“We will voluntarily agree to set an out-of-pocket limitation of $200 per month on each of the following drugs: Atripla, Complera, Stribild, and Fuzeon,” Preferred Medical Plan CEO Tamara Meyerson wrote to Kevin McCarty, commissioner of the Florida Office of Insurance Regulation, in a Jan. 14 .

The other three companies — , and — had earlier reached formal agreements with state regulators to lower their prices and to fill prescriptions without prior authorization for 2015.

Preferred did not violate Florida’s anti-discrimination laws, said Amy Bogner, a spokeswoman for the state’s insurance office.

An estimated 120,000 Floridians have HIV, and nearly half of them live in South Florida, according to .

The four Florida insurers were the focus of a federal civil rights complaint filed last May by , a nonprofit group in Tampa. The complaint accused insurers of discriminating against people with HIV by making their medications too expensive — as much as $1,500 per month for drugs on some health plans offered in Florida last year.

The U.S. Department of Health and Human Services is still investigating the complaint, according to spokeswoman Rachel Seeger.

Carl Schmid, deputy executive director of The AIDS Institute, said he was disappointed the state did not ask Preferred to sign a more extensive agreement.

“What’s in the letter is really nominal,” Schmid said. “It doesn’t even say how long Preferred has to abide by these terms.”

But David Poole, a spokesman for the , which worked with state regulators on the drug pricing issue, called the letter “acceptable” and said all insurers should ensure antiretroviral medications are “accessible and not economically out of reach.”

The news comes as Gov. Rick Scott confirmed that he was McCarty, who has led Florida’s insurance regulator since 2003.

AHF yesterday sent a to the governor praising McCarty’s work on the pricing of HIV drugs.

“The actions of the commissioner and his staff assured … that public health in Florida would not suffer because of the restrictive actions the private insurance companies had instituted,” the letter said.

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At the same time, 56 percent of local hospitals performed better than expected in controlling infections, according to the same data, information that South Florida consumers could use when choosing a hospital.

The ratings are part of a national effort to cut down on the most common infections patients contract in the very places they go to get well: hospitals.

The federal government has also taken action in the form of financial penalties. In 2008, Medicare stopped reimbursing hospitals for treating patients who acquired infections under their care. This year, as part of the Affordable Care Act, Medicare will hospitals that fail to meet standards on a variety of patient safety measures, including infections.

Steven Ullmann, a health policy expert at the University of Miami, called the penalties “significant” and said they had helped push hospitals to fight infections.

More than 3,300 hospitals around the nation reported data to the Centers for Disease Control and Prevention on six types of common healthcare-associated infections contracted by patients in 2013.

One Miami institution, North Shore Medical Center, performed worse than all but five hospitals nationwide.

In South Florida, the CDC collected data from 32 hospitals in Miami-Dade, Broward and Monroe counties. Thirteen of those hospitals, or 41 percent of the South Florida total, failed to meet national benchmarks in at least one infection category, compared with 30 percent of hospitals statewide and 23 percent nationally.

“Any place in the country that finds its hospitals are lagging in an important area like infection rates needs hospital leadership to devote resources to address the problem,” said Robert Brooks, a patient safety expert who served as secretary of the Florida Department of Health between 1999 and 2001.

One in 25 patients in the hospital on any given day will contract an infection, according to the CDC, which also reported that from hospital-acquired infections.

In Miami, North Shore Medical Center performed worse than CDC standards in controlling four types of infections, one of only six hospitals in the nation to fall below national standards in that many categories. No hospitals underperformed in five or more categories.

Patrick Beaver, chief nursing officer at North Shore, said hospital officials recognized the problem and had developed an “organization-wide” strategy to fight infections.

“We were able to analyze our data in real-time in 2013 and began to implement newer, evidence-based best practices that would allow us to improve our performance,” Beaver said.

Those measures include an emphasis on hand-washing, regular training for new and existing staff, and use of an antimicrobial liquid soap called chlorhexidine to clean patients at high risk of infections, including those using intravenous and urinary catheters.

Beaver said preliminary data for 2014 showed North Shore had seen a “significant” drop in the number of patients contracting infections but the hospital had not yet finalized the data and could not release it.

Bruce Rueben, president of the Florida Hospital Association, said in a statement that Florida hospitals had made progress in combating infections but that “there is still much work to be done.”

Rueben said Florida hospitals support “providing public information on quality and patient safety outcomes so our patients can make informed healthcare choices.”

The CDC publishes infection data every quarter through Medicare’s website. Hospital ratings change as the data is updated. To look up infection ratings for hospitals throughout Florida including Miami-Dade and Broward counties, go to the Miami Herald’s .

Holy Cross Hospital in Fort Lauderdale performed well during the 2013 assessment, doing better than CDC standards in four infection categories, the most of any hospital in Florida. But recent data — not yet released to the public — shows that Holy Cross’ performance dropped in 2014 to an “average” rating in all four categories, according to Christine Walker, a spokeswoman for the hospital.

Brooks, the patient safety expert, said the publication of such data is a crucial resource for consumers.

“As younger patients age and require more services, they’re going to be more computer savvy and the ability to find out more about their hospital or their doctor online will be extremely helpful in helping them make decisions about their medical care,” he said.

