For STAT‘s investigative series Coercive Care, Eric Boodman reports on the sickle cell patients who have been steered toward sterilization. In this story—part five of the series— Boodman introduces us to Tammy Clemons, a sickle cell patient juggling pain, feelings of doubt and loss over a coercive sterilization, and life with a complex disease. (We recommended the first story in the series in June.)
She didn’t want to be admitted to the hospital. She wanted to go home. She’d tried not to come at all, hydrating, resting, waiting it out as long as she could, but by dawn on that Tuesday morning it had become unbearable. She called 911, rode the ambulance in the half-light. That was six hours or so ago. She’d already gotten three doses of opioids. The next step, the doctor said, would be a pain pump — a button she could press, to give herself smaller but more frequent doses. She hated the pain pump. It was supposed to give her more control, but could feel like less. Physicians preferred it for its lower risk, but to Clemons, those blips of relief never felt like enough.
“Do we have to?”
“No, don’t worry, we can’t make you do anything you don’t want to do,” he said.
It was true. They couldn’t admit her against her will, couldn’t force her to take tests or meds. There was aways a tradeoff, though: the test she hated but couldn’t do without, the procedure that scared her but might keep her out of the emergency room — choices that hardly felt like choices. She liked Barnes-Jewish Hospital, trusted her main doctor, a sickle cell specialist. In the years since she’d become a patient here, Clemons had become an expert, conversant in the jargon of the disease. Avascular necrosis meant a loss of blood flow to the bone, killing tissue. Pheresis meant siphoning her blood, filtering out the sickled cells and replacing them with healthy ones from someone else.
What you chose depended on what you knew. It was at Barnes that she’d learned people with sickle cell could have children after all. As she started coming here, she’d seen other patients with kids in tow. She hadn’t thought that was possible. Her old family doctor had told her that if she got pregnant, she would die, or her baby would die, or both.
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