July 28, 1997
Too Poor to Treat
States are balking at paying for pricey AIDS drugs
BY DANIEL PEDERSEN AND ERIC LARSON
NINETY-SIX-POINT-THREE is the frequency of Justus Upton's favorite radio station in Jackson, Miss. It's also, by macabre coincidence, exactly how low his body temperature fell in 1995 until he took a drug called Zovirax. Upton, 29 and HIV-positive, switched to 14 medications a day in January to beat back his dread disease. The good news: that so-called "cocktail" took the viral levels in his blood down to almost undetectable lows — like tens of thousands of other infected people who have suddenly dared to hope again. The bad news for Upton came from the state of Mississippi a few weeks ago. It told him, and 656 other low-income HIV sufferers, that the money from Washington had run out. They would no longer receive payments for many of the drugs in their cocktail treatments. "I'd spend everything I have to keep him alive," frets Justus's mother, Frances. "I just don't have enough."
Neither, it seems, do many state governments. So far, only Mississippi has taken the draconian step of evicting HIV sufferers from the new, $12,000-per-year treatment. But 35 of 52 state-administered AIDS programs (or ADAPs) have had to make some kind of emergency move or another in the past year—such as often curbing access to potent new drugs called protease inhibitors or limiting enrollment to a lucky few patients.
Such moves have AIDS workers asking: Are we all, in effect, Mississippi? Federal officials announced last week that, thanks to the new drug regimes, AIDS deaths had dropped by 19 percent in the United States in 1996. But declines for blacks (10 percent) and women (7 percent) reveal an uneven pattern of treatment. William E. Arnold, head of a Washington-based AIDS-advocacy group, thinks a dozen ADAPs may impose new limits soon, as more low-income people learn that the drugs seem to work. "It's ironic," he says. "All these problems are being caused by good news."
As some doctors start to see HIV as a chronic but manageable disease, the perceptions of politicians could become more important than ever. Will AIDS lose its celebrity and urgency as a cause if more influential and well-to-do white males begin to feel more secure? The death rate from AIDS continues to rise in poorer countries around the world. But what if you're poor in a rich country?
Kimberly Williams, of Biloxi, represents the changing face of HIV — in Mississippi and the nation. New cases in the United States are increasing most rapidly among women, especially minorities, and by heterosexual transmission. Williams, 26, learned she was infected when she was 17 and six months pregnant. Her son, Jeremy, was born with the virus and died of AIDS in March at the age of 8. Jeremy's father, who infected Williams, died last fall.) Williams has spoken at Mississippi schools about HIV prevention and in Washington about the lack of ADAP funding. "Many people say AIDS gets enough money," she notes. "I ask, 'If that's true, why is my kid dead?' "
That question didn't haunt Mississippi. Officials there booted Williams from the ADAP program last month. She, like most others who were weeded out, is poor or disabled enough to qualify for Medicaid, which pays for up to five free drugs taken simultaneously. But five drugs may not be enough to keep Williams healthy: her viral load has tripled in the past six months. The prospect of seeing effective HIV treatment become the right of the rich hasn't squared well with many Mississippians. The state's biggest newspaper, the Clarion Ledger, has been running almost daily articles on the crisis since May, and the Episcopal Church is leading a private collection drive. By juggling public accounts after the outcry, the state restored the drugs of 417 dismissed clients — not including Upton and Williams — until the end of the year. Gov. Kirk Fordice has refused appeals to call a special session of the legislature to find a more permanent solution. The governor, one of his aides insists, is driven by fiscal conservatism.
There's no doubt that treating the infected gets more expensive every year. There is only one thing costlier in the short run: not treating them. "Work the moral issues out economically," argues Episcopal bishop A. C. Marble of Mississippi. "The costs of paying for someone in the last stages of life are astronomical." In Washington, a House subcommittee last week approved spending $1.8 billion for AIDS treatment and prevention in 1998, up from $1.6 billion this year. But 12 states* still don't see the logic of doing anything at all to save the uninsured — and, eventually, in the passed-on end, all of us — from the high cost of death by AIDS. Hospital stays for terminal AIDS victims average $150,000, almost 13 times the annual price of the new cocktails. Cold-eyed accountants might project that death would be cheaper if the new courses of treatment run 13 years or more. Upton and Williams, of course, have more immediate worries.
* The other 11: Alaska, Arizona, Arkansas, Florida, Kansas, Montana, Nebraska, New Hampshire, South Dakota, Tennessee and Wyoming.
Picture caption - Upton with Mom: 'I'd spend everything I have to keep him alive.'
[she'd certainly spend everything you have ... JP]