The infections measured by the CDC data are catheter-associated urinary tract infections, central line-associated bloodstream infections, C. diff intestinal infections, MRSA bloodstream infections and surgical site infections that develop after hysterectomies or colon operations.

The CDC takes mitigating factors such as the size of a hospital and whether it serves as a teaching institution into account when compiling its ratings, but some hospitals say this risk adjustment doesn’t fully capture their type of patients and the services they provide.

“Larger hospitals and those that have the resources to aggressively diagnose infections tend to be penalized by these data,” said Nancy Foster, vice president of patient safety at the American Hospital Association. “And the data are a bit behind the current state of events because of how long they take to compile.”

“The important thing for the public to understand is that hospitals are working very hard all across the country to improve their performance,” Foster said.

At Mount Sinai Medical Center in Miami Beach, hospital officials have seen progress. Previous numbers covering parts of 2012 and 2013 showed that Mount Sinai national standards in combating two types of infections: surgical site colon infections and MRSA.

But for 2013, the hospital had improved its performance to average in MRSA. It also performed better than national benchmarks for preventing urinary tract and C. diff infections.

“It’s an extra expense for the hospital, it’s extra work for our staff, but we know it’s really important to eliminate these kinds of infections,” said Dr. Robert Goldszer, chief medical officer at Mount Sinai Medical Center in Miami Beach.

Goldszer said last year the hospital increased its use of chlorhexidine, the antimicrobial liquid soap, for its highest-risk patients, including patients undergoing surgery and those in the intensive care unit.

The hospital also uses antibiotic-coated intravenous catheters for acute care.

“Some of this is technique, but a lot of it is education,” Goldszer said. “Our staff knows that every day this has to be a major priority.”

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Florida’s decision to privatize government-subsidized healthcare for more than 3 million Medicaid recipients will lower costs and improve care, state leaders say.

But the new managed care system is also exposing some Floridians in Medicaid, the state/federal insurance program for children, the poor and disabled, to the uncertainties of the private market for the first time.

Malissa Miller, a Medicaid recipient born with a rare and deadly intestinal condition called Hirschsprung’s disease, thought for months that she would have to move from her Broward home to another county in order to receive the treatment she believed would save her life.

She says her insurer repeatedly told her she could not visit a renowned gastroenterology clinic at the University of Miami because it was not included in the insurer’s provider network.

Other insurers in Miami-Dade and Palm Beach counties — the two counties a few miles to the south and north — offered plans that would pay for Miller’s treatment at the UM clinic.

As part of Medicaid managed care, insurers choose which counties to sell plans in. None of the four insurers providing coverage in Broward included the clinic in their networks.

Hours after the Miami Herald called the insurer, Sunshine Health, to inquire about her case, Miller says she was told she could now visit the clinic.

“I’m over the moon,” Miller said. “I’m praying they can help me.”

In a statement to the Herald, Sunshine said that it had given Miller special permission to seek treatment at the clinic in October. “Our main focus is ensuring this member gets the services she needs,” wrote Alia Faraj-Johnson, a spokeswoman for the company.

She did not address questions about how or whether Miller could have misunderstood the options available to her. Faraj-Johnson also said Sunshine would include the clinic in its network as of Jan. 1.

Patricia Meyer, Miller’s sister-in-law and healthcare surrogate, said she spent weeks trying to convince a case manager at Sunshine that Miller needed to continue treatment at the clinic after a promising initial visit in September, when she was still covered under a previous Medicaid insurance plan.

“They just would not listen,” Meyer said.

Meyer said the company, which is owned by Missouri-based Centene, refused and told Miller to seek treatment with its in-network GI specialists in Broward. But Miller didn’t like the doctors. She felt that her best hope lay with the UM clinic — and she didn’t want to relocate to one of the counties where the clinic would be covered.

At 44, Miller has built a life in Broward, a life that doctors told her parents would last just a few months after she was born, and has even raised a son, another medical unlikelihood, her doctors said.

People with rare and serious conditions like Miller could be at risk of being denied the treatment they need in the private market, said Joan Alker, executive director of the Center for Children and Families at Georgetown University and an expert on Florida’s Medicaid system.

“This is exactly what I was worried about when Florida began moving to managed care,” Alker said. “There must be exceptions for people with rare conditions to access the care they need.”

She called Miller’s initial inability to seek treatment at UM a potential sign of “network inadequacy.”

Greg Mellowe, policy director at the consumer advocacy group Florida CHAIN, also worries about the quality of care under the new system.

“Although the purpose of the Medicaid program is to ensure recipients’ access to appropriate and timely care, the plans ultimately report to shareholders or investors, not recipients,” Mellowe said.

The state has long contemplated switching to managed care and launched pilots in several counties starting in 2005. Broward was among the counties included. Eligible Medicaid recipients around the state enrolled in private plans earlier this year.

Justin Senior, Florida’s Medicaid director, said managed care had established the “strictest network adequacy programs we’ve ever had in Florida.”

Plans must meet prescribed patient-doctor ratios, including a minimum of one licensed and board-certified GI specialist for every 8,333 patients, in order to win state approval, Senior said. And 95 percent of doctors in a network must accept new patients, he said.

Sunshine met the state’s adequacy requirement. Even so, Senior said, “they may not have every single GI doctor in the area in their network.”

“Someone with a need for a GI specialist in the private sector would deal with the same issues,” he said.

