Twist of fate

For Ragassa Sori, a 37-year-old Ethiopian citizen and legal US immigrant, the loss of his full-coverage Medicaid benefits is the latest in a string of misfortunes that has transformed his life into the ultimate tragedy. A bright-eyed, congenial man, Sori suffers from lower-body paralysis that confines him to a plastic torso brace and a wheelchair. Yet he sees the loss of his state-funded health care as the straw that could break him. For without health care, he says, in near-perfect English, "I am without future."

Sori's tragic story began back in 2001, when he was living in Kiev, Ukraine. He had just earned a master's degree in library sciences from the Cultural University of Ukraine and was working at a local library. His wife of two years, Mekuria, a naturalized US citizen, was petitioning for Sori's green card so the two could be reunited. While waiting for the paperwork to go through, Sori began to experience severe back pain. For months, he says, he ignored it because "there was a problem with money." But by May - the same month he was granted US immigration status - the pain grew unbearable. "It felt like a sharp knife poking my back," he recalls; and so, he sought medical care.

That's when his first stroke of bad luck occurred. On May 29, 2001, doctors at Kiev Hospital determined that Sori's spine was riddled with abscesses, which required surgical removal. But after undergoing the operation, he felt no relief - in fact, he developed a fever. The doctors operated again. This time, Sori lost control of his legs.

His wife, who lives in Cambridge, decided it would be best to bring her husband to Boston. When he arrived in September 2001, doctors at Massachusetts General Hospital gave him bad news. Not only had Sori been misdiagnosed in Kiev, he actually had Pott's disease, a tubercular infection that destroys the bones of the spine, and the infection was still raging. Even worse, the paralysis resulting from unnecessary operations was, in all likelihood, irreversible. Devastated, Sori spent two months at MGH undergoing intense treatment for Pott's disease.

When his condition stabilized three months later, he was transferred to the tuberculosis unit at Lemuel Shattuck Hospital. He spent the next two years there. At the time, Sori says, "I had no hope." Confined to bed, he couldn't even turn over without assistance. Yet the staff inched him toward recovery. Within months, his tuberculosis was cured, and he was attending daily physical-therapy sessions. Within a year, he'd built his upper-body strength enough to move from bed to wheelchair to shower - all on his own.

His time at Shattuck was not without setbacks, though. Last year, his wife, overwhelmed by her husband's permanent disability, filed for divorce. Throughout, Sori has persevered. "I wish you could have seen Ragassa last year," says Karen Johnson, a Shattuck Hospital social worker handling Sori's case. "He really has made progress."

Now, all that progress is in jeopardy. Last September - in preparation for Sori's September 25 hospital discharge, two years after he first entered the country - his doctors submitted prescriptions to the Division of Medical Assistance (DMA) to cover Sori's outpatient treatment. There were prescriptions for nine medications, including a muscle relaxant, a pain killer, and suppositories. There were prescriptions for supplies - a wheelchair, a shower chair, and urine bags. There was a request for outpatient physical therapy to ensure that Sori maintains his upper-body strength. And there was a request for a "homemaker" to assist him with basic household chores. The DMA, however, informed the doctors that none of the prescriptions would be covered, as Sori had been cut off from his Medicaid benefits.

Fortunately for Sori, the Shattuck staff didn't throw him out on the streets. Johnson and her colleagues raised $400 to help him set up his new home, a one-bedroom apartment in elderly and disabled housing in the North End. They gave him a handicapped bed, a secondhand wheelchair, a dozen urine bags, and a month's worth of medications. Though Sori sounds eternally grateful for their aid ("They saved my life," he says), Johnson recognizes the obvious shortfalls to such an approach. "What kind of solution is it for people to take up a collection for this guy?" she asks. "Is this how we're going to meet people's needs now?"

In recent weeks, Sori has come to understand how difficult it is to be disabled without health insurance. The wheelchair in which he sits doesn't match the one prescribed for him. It's too small, and thus lacks leg support. As a result, his ankles and toes are starting to curve inward. He is almost out of medications, and often feels searing pain shoot up his legs. Meanwhile, he has already spent $260 of the $400 - just to buy food. Johnson has helped him enroll in the state Emergency Assistance for Elderly, Disabled, and Children program, which will provide him with at least a $303 monthly income. And she has helped him apply for free care at the North End Community Health Center, where he can get outpatient physical therapy and medications. But this still doesn't answer the question of how to pay for Sori's supplies, or a homemaker. And without these supports, Sori won't be able to land a job, be productive, and, in his words, "pay my debt to this country for saving my life."