The Disparities in Patient Healthcare
As a child born in Nigeria, I was incredibly fortunate to have my Aunt-in-law, Dr. Dorothy Esangbedo, as my pediatric physician because the quality of care I received was unparalleled. Her approach to pediatric patient care was collaborative and she was proactive about seeking outside counsel when I had health issues beyond her specialty.
If you review my complex medical history from childhood to date, you'd understand why I have immense gratitude for Dr. Dorothy and the staff at her clinic.
Pursuing holistic patient care
In my home country, many general practitioners deem themselves a jack of all trades and see chronically ill patients as profitable cash cows. When patient care is not a #1 priority, this can sometimes lead to a medical malpractice case if the symptoms presented by the patient are wrongfully diagnosed.
Nigeria may be on the cusp of a major resurgence in sickle cell-related care but it will take political commitment from the government and the involvement of international funding agencies to realize the potential possibilities of holistic patient care.
Healthcare in Nigeria
Nigeria has the largest sickle cell patient population globally with 1 in 4 people born with sickle cell trait. It is estimated that there are over 40 million sickle cell carriers with more than 150,000 babies born with the disease yearly. Because of the widespread mortality, researchers have estimated that only 1 million infants survive past childhood. Although Nigeria has the highest burden of sickle cell disease (SCD), there is still poor utilization of standard-of-care practices for patients.1
In a questionnaire survey administered by the National Institute of Health (NIH), doctors at dedicated SCD clinics across Nigeria reported prescribing malaria prophylaxis and folic acid routinely to patients but failed to offer penicillin prophylaxis or hydroxyurea.1
Hydroxyurea is an effective drug proven to reduce the frequency of pain crises. This prescribed medication prevents painful vaso-occlusive episodes and reduces the need for blood transfusions in patients with SCD by making the red blood cells more flexible. Sadly, hydroxyurea is only recommended to patients who can afford it.
The results of the survey showed that many clinics could not afford electronic cell counters, liquid chromatography machines, functioning molecular biology laboratories for newborn screening programs, and hemoglobin electrophoresis tests which are commonly used to measure different types of hemoglobin in the red blood cells.1
SCD patients deserve better care
In summary, the care available for SCD patients is subpar and there is an urgent need for coordinated government efforts to tackle these problems. But to make a significant impact on the burden of the disease, it would require more focus on the primary care level. There needs to be a minimum standard of care at health institutions and hospitals that diagnose and treat the associated problems of SCD including severe anemia, pain crisis, infections, acute chest syndrome, leg ulcers, and stroke.
Healthcare in America
In the United States, SCD affects about 100,000 people.2
Leaving home for college/university can be a difficult transition for most teens but as an international student with a chronic illness like sickle cell, adjusting to life in a foreign country was no small feat. Everything was an adjustment – food, weather, people, language, and of course, healthcare.
My first 2 years of college were incredibly challenging because I was in "healthcare limbo" – that transition period where you are aging out of pediatric care but aren't quite an adult who's seen by a hematologist. And for clarity, I was only 16 at the time.
A challenging visit to the emergency room
My first vaso-occlusive crisis was quite an ordeal – I woke up at 2:30 AM with excruciating sickle pain, grabbed my passport and health insurance card, then proceeded to ask the front desk RA to call a yellow cab (Uber/Lyft didn't exist) and made my way to the ER. Unlike the Hollywood movies I'd seen, I sat in the ER for 3 hours in tears and despair just hoping to see a doctor.
With no previous medical record or social security number, I calmly tried to explain my symptoms and complex medical history to the attending physician but my self-advocacy was met with resistance. I didn't know what racism, prejudice, or unconscious medical bias meant but going to school in Texas opened up my pretty brown eyes to reality. Although the U.S. healthcare system is cutting-edge and technologically advanced, many SCD patients still have to cut through racism when navigating their care.
Self-agency and advocacy
Pressure makes diamonds and I had to teach myself the importance of self-agency in my pursuit of good medical care. Self-agency is the feeling of being in control but in psychology, it is the ability to filter unwanted noise, find balance, think clearly, and advocate for yourself.
Whether I'm seen in the ER or treated at the outpatient clinic, I know my body inside and out, so I make it a point to know my baseline hemoglobin, understand my lab values, and foster relationships with the people who oversee my care.
Advocacy starts with you and even though I'm a newbie in the sickle cell community, I've learned a lot of important information in a short amount of time, from physicians, researchers, nurses, caregivers, and best of all, patients. Social media has created avenues for information exchange but it's solely up to you to filter the credible and the fake content.
Actively participate in your own care
When I was a young girl, I was taught that people who fail to plan, plan to fail so my tips for success in managing your care is to equip yourself with sickle cell knowledge that supports your strategy for self-advocacy.
Healthcare systems home and abroad are quite complex and reform won't happen overnight, so get to know the stakeholders and make it your mission to actively participate in your own care.
How would you describe the quality of care you receive from healthcare providers? Share with us in the comments below!
Anonymous Poll: Which of these have you experienced as a result of your disease? (choose all that apply)