Read AFC's CountyCare report and press release.

On January 1, 2014, national health care reform will kick into high gear, providing new health insurance options for millions of people across the country. And thanks to visionary leadership from Cook County Board President Toni Preckwinkle, Cook County Health and Hospitals System Board CEO Dr. Ram Raju, and the Obama administration, the Affordable Care Act (ACA) is already being implemented in Cook County in the form of CountyCare.

This new program implements a provision of national health care reform that allows states to expand Medicaid programs to cover most low-income adults. The federal Center for Medicare and Medicaid Services (CMS) granted Cook County permission to implement the program in October 2012. Previously, as many as 250,000 Cook County residents were excluded from Medicaid because they did not meet the program’s restrictive eligibility requirements, such as being totally disabled. The AIDS Foundation of Chicago (AFC) estimates that 1,800 or more Cook County residents with HIV could benefit from CountyCare.

While CountyCare is a sign of great things to come, it also provides some critical lessons that can be applied later this year when health care reform rolls out statewide. AFC recently released a new report, CountyCare & the Ryan White Program: Working Together to Optimize Health Outcomes for People with HIV, that details the importance of CountyCare and the role it can play in improving access to health care for HIV-affected individuals. It also contains a number of policy recommendations for the city and state departments of public health, Cook County, and the federal government that aim to improve the program for people with HIV and avoid problems in the future.

The most significant issue with CountyCare for people with HIV is that nine HIV clinics  in Chicago are excluded from the primary care network. As a result, 500 or more patients with HIV could be forced to switch doctors to receive care at a clinic that’s already enrolled.

Many low-income people with HIV have connections to the health care system that are tenuous at best. They are facing not just HIV and its paralyzing stigmas, but also homelessness, mental illness, substance use, and chronic physical health conditions, such as diabetes and heart disease. Large numbers live in violence-plagued communities in Chicago, where a trip to the corner store can mean getting caught in turf-war crossfire. In such contexts, HIV care is the last thing on a person’s mind, and something as simple as having to find a new doctor can cause them to drop out of medical care entirely.

Delayed or disrupted health care harms people with HIV and also worsens the health of our communities.  People who are not taking HIV medications face a far greater risk of transmitting HIV to their partners. In fact, research shows that people whose HIV is controlled with medications have a 96 percent lower risk of transmitting HIV to their partners.

If those nine clinics are unable to join the CountyCare network, their HIV-positive clients will be forced to switch to new health care providers. The federal Ryan White Program, which subsidizes medical care for low-income uninsured patients with HIV, is mandated by law to be the payer of last resort, tapped only when people have exhausted all other sources of coverage. In fact, federal law prohibits clinics from serving patients with Ryan White dollars if their insurance could be used. Thus, people with HIV are caught in a bind: They are required to apply for all insurance for which they are eligible, but if they enroll, they might be forced to leave their current health care provider of choice.

The Ryan White Program’s payer-of-last-resort provision is a double-edged sword. Despite being a resource for people without coverage, it has the potential to disrupt existing doctor/patient relationships, something all of us – and especially people with chronic, complex health conditions like HIV and other co-occurring diagnoses – want to avoid.

Such potential disruptions occur because different federal government entities routinely drop the ball in coordinating and communicating their strategies. One of the lessons we have learned as we prepare to implement health care reform nationwide is to closely monitor the interactions and implications of various programs.  We cannot rely on the federal government to communicate across or even within agencies. Sustained advocacy and vigilance will be needed as health reform kicks off.

So what are other lessons we are learning from the CountyCare rollout, and what can we do to avoid situations like this in the future?

It’s clear that the transition to new health care reform programs will be slower than we want. Case managers and other staff at community clinics are already overwhelmed by the flood of clients they see every day; it will be challenging to help thousands more people apply for new ACA programs, connect them important resources, and ensure they’re receiving optimal HIV care. New federal funding for ACA enrollment staff will hopefully help with this task.

Moreover, the HIV community needs to better prepare itself for health reform programs. Most importantly, clinics should aggressively reach out to new Medicaid and private insurance programs to make sure they are part of these new programs, and the insurance companies must do their part and enroll HIV clinics in their networks.  Clients can’t be stripped of medical options because their doctor doesn’t accept their insurance.

Establishing the right enrollment and service systems under CountyCare is paramount for people living with HIV. We have a unique opportunity to improve health care access and services for individuals with this disease. Getting this right is imperative, so we can learn from this rollout and help tens of thousands of other Illinoisans affected by HIV, who will have new insurance options in 2014 when the ACA goes into full swing.

The new report from AFC also details recommendations for service organizations, case managers, government officials, and people with HIV, so that all can take full advantage of CountyCare. It’s available at www.aidschicago.org/countycare.

