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September 22, 2018 01:00 AM

AIDS patient's struggle to get care shows gaps in Medicaid program

Susannah Luthi
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    Antiretroviral medicine

    GREENVILLE, Miss.—Johnny Wells, 29, has AIDS and up until last month thought he had six months to live.

    He had been in prison and almost died in a coma. Before that, he couldn't hold down food for weeks at a time. The county jail allegedly neglected to give him his antiretroviral drugs.

    Wells was released in May. A month later, lesions patched his face and head. He was thin, but with his mother's care, he was able to regain 30 pounds. It took four months from his release to get on Medicaid.

    Since 2012, the healthcare and prison systems had traded Wells back and forth, playing roles familiar to many men in the Mississippi Delta where he lives—a quiet region of small towns where desperation flares violently.

    Wells was convicted in 2012 of manslaughter after he shot a man in a fight. He claimed it was self-defense. He was sent to the Mississippi State Penitentiary in Parchman. He didn't know he had HIV until he was tested there for the first time, and he grew sick enough that prison officials sent him across the Delta to the ICU in a Greenwood hospital where he was handcuffed to the bed.

    After his release in 2014, Wells moved back to his hometown of Greenville and starting receiving antiretroviral drugs from Crossroads, one of the Delta's three Ryan White AIDS clinics. The AIDS Drug Assistance Program funds drugs for about 70 of Crossroads' HIV and AIDS patients who don't have Medicaid, according to Chad Neal, the clinic's director.

    Over the next few years Wells moved in and out of jails, navigating barriers to the drugs that were supposed to keep him alive. In 2015, incarcerated again, HIV became AIDS. At one point, his mother, Parlee Richardson, had to bring his medication from the Crossroads clinic to jail.

    “I had to go up to the facility to bring it, and they said to leave it with the guard,” said Richardson, who didn't own a car then. “Each time I was paying people money to drive me up there.”

    In 2016, he was wrongfully jailed for a year in his home county, and that's when he first stopped receiving drugs. Democratic state Sen. Derrick Simmons, who grew up with Wells' mother, defended him in the matter and cleared him. Wells has sued the county for wrongful imprisonment.

    When he was locked up in July 2017 in the Coahoma County Jail in Clarksdale, he received medication at first. But again, it stopped coming. Wells alleged that administrators didn't want to pay for the drugs and so simply neglected to supply them, while the jail's administration said he rejected them.

    “After researching this request, it has been found that Mr. Johnny Wells refused any medical treatment or medications while being held in the Coahoma County Jail,” Deputy Sheriff Will Rooker wrote in an email to Modern Healthcare.

    Wells and Richardson alleged no one monitored him. Beyond activity time and other inmates walking by his padlocked cell, Wells said he didn't see people. As he grew sicker, he lost memory and speech.

    “I can't hold no conversation,” he said. He went to the ICU in March and, according to the jail's records, he was freed on May 1, 2018.

    “One of the guards called me and told me, 'I'm not supposed to do this, but your son is really, really sick,' ” Richardson said. “So I went up there, and I said, 'If I don't get help, I'll file a lawsuit,' and the next thing I knew he was in the hospital.” She added, “You have to be dead to get help.”

    A physician told Wells that after going seven months without medication the virus had advanced enough to kill him. In June, when it wasn't clear Wells would live even six months more, Richardson and Wells had to drive to the Ryan White clinic 75 miles away in Clarksdale for care, rather than the one in his hometown. They didn't know why. Richardson has a car now, left to her by her deceased best friend.

    Wells attributed the inconvenience to Medicaid or “something different with the money.”

    Immediately after his release from jail in May, he filled out the paperwork to qualify for the Supplemental Security Income program that would guarantee Medicaid. They waited until August before he got coverage. After months at home getting stronger and taking medication, his physician revised his prognosis.

    Wells now lives with his 8-year-old son—one of his five children—and nephew in Richardson's house. None of Wells' children have tested positive for HIV.

    “I put my trust in God,” Wells said.

    “More so than man,” Richardson said.

    RELATED STORIES:

    Medicaid blues: Hospitals, insurers wage political battle over managed-care dollars

    Could deep-red Miss. expand Medicaid? 2019 will tell

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