When he felt overwhelmed, Tucker often checked into Chicago-area hospitals for days at a time. The hospitals provided structure, support and medicine but at a high price: Tucker’s 16 hospital visits in 2012 cost about $50,000, according to IlliniCare Health, the Medicaid managed care organization that insures him.

Tucker, 36, now lives in a Blue Island apartment, sees a psychiatrist and takes medication regularly, and is working toward getting a GED. He visited an emergency room only once in 2014, and his care for the year cost about $6,000, according to IlliniCare. For these improvements the insurer credits Tucker’s transition to Thresholds, one of many providers of community-based mental health care in the state that Gov. Bruce Rauner has targeted for budget cuts next year.

Rauner’s proposal would reduce or eliminate funds for psychiatry, housing programs for the homeless and care coordinators who direct people with mental illness to appropriate care. Providers of the services call the proposal misguided, saying it would drive people like Tucker to hospitals, nursing homes, prisons and jails, where treatment costs are higher.

“It is short-sighted, because you’re just going to move people from one system that’s relatively cost-effective and inexpensive into a more expensive system,” said Eileen Durkin, president and CEO of Community Counseling Centers of Chicago. About 135,000 Illinoisans received community-based mental health care services in fiscal year 2014, according to the Department of Human Services.

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Line 61 on Form 1040 comes from the Affordable Care Act, which last year started requiring most Americans to have health insurance or pay a penalty. But the law routed the penalty — and subsidies that help pay for insurance — through the tax system, assigning major new responsibilities to the Internal Revenue Service, an agency struggling with a shrunken budget, diminished staff and plummeting levels of customer service.

At a time when people still may be asking what health insurance has to do with their taxes, those seeking help from the IRS this tax season face historically long telephone holds, slow written responses and limited in-person help, according to the Taxpayer Advocate Service, an organization representing taxpayers inside the IRS.

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Several standard treatments cost more than $1,000 per month on many Coventry Health Care and Humana plans, while some of the same drugs cost as little as $35 on plans other insurers sell on the exchange, according to an AIDS Foundation of Chicago analysis.

“While certainly there are plans on the marketplace that offer good coverage, what we think these companies are doing is putting out a signal that people with HIV are not welcome on these plans,” said John Peller, the foundation’s president and CEO.

The AIDS Foundation warned Coventry, Humana and two other insurers in January letters that the way they are pricing the drugs may violate federal protections against discrimination. The  forbids insurers from discriminating against people with pre-existing conditions.

Health Alliance places all single-pill regimens, along with a drug commonly combined with others to treat patients, on the fifth tier in a six-tier system, resulting in “mostly unaffordable” drug coverage for people with HIV, the foundation wrote.

Health Alliance spokeswoman Laura Mabry noted that the insurer places several of its HIV drugs in low-cost tiers. “Our goal continues to be providing choices that meet consumers’ needs, including their prescription drug needs,” she said in an emailed statement.

UnitedHealthcare classifies most of the drugs used in the HIV treatments as tier two but also marks them as specialty drugs. Daliah Mehdi, the AIDS Foundation’s chief clinical officer, said the insurer told her the specialty designation made those drugs more expensive than others in tier two. But a UnitedHealthcare spokesman told the Tribune the drugs were not more costly.

In Florida, the AIDS Institute and the National Health Law Program filed a complaint over the cost of four treatments with the Department of Health and Human Services’ civil rights office. The complaint is still under investigation, but Coventry, Humana and two other insurers voluntarily reduced prices after a Florida regulator questioned whether the insurers were violating state law.

Coventry capped the costs of the four treatments at $200 per month, while Humana limited patient payments to 10 percent of what the insurer pays for all HIV and AIDS drugs on its specialty tier.

On Friday, the federal Centers for Medicare & Services issued a rule for 2016 that prohibits plan designs that place “most or all drugs that treat a specific condition on the highest cost tiers” and that charge more for single-tablet regimens than for treatments that require patients to take multiple pills.