Senior said that because Sunshine provided a satisfactory network, the state could likely not force the insurer to let Miller seek treatment at the UM clinic. “We’d have no contractual lever there,” Senior said.

“It’s really difficult to say from a quality standpoint that the GI service at UM is necessarily better than anything available in Broward,” he said.

Under the old system, the state paid doctors and hospitals directly for every service they provided to patients — called a fee-for-service system. Now providers must agree to contracts with private insurers who reimburse them for treating patients on Medicaid.

The insurers are paid a fixed monthly fee by the state for every recipient on their books. The rate changes depending on whether the recipient has a chronic condition and other factors.

In Florida this year, Medicaid will cost $22.1 billion in state and federal dollars. Most states now use some form of managed care for Medicaid.

Miller is no stranger to the healthcare system; she spent much of her childhood in Jackson Memorial Hospital.

Hirschsprung’s disease leaves the colon unable to pass stool and requires extensive surgery at birth to correct. Miller was also born without a fully developed anus or rectum and had to have them surgically constructed.

She’s averaged about one major abdominal surgery a year and has less than four inches of her large intestine left. A healthy person would have five feet.

But the surgeries worked and for years Miller enjoyed a happy life working in various trades and raising her now 21-year-old son, Scott. In April, though, Miller started suffering from extreme vomiting, diarrhea and pain.

Dehydrated and exhausted, she was hospitalized repeatedly, and eventually diagnosed with Crohn’s disease, which inflames the bowel, and ulcerative colitis, which causes painful sores in the intestine. She also suffers from hepatitis C, the result of a tainted blood transfusion in the ’70s.

In August, she said, her doctors at Holy Cross Hospital in Fort Lauderdale told her they’d done what they could but recommended that she seek care at UM’s gastroenterology department, which specialized in Crohn’s and colitis.

In an interview, Miller lifted her shirt to show a painfully swollen belly crisscrossed by bruises and scars. “I’m in pain all day,” she said. “And the swelling won’t go away even if I can’t keep anything down.”

She said she couldn’t believe it when the UM clinic called last week and said she could schedule an appointment for early January. “I feel like there’s hope now,” she said.

Senior, Florida’s Medicaid director, urged Floridians on Medicaid to call or write the state Agency for Health Care Administration if they are unhappy with their plan or providers. He said it was important Miller had secured an appointment with her doctor of choice.

“People getting connected to care: This is how the system should work,” Senior said.

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The Centers for Disease Control and Prevention tracks how hospitals around the nation perform on preventing six types of frequently occurring infections, including bloodstream and urinary tract infections that result from catheters and surgical site infections that develop after colon and hysterectomy operations.

North Shore Medical Center did worse than national standards in controlling four types of infections.

Only one other Florida hospital, UF Health Jacksonville, a teaching hospital in Duval County, underperformed the CDC benchmarks in more than two categories, and only seven hospitals in the nation underperformed in four categories.

Cristy Martinez Paez, a spokeswoman for North Shore Medical Center, wrote in an email that the hospital provides “high-quality patient care” and is engaged in an “ongoing effort to reduce hospital-acquired infections by implementing proven methods such as a comprehensive safety program on every unit.”

She wouldn’t provide details of the safety program, saying only that “we continue to work toward a goal of zero cases.”

The CDC collected the data on infections from 4,683 hospitals around the county, including 179 in Florida, between October 2012 and September 2013.

“These kinds of infections usually occur because of fairly simple problems and errors by healthcare providers — and they have simple solutions that can be easily enacted,” said Robert Brooks, a patient safety expert who served as secretary of the Florida Department of Health between 1999 and 2001.

One in 25 patients develop an infection on any given day while in hospital care and one in nine people infected will die in the hospital, according to the CDC.

“We as a society need to continue to bring attention to facilities that don’t meet community standards in relation to medical errors or hospital-acquired infections,” said Brooks, who is also an adjunct professor at the University of South Florida.

In Miami, North Shore did worse than national benchmarks in four categories: central-line bloodstream infections, catheter-associated urinary tract infections and infections from two types of antibiotic-resistant bacteria, MRSA and C. diff.

Tenet Healthcare, the Dallas-based company that owns North Shore, did not respond to a request for comment.

UF Health Jacksonville, part of the University of Florida health system, also underperformed in four categories.

“Safety-net hospitals like ours tend to be at a disadvantage in these studies when compared to other hospitals because of our unique patient population,” said Daniel Leveton, a spokesman for UF Health Jacksonville, in a statement.

Leveton said the hospital tends to treat patients with more severe conditions who haven’t had adequate access to preventive care. “Treating them can be more of a challenge, one we accept as part of our mission in helping this community,” he said.

Jackson Memorial Hospital in Miami, also considered a safety-net institution, exceeded expectations for bloodstream and urinary tract infections but failed to meet them for MRSA.

Nancy Foster, vice president of patient safety at the American Hospital Association, said the CDC data were by and large “very well crafted,” but it might be penalizing to hospitals that aggressively diagnosed and treated infections. She also said the overuse of antibiotics could lead to problems.

“We don’t want to over-prescribe antibiotics because that leads to even more antibiotic resistant organisms,” Foster said.

As a whole, Florida hospitals are performing significantly better than national benchmarks in three areas: bloodstream, urinary tract and colon infections, according to CDC data in March.

