How greater health equity can help PNH patients
A committee I'm on developed a white paper to address the topic
The World Health Organization (WHO) defines equity as “the absence of unfair, avoidable, or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically or by other dimensions of inequality.” WHO applies that concept to health equity, noting that it “is achieved when everyone can attain their full potential for health and well-being.”
Health equity isn’t a common topic of conversation. But because I’ve been diagnosed with two chronic illnesses — aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) — I believe it’s vital to address it, as well as the various barriers that exist in maintaining one’s health.
Late last year, I began further exploring the term. I served on a committee of health professionals and patient advocates tasked with explaining it in further detail to PNH patients, healthcare workers, and caregivers. Our many Zoom calls were filled with great conversations about the topic.
Together with the Rare Disease Diversity Coalition, we developed the document “Health Equity for People Living with PNH: Creating a Leveled Playing Field.” This white paper details the many factors that prevent patients from receiving the best possible care. They include geographical barriers, financial disparities, a lack of timely diagnoses, and the need for more research to develop better treatment options.
To understand health equity, it’s important to discuss specific experiences that patients and caregivers have in the healthcare world. Once that’s done, we can begin to address the issues. We can also speak with medical professionals, help patients better understand their own concerns, and create an action plan.
PNH patients face many challenges. As the white paper notes, a timely and accurate diagnosis is crucial, but it doesn’t always happen. When I was trying to get diagnosed, I met with several doctors who ran various tests on me. After many referrals, I finally found a doctor who specialized in blood disorders and was able to give me a correct diagnosis.
During that process, I didn’t know if I’d ever be diagnosed, which caused anxiety. The time spent searching for that diagnosis also delayed the start of my treatment.
After speaking with several patients about their rare disease journeys, I learned that my story isn’t unique. Other rare disease and blood disorder patients had similar stories.
Another barrier is the cost of healthcare. Financial constraints and worries make patients hesitant to seek care.
Geographical location is another constraint patients face. Patients who live in rural areas face challenges in traveling to doctor appointments and receiving care quickly.
Access to healthcare should be universal, yet many barriers make that difficult. Our white paper details many factors and recommendations for enhancing health equity for PNH patients. If this speaks to you, please share it with others. It takes the effort of everyone to make health equity a reality.
Note: PNH 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 provider 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.