About 37,000 Illinoisans had been diagnosed with HIV or AIDS as of December, with an average of 1,788 diagnosed each year from 2009 to 2013, according to the most recent Illinois Department of Public Health figures.

Information on how many HIV patients in Illinois have joined Affordable Care Act plans is not publicly available, but about 8,000 people who have received state help paying for their HIV or AIDS medication have signed up for a plan, joined Medicaid or are in the process of getting insurance, a health department spokeswoman said. About 9,300 people received help through the AIDS Drug Assistance Program last year, she said.

The state program now helps pay premiums and drug costs for the low-income recipients who have obtained insurance, along with those who are still uninsured, the spokeswoman said.

Patient advocates said lower drug prices would not only ensure access to treatment for HIV and AIDS patients but also help reduce the virus’ spread, as some of the treatments make transmission less likely.

Will Wilson, a 61-year-old Gurnee man who said he was diagnosed with AIDS 13 years ago, recently obtained insurance through his employer that covers nearly all the cost of his Atripla prescription.

After his diagnosis, Wilson said, he went broke paying for the 16 pills a day he took to keep the syndrome in check. Keeping his income low enough to qualify for state aid ultimately allowed him to afford treatment, he said. Now he works as an insurance navigator for a nonprofit organization, helping people understand their options.

Wilson said he thought the Affordable Care Act would bring a new measure of freedom for people with HIV and AIDS, but paying for treatment is still difficult for many. Even on health plans that pay relatively good rates for HIV and AIDS treatments, interpreting drug formularies and plan benefits to figure out a patient’s costs is extraordinarily complicated, he said.

“The system that was supposed to be easier for us is not easier,” Wilson said. “And once again we’re faced with (the question): We still have to fight for the drugs that keep us alive?”

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The proposed cuts would eliminate or reduce coverage of adult dental care, podiatry, renal dialysis and hemophilia and funding of some mental health rehabilitation facilities, according to a budget document and a Rauner budget official. The cuts would also reduce funding for hospitals by about $735 million, according to the Illinois Hospital Association.

Many of the targeted patient services were recently restored to the Medicaid program after being eliminated a few years ago to save money, Rauner noted in his budget address Wednesday. Legislators who support the services say eliminating them cost the state more in the long run.

Regarding Rauner’s proposed cuts, Democratic Senate President John Cullerton said: “We already did that.

“We found, for example, that if you cut people’s dental services and then they don’t go to a dentist, they end up going to an emergency room and it costs us more money,” Cullerton said. “So we went back and examined that and made a change.”

“People will not miraculously get better if they’re denied care for services,” said Rep. Greg Harris, D-Chicago. “They’ll just end up at a higher level of care in an acute care setting at the most expensive end of their disease.”

Other legislators responded that the added costs of emergency room services have not been well-documented.

“It’s theory,” said Sen. Dale Righter, R-Mattoon. “The simple fact is that we can’t afford to pay for those services. We couldn’t pay for them at the time we repealed the services, we couldn’t afford them when they were added back, we can’t afford them now.”

The earlier service cuts were part of a 2012 Medicaid reform law called the Smart Act; it was later amended to roll back some of those changes.

The law instituted a process to determine how many people were on Medicaid who were not eligible to be. Rauner proposes saving $75 million by being more aggressive in determining eligibility and by adding new efforts to “detect and prevent fraudulent and abusive billing practices by providers,” according to the budget document.

Barbara Otto, head of Chicago-based Health & Disability Advocates, said people often seek help from her organization after being wrongly classified as ineligible.

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After selecting the plan, Hernandez learned it didn’t cover the audiologist who had fitted her daughter, who is partially deaf, with a hearing aid. A Spanish speaker, Hernandez said through a translator that she was told it would cost at least $400 to see the audiologist under her new plan, and she has not gone back.

Officials at the Illinois Department of Healthcare and Family Services say they have tried to avoid disruptions of care as the state shifts 2.2 million of its 3.1 million Medicaid patients to managed care, a system in which the state pays a fixed amount for each patient instead of reimbursing providers for each test and treatment.

