My bank account was running on empty and somehow, I had lost my health insurance and never realized. It was the day of my discharge; I had been in the hospital for a typical sickle cell crisis for about fourteen days. A social worker by the name of Luna came in with some documents.
She delivered a letter from the hospital stating that I owed them almost $250,000. Those fourteen days had racked up a lot of cost. I had no idea it cost that much to treat sickle cell disease.
I pondered the medical system and didn’t understand why money was involved, but doctors and nurses have to pay bills, I supposed. What was I going to do?
I owed big pharma money, and they were coming to collect. Luna had advised me to call my insurance, but I started to panic; I was stressed, I was recovering from a crisis, and here I was, all of that stress aiming to put me back in the same spiral.
I was stressed to the point I was waking up every two hours, unable to sleep, restless, and even more annoyingly, waking up in priapism.
I couldn’t help having a sickle cell crisis. What am I supposed to do, tiptoe through life? Regardless of my mutated hemoglobin— I’m still a citizen, and I have responsibilities; I have to live.
It was strange that I had no insurance during my visit, especially for someone who has reoccurring episodes of pain every three months, something did not add up.
When I called the insurance company, I was on the phone for about 2 hours, trying to get the situation resolved. They said I had been cut off due to a glitch after they updated their system.
There was nothing I could do but reapply for the health insurance. However, it would take months for this bill to clear and for them to look into my hospital stay.
What was I going to do? I had prayed to God to save me. Two days later, I got a call from Luna, my social worker; she informed me of Charity Care.
This is provided when patients who are uninsured for a relevant, medically necessary service, and who are ineligible for governmental or other insurance coverage, are given free care.
I guess I fell under this case; I went back to the hospital to fill out that application to get my debt covered. However, I still owed a couple grand, since the ER doctor was non-contractual. This still bothered me, but I was grateful the bill had gone down tremendously.
I imagined Big Pharma as this scientist with all his bodyguards coming to the medical ghetto, saying, “Where’s my money?”
I was afraid, I felt unwanted, rejected from society as if I could no longer validate my experience as a person living with a disability.
I had a job that understood my illness, yet I had no benefits and no paid sick leave. I was on government insurance, and still, somehow, it was taken away from me.
I had half a fraction of a penny to my name. I couldn’t even afford narcotics; when I was discharged, the nurse gave me coupons to make my prescriptions more affordable.
I didn’t even know they had coupons for prescription medication! And for narcotics.
Hydrea cost about $60 out of pocket. However, the other drugs were even more expensive. There I was, in my room, counting my pennies to see if I could afford my medicine.
What was I going to do? How was I going to survive without insurance? And why didn’t America have affordable health care?
I started to think about many things; understanding the cause of health care disparities can be complex and multifactorial, which includes issues related to the environment, poverty, housing, education, health behaviors, and even segregation and discrimination.
For a country that enslaved blacks for many years, the least they can offer affordable health care. Yet, I never asked these questions as a child. I had never considered sickle cell to be a disability until I transitioned to adult care.
It’s not like I wear it on my face, unless you count the myth that people with sickle cell look ten years older than their average age.
They want us healthy to work and yet have no universal health coverage.
The sickle cell mutation created a lot of capital during its discovery as a molecular disease. Created job opportunities for chemist and geneticist, and yet sickle cell warriors are paid with no residuals.
It’s time to put some respect on the sickle cell gene!
The causes of specific health care disparities are complex. I was curious about the overall cost of sickle cell disease (SCD), so I did a little investigating.
Cost Effective Treatment
In 2019, Novartis, a leading pharmaceutical manufacturer in the United States, introduced a new drug, Adakveo, that got approval from the Food and Drug Administration (FDA) for treating SCD patients over the age of sixteen (Johnson, 2019).
With this new drug, Novartis anticipated the estimated cost of treating SCD to be from $85,000 to $113,000 annually, depending on the patient’s prescription dosage. However, insured patients would pay less (Johnson, 2019).
An inquest into the total direct cost of healthcare for sickle cell patients in the US by Salcedo, Young, and Bulovic (2019) found that the average annual costs toward the management of SCD for patients 0-9 years was $18,859 and $43, 586 for patients 29-29 years.
Research by Shah, Bhor, and Yuce (2019) found that from 2015, the estimated average cost per patient per month was $1389 ($16,668 annually), and a lifetime cost of care standing at approximately $460,000.
Breaking down the pertinent constituents of treatment and medication expenses is vital to understand the justification for these costs further. They include:
- Hospitalization accounting for over $900 million with an average of $ 14,337 per patient (Shah et al., 2019)
- Medication drugs like Hydroxyurea and Endari, approved in 2017 (Johnson, 2019). Other medicines and treatments for SCD patients include Voxelotor, Allogeneic hematopoietic stem cell transplantation, and non-myeloablative conditioning regiments (Saraf, Ghimire, Patel, Sweiss, Gowhari, Molokie, Gordeuk & Rondelli, 2020). These treatments are quite costly, as explained by Saraf et al. (2020).
- Vaso-occlusion crisis hospital admission.
Huo, Xiao, Garg, Shah, Wilkie, and Mainous (2018) further explain that $2.98 billion is spent yearly in the United States to treat SCD. The composition of this cost includes the following:
- Inpatient costs (57%) averaging $15,040 per patient.
- Outpatient costs (38%) averaging $10,079 per patient.
- Patient’s out-of-pocket expenses (5%) totaling $1,293 per patient.
Although sickle cell disease is a rare genetic disorder, I never considered how expensive it is to treat the reoccurring symptoms.
There have been efforts made to provide funding for sickle cell disease; for instance, “The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (S. 2465), was signed into law by the president on December 18, 2018.”
However, while Samir K. Ballas made claims in 2001 that the NIH distributes funding to ten sickle cell centers in the U.S., these centers have less than ten percent of patients with SCD nationwide.
It makes you question the role of justice in sickle cell health care. I am thankful to have come across different organizations, such as Rare Disease Legislative Advocates, which educate the community on rare genetic disorders and legislative acts, as well as organizations like Sick Cells, which specifically educate the community on policy and legislative bills that impact sickle cell disease.
For anyone interested in learning more about how they can advocate for policy change and rare health care disparities, these organization gives tools of how you can educate yourself and tell your story.
As unpredictable as sickle cell disease is, it is always wise to know your surroundings and the resources you can use to make a difference.
