Almost daily, I see someone on Twitter asking for help in finding, or paying for, a drug called Xtandi (or enzalutamide).

Two years ago, my father-in-law was told that he needed that drug. His prostate cancer, which had metastasized to his bones, was no longer responding to regular chemotherapy, and he was in pain. Xtandi is a new chemotherapy drug, and it’s a last resort for prostate cancer that has spread. It won’t cure it. It will, hopefully, slow down its progress before the inevitable end.

He had to take it indefinitely, and it was neither cheap nor easy to find in Venezuela. It’s not in the list of drugs provided by the Social Security hospitals. In 2014, a box with 112 pills, good for 28 days of treatment, cost around Bs. 32,000 in Venezuela, or about seven monthly minimum wages back then. Buying it abroad was not really an option, as it cost at least $5000 per month.

For the next year, it was all about Xtandi: getting the money each month, and then hustling to find the drug anywhere in the country. Sometimes he had to go a week without it, or took half a dose.

He died early one morning, at home, ten months ago. We needed his doctor to sign the death certificate, so we went to an oncological public hospital, the Hospital Padre Machado, where she works pro-bono in the mornings.

We gave her all the drugs we would no longer need, including 50 days’ worth of Xtandi. When she saw it in the bag she was surprised, and became emotional. Another one of her patients needed it, and couldn’t find any.

Xtandi is now much more difficult to find than a year ago. It can take months to find the first box. Any time I read pleas for Xtandi, my mind goes back to December of 2014, when he went weeks without the drug. He and everyone else spent the festivities worrying about it. I know that tweet is a desperate appeal from someone trying to buy a some time for themselves, or for a loved one.

When my wife reads the pleas for Xtandi, it’s worse for her. “I miss him, a lot”, she tells me, “but I can’t help think in how much pain he would be today if he hadn’t died. I thank God he died then.”

Watching a loved one suffering from unbearable pain in the bones is harsh, but knowing it’s somebody else’s fault is harsher still. The indignation that someone –call it the government, Chávez, Maduro, whomever– is able and willing do this for no reason at all is tough to take. They can inflict physical and emotional pain, from a distance, on both a mass and a very personal scale, like a kid burning ants with a magnifying glass. They can do it for no fucking reason, undeterred, unpunished.
Everyone knows the condition is terminal. Still, it shouldn’t have to be like this. And all the family can do is feel like shit.

5 COMMENTS

  1. In mostly every other place in the world, for a doctor to accept and dispense drugs outside of the normal chain of custody would be a malpractice offense that would result in their license to practice medicine being revoked. We, of course, live in a completely different reality.

    Even outside of Venezuela, doctors are “bending the rules” and taking professional chances to help people here, by prescribing drugs for patients they haven’t seen. On a recent trip to the U.S., I went to get a prescription for my blood pressure meds. Normally, doctors are only allowed to write a scrip for a maximum of four months. Given my situation, the good doctor doubled the dosage for my prescription, so I could buy eight months worth of my meds.

    • ….We, of course, live in a completely different reality…..Indeed! As you write, the “chain of custody” is a serious issue and while one can sympathize with the plight of Venezuelans, or others for that matter, in need of medications, the ethical dilemma faced by many physicians in other parts of the world is equally serious. Many do so risking their professional careers. Again, “The indignation that someone –call it the government, Chávez, Maduro, whomever– is able and willing do this for no reason at all is tough to take.” Yet, we are reminded to be patient…..

  2. That’s a heartbreaking story. Obviously representative of many. That persons responsible cannot be held accountable for this – that they can live their lives in an alternate reality under the protection of absolute immunity, civil, criminal and political- is awful. We are seeing evidence everywhere of a direct connection between the ineptitude and corruption of the regime, and death.

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