But some patients are reporting difficulties keeping their doctors and confusion navigating plans as they try to make the shift.

The reports include wrong information on websites for insurance plans and hospitals; hours on the phone with insurers, hospitals and a state contractor who helps with enrollment; conflicting letters in the mail; changes to prescriptions, and other frustrations. For Hernandez, the change has meant she will need to find another audiologist for her daughter.

Some doctors say the state is reassigning their patients to new offices and has created new administrative requirements that burden their practices, delay care for patients and slow payments from insurers.

“I hope this works out and is better for patients and more efficient for the state, but right now it’s been extremely challenging for all parties,” said Dr. Donald Luyre, a vice president of the Illinois Academy of Family Physicians and CEO of Elmhurst Clinic.

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Kelly told insurance agent Robert Slayton about his underactive thyroid, his need for a chiropractor and other health specifics. After a briefing on deductibles, copays, drug costs and other insurance provisions, Kelly and his wife settled on a Blue Cross Blue Shield plan for which the couple pays about $700 per month.

“There are so many variables, and (Slayton) put them into easily understandable piles for us to go through and make our own informed decisions with his help,” Kelly said.

Insurance agents have so far played a limited role signing people up for Affordable Care Act insurance in Illinois, where the state has focused on federally funded navigators to inform people about their options and help them buy plans or enroll in Medicaid.

But with future funding for the navigator program uncertain, the state is expanding the role of insurance agents in its outreach efforts.

Get Covered Illinois, the state’s enrollment arm, is spending about $150,000 this winter to help 13 insurance brokerages pay for co-branded marketing materials, said Jennifer Koehler, Get Covered Illinois’ executive director. The site lists about 150 insurance agents who have completed state training courses in Medicaid and data security.

Unlike navigators, insurance agents can ask people specific questions about their health and then recommend a specific plan or insurer. Insurers pay agents a commission on plans sold, usually a percentage of the premiums.

Agents say their commission on health plans in Illinois is around 6 percent of premiums — much less than they receive for selling other types of insurance. Sometimes insurers pay a flat fee instead.

The financial motivation for agents could help consumers in the long run by boosting the number of people with health insurance, said Barbara Otto, CEO of Health and Disability Advocates, a nonprofit that has been involved in state health initiatives.

“Who’s going to be enrolling populations after 2015, after 2016, after 2017? So we started investing in brokers,” Otto said.

For some health insurance shoppers, the specific recommendations agents can offer make it easier to pick a plan, said Slayton, president of Naperville-based brokerage Robert Slayton & Associates and a former president of the Illinois State Association of Health Underwriters.

“An agent can do the same thing (as a navigator), but at the same point in time they can advise the person based on their personal health on what they need,” he said.

Agents can also draw on their experience to help customers pick an insurer, Slayton said. For example, an agent could tell a customer that one insurer typically pays claims more reliably than another.

Agents receive no commission for selling Medicaid plans. They usually refer people who are eligible for Medicaid to navigators, several Chicago-area agents said.

The restriction on navigators recommending specific health plans is a product of negotiations between state officials and insurance agent groups before the federal marketplace came online, said Phil Lackman, executive vice president of Independent Insurance Agents of Illinois.

“We still believe, in the majority of cases, that consumers want the assistance of an agent or broker,” Lackman said, while acknowledging that in some parts of the state there are few licensed agents.

The federal government created and funded the navigator program to enroll people in private plans and Medicaid, the state insurance program for the poor and disabled.

Illinois is spending about $25.8 million in federal money on more than 900 navigators’ salaries for the open enrollment period ending Feb. 15. State health officials have applied for money to keep the program going at least through next year’s open enrollment, but it’s unclear how much they will receive, state spokesman Mike Claffey said.

Agents have traditionally helped small businesses manage health care plans and are well suited to reaching the working poor, a population that is important for the health law’s sustainability, said Otto, of Health & Disability Advocates.

