SF Chronicle: HIV patients call drug program fractured after shift in operators

January 23, 2017
A state program that helps people pay for expensive, lifesaving HIV drugs is in disarray after the Oakland company that managed it for nearly 20 years was replaced by three out-of-state operators, say patients and AIDS advocacy groups. So far, the transition between contractors, which occurred last summer, has mostly proved stressful and time-consuming for patients and their caseworkers. But advocacy groups worry that patients could be delayed in obtaining HIV medications they rely on to stay healthy, which would be problematic not only for them but for programs designed to control spread of the virus. “The AIDS Drug Assistance Program was always our system that worked really well. It was always stable,” said Courtney Mulhern-Pearson, senior director of state and local affairs with the San Francisco AIDS Foundation. “The fact that it’s now not working is causing this mass sort of panic throughout the system.” Among the complaints, patients say their reimbursement claims have been repeatedly rejected. Caseworkers, meanwhile, say enrolling patients is taking three or four times longer than it used to. In November, an online portal where patients could register or re-enroll was taken down because of security concerns, and it has not yet been replaced, forcing patients or their caseworkers to register by fax. But for weeks, there clearly weren’t enough fax machines or customer service workers to handle the load, patient groups said. California Department of Public Health officials said in an emailed statement that they were aware of the problems and had launched some temporary workarounds, including a system for providing 30-day drug supplies to people who have trouble re-enrolling in the program or are turned away from pharmacies. As of mid-January, the state had received 13 complaints directly from drug assistance program clients, said public health spokeswoman Ali Bay. The rough transition comes as the state — and San Francisco in particular — pushes hard to stop the spread of HIV. The city’s Getting to Zero campaign seeks to end all new HIV infections, but a cornerstone of that plan is treating people already infected. People who have HIV but take antiviral drugs that make the virus undetectable in their blood are highly unlikely to spread the infection to others. “When people aren’t on their meds, they get sick. And they have higher viral loads, and that means they’re more likely to infect other people,” said state Sen. Scott Wiener, D-San Francisco. “It’s in everyone’s interests for people to be healthy and to have suppressed viral loads. This just isn’t a tenable or acceptable state of affairs.” In December, Wiener sent a letter to state public health Director Karen Smith demanding that she immediately fix problems with the drug assistance program, or cancel the new operators’ contracts. Smith replied Jan. 6 with notes on how the state is addressing problems. She did not say whether she would consider terminating the contracts but said her department is “exploring all options.” The state’s AIDS Drug Assistance Program covers all or part of medication costs for nearly 32,000 low-income Californians with HIV or AIDS. The program is part of a federal network created in 1987 to help states pay for AZT, which at that time was the only antiviral drug available to treat AIDS. It now covers costs for more than 200 drugs. Each state is responsible for its own drug assistance program. Oakland’s Ramsell Corp. had a contract to run California’s program for about 19 years before the state, after an open bidding process, divvied up operations last summer among three companies. The companies are A.J. Boggs of Michigan, which handles enrollment services, Magellan Rx Management of Arizona, which covers pharmacy benefits, and Pool Administrators Inc. of Connecticut, which covers insurance premiums. A.J. Boggs and Magellan Rx Management have been the source of almost all of the complaints. Representatives from both companies declined to comment, referring questions to the state. Even before the transition, patient advocacy groups and local public health agencies sent letters to the state expressing concern that the change would create chaos in the drug assistance program. They said state officials assured them repeatedly that the new companies were prepared to take over. But problems emerged right away. Patients who had been on the drug assistance program for years suddenly had trouble re-enrolling. Reimbursements took twice as long to arrive in the mail. Caseworkers spent three or four hours signing up new patients — a task that used to take half an hour. San Francisco resident Sean Johnson, who has been enrolled in the program since 1998 without encountering any problems, said he realized something was wrong in July when he tried to submit a reimbursement claim. He went online to get the new forms from Magellan and couldn’t find them. In fact, he said, many of the links didn’t work. He called the help line, reaching someone who agreed to email him a form. He sent that in — but the company returned it, saying he’d filled it out wrong. Over the next six weeks, he said, he repeatedly ran into glitches. He was told to fax in paperwork, only to have the fax not go through or be told by customer service workers that they’d never received his forms. Only after he contacted the state for help did he finally get his claim resolved, he said. He got his $30 reimbursement in October, three months after first submitting the request. In the past, he said he got checks in four to six weeks. “It was nothing but a nightmare,” Johnson said. He noted that his reimbursement is relatively small and that he’s financially secure enough to go without it for three months. But many others cannot, he said. And they also may not have his persistence. That’s what worries Mulhern-Pearson of the San Francisco AIDS Foundation and others who work with patients. She said she hasn’t heard of anyone going without their drugs, but is mindful that so many in the drug assistance program are already socially and financially unstable, lacking permanent housing and access to health care. If one snag interferes with their ability to get HIV drugs, they may just give up and go without. “My sense is there are clients who have probably missed doses, but I just don’t know,” Mulhern-Pearson said. “The system just isn’t working for the caseworkers or the clients,” she said. “We’re trying to get more people treated and faster, and this is counter to everything else going on in the epidemic right now. This is extremely frustrating.” To read the whole story, go to the SF Chronicle website at http://www.sfchronicle.com/health/article/HIV-patients-call-drug-program-fractured-after-10874920.php