When Tony Smith lost his job as a corporate paralegal two years ago, a state program stepped in to help him keep his health insurance — and the expensive drugs his life had depended on since a 2008 HIV diagnosis.
Now Smith, 42, from Coral Springs, is being told he must sign up for insurance coverage on Florida's federally run exchange or the state will stop helping him pay his premiums. "The landscape of health care has changed, and with the passage of the Affordable Care Act we have the opportunity to access and enroll in cost-effective health plans," an official at the AIDS Insurance Continuation Program wrote in a letter to Smith and other AICP beneficiaries.
But it's not clear that ACA plans will actually be cheaper — or even affordable — for those with HIV and AIDS, according to patient advocates.
Last spring, two nonprofit groups filed a federal civil rights complaint alleging that some Florida insurers were discriminating against people with HIV by charging "inordinately high" rates for HIV medication on ACA plans. In their complaint, the AIDS Institute and the National Health Law Program singled out CoventryOne, Cigna, Humana and Preferred Medical for discouraging people with HIV "from enrolling in those health plans — a practice which unlawfully discriminates on the basis of disability."
The ACA prohibits insurers from discriminating against consumers because of pre-existing medical conditions. The four companies all offered 2014 plans in Florida and plan to do so again in 2015.
It's an important issue for Florida, which has the third-highest rate of HIV infection in the nation. Almost 95,000 people in Florida have been diagnosed with HIV. Many of them have coverage for the first time thanks to the health law, activists say. But without proper regulation, high drug prices could act as a de facto form of discrimination, said Carl Schmid, deputy executive director of the Tampa-based AIDS Institute, one of the groups that filed the civil rights complaint.
In a statement to the Miami Herald last week, Coventry spokesman Walt Cherniak said the insurer's 2014 plans provided access to HIV care "that follows the latest Department of Health and Human Services guidelines and evidence-based practices." Humana, Preferred Medical and Cigna also issued statements to the Herald denying any discrimination. Humana said it places HIV drugs on its highest — and most expensive — tier because of their cost and clinical complexity.
The details of 2015 insurance plans on the federal exchange in Florida won't be announced until early November, leaving Smith and other Floridians with HIV in limbo. Open enrollment begins Nov. 15.
"I'm drowning in paperwork trying to figure out what sort of plan I'll need," Smith said. "And I'm really worried that I'm just going to be stuck if enrollment opens and there aren't any I can afford."
And what if Healthcare.gov, the enrollment website, is again derailed by the glitches that prevented people from signing up for coverage for months? "I don't even want to think about that," Smith said.
HHS said the complaint, filed in May, is still under review by its Office for Civil Rights, which protects consumers from discrimination. The complaint asked the OCR to prevent the four companies from offering plans with discriminatory costs.
Harvey Bennett, a spokesman for the Florida Office of Insurance Regulation, said the state was also investigating whether the plans were "unfairly discriminatory."
Not all insurers on the exchange are being accused of discrimination. Aetna, Ambetter and Molina placed most of their HIV drugs on less-expensive tiers. Florida Blue, the state's largest health insurer, listed all but one HIV drug on lower tiers requiring monthly co-pays of $10 to $70.
But the market has seen a general trend towards plans with high deductibles and high co-insurance models for expensive drugs, including those for hepatitis C and multiple sclerosis, according to Steven Ullmann, director of the Center for Health Sector Management and Policy at the University of Miami's School of Business Administration.
Ullmann said cost-sharing presents a moral dilemma. "It's one thing if you're dealing with an elective pharmaceutical, but it's another where you're looking at drugs and treatment plans that affect one's ability to sustain quality of life," Ullmann said. "But insurance companies are businesses, as well, and one recognizes their incentive structure: to avoid taking on too much risk."
Ullmann said companies that offered low-cost HIV drugs last year may change their behavior this year based on the plans of their competitors. That means that until insurers reveal their rates for 2015, Smith and others with HIV won't know whether plans will place HIV drugs in high- or low-cost tiers.