Of the 900,000 working-age Illinoisans who became eligible for insurance through the Affordable Care Act’s federal marketplace, only about a quarter signed up during last year’s open enrollment period, according to an analysis of census data by Illinois Health Matters, the research arm of Health & Disability Advocates. About 63 percent of the 900,000 are employed, according to the analysis.

“If we want to reach that population, which is largely the working poor, we have to go to where they’re working. We have to be a little more innovative,” said Otto.

Most of the employed people who are eligible for marketplace plans work for small businesses or franchises, according to a Health & Disability Advocates report.

Insurance agents can help small businesses use the federal marketplace’s Small Business Health Options Program, known as the SHOP marketplace, or can help workers pick plans individually if their employer doesn’t offer insurance, the report suggests.

Making a profit from selling Affordable Care Act health insurance plans is difficult, said George Kleanthis, an agent with Woodridge-based Hartland Insurance Services, which started selling the plans in the current open enrollment period. But selling that coverage helps find clients who might be interested in life, auto, home and other types of insurance that pay higher rates, agents said.

Hartland has taken a similar approach to enrolling clients that navigators have taken — setting up tables at community events, going to churches and schools, holding town-square style meetings focused on health insurance.

“It’s a challenging business to be profitable in, but if you structure properly, and you’re able to scale a business, you can make money,” Kleanthis said.

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A plan she chose through the federal marketplace requires her to pay $5,000 toward medical costs before her insurer contributes anything. With an income of about $22,000, she doesn’t expect to hit that mark.

“I’m never going to use it,” she said. “I can’t use it. I can’t afford it.”

Gruberman and others who picked plans with the lowest monthly costs have found that medical care is still out of reach because of the plans’ high deductibles. As a result, many consumers with high-deductible plans are following old habits: delaying care or taking their needs to community health centers that have traditionally served the uninsured, local health administrators said.

“These people, even though they have access to some form of insurance, really do not have health care,” said Suzanne Hoban, executive director of Family Health Partnership Clinic, a free and reduced-cost clinic in Crystal Lake.

Officials have cited the number of people who signed up for private insurance last year as a measure of the federal health law’s success. About 217,000 Illinoisans signed up, exceeding federal expectations, and about 7.1 million Americans enrolled during the law’s first open enrollment period. But about 63,000 Illinoisans enrolled in low-premium bronze plans, which last year had a median deductible of $5,600 in the state and for 2015 have a median deductible of $5,750. Plans in the other categories — silver, gold and platinum — cost more per month but have lower deductibles and better benefits.

Administrators at free and charitable health care clinics in the Chicago area say they are adapting to new challenges posed by those among the newly insured who need help paying for care. The challenges are expected to grow next year.

Premiums for the cheapest bronze plans in Illinois are increasing by an average of 11 percent in 2015, according to state data. In the Chicago area, that means a 40-year-old will choose among bronze plans that have an average premium of $243 and a median deductible of $5,000, lower than the state median.

Annette Kopczynski, 62, of Huntley, signed up last year for a $6,000-deductible bronze plan with Blue Cross Blue Shield of Illinois. After tax credits, her monthly premium is $38. She said she sees a nurse practitioner at a reduced cost at Family Health Partnership Clinic because she cannot afford care through her insurance. She and her husband, who is on disability, pay about $25 per month toward the costs that accrue, she said.

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Treatment with new drugs Sovaldi and Harvoni, the first reliable cures for hepatitis C, costs more than $94,000 per patient. The high price of Sovaldi drove Illinois Medicaid’s hepatitis C spending to $22 million for the fiscal year ending June 30, 2014, up from $6.7 million the previous year, according to the Illinois Department of Healthcare and Family Services.

Facing higher costs, Medicaid officials stopped paying for any but the sickest patients to get the new drugs, drawing criticism from some liver doctors who have said the state is preventing them from properly treating their patients.

