I find comfort in data. The illusion of its logic offers solace.
Putting your nine year old daughter into a clinical trial for a drug that has never been tested on kids before requires comfort. And solace. And the illusion that *it* will all work out fine. Especially, when the condition that drug treats is life-threatening.
Two-hundred kids worldwide will be testing this drug over the next year or so; twenty here on the West Coast of the United States.
90% of the adults who took the drug in early clinical trials were cured. Cured of the fatigue and pain that my child experiences- and the other symptoms that await her. No one knows what the long term outcomes of this treatment are. But it clear what happens if the illness is not treated.
Five-hundred thousand people a year, globally, more than half the entire population of Delaware - die from this illness each year.
It is a condition that requires treatment.
Yet, there are no treatments approved and effective for the strain of the illness my daughter has.
Right now in the USA there are at the very least there are 23,000 children ages 0-18 years who have some version of this illness - that is basically the equivalent of one of every five people in Berkeley, California - suffering from a virus that can cause cancer and lead to liver failure. Most researchers believe the number to be closer to 50,000 children who suffer from this illness. Globally, the number of children who have this illness is in the hundreds of thousands.
Doctors have reassured me that liver transplant is a viable option, if, liver failure occurs before cancer.
Today, I signed on the dotted line to try a drug that has never been used on children and only tested on just over 1,000 adults.
Two-hundred kids on the planet will take part in a clinical trial to test a drug that is saving the lives of adults who have the same illness.
I am incredibly lucky. Like any parent I would do anything for my children. Like other parents I have prayed for a cure.
Up to forty-five percent of kids with this illness- clear it spontaneously. That did not happen for my daughter. Up to 85% of those people who don't clear the illness develop a chronic form of the illness, of these 30% will suffer from severe liver deterioration. My daughter's lab results indicate she is in that 30%.
Or as WHO describes it -
"A significant number of those who are chronically infected will develop liver cirrhosis or liver cancer."
Her strain of the illness does not respond to known treatments, but shows promise in the new drugs. Drugs available to 200 children across the globe.
Two hundred children. Two hundred of the the tens of thousands of infected children, each with loving parents who kiss rosy cheeks and stroke little brows daily, will leave the known world of medicine to explore the frontiers of hope.
The drug cost USA$1000USA per pill. So even if it were possible to find a way to get a prescription - its prohibitively expensive and hard to find.
It is predicted, that globally, 90% of all infected people could be cured with these new drugs - if they could afford them.
"Antiviral medicines can cure approximately 90% of persons, thereby reducing the risk of death from liver cancer and cirrhosis, but access to diagnosis and treatment is low."
It is estimated the 150 million people have this illness. That is just under one out of every two people in the United States.
A few months ago the World Health Organization (WHO) declared this drug an 'essential medicine" - those drugs that satisfy the health care needs of the majority of the population; they should therefore be available at all times in adequate amounts and in appropriate dosage forms, at a price the community can afford."
The median wage in 2015 in the USA for an individual was just over USA$26,000 - the GDP was roughly USA$50,000. To be cured of this illness - patients need to take pills for a minimum of 12 weeks- that is USA$84,000 worth of medication. Or... almost double the GDP in the USA. In India the same drug costs USA$990 for 12 weeks of treatment; there the GPD is USA$1500.
The drug is not approved for use in children. Insurance does not cover the drug. There are no patient assistance programs. There is hope and luck. There is being in the right place at the right time. There is winning the clinical trial lottery.
And there are moments like today - when you sign on the dotted line - when you weigh the odds and gamble.
When you turn to data to find warmth in the spaces between numerators and denominators.
I am mermaid and rebel - a mama to two - I believe in art, music and magic and the rest I cover up with glitter and tattoos.