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How is the healthcare system supporting individuals with rare diseases?

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BY STEVEN KASZAB

Science has developed the ability to research, develop and create functional cures for many of our so-called “incurable diseases,” but having the ability to do something and actually doing it are two different things. Medicine has always suffered from a problem between “knowing-doing.” It is the difference between what a doctor actually does for a patient and what can be done with all that we know.

Developmental breakthroughs in medicine are allowing doctors to do things they never could imagine before. Sometimes these breakthroughs don’t fit into businesses/governmental financial or regulatory systems, meaning that it can take a long time for patients to actually benefit, time many patients may not have.

The National Institutes of Health in America invest more than $40 Billion in biomedical research each year, and the private sector twice as much. The discoveries are valued by all, but why is it so hard to use these discoveries?

Science’s ability to engineer medicines has far outpaced how these medicines are actually built, tested and put into human beings. Artificial Intelligence has assisted the community by mapping the human genome in efforts to cure various diseases.

The US Government defines rare diseases as those that affect fewer than 200,000 people in America. Some affect only a handful of people. There are over 7,000 different rare diseases, with more than 30 million people in America diagnosed with one of them. That is 10% of the US population. So, improving how society can find and care for these patients could have a great impact on future solutions.

The problem is that the health system is not flagging enough people with these diseases, while many individuals don’t even know what disease they may have, or that they indeed have a disease.  A.I. steps upfront to assist in the: recognition, tracking, analysing and identifying of these patients through computer programmed systems. Specialists input the symptoms into the machine, and often voila, a point from which a doctor can begin his medical investigation and treatment. This is a diagnostic odyssey in each individual case.

Artificial intelligence has a prominent place within our health system, including helping design new treatments, helping predict which treatment is better for which patient, screening for rare diseases with suggested diagnoses to boot.  Why are many with rare diseases often left out in the cold, to search on their own for a cure? Money! Simple.

Who makes medicines, invests millions in treatments and research for diseases?

Pharmaceutical Firms.

What are they but profit centres for: investment bankers, massive corporations and a financial structure centred upon the shareholder, and not the average Joe. Solutions can be found, but the willingness to spend way beyond what a firm can make in profits needs to be there. Sure, our DNA is constantly changing, evolving biologically. Making a drug that cures cancer may cure some, but certainly not all forms since each person is unique, their biology specific to that person.

Our health system is tied to our financial system. That is the root of it. So long as the: doctors, hospitals, researchers are tied to profit (our financial system) the necessary: technology, research and investment will not be found for those with rare diseases.

I have a disease that has no cure. My immune system is attacking the tissue in my mouth. It is sorely painful, personally transformative and damn if you could find a doctor who is a real expert in the field. Since it is rare, the institutions of industry have not found proper medicine for its management, let alone its cure. I live with it, and the disease manages: the way I eat, what I eat, how I clean my teeth, how I sleep and interact with my partner too. This disease can transfer to another. Great eh!

For those of you who have or know of someone who has a rare disease all I can say is be patient. The present day financial and healthcare systems need to change drastically, with governmental intervention in all aspects of research, planning and manufacturing of medicines. Out of the hands that care for themselves, and hopefully into the hands of those who care about you and those you love.

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Urban Alliance on Race Relations celebrates and highlights Racial Justice Award recipients

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BY PAUL JUNOR

It has been almost 40 years since the Urban Alliance on Race Relations (UARR) has been at the forefront of: promoting tolerance, social justice, racial equity and fairness. Since it was formed in 1975, they have celebrated and recognized changemakers in the fight for racial justice in diverse sectors such as: health, labour, government, education, arts, media, environment, and justice.

On Saturday, December 7th, 2024, there was a great turnout at the 2024 Racial Justice Awards Night held at The Estate Banquet & Event Centre in Scarborough. In attendance were many community supporters, civic officials, long-time racial justice warriors, and individuals from diverse ethnic groups.

UARR is grateful for all the sponsors of the Racial Justice Awards Night Celebration. It notes in its email to its supporters on Tuesday, December 3rd, 2024, the importance of its sponsors including:

  • United Food and Commercial Workers (UFCW) of Canada, UFCW, Local 175
  • The International Brotherhood of Electrical Workers (IBEW) Local 353
  • Unite Here! Local 75
  • Toronto & York Region Labour Council
  • Canadian Labour Congress
  • The Coalitions of Black Trade Union (CBTUL)

“Your sponsorship plays a vital role in shining a light on individuals and organizations driving equity, justice, and change in our communities. This celebration is more than an event, it’s a movement. Thanks to your support, we’re: honoring changemakers, amplifying unheard voices, and funding initiatives that break down systemic barriers.”

The categories and names of the awards and recipients were:

Racial Justice in Arts: Hannia Cheng

She is an artist and cultural worker who co-founded Unit 270, a DIY gallery and multi-purpose grassroots community hub in Chinatown Centre.

Racial Justice in Labour: Vanessa Story

She is the founder of the Black Youth York Region and co-founder of the York Communities for Public Education coalition.

