about it more.”

“For me to get all of that was a really hard process because I had to fight and advocate for myself, I had to show that my life wasn’t normal and that all the pain I was having and the anxiety I was living due to this wasn’t normal,” Arauz said.

“I wasn’t functioning like a normal person.”

Endometriosis affects women living with the disease at different levels. It can vary in four stages of severity that define the extensions of lesions in the pelvis. Some may be at a stage four and asymptomatic, while others can be at stage one and experience high sieges of pain imminently impacting their quality of life.

Women experience pain caused by endometriosis usually when they’re about to begin their menstrual cycle. The pain forced Arauz to plan around her disease instead of freely living her life. “There are days I can’t cook or can’t eat. I cannot work, I have to cancel all my plans. It’s like I have to plan everything according to the day I have my period,” Arauz said.

“I’m on the floor crying in pain and at the same time I’m vomiting from the pain as well.”

The disease can be very extensive in the abdomen and pelvic regions creating a slew of many other complications. “It can affect fertility, it can also lead to chronic pelvic pain, and can create cyst ruptures that can cause acute pain that would require emergency surgery,” Maheux-Lacroix said.

Other complications that Maheux-Lacroix noted include torsion of an ovarian cyst, and possible infections that can lead to detrimental health problems. “Endo can invade some structures such as the rectum and urinary tract system and could affect the function of the kidneys and bowels.” According to her research, there are likely different types of endometrioses that affect women differently.

Being diagnosed with breast cancer a few months after her endometriosis diagnosis in 2019, Arauz noticed a difference in care when comparing her cancer treatment to her experiences with endometriosis. “I got my treatments on time, I had a really good follow up, but I can’t say the same thing for endometriosis. Endo doesn’t kill you like cancer does, but it can kill your quality of life,” Arauz said.

“I actually find that the pain that I went through with endometriosis was worse for me than breast cancer treatment.”

More Funding for Research Is Needed

According to EndoAct Canada, the disease costs the country $1.8 billion per year. Though much more research is needed, Maheux-Lacroix believes that funding only happens when diseases are a societal concern. “As a society we decide that we want to focus on cancer or we want to fund diabetes so it’s the lack of discussion and because it’s taboo there’s that lack of discussion.” However, she’s hopeful that desensitizing the disease will eventually further funding and development for proper solutions. “It’s political and there are plenty of priorities and unfortunately endo is definitely not one but I think people are ready to hear about the disease and put more money to properly study it. It deserves to be studied a lot more.”

On Jan. 28, EndoAct Canada started the #ActOnEndo campaign to raise awareness for endometriosis. Their goal is to contact all MPs in the house of commons to advocate for the federal government to develop an action plan for people living with the disease. Since the campaign started, executive director of EndoAct Canada Kate Wahl says that the campaign is off to a strong start and they would love to contact all 338 MPs to spread the message. “We have a tracking sheet of MPs that have been contacted by advocates in the community. The last time I looked at it we’re sitting around 70 MPs in the first week,” Wahl said. “It really just speaks to the importance of this to people living with endo to see action and leadership from our elected officials on the issue.”

More research and awareness is needed to spread the message so that more women can be efficiently and effectively treated, to avoid years of suffering and receive the proper treatment they so desperately need.

Visuals by Miao De Kat @miao_dekat

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Quebec’s HIV/AIDS Services Continue Being Defunded

The COCQ-SIDA has rung the alarm about its funding crisis from the federal and provincial governments.

There are now less than five months remaining until the funding cycle for local HIV/AIDS services from the Public Health Agency of Canada (PHAC) is renewed on Apr. 1, 2022. The Coalition des organismes communautaires québécois de lutte contre le sida (COCQ-SIDA), a representational body of Quebec’s HIV/AIDS community organizations, is concerned about the deadline’s impacts.

The organization has been pointing at a crisis revolving around issues of funding. Unfortunately, rates of HIV/AIDS transmission across Canada have been on the rise for quite some time. Since 2003, Canada has implemented new programs to fight the virus in a multitude of ways, spanning from treatment to prevention. Members of Parliament urged the Harper government to increase funding, but its response was underwhelming according to doctors and activists. In 2016, the Trudeau government, in a bid to balance its  funding, shifted financial focus to prevention rather than treatment, creating huge gaps from which groups like the COCQ-SIDA are now feeling the burden. In 2016, 42 treatment-oriented groups saw their funding vanish in this shift. Because funding hasn’t increased in years according to the COCQ-SIDA, organizations that require assistance will only require more resources as cases continue on an upward trend.

The current method used by Ottawa to supply local groups with funding is primarily two-fold: HIV/AIDS service funds are distributed by the Community Action Fund (CAF) and the Harm Reduction Fund (HRF). The CAF is given over $26 million by the federal government, which they allot by granting organizations with five-year funding contracts. The HRF gets $7 million to distribute in the form of three to five-year contracts with a maximum of $250,000 for a single group annually. The COCQ-SIDA’s primary issue is that these numbers have not evolved to reflect the times.

“The impact of the decisions of the PHAC, within the framework of the 2021 calls for submissions for the CAF and the HRF, means that several member organizations of the COCQ-SIDA [who are] well rooted in their communities and [have] varied expertise find themselves victims of this chronic underfunding. The situation is even more serious in the context of underfunding at the provincial level,” said Ken Monteith, director general of COCQ-SIDA.

