The Global Angst of Sickle Cell

In doing research for the sickle cell map of foundations, centers and support systems around the world, I stumbled on a few facts that left me feeling beleaguered.

In Israel, a country with approximately 400 people with sickle cell, the SC Foundation there takes a personal interest in each individual patient. The foundation provides housing, transportation and covers all medical expenses for patients with sickle cell.

In the UK and Europe, well, they have free healthcare. In addition, people with sickle cell over there can apply for public assistance, and can get a monthly stipend to help cover extraneous costs.

In the US, a country with 80,000 people with sickle cell and 400,000 people with the trait, the government does…um….? Nothing. You apply for Medicare and get denied by the system that says your condition is ‘not severe enough‘, while people with ‘depression’ get to live for years off SSI. You pay for insurance, have to worry about the pre-existing condition codicil in every plan, and get sacked if you’ve been on the job less than a year and sick more than 10 days.

Of course, there is another side of the spectrum. In Nigeria, a country with 4 million people with sickle cell and 40 million people with the trait, there is no health insurance to bail you out. If you can’t afford your medical bills, well then, you won’t get treated at any of the private hospitals, where the system is pay before you are treated. If you go to the public hospitals, you have to wait for ages to see a doctor, and God forbid you have any complications.

Complications where in a country like Bahrain, you could die from while waiting for treatment. Where people with sickle cell are only allowed 1 dose of pain medicine every 8 hours while in the hospital. Where 7 patients with sickle cell died in Salminiya Hospital, all in the same month, because no-one understood that the complications of sickle cell were deadly.

In Ghana, the 1 sickle cell center in Accra had to close because they didn’t have enough funds to run the clinic. In Australia, you would be hard-pressed to find a match if you did need a blood transfusion. In India, millions of people are suffering from sickle cell and the government is just recently taking notice.

Sickle cell has been around for 100 years. It was the first discovered blood disorder. It’s been around longer than Leukemia, HIV, longer than Breast cancer. And yet…we’re still waiting for mobilization by the World Health Organization, by governments, by sickle cell disease organizations around the world. People with sickle cell are dying DAILY by the droves, because doctors know very little, and do not manage complications well.

I’ve always held the firm belief that sickle cell does not kill us. It’s the complications that eventually lead to mortality. Yet these complications are ignored by physicians on a regular basis until it is too late.

My dear warriors, our governments have failed us, our sickle cell organizations are failing us. Everyone is lacking vision, foresight and support. The only one not failing us is God. We must not fail each other. Please continue to research, learn your bodies, embrace a healthy lifestyle and understand the complications. For until a time that sickle cell becomes a disease relegated into faint memory like smallpox; we must be empowered and educated. We must participate in essential research that can pave the way to a cure. We must embrace each other, learn from each other, share, give advice and break sickle cell silence.

Be apathetic no longer. Apathy kills.

Blessings and love,

~Tosin