Racial Justice in Education: Shannon Simpson

She is Senior Director of Indigenous Initiatives at the University of Toronto.

Racial Justice in Environment: Dr. Ingrid Waldron

She is a Professor and HOPE Chair in Peace and Health in the Global and Peace and Social Justice Program in the Faculty of Humanities at McMaster University.

Urban Alliance of Race Relations Agent of Change Award: Kirk Mark

He is the Equity, Diversity and Inclusive Consultant at KIRK Mark & Associates.

Racial Justice in Media: Amanda Parris

She is an award-winning writer, tv host and producer, and former host of CBC Arts Exhibitionist.

Racial Justice in Health: Camille Orridge

She is former CEO of the Toronto Central Local Health Integration Network (TCLHIN).

Racial Justice in Government: Amira Elghawaby

She is a journalist and human rights advocate who was appointed in January 2023 as Canada’s Special Representative on Combating Islamophobia.

Racial Justice in Justice: South Asian Legal Clinic of Ontario (SALC0)

This legal clinic supports low-income South Asian people in Canada.

The funds raised from the Awards night will be going toward the work of the Diversity Youth Fellowship Program. This innovative and creative program is directly involved in enabling racialized youth to get paid experience working in municipal governments and at various public policy making organizations across Canada.

The performers at the event included: Katheen Zaragosa (a Filipino music performer), Rithika Jeristus & Maya Jeristus (Bharatanatyam dancers) and Yasmin Said (spoken word artist)

UARR is looking forward to its 50th anniversary celebrations in 2025 and shared five of its strategic priorities for the next 10 years including:

  • Employment and economic opportunity: The goal is to foster inclusive workspaces and economic opportunities.
  • Education: The goal is to promote racial equity in education and research.
  • Communication: The goal is to expand public awareness and reach to amplify our stories.
  • Community engagement and outreach: The goal is building community capacity and convening towards change.
  • Truth and reconciliation-relationship building and supporting calls to action. The goal is to strengthen our solidarity and action towards truth and reconciliation.

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What is it about those short videos that keep us captivated? Oh! Yes! Our short attention span

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BY KAHA GEDI

As our attention spans decrease, short form videos are becoming more popular. From TikTok, to YouTube Shorts, to Instagram Reels, these “snack sized” videos have positive qualities alongside the bad. Mainly we want to know what makes them so effective, and why are they becoming the go-to choice for both viewers and marketers? In this article, I will be discussing how these videos have received such popularity worldwide.

First, we need to understand what counts as and what is short-form content. According to blog.hubspot.com, “Short-form videos are videos that are less than 60 seconds long.” However, some marketers and content creators agree that short-form videos can be up to 3 minutes. “They are videos that deliver information in a ‘digestible’ format so that viewers can quickly watch and save content if they’re in a hurry or enjoy it.” Now, I’ll talk about the main reasons why these videos are so popular.

First, our attention spans have gone down exponentially. Dr Gloria Mark has written a book called “Attention Span,” and she says her research indicates people’s attention spans have been shrinking over the last 20 years. According to the same article Dr. Mark said that “Back in 2004, we found the average attention span on any screen to be two and a half minutes on average. Throughout the years, it became shorter. So, around 2012, we found it to be 75 seconds. Then in the last five, six years, we found it to average about 47 seconds.” So, it’s notable that our attention spans started out longer but then decreased over time.

Secondly, these videos have become cheaper and easier to make. Unlike long-form videos, which require extensive: planning, editing, and storytelling, short-form videos are simpler. To the point where they can even be shot on a smartphone. For example, DuoLingo, the app that helps learn new languages, went viral on TikTok a long time ago by posting funny, low-budget videos that resonate with millions. Like a video of a DuoLingo plus being: tossed down the stairs, sitting outside on a rainy day, or being soaked by the shower with the title “When you ignore my notifications.”

Lastly, they provide valuable information in a short amount of time, and they are easily accessible. According to a recent Adobe Survey, two in five Americans use TikTok as a search engine, and nearly one in 10 Gen Zeers are more likely to rely on TikTok than Google as a search engine. This isn’t always reliable for real news because anyone can claim to be an expert, and you wouldn’t know if they’re telling the truth. So, even though they give valuable information in a short time, they can also give misinformation or mislead you.

Short-form videos have changed how we watch and learn things. They fit our short attention spans, are easy to make, and share information quickly. Even though they’re fun and helpful, they can also spread false information or leave out important details. Even with these problems, short-form videos are here to stay, so we should use them in proportion, but also enjoy the benefits.

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Dr. Edward McInnis on the Importance of Preventive Care in Family Medicine

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Photo by National Cancer Institute on Unsplash

Preventive care is a cornerstone of modern healthcare, emphasizing the importance of addressing potential health concerns before they escalate into severe conditions. By focusing on proactive measures such as regular screenings, vaccinations, and lifestyle counseling, preventive care offers individuals and communities the opportunity to achieve long-term wellness.