“There’s a difference between prescribing (hepatitis C) drugs and actually being able to get these drugs for our patients,” said Dr. Andrew Aronsohn, a liver specialist at the University of Chicago Medical Center. “It’s becoming a very complicated issue.”

The cash-strapped state faces a growing dilemma over how to balance public health and the spending of taxpayer dollars, as new specialty drugs emerge for hepatitis C and other sicknesses and more people are eligible for Medicaid under the Affordable Care Act.

In addition to limiting Sovaldi to the sickest patients, the Illinois Department of Healthcare and Family Services has set two dozen criteria for who can get the drug, including requiring that patients have no evidence of drug or alcohol abuse in the last 12 months and barring treatments not approved by the Food and Drug Administration.

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Health care providers would receive more money for providing vasectomies to men and birth control to women under the proposal, which also includes a possible new referral requirement for Roman Catholic providers and others that object to contraception.

The department expects to implement most of the proposed changes this fall, but department Director Julie Hamos said Medicaid will immediately start paying more toward the cost of long-term contraception at walk-in providers such as Planned Parenthood clinics.

Hamos said her department proposed the changes in part to address the recent Supreme Court decision that allowed some companies to exclude contraceptives from their employees’ insurance coverage on religious grounds. Oklahoma-based arts-and-crafts retailer Hobby Lobby, owned by evangelical Christians, sued over a requirement under the Affordable Care Act to cover contraceptives.

The court’s decision was of “extreme concern” to Gov. Pat Quinn and state health officials, Hamos said.

The new proposal affects residents covered under Medicaid, not by employers, but Hamos said the court’s decision brought new focus to the issue, spurring the department to announce the proposal quickly.

“It is an opportune time when women across the country are paying attention … that’s a time that we can really use that attention to focus on what’s available to them through Medicaid,” Hamos said. She noted that the change could help low-income women who shift between Medicaid and employer coverage as their employment situations change.

Unplanned pregnancies constitute a major cost among the approximately 1 million women of childbearing age enrolled in Medicaid in Illinois, Hamos said. About 3 million Illinoisans in all are enrolled, and the number is set to expand under the Affordable Care Act, commonly known as Obamacare.

Hamos said she could not provide cost estimates for the proposal but noted that 90 percent of Medicaid costs are being reimbursed by the federal government.

Expanded family planning has succeeded at saving money in other states, Hamos said, citing a Colorado initiative that she said cut teen birthrates by 40 percent from 2009 through 2013, reduced abortions and saved the state $42.5 million in 2010.

The Illinois proposal aims to coax more health care providers into expanding family planning services by increasing their reimbursement rates starting Oct. 1. Payments for vasectomies and intrauterine devices would be doubled. Hamos said the department is working with companies that manufacture IUDs to ensure they’re on health care providers’ shelves when needed.

The new policy also would increase reimbursement for nonsurgical sterilization kits, such as the device sold under the brand name Essure. Kai Tao, a senior policy adviser for the Department of Healthcare and Family Services, said the procedures are safer and less expensive than tubal ligation, the traditional surgical option, which Medicaid also covers.

In addition to the incentives, the proposal would prohibit “step therapy” rules that require a woman to try certain contraceptive methods before others. “It should be all about preventing and respecting the choice that she makes and how to do that,” Hamos said.

The Illinois department is prevented under federal law from requiring a health care provider to give patients information on contraceptives if it claims a “right of conscience” objection. Officials are weighing whether the state has the legal authority to add a new requirement to refer interested patients to institutions that do offer the information, Hamos said.

Representatives of local Catholic hospitals and a Roman Catholic business owner who filed suit over the Affordable Care Act’s contraception requirements did not immediately return phone calls.

The department, which worked with Planned Parenthood and other organizations on the proposal, is soliciting comments through Sept. 15 and expects to finalize the policy in the fall.

“This is a great way to give women access to the contraceptives they need in a timely fashion and have every contraceptive available to them,” said Pam Sutherland, vice president for public policy and education for Planned Parenthood of Illinois.

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