"What we're really worried about is a race to the bottom," said Wayne Turner, a staff attorney at the National Health Law Program, which helped file the civil rights complaint. Turner said he fears the high-cost plans may have "skewed the market" and that in order to avoid having their risk pool burdened by people with expensive health needs, competitors may raise what they charge for HIV drugs.
Some of the ACA plans have other drawbacks, such as limiting patients to a 30-day supply of medicine instead of a 90-day supply and requiring prior authorization from insurers before every refill. A 2012 study conducted by the pharmacy chain Walgreens and published by the Centers for Medicare and Medicaid Services, which regulates plans sold on the exchange, found that patients with 90-day supplies took their medicine more regularly and had greater cost savings than those with 30-day supplies.
Turner said that with the confusion of the exchange's launch out of the way, the time was right "for the federal government to send a strong message to plans that they can't design their benefits in a way that discriminate against people with HIV."
In a statement to the Herald, Aaron Albright, a spokesman for CMS, called the law's antidiscrimination provisions "effective" and said the federal government was investigating complaints of discrimination.
Smith said he wouldn't mind switching to the ACA if he knew that plans with sufficient coverage were waiting for him.
But he knows he'll be in trouble if all of the plans look like one Humana plan from last year mentioned in the complaint. The terms of the "silver," or mid-range, plan would require him to meet a $1,500 prescription deductible and then pay 50 percent of his total drug costs. For his Atripla prescription, a once-daily antiretroviral, that would mean a monthly payment of around $1,000 until he hit his $6,300 out-of-pocket limit.
"That's just such a crazy jump from what I'm paying now," said Smith, who is currently covered by an off-exchange Cigna plan. "I'm already trying to save by not going to the doctor for minor stuff."
Right now, AICP, the program that helped Smith keep his insurance when he was laid off, pays $750 of his $803 monthly premium. He's responsible for a monthly $110 co-pay for medication. Without insurance, Atripla costs more than $6,300 every three months. AICP, Smith said, "saved my life."
The program receives about half of its funding from the federal Ryan White HIV/AIDS Program, which helps provide medical care for around 500,000 HIV positive people nationwide. By federal law, Ryan White is the "payer of last resort," meaning many Floridians who can get cheaper coverage from another source, such as an ACA exchange, will now be required to do so.
Other HIV-positive patients will also be funneled to the exchange, including some clients of the state-administered AIDS Drug Assistance Program, which helps pay for HIV drugs for people who have low incomes or little or no insurance. The program receives 90 percent of its funds from Ryan White, meaning that those whose medication costs can be lowered by going onto an exchange will have to do so.
Nathan Dunn, a spokesman for the Florida Department of Health, said that this year about 4,000 of the 14,000 people enrolled in ADAP will have to sign up for Marketplace coverage. The state would be in danger of losing its Ryan White funding if it did not move people onto the exchange.
At the Legal Aid Society of Palm Beach County, which helps Ryan White clients, staff attorney Vicki Tucci said many consumers with HIV who enrolled last year were unhappy with their plans. Tucci counseled about 30 people with HIV who said they discovered too late that the insurance plans they had purchased either didn't offer enough coverage to make their HIV medicines affordable or didn't include long-time health care providers in their network.
"These were people who were often signing up for health insurance for the first time," said Tucci, who served as a Marketplace "navigator" assisting new enrollees last year. She said she was able to help about half of the 30 clients who came to her switch plans.
For his part, Smith is trying to educate himself about the best way to pick a health insurance plan.
He has learned that low premiums are often accompanied by high deductibles and high co-insurance rates, and he plans to talk with a navigator who can guide him through the system. But he's worried that others with HIV may not be as well prepared.
"There are people out there who, if they don't do their homework, they're really going to get sucker-punched (next year) when they start paying their bills," Smith said.
This story was produced in collaboration with Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.