Below, Edward McInnis highlights the transformative potential of prevention in reducing healthcare disparities, alleviating systemic challenges, and ensuring that every individual has the tools and access needed to lead a healthier life.

Understanding Preventive Care in Family Medicine

Preventive care in family medicine focuses on proactive measures to maintain health and prevent illness before it occurs. This approach emphasizes regular health evaluations, screenings, and interventions that identify potential issues early, reducing the likelihood of severe complications. Preventive care fosters long-term well-being by addressing risk factors and promoting healthier lifestyles while minimizing the burden of chronic diseases.

The philosophy behind preventive care aligns with the idea that staying healthy is more effective and less costly than treating illnesses after they arise. Early detection of conditions such as hypertension or high cholesterol allows patients and physicians to manage these issues effectively, preventing them from escalating into more severe health problems. Beyond individual benefits, this care model contributes to healthier communities by reducing the overall demand for healthcare systems.

Benefits of Preventive Care for Individuals and Communities

Preventive care profoundly impacts individuals and the broader community by addressing potential health concerns before they evolve into severe conditions. Early detection through routine screenings can significantly lower the risk of chronic illnesses such as diabetes, heart disease, and certain cancers. This improves individual health outcomes and reduces the emotional and financial toll of managing advanced diseases.

Communities prioritizing preventive care experience a ripple effect of healthier populations and reduced strain on healthcare resources. When more people engage in regular check-ups and adopt healthier habits, the prevalence of preventable conditions drops, creating a collective benefit. Individuals who invest in their health through preventive measures often enjoy longer, more active lives, positively influencing families, workplaces, and society.

The economic advantages of preventive care are undeniable, as early intervention typically costs far less than treating advanced illnesses. Vaccination programs, such as those targeting seasonal flu or childhood diseases, can drastically curb outbreaks, saving lives and reducing medical expenses. These benefits demonstrate how preventive care is a cornerstone of sustainable and effective healthcare systems.

Core Preventive Services in Family Medicine

Family medicine emphasizes various preventive services designed to address health needs across all stages of life. Regular health screenings, such as blood pressure and cholesterol checks, are critical in identifying silent health risks. These assessments provide actionable insights that allow individuals to make timely adjustments to their lifestyles or begin treatment when necessary.

Vaccinations are another cornerstone of preventive care, protecting individuals and communities from infectious diseases. From childhood immunizations to seasonal flu shots, these interventions safeguard personal health and prevent the spread of illnesses within larger populations. Counseling services, including guidance on nutrition, exercise, and stress management, empower patients to take an active role in their long-term well-being.

The Role of Family Physicians in Prevention

Family physicians play a pivotal role in fostering preventive care through their ability to build lasting, trust-based relationships with patients. These relationships enable them to understand not just medical histories but also lifestyle factors, family dynamics, and social determinants of health. This comprehensive knowledge allows physicians to craft personalized preventive strategies that resonate with each patient’s unique circumstances, ensuring a more practical approach to maintaining health.

Beyond individual care, family physicians act as educators, equipping patients with the knowledge to make informed health decisions. Whether discussing the significance of regular screenings or addressing misconceptions about vaccines, their guidance helps patients take ownership of their health.

The continuity of care provided by family physicians also ensures that preventive measures are consistently monitored and adjusted as needed, fostering long-term well-being. Their ability to provide holistic and deeply personalized care sets the foundation for healthier patients and communities.

Challenges in Accessing Preventive Care

Despite its proven benefits, accessing preventive care remains challenging for many individuals and communities. Financial barriers, such as lack of insurance coverage or high out-of-pocket costs, often deter people from seeking preventive services. Additionally, limited awareness about the importance of early detection and health promotion means that some individuals may only prioritize preventive care once a health issue becomes severe.

Geographical disparities also play a significant role in limiting access. Rural and underserved areas frequently face shortages of healthcare providers, making it difficult for residents to receive consistent preventive services. In such regions, innovative approaches like mobile health clinics and telemedicine have emerged as solutions to bridge the gap. Expanding these efforts could help overcome logistical obstacles and ensure that preventive care reaches those most in need.

Cultural factors and mistrust of the healthcare system can further complicate access to preventive services. Addressing these challenges requires a multifaceted approach that includes community engagement, culturally sensitive care, and efforts to build trust between healthcare providers and patients. Strengthening health literacy and facilitating dialogue between healthcare institutions and the communities they serve are also critical steps in overcoming these barriers.

Promoting and Advancing Preventive Care

Advancing preventive care depends on raising awareness and fostering a culture that values proactive health management. Educational campaigns, workplace wellness programs, and school-based health initiatives encourage people to adopt preventive practices. These efforts create an environment where individuals feel empowered to prioritize their well-being, leading to healthier lifestyles and earlier intervention.

The integration of technology is revolutionizing how preventive care is delivered. Wearable devices that track physical activity, heart rate, and sleep patterns provide individuals with real-time data about their health, prompting timely action when irregularities arise. Similarly, data analytics and predictive tools enable healthcare providers to identify at-risk populations and deliver targeted interventions, improving outcomes on a broader scale.

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