Bruce Rueben, president of the Florida Hospital Association, a trade group, said hospitals in the state were working together to find effective strategies for reducing infections and other hospital-related injuries like falls and medication overdoses. Patients and providers would benefit from focusing on the problems, Rueben said, in part because hospitals have higher treatment costs when patients develop complications under their care.

The federal government compiles scores for individual hospitals based on a broad range of patient safety measures, including hospital-acquired infections.

In December, the government will announce the first round of , assessed through Medicare payments, for hospitals with low safety scores. The program was established as part of the Affordable Care Act.

The government is also expected to release updated infection rates for hospitals by the end of December.

Standardizing procedures that nurses and doctors perform on patients can help prevent infections, said Dr. Robert Goldszer, chief medical officer at Mount Sinai Medical Center in Miami Beach.

“More variation means more opportunities for things to go wrong,” Goldszer said. “We’re trying to design the easiest way to provide our patients with the right care all the time.”

Mount Sinai performed worse than national benchmarks in preventing MRSA and post-surgical colon infections but exceeded for urinary tract and C. diff infections.

Goldszer said Mount Sinai had worked with the Florida Hospital Association and other healthcare institutions to identify ways to improve its fight against infections including increased hand-washing, special soaps to clean a patient’s skin before surgery, avoiding the over-use of catheters and investigating how every new infection occurs.

He said the hospital had reduced the frequency of colon infections from 20 cases in 2013 to five as of September this year, and had also seen a moderate drop in its rate of MRSA infections.

“We need to continuously measure and assess our progress,” Goldszer said.

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As part of its agreement with the Florida Office of Insurance Regulation, Cigna will cap the amount consumers pay for four popular HIV drugs — Atripla, Complera, Stribild and Fuzeon — at $200 per month. Previously the company asked consumers to pay a co-insurance of 40 to 50 percent of the drugs’ cost.

Cigna will also move generic HIV drugs from its most expensive specialty “tier” to a less expensive tier for generics. And it will no longer require consumers to seek “prior authorization” from the insurer to refill their prescriptions.

The agreement said that Cigna had entered into the consent order, in part, to “avoid litigation.”

In May, two civil rights groups filed a complaint with the federal government accusing Cigna and three other Florida insurers of discriminating against people with HIV.

The complaint, lodged with the U.S. Department of Health and Human Services, said the four companies made lifesaving HIV drugs so expensive that they prevented consumers “from enrolling in those health plans — a practice which unlawfully discriminates on the basis of disability.”

Cigna denied all wrongdoing in the consent order, which also stated that Florida regulators made “no finding” about whether the company’s practices violated state or federal law.

In October, the Miami Herald wrote about among Floridians with HIV that they would not be able to afford prescriptions under plans offered on the federal marketplace for health insurance, which opens Nov. 15.

Carl Schmid, deputy executive director of the AIDS Institute, one of the groups that filed the federal complaint, called the agreement a “good first step,” but said it should have gone further.

“We’re glad that Cigna recognized they had problems with the way they designed their plans and how it affects people with HIV,” Schmid said.

But he added that the cap on out-of-pocket monthly expenses should have been expanded to include more drugs. Schmid also said that Cigna should offer customers a 90-day supply of its medications, rather than the minimum 30-day supply agreed to in the consent order.

Karen Eldred, a spokeswoman for Cigna, wrote in a statement to the Herald that the insurer had voluntarily agreed to the changes in order “to offer customers quality, affordable care.”

HHS is still investigating the issues raised by the federal complaint, spokeswoman Rachel Seeger confirmed.

In the consent order, state regulators said they had been provided with a copy of that complaint, which also named CoventryOne, Humana and Preferred Medical as discriminating against people with HIV.

Amy Bogner, a spokeswoman for the state Office of Insurance Regulation, would not comment on whether it was negotiating consent orders with the other companies or planning to pursue litigation against them.

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Now Smith, 42, of Coral Springs, has been told he must sign up for coverage on Florida’s federally run insurance exchange or the state will stop helping him pay his premiums.

“The landscape of healthcare 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 is not clear that ACA insurance plans will 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 preexisting medical conditions. The four companies all offered 2014 plans in Florida, including in Miami-Dade and Broward counties, and plan to do so again in 2015, with the exception of Preferred Medical in Broward.

It is an important issue for Florida, which has the third-highest rate of HIV infection in the nation, and for Broward and Miami-Dade, which have the highest rates statewide. 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 will not be announced until early November, leaving Smith and other Floridians with HIV in limbo. Open enrollment will begin 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 kinds of problems that marred its introduction, preventing 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 toward 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 will not 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 increase 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 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 discriminates against people with HIV.”

In a statement to the Miami Herald, Aaron Albright, a spokesman for CMS, called the law’s anti-discrimination 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 will 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 anti-retroviral, 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 is 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 about 500,000 HIV-positive people nationwide. By federal law, the Ryan White program 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 the Ryan White program, meaning that those whose medication costs can be reduced 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 federal marketplace coverage. The state would be in danger of losing its Ryan White program funding if it did not move people onto the exchange.

At the Legal Aid Society of Palm Beach County, which helps Ryan White program 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 healthcare 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 worries that others with HIV might 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.

