Reaffirming that access to healthcare is a human right
Let's commemorate Human Rights Day with a focus on patient advocacy
No one dreams of becoming a patient, especially one who must constantly advocate for their own care. Yet countless people living with neuromyelitis optica spectrum disorder (NMOSD) face this reality every day.
Today, we honor Human Rights Day, which commemorates the adoption of the Universal Declaration of Human Rights by the U.N. General Assembly in 1948. It serves as a reminder that every person deserves dignity, safety, and the opportunity to lead a fulfilling life. While human rights may seem like lofty global principles, for patients like me, they manifest in bustling emergency departments, uncomfortable hospital rooms filled with desperation, and the fear and hope I carry into every infusion.
On this day of reflection on universal rights, I am compelled to contemplate their fragility and the need to protect them fiercely for people with rare diseases. We NMOSD patients advocate for timely care, equitable access to treatment, and the right to be believed when we articulate that something is wrong with our health.
Advocacy is not a choice
The notion of health as a human right isn’t new, but as NMOSD patients, our lives depend on it. When we face misdiagnosis or when treatment is difficult to access — due to bureaucracy or a lengthy insurance approval process — the consequences can be life-altering. Many patients struggle to find the right specialists, often traveling great distances at their own expense just to be seen by an expert in NMOSD.
Access to treatment is an ongoing human rights issue. For NMOSD patients, this access can determine whether we can walk, see, or maintain our independence. I’ve often found myself in the emergency department pleading for treatment, fully aware that time is of the essence. However, a lack of government funding for our healthcare system here in Canada has led to staff shortages, while political barriers have obstructed access to certain treatments. Additionally, private health insurance plans frequently deny coverage. Navigating infusion schedules, hospital systems, and transportation further complicates access to care.
Many rare disease patients endure years of being disbelieved. I vividly remember being dismissed as an “attention-seeker,” suggesting that I was fabricating my symptoms. The emotional toll of being minimized, mislabeled, or brushed aside is profound. We all deserve the human right to dignity in every medical encounter. Validation and compassion are, in their own way, moments that embody human rights, and when a doctor finally recognizes our struggles, it can make all the difference.
Human Rights Day celebrates freedoms, yet chronic illness often quietly erodes them. As an NMOSD patient, I live in fear of having a relapse, losing my vision, and losing my independence — fears that impede my ability to support my family and live the life I had imagined. It takes immense courage to continue living fully despite these fears.
For those of us with rare diseases, advocacy is not a choice but a necessity. Complex healthcare systems are ill-equipped to meet the unique needs of NMOSD patients, transforming our pursuit of personal care into a form of activism. Ensuring that our voices are heard has become a fundamental struggle, particularly in environments where our symptoms are overlooked or misunderstood.
Yet, within these challenges lies the power of patient communities — spaces where individuals unite, share knowledge, and support one another. This collective strength fosters a sense of shared responsibility to uplift each other, ensuring that no one faces these obstacles alone. Through advocacy, patients with rare diseases not only fight for their own rights but also pave the way for others, transforming personal hardship into a catalyst for broader change and connection.
As Human Rights Day reminds us of the universal promise of dignity and equality, let us also remember that these rights must extend to every hospital corridor, emergency room, and patient journey.
For individuals living with NMOSD and other rare diseases, the ongoing struggle for timely care, compassion, and respect is worth waging. By listening, believing, and advocating for one another, we can ensure that no one faces their health battles alone, and that every person’s right to health and humanity is fiercely protected.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.