Why Today's Supreme Court Ruling Matters to People With HIV
BY E. Wu
June 26 2013 11:10 AM ET UPDATED: June 26 2013 11:13 AM ET
When I first met José, he was already intubated in the intensive care unit, breathing only with the help of a ventilator. Suffering severe pneumonia, he had been found unconscious in his apartment by the landlord. José wore a crucifix on a chain around his neck, and he had a business card for the local LGBT center and a bottle of HIV medication in his pocket. There were no documents to confirm his identity.
For weeks my medical team and I meticulously watched over José’s physical health. Twice his lungs collapsed, and we put in several catheters to reinflate them. Five times he went into respiratory failure despite being on maximal mechanical support. We spent hours manually pushing air through his breathing tube to keep him alive. A multitude of continuous IV medications and blood products maintained a semblance of vital signs. Drains in his bottom kept him clean and dry. We could not feed him because he had persistent bloodstream infections. Every week the quality assurance team came by to ask, What are your care goals?
This is usually a question my medical team and I would discuss with the patient or a patient’s family. But José could not be awakened and no one ever came to see him. Fingerprinting turned up no leads. No missing persons report had been filed fitting his description. We called the doctor who wrote José’s prescriptions. He gave us the number for an emergency contact, but that man said he had not seen or heard from José for months and knew no personal information about him.
José’s profound disconnectedness troubled me. Every day his nurse and I evaluated all his tubes, medications, and machine settings with extra care, trying to compensate for his loneliness. I would squeeze his hand for a moment before I left, though I wondered if he was still with us in this world. The immensity of his solitude weighed on me. He could pass away without anyone who had ever mattered to him having a clue.
How did José become so cut off? Was it because he was gay or HIV-positive or both—or something else altogether? Working in a safety net hospital, I have cared for many people like José, who are hanging by mere threads in the margins of society. What kills them, and often in heartbreaking ways, is not their physical illness. It’s their social isolation. Stigma is the cultural stress that ultimately extinguishes their lives.