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“We will voluntarily agree to set an out-of-pocket limitation of $200 per month on each of the following drugs: Atripla, Complera, Stribild, and Fuzeon,” Preferred Medical Plan CEO Tamara Meyerson wrote to Kevin McCarty, commissioner of the Florida Office of Insurance Regulation, in a Jan. 14 .

The other three companies — , and — had earlier reached formal agreements with state regulators to lower their prices and to fill prescriptions without prior authorization for 2015.

Preferred did not violate Florida’s anti-discrimination laws, said Amy Bogner, a spokeswoman for the state’s insurance office.

An estimated 120,000 Floridians have HIV, and nearly half of them live in South Florida, according to .

The four Florida insurers were the focus of a federal civil rights complaint filed last May by , a nonprofit group in Tampa. The complaint accused insurers of discriminating against people with HIV by making their medications too expensive — as much as $1,500 per month for drugs on some health plans offered in Florida last year.

The U.S. Department of Health and Human Services is still investigating the complaint, according to spokeswoman Rachel Seeger.

Carl Schmid, deputy executive director of The AIDS Institute, said he was disappointed the state did not ask Preferred to sign a more extensive agreement.

“What’s in the letter is really nominal,” Schmid said. “It doesn’t even say how long Preferred has to abide by these terms.”

But David Poole, a spokesman for the , which worked with state regulators on the drug pricing issue, called the letter “acceptable” and said all insurers should ensure antiretroviral medications are “accessible and not economically out of reach.”

The news comes as Gov. Rick Scott confirmed that he was McCarty, who has led Florida’s insurance regulator since 2003.

AHF yesterday sent a to the governor praising McCarty’s work on the pricing of HIV drugs.

“The actions of the commissioner and his staff assured … that public health in Florida would not suffer because of the restrictive actions the private insurance companies had instituted,” the letter said.

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At the same time, 56 percent of local hospitals performed better than expected in controlling infections, according to the same data, information that South Florida consumers could use when choosing a hospital.

The ratings are part of a national effort to cut down on the most common infections patients contract in the very places they go to get well: hospitals.

The federal government has also taken action in the form of financial penalties. In 2008, Medicare stopped reimbursing hospitals for treating patients who acquired infections under their care. This year, as part of the Affordable Care Act, Medicare will hospitals that fail to meet standards on a variety of patient safety measures, including infections.

Steven Ullmann, a health policy expert at the University of Miami, called the penalties “significant” and said they had helped push hospitals to fight infections.

More than 3,300 hospitals around the nation reported data to the Centers for Disease Control and Prevention on six types of common healthcare-associated infections contracted by patients in 2013.

One Miami institution, North Shore Medical Center, performed worse than all but five hospitals nationwide.

In South Florida, the CDC collected data from 32 hospitals in Miami-Dade, Broward and Monroe counties. Thirteen of those hospitals, or 41 percent of the South Florida total, failed to meet national benchmarks in at least one infection category, compared with 30 percent of hospitals statewide and 23 percent nationally.

“Any place in the country that finds its hospitals are lagging in an important area like infection rates needs hospital leadership to devote resources to address the problem,” said Robert Brooks, a patient safety expert who served as secretary of the Florida Department of Health between 1999 and 2001.

One in 25 patients in the hospital on any given day will contract an infection, according to the CDC, which also reported that from hospital-acquired infections.

In Miami, North Shore Medical Center performed worse than CDC standards in controlling four types of infections, one of only six hospitals in the nation to fall below national standards in that many categories. No hospitals underperformed in five or more categories.

Patrick Beaver, chief nursing officer at North Shore, said hospital officials recognized the problem and had developed an “organization-wide” strategy to fight infections.

“We were able to analyze our data in real-time in 2013 and began to implement newer, evidence-based best practices that would allow us to improve our performance,” Beaver said.

Those measures include an emphasis on hand-washing, regular training for new and existing staff, and use of an antimicrobial liquid soap called chlorhexidine to clean patients at high risk of infections, including those using intravenous and urinary catheters.

Beaver said preliminary data for 2014 showed North Shore had seen a “significant” drop in the number of patients contracting infections but the hospital had not yet finalized the data and could not release it.

Bruce Rueben, president of the Florida Hospital Association, said in a statement that Florida hospitals had made progress in combating infections but that “there is still much work to be done.”

Rueben said Florida hospitals support “providing public information on quality and patient safety outcomes so our patients can make informed healthcare choices.”

The CDC publishes infection data every quarter through Medicare’s website. Hospital ratings change as the data is updated. To look up infection ratings for hospitals throughout Florida including Miami-Dade and Broward counties, go to the Miami Herald’s .

Holy Cross Hospital in Fort Lauderdale performed well during the 2013 assessment, doing better than CDC standards in four infection categories, the most of any hospital in Florida. But recent data — not yet released to the public — shows that Holy Cross’ performance dropped in 2014 to an “average” rating in all four categories, according to Christine Walker, a spokeswoman for the hospital.

Brooks, the patient safety expert, said the publication of such data is a crucial resource for consumers.

“As younger patients age and require more services, they’re going to be more computer savvy and the ability to find out more about their hospital or their doctor online will be extremely helpful in helping them make decisions about their medical care,” he said.

The infections measured by the CDC data are catheter-associated urinary tract infections, central line-associated bloodstream infections, C. diff intestinal infections, MRSA bloodstream infections and surgical site infections that develop after hysterectomies or colon operations.