Masumi Yoneyama is an Ironman—but that’s not entirely due to the 70.3-mile race she aims to conquer this August with TEAM TO END AIDS (T2).

To learn why, we have to go back to 2011, the worst year since her mother’s death over a decade ago.

Working at Trader Joe’s, Masumi did a lot of heavy lifting. She admits, “I probably didn’t use proper form when breaking down wine crates, and that’s what really hurt my back.” But her injury didn’t express itself until she climbed a ladder and caught herself as she began to fall.

Though the ladder stayed upright, it came at the expense of her spine: She overextended it and would soon discover excruciating pain.

For four-and-a-half months, she could barely move. Crippling jolts of agony accompanied everything she did—the result of two collapsed discs. Her Orthopedist said that she would never run again, that she had the bones of a 60-year-old woman, that her discs would remain collapsed.

Masumi grew depressed, seeing no end to her pain—except through suicide. She had always been a happy, cheery person, finding joy in music and athletics, but in the context of her injury, she had become a morose reflection of herself.

Between weekly appointments, Masumi’s doctor would call her to make sure she was safe, to make sure she wasn’t too tempted to take her own life.

“It was just a really bad time,” she recalled.

Her boyfriend broke up with her and her last remaining grandparent died, shrinking her already small family. Something had to give.

“Things didn’t change until I decided that I was tired of being miserable. I didn’t like being dark and sad,” Masumi said. A therapist gave her a book that, she admits, has a cheesy title but was exactly what she needed.

Genie in Your Genes taught her about the power of the mind, and she took it to heart. Daily, she meditated and visualized herself being pain free. Though Masumi wasn’t an intense athlete before her injury, she desperately wanted to run again, so she did—in her mind.

She pictured herself in stride, tasting the air, racing, crossing the finish line.

After two weeks of intense mental focus, Masumi walked into her physical therapist’s office without a limp. The therapist was shocked, wondering if she had received shots for her pain, but she didn’t. “I read the book you gave me,” Masumi told him.

Still, her therapist agreed with the doctor and said that she would likely never run a marathon again, but he suggested she try triathlons. Though she had never been a swimmer or biker, she figured she’d go for it.

A couple months later, Masumi completed the 2012 Chicago Lifetime Tri in 1:41:02. More importantly, she lived the best day of her life.

Masumi was rediscovering herself: her love of music, her passion for art, her enthusiasm for sport. She joined TriMonster, an endurance training program at Fitness Formula Clubs (FFC), where she would soon meet Kevin Ciacco from T2.

Kevin, AFC’s multisport events manager, was hosting an information session at FFC for athletes interested in participating in Steelhead Ironman 70.3. Masumi was in the audience, and she was committed to finishing the race by the end of Kevin’s presentation. Though she didn’t have an obvious connection to the fight against HIV/AIDS, she liked the challenge of mixing a triathlon with fundraising.

“I have never raised money before,” she said, but she quickly corrected herself. “Well, I guess my mom bought cookies from me once for a school fundraiser when I was in band, but that was it.”

Through all of her training, Masumi had been focusing her meditations by folding Origami cranes. According to Japanese folklore, anyone who creates a thousand paper cranes will have their heartfelt wish come true.

So far, Masumi has folded over 1,700.

“I want to see a thousand smiles, to bring about a thousand good deeds. I want to touch a thousand hearts, to listen to a thousand stories. I want to inspire a thousand people to spread happiness and to motivate a thousand people to reach for their dreams.”

T2 was the perfect intersection for Masumi’s artistic and athletic lives, providing her with a platform to host a concert that would also display her artwork with cranes. All of the proceeds would benefit the AIDS Foundation of Chicago.


Masumi called this the “Happiness Project,” and on May 5, she pulled it off, raising $880 for people living with HIV/AIDS. What’s more, her event bolstered her mission of spreading peace and joy.

Now all she has left to do is the Ironman 70.3, which for Masumi, should be the easy part.

You can visit her T2 fundraising page to follow her training or make a contribution.

The AIDS Foundation of Chicago (AFC) recently made the difficult decision to oppose legislation that creates a state-federal partnership for operating Illinois’ health insurance marketplace. We base this decision  on the poor consumer protections in the bill.

House Bill 3227 (Senate Amendment 2) is backed by our partners, including Campaign for Better Health Care (CBHC), and is sponsored by Sen. Dave Koehler (D-Peoria), a long-time friend of AFC and champion for helping people without insurance access health care. Still, we cannot support it.

