Jorge has haemophilia, a disease of the blood.
This is his struggle in order to stay alive in the land of Bolivarian socialism.
Haemophilia is a disease of the blood, people with this condition have a really high risk of bleeding to death because they lack a clotting factor so they can’t form a proper blood clot to stop bleeding.
Tsars, princes and queens amongst the European royalty in the late nineteenth and early twentieth died from the incapacity of their blood to form a clot.
Back in the day, before molecular and genetic medical treatments were available, many ghouls, spiritual healers, and quacks claimed to have treatments for haemophilia.
People with this disease get hurt very easily:
- If they smack their heads with the cupboard, they die from a blood collection inside their skull called subdural hematoma.
- If they cut themselves butchering some meat, they can bleed to death.
- If you have haemophilia and you ride one of those cars that didn’t have a modern seat belt and happened to be in a minor car crash, chances are you internally bleed to death. Because bones and joints get terribly hurt with haemophilia.
But nowadays, haemophilia is a treatable chronic disease. Patients inject themselves with the clotting factor their bodies can’t produce and go about their business.
At least in the developed world.
If you follow your doctor’s recommendations, stay out of dangerous lifestyles (that means not indulging in any extreme sports, nor live in Venezuela, for that matter) you can have a pretty good life.
Now I want you to meet this guy, we’ll call him Jorge
Jorge was diagnosed with haemophilia when he was a very young boy.
Since a very young age he constantly got nasty bruises and cuts from things that his parents considered menial.
For example, when you’re learning to ride a bike, you’re bound to fall sometimes.
But for Jorge, when he fell from his bike the first time, despite the fact that he had elbow and knee guards and his helmet. He developed nasty black and blue patches all over the side he fell on.
His mom took him to the paediatrician, he ordered a couple of tests, and after finding that some of his basic labs were altered, the doctor ordered more special, expensive tests.
On march 1998, Jorge’s blood was sent to the Municipal Blood Bank of Caracas, the most advanced public blood bank in the city and was diagnosed with haemophilia.
He was seven years old at the time. – A late diagnosis by Public Health standards.
His whole lifestyle changed.
His parents took extra care to give him the medication he needed, took extra precautions with him: that meant no sports, and no average schoolyard play- despite many tantrums Jorge learned.
Growing up, Jorge and his family had to do the occasional run to the emergency room because every kid trips and falls once in a while- But Jorge grew up to be an average teenager.
Always aware of his blood disease, Jorge took extra precautions.
It’s 2016 and while he was driving his dad’s old Ford Fiesta through the busy highways of Caracas.
In order not to hit a reckless mototaxista, his car crashed the highway barrier.
The seatbelt saved Jorge from going through the windshield.
Jorge had minor cuts from the shattered glass and he knew what was next, a probably lengthy hospital stay.
In pain, he called his parents and almost an hour and a half later, in the middle of a giant gridlock, the National Police Traffic Echelon, a tow truck, and the civil defence paramedics went to help him.
He was transferred to the University Hospital of Caracas emergency room and doctors started to look after his wounds. When he told them that he was haemophiliac, the problems arose.
If you thought Obamacare had red tape, try getting sick here.
You see, in Venezuela, if you’re hospitalised and need clotting factors, doctor’s don’t just fill out the paperwork and the hospital’s pharmacy gets them the medicine. Bureaucracy is so deep that a special request needs to go to the Hospital Director and the Director has to personally see the patient bleeding in order to authorise the dispensation of the blood clotting factor with a form addressed to the Venezuelan Institute of Social Security and then patients have to pray for the medicine to be available.
What happens if the hospital director is, let’s say… filming chavista propaganda?
Most likely, the patient will die.
Six people with haemophilia have died this year.
Luckily for Jorge, the hospital administrator was in her office. And authorised the treatment.
But it wasn’t available the first three days.
Eventually Jorge recovered.
But that’s not the reality for may haemophiliacs in my country.
According to the Venezuelan Association against Haemophilia, an NGO devoted to fighting the disease and raising awareness there are 4616 registered haemophiliacs and with different diseases of the blood.
In Venezuela recombinant activated factor VII and factor IX are not available since march this year. And the Venezuelan Institute of Social Security isn’t distributing haemophilia medicines to regions.
So if patients get sick, they have to travel to the biggest cities in the country or retort to travelling hundreds of miles to Caracas.
Reality is terrible, the scarcity of blood clotting factors and medication to treat these rare diseases have the Municipal Blood Bank of Caracas on a technical shutdown.
It’s as though we have got on board Doc Brown’s DeLorean and traveled back in time to the 1950’s when we had nothing to treat these people with.
I write these sort of articles to let people know inside and outside my country that despite what Foreign Office Chief Delcy-the little orphan-Rodriguez and the People’s Ombudsman Tarek William –steroids- Saab say, there is indeed a humanitarian crisis in my country that’s taking people’s lives.