The CDC takes mitigating factors such as the size of a hospital and whether it serves as a teaching institution into account when compiling its ratings, but some hospitals say this risk adjustment doesn’t fully capture their type of patients and the services they provide.

“Larger hospitals and those that have the resources to aggressively diagnose infections tend to be penalized by these data,” said Nancy Foster, vice president of patient safety at the American Hospital Association. “And the data are a bit behind the current state of events because of how long they take to compile.”

“The important thing for the public to understand is that hospitals are working very hard all across the country to improve their performance,” Foster said.

At Mount Sinai Medical Center in Miami Beach, hospital officials have seen progress. Previous numbers covering parts of 2012 and 2013 showed that Mount Sinai national standards in combating two types of infections: surgical site colon infections and MRSA.

But for 2013, the hospital had improved its performance to average in MRSA. It also performed better than national benchmarks for preventing urinary tract and C. diff infections.

“It’s an extra expense for the hospital, it’s extra work for our staff, but we know it’s really important to eliminate these kinds of infections,” said Dr. Robert Goldszer, chief medical officer at Mount Sinai Medical Center in Miami Beach.

Goldszer said last year the hospital increased its use of chlorhexidine, the antimicrobial liquid soap, for its highest-risk patients, including patients undergoing surgery and those in the intensive care unit.

The hospital also uses antibiotic-coated intravenous catheters for acute care.

“Some of this is technique, but a lot of it is education,” Goldszer said. “Our staff knows that every day this has to be a major priority.”

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Florida’s decision to privatize government-subsidized healthcare for more than 3 million Medicaid recipients will lower costs and improve care, state leaders say.

But the new managed care system is also exposing some Floridians in Medicaid, the state/federal insurance program for children, the poor and disabled, to the uncertainties of the private market for the first time.

Malissa Miller, a Medicaid recipient born with a rare and deadly intestinal condition called Hirschsprung’s disease, thought for months that she would have to move from her Broward home to another county in order to receive the treatment she believed would save her life.

She says her insurer repeatedly told her she could not visit a renowned gastroenterology clinic at the University of Miami because it was not included in the insurer’s provider network.

Other insurers in Miami-Dade and Palm Beach counties — the two counties a few miles to the south and north — offered plans that would pay for Miller’s treatment at the UM clinic.

As part of Medicaid managed care, insurers choose which counties to sell plans in. None of the four insurers providing coverage in Broward included the clinic in their networks.

Hours after the Miami Herald called the insurer, Sunshine Health, to inquire about her case, Miller says she was told she could now visit the clinic.

“I’m over the moon,” Miller said. “I’m praying they can help me.”

In a statement to the Herald, Sunshine said that it had given Miller special permission to seek treatment at the clinic in October. “Our main focus is ensuring this member gets the services she needs,” wrote Alia Faraj-Johnson, a spokeswoman for the company.

She did not address questions about how or whether Miller could have misunderstood the options available to her. Faraj-Johnson also said Sunshine would include the clinic in its network as of Jan. 1.

Patricia Meyer, Miller’s sister-in-law and healthcare surrogate, said she spent weeks trying to convince a case manager at Sunshine that Miller needed to continue treatment at the clinic after a promising initial visit in September, when she was still covered under a previous Medicaid insurance plan.

“They just would not listen,” Meyer said.

Meyer said the company, which is owned by Missouri-based Centene, refused and told Miller to seek treatment with its in-network GI specialists in Broward. But Miller didn’t like the doctors. She felt that her best hope lay with the UM clinic — and she didn’t want to relocate to one of the counties where the clinic would be covered.

At 44, Miller has built a life in Broward, a life that doctors told her parents would last just a few months after she was born, and has even raised a son, another medical unlikelihood, her doctors said.

People with rare and serious conditions like Miller could be at risk of being denied the treatment they need in the private market, said Joan Alker, executive director of the Center for Children and Families at Georgetown University and an expert on Florida’s Medicaid system.

“This is exactly what I was worried about when Florida began moving to managed care,” Alker said. “There must be exceptions for people with rare conditions to access the care they need.”

She called Miller’s initial inability to seek treatment at UM a potential sign of “network inadequacy.”

Greg Mellowe, policy director at the consumer advocacy group Florida CHAIN, also worries about the quality of care under the new system.

“Although the purpose of the Medicaid program is to ensure recipients’ access to appropriate and timely care, the plans ultimately report to shareholders or investors, not recipients,” Mellowe said.

The state has long contemplated switching to managed care and launched pilots in several counties starting in 2005. Broward was among the counties included. Eligible Medicaid recipients around the state enrolled in private plans earlier this year.

Justin Senior, Florida’s Medicaid director, said managed care had established the “strictest network adequacy programs we’ve ever had in Florida.”

Plans must meet prescribed patient-doctor ratios, including a minimum of one licensed and board-certified GI specialist for every 8,333 patients, in order to win state approval, Senior said. And 95 percent of doctors in a network must accept new patients, he said.

Sunshine met the state’s adequacy requirement. Even so, Senior said, “they may not have every single GI doctor in the area in their network.”

“Someone with a need for a GI specialist in the private sector would deal with the same issues,” he said.

Senior said that because Sunshine provided a satisfactory network, the state could likely not force the insurer to let Miller seek treatment at the UM clinic. “We’d have no contractual lever there,” Senior said.