Due to the issue of increased demand and stagnant finances, many groups are struggling. On top of these issues, contracts have expiration dates. After those three or five-year deals, many organizations might not have their funding renewed, forcing their operations to be scaled down. “We are going to have to reduce our staff very significantly, to the point of having to consider closing the organization,” said Charlène Aubé from IRIS Estrie, an organization in Sherbrooke whose contract was not renewed.

Several other centres across Quebec will be faced with harsh realities this spring. Thousands of Quebecers living with HIV/AIDS, as well as others who might contract the disease will be impacted by these policy decisions in the very near future.

Graphic Courtesy of Rose-Marie Dion

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The ethical dilemma of animal testing: are animals equal to humans?

Are animals equal to humans?

People often say, “Dogs are a man’s best friend.” We always value and cherish dogs, and I wonder why we don’t do the same for other animals. Sure, dogs and cats are domestic animals, but what differentiates them from other animals? If we would never think to hurt our pets, why are mice, rats, birds, rabbits, guinea pigs, hamsters and more used for research?

Animals have been used for research since the dawn of medicine. Early Greek physician-scientists such as Aristotle, Erasistratus and Galen didn’t view this as immoral. On the contrary –– they believed that humans were of a higher status than animals and used animal testing to further understand anatomy, physiology, pathology, and pharmacology.

Thomas Aquinas, one of the most influential Christian theologians of the Middle Ages, had a similar point of view. In his famous book Summa Theologica, Aquinas writes that God made animals for man and that animals can’t reason. This justified the use of animals for human purposes, whether it be eating or research.

René Descartes, a famous French philosopher, mathematician and scientist during the Age of Enlightenment, also believed that animals were mere “mechanisms” or “automata.” Descartes viewed animals as complex physical machines without experiences, souls and minds.

However, these notions started to change when Charles Darwin questioned animal testing, when he introduced his famous theory of evolution. Darwin advocated for animal rights because he argued humans come from monkeys and have evolved through natural selection. This changed his view on the relationship between humans and animals.

In recent years, animal testing has become an ethical debate. 

Some may justify the use of animals for research to make safer products for human use and consumption.

“For me, animal experimentation is an ethical dilemma. This is because we should not use animals for this purpose, but on the other hand, animal experimentation has brought great benefits to mankind,” said Coman Cristin, a veterinary and senior researcher at the Unit of Animal Experimentation Cantacuzino Institute in Bucharest, Romania.

I believe using animals for scientific purposes to be unethical and unnecessary. Just like dogs feel emotions, so do other animals, and no animals should be used for testing.

The ideas that animals can’t feel emotions is outdated. It is scientifically proven that animals have emotions. 

On July 7, 2012, a group of scientists signed the Cambridge Declaration on Consciousness at Cambridge University in the U.K.

This declaration states, “The absence of a neocortex does not appear to preclude an organism from experiencing affective states. Convergent evidence indicates that non-human animals have the substrates of conscious states along with the capacity to exhibit intentional behaviours.”

The statement further says, “Consequently, the weight of evidence indicates that humans are not unique in possessing the neurological substrates that generate consciousness. Non-human animals, including all mammals and birds, and many other creatures, including octopuses, also possess these neurological substrates.”

It is estimated that more than 115 million animals worldwide are used in laboratory experiments every year. Not to mention, animal testing rarely guarantees a product’s safety for humans.

The Canadian Centre for Alternatives to Animal Methods (CCAAM) and the Canadian Centre for the Validation of Alternatives Methods (CaCVAM) were founded in 2017 and are based at the University of Windsor. These centres “aim to develop, validate, and promote non-animal, human biology-based platforms in biomedical research, education, and chemical safety testing.”

In a TED Talk titled “It’s time to think outside the cage,” Charu Chandrasekera, founding executive director of the CCAAM and CaCVAM, points out that 95 per cent of drugs tested and found to be safe and effective in animals fail in human clinical trials. Of the 5 per cent that are approved, half of those are withdrawn due to unpredicted side effects in humans.

Chandrasekera also highlights that diseases such as Alzheimer’s, diabetes, heart failure, ALS, and Parkinson’s have been cured in mice, but not in humans. 

Also, drugs such as Raxar, Trasylol, and Rezulin have been withdrawn from the market due to lethal consequences in humans, but they were safe and effective in mice.

When asked if animal testing is necessary for scientific progress, Hope Ferdowsian, a physician with expertise in ethics and public health, and CEO of Phoenix Zones Initiative, said, “We can ask what is necessary? Well, a lot becomes less necessary when we use our imagination, and we push innovative methods forward.”

Ferdowsian also emphasizes a need to “push this old and outdated way of animal testing and research and more toward innovative ways that rely on, for example, human cell lines or computer modelling.”

Knowing this, shouldn’t animal testing be banned?

As previously stated, all animals have feelings. Why test on mice, rats, frogs, hamsters if dogs and cats aren’t used for animal testing?

Considering the new initiatives and alternatives, scientists and researchers should reconsider animal testing with the latest advanced science of the 21st century. More specifically, our relationship with all animals and the way we view them has to change.

After all, Mahatma Gandhi once said, “The greatness of a nation and its moral progress can be judged by the way its animals are treated.”

 

 

Graphic by Taylor Reddam.

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