“It’s really difficult to say from a quality standpoint that the GI service at UM is necessarily better than anything available in Broward,” he said.

Under the old system, the state paid doctors and hospitals directly for every service they provided to patients — called a fee-for-service system. Now providers must agree to contracts with private insurers who reimburse them for treating patients on Medicaid.

The insurers are paid a fixed monthly fee by the state for every recipient on their books. The rate changes depending on whether the recipient has a chronic condition and other factors.

In Florida this year, Medicaid will cost $22.1 billion in state and federal dollars. Most states now use some form of managed care for Medicaid.

Miller is no stranger to the healthcare system; she spent much of her childhood in Jackson Memorial Hospital.

Hirschsprung’s disease leaves the colon unable to pass stool and requires extensive surgery at birth to correct. Miller was also born without a fully developed anus or rectum and had to have them surgically constructed.

She’s averaged about one major abdominal surgery a year and has less than four inches of her large intestine left. A healthy person would have five feet.

But the surgeries worked and for years Miller enjoyed a happy life working in various trades and raising her now 21-year-old son, Scott. In April, though, Miller started suffering from extreme vomiting, diarrhea and pain.

Dehydrated and exhausted, she was hospitalized repeatedly, and eventually diagnosed with Crohn’s disease, which inflames the bowel, and ulcerative colitis, which causes painful sores in the intestine. She also suffers from hepatitis C, the result of a tainted blood transfusion in the ’70s.

In August, she said, her doctors at Holy Cross Hospital in Fort Lauderdale told her they’d done what they could but recommended that she seek care at UM’s gastroenterology department, which specialized in Crohn’s and colitis.

In an interview, Miller lifted her shirt to show a painfully swollen belly crisscrossed by bruises and scars. “I’m in pain all day,” she said. “And the swelling won’t go away even if I can’t keep anything down.”

She said she couldn’t believe it when the UM clinic called last week and said she could schedule an appointment for early January. “I feel like there’s hope now,” she said.

Senior, Florida’s Medicaid director, urged Floridians on Medicaid to call or write the state Agency for Health Care Administration if they are unhappy with their plan or providers. He said it was important Miller had secured an appointment with her doctor of choice.

“People getting connected to care: This is how the system should work,” Senior said.

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The Centers for Disease Control and Prevention tracks how hospitals around the nation perform on preventing six types of frequently occurring infections, including bloodstream and urinary tract infections that result from catheters and surgical site infections that develop after colon and hysterectomy operations.

North Shore Medical Center did worse than national standards in controlling four types of infections.

Only one other Florida hospital, UF Health Jacksonville, a teaching hospital in Duval County, underperformed the CDC benchmarks in more than two categories, and only seven hospitals in the nation underperformed in four categories.

Cristy Martinez Paez, a spokeswoman for North Shore Medical Center, wrote in an email that the hospital provides “high-quality patient care” and is engaged in an “ongoing effort to reduce hospital-acquired infections by implementing proven methods such as a comprehensive safety program on every unit.”

She wouldn’t provide details of the safety program, saying only that “we continue to work toward a goal of zero cases.”

The CDC collected the data on infections from 4,683 hospitals around the county, including 179 in Florida, between October 2012 and September 2013.

“These kinds of infections usually occur because of fairly simple problems and errors by healthcare providers — and they have simple solutions that can be easily enacted,” said Robert Brooks, a patient safety expert who served as secretary of the Florida Department of Health between 1999 and 2001.

One in 25 patients develop an infection on any given day while in hospital care and one in nine people infected will die in the hospital, according to the CDC.

“We as a society need to continue to bring attention to facilities that don’t meet community standards in relation to medical errors or hospital-acquired infections,” said Brooks, who is also an adjunct professor at the University of South Florida.

In Miami, North Shore did worse than national benchmarks in four categories: central-line bloodstream infections, catheter-associated urinary tract infections and infections from two types of antibiotic-resistant bacteria, MRSA and C. diff.

Tenet Healthcare, the Dallas-based company that owns North Shore, did not respond to a request for comment.

UF Health Jacksonville, part of the University of Florida health system, also underperformed in four categories.

“Safety-net hospitals like ours tend to be at a disadvantage in these studies when compared to other hospitals because of our unique patient population,” said Daniel Leveton, a spokesman for UF Health Jacksonville, in a statement.

Leveton said the hospital tends to treat patients with more severe conditions who haven’t had adequate access to preventive care. “Treating them can be more of a challenge, one we accept as part of our mission in helping this community,” he said.

Jackson Memorial Hospital in Miami, also considered a safety-net institution, exceeded expectations for bloodstream and urinary tract infections but failed to meet them for MRSA.

Nancy Foster, vice president of patient safety at the American Hospital Association, said the CDC data were by and large “very well crafted,” but it might be penalizing to hospitals that aggressively diagnosed and treated infections. She also said the overuse of antibiotics could lead to problems.

“We don’t want to over-prescribe antibiotics because that leads to even more antibiotic resistant organisms,” Foster said.

As a whole, Florida hospitals are performing significantly better than national benchmarks in three areas: bloodstream, urinary tract and colon infections, according to CDC data in March.

Bruce Rueben, president of the Florida Hospital Association, a trade group, said hospitals in the state were working together to find effective strategies for reducing infections and other hospital-related injuries like falls and medication overdoses. Patients and providers would benefit from focusing on the problems, Rueben said, in part because hospitals have higher treatment costs when patients develop complications under their care.

The federal government compiles scores for individual hospitals based on a broad range of patient safety measures, including hospital-acquired infections.

In December, the government will announce the first round of , assessed through Medicare payments, for hospitals with low safety scores. The program was established as part of the Affordable Care Act.

The government is also expected to release updated infection rates for hospitals by the end of December.

Standardizing procedures that nurses and doctors perform on patients can help prevent infections, said Dr. Robert Goldszer, chief medical officer at Mount Sinai Medical Center in Miami Beach.

“More variation means more opportunities for things to go wrong,” Goldszer said. “We’re trying to design the easiest way to provide our patients with the right care all the time.”

Mount Sinai performed worse than national benchmarks in preventing MRSA and post-surgical colon infections but exceeded for urinary tract and C. diff infections.

Goldszer said Mount Sinai had worked with the Florida Hospital Association and other healthcare institutions to identify ways to improve its fight against infections including increased hand-washing, special soaps to clean a patient’s skin before surgery, avoiding the over-use of catheters and investigating how every new infection occurs.

He said the hospital had reduced the frequency of colon infections from 20 cases in 2013 to five as of September this year, and had also seen a moderate drop in its rate of MRSA infections.

“We need to continuously measure and assess our progress,” Goldszer said.

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As part of its agreement with the Florida Office of Insurance Regulation, Cigna will cap the amount consumers pay for four popular HIV drugs — Atripla, Complera, Stribild and Fuzeon — at $200 per month. Previously the company asked consumers to pay a co-insurance of 40 to 50 percent of the drugs’ cost.

Cigna will also move generic HIV drugs from its most expensive specialty “tier” to a less expensive tier for generics. And it will no longer require consumers to seek “prior authorization” from the insurer to refill their prescriptions.

The agreement said that Cigna had entered into the consent order, in part, to “avoid litigation.”

In May, two civil rights groups filed a complaint with the federal government accusing Cigna and three other Florida insurers of discriminating against people with HIV.

The complaint, lodged with the U.S. Department of Health and Human Services, said the four companies made lifesaving HIV drugs so expensive that they prevented consumers “from enrolling in those health plans — a practice which unlawfully discriminates on the basis of disability.”

Cigna denied all wrongdoing in the consent order, which also stated that Florida regulators made “no finding” about whether the company’s practices violated state or federal law.

In October, the Miami Herald wrote about among Floridians with HIV that they would not be able to afford prescriptions under plans offered on the federal marketplace for health insurance, which opens Nov. 15.

Carl Schmid, deputy executive director of the AIDS Institute, one of the groups that filed the federal complaint, called the agreement a “good first step,” but said it should have gone further.

“We’re glad that Cigna recognized they had problems with the way they designed their plans and how it affects people with HIV,” Schmid said.

But he added that the cap on out-of-pocket monthly expenses should have been expanded to include more drugs. Schmid also said that Cigna should offer customers a 90-day supply of its medications, rather than the minimum 30-day supply agreed to in the consent order.

Karen Eldred, a spokeswoman for Cigna, wrote in a statement to the Herald that the insurer had voluntarily agreed to the changes in order “to offer customers quality, affordable care.”

HHS is still investigating the issues raised by the federal complaint, spokeswoman Rachel Seeger confirmed.

In the consent order, state regulators said they had been provided with a copy of that complaint, which also named CoventryOne, Humana and Preferred Medical as discriminating against people with HIV.

Amy Bogner, a spokeswoman for the state Office of Insurance Regulation, would not comment on whether it was negotiating consent orders with the other companies or planning to pursue litigation against them.

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Now Smith, 42, of Coral Springs, has been told he must sign up for coverage on Florida’s federally run insurance exchange or the state will stop helping him pay his premiums.

“The landscape of healthcare 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 is not clear that ACA insurance plans will 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 preexisting medical conditions. The four companies all offered 2014 plans in Florida, including in Miami-Dade and Broward counties, and plan to do so again in 2015, with the exception of Preferred Medical in Broward.

It is an important issue for Florida, which has the third-highest rate of HIV infection in the nation, and for Broward and Miami-Dade, which have the highest rates statewide. 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 will not be announced until early November, leaving Smith and other Floridians with HIV in limbo. Open enrollment will begin 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 kinds of problems that marred its introduction, preventing 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 toward 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 will not 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 increase 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 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 discriminates against people with HIV.”

In a statement to the Miami Herald, Aaron Albright, a spokesman for CMS, called the law’s anti-discrimination 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 will 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 anti-retroviral, 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 is 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 about 500,000 HIV-positive people nationwide. By federal law, the Ryan White program 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 the Ryan White program, meaning that those whose medication costs can be reduced 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 federal marketplace coverage. The state would be in danger of losing its Ryan White program funding if it did not move people onto the exchange.

At the Legal Aid Society of Palm Beach County, which helps Ryan White program 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 healthcare 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 worries that others with HIV might 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 <a target="_blank" href="/news/obamacare-may-mean-high-drug-costs-for-floridians-with-hiv/">article</a&gt; first appeared on <a target="_blank" href="">Â鶹ŮÓÅ Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">