The Affordable Care Act (ACA), the new national health care reform program established by President Obama and Congress in 2010, creates online health insurance marketplaces that will allow individuals, families, and small business employees to shop for health coverage. Such marketplaces – which will be comparable to, say, Travelocity for health insurance – are a central component to the success of ACA state implementation. Plans sold on the marketplace will be available to anyone, including people with HIV, regardless of their diagnosis or condition, ending decades of legal discrimination by insurance companies against people with HIV. People earning between about $16,000 and $46,000 will be able to receive subsidies to make premiums and out-of-pocket costs more affordable.

States have the option to operate the marketplace themselves, use a marketplace run by the federal government, or operate a state-federal partnership. In 2014, Illinois will employ the state-federal partnership option and use the federal marketplace as the backbone of its system; however, Illinois will directly operate outreach, enrollment, and other programs. Eighteen states are running their own marketplace; seven, including Illinois, will use a state-federal partnership model; and 27 will exclusively use the federal marketplace. (See the Kaiser Family Foundation's "State Decisions on Health Insurance Exchanges and the Medicaid Expansion" for more information.)

AFC and many other advocates, health care providers, insurance industry officials, brokers, and others believe a state-operated marketplace is best for Illinois. This would allow the state to have the most control over the program and facilitate better coordination with Medicaid, which will cover people earning roughly $16,000 or less.

The ACA will give considerable flexibility to states that operate their own marketplace, allowing them to determine governance and organizational structure, financing, and the ability to establish operational requirements to meet federal standards. These decisions will greatly determine if the marketplace is successful at providing affordable health plans for individuals and small businesses.

HB 3227 would create an Illinois-run marketplace beginning in 2015. The bill created a quasi-government entity to operate the exchange, which would be funded through a tax on the insurance industry.

It’s no secret that the insurance industry has tremendous influence in Springfield. Advocates often joke that consumer-friendly insurance reform bills go to the House and Senate Insurance Committees to die. Moreover, the insurance industry makes significant campaign donations to sitting members of the General Assembly, as detailed in this 2011 State Journal Register article.

The primary reason AFC opposes HB 3227 is that the Illinois General Assembly and its insurance-industry allies would have heavy control over the marketplace. Here are three examples of why this creates an unhealthy system of oversight: 1) the General Assembly would annually approve the budget for the exchange, even though its operating funds are held outside the state treasury; 2) the General Assembly would control even small details, such as the executive director’s salary; and 3) language in the bill limits the exchange’s ability to impose future standards that are more rigorous than the minimums established by the federal government. 

Giving significant control of the exchange to the General Assembly is akin to letting the fox design, build, stock, and guard the henhouse. If us chickens are to have a meaningful choice of affordable insurance plans that provide high-quality health care, the exchange needs more independence from the General Assembly and by extension, the insurance industry.

We favor an independent marketplace board of directors that includes strong consumer and small business members, not  insurance industry representatives. A board with these standards and statewide representation will be vested in making the best decisions for Illinois health insurance consumers.

In addition, AFC is concerned that the marketplace bill has the potential to leave people with HIV vulnerable to health insurance companies. For example, federal law requires insurance plans to contract with “essential community providers,” which include medical clinics funded by the Ryan White Program. This requirement makes sure people with HIV don’t have to switch health care providers and can obtain high-quality HIV care; however, AFC is concerned that health plans might exclude Ryan White Program providers in order to drive away people with HIV—a potentially discriminatory practice.

Moreover, the Illinois bill simply references the federal standards for navigators, which are weak and contain no numerical standards:

§ 156.235 Essential community providers. (a) General requirement. (1) A QHP issuer must have a sufficient number and geographic distribution of essential community providers, where available, to ensure reasonable and timely access to a broad range of such providers for low-income, medically underserved individuals in the QHP’s service area, in accordance with the Exchange’s network adequacy standards. (45 CFR 156.235)

Under the federal-state partnership marketplace that will roll out in 2014, a different set of federal rules requires that plans contract with at least 20 percent of essential community providers in their service area. If they cannot meet that standard, they must submit a written statement, explaining their shortcoming and how they will make sure the network is adequate (see page 7 of this letter to issuers on federally-facilitated and state partnership exchanges). Although we earlier argued that this provision is also weak, we think the specific 20 percent requirement is better than the federal requirement Illinois would follow under HB 3227.

HB 3227 passed the Senate Insurance Committee on May 9 by a vote of eight to five. Tellingly, the Illinois Governor’s Office position was “neutral,” meaning they neither supported nor opposed the bill. The bill awaits a vote in the full Senate, and then must proceed to the House. It’s too soon to predict if the measure will advance in the House by the end of the session on May 31.

Meanwhile, the marketplace, run by the state-federal government, will begin enrolling Illinoisans beginning on October 1, 2013, for coverage starting January 1, 2014.

If HB 3227 does become law, AFC will work to influence regulations to favor consumers, and of course, we will advocate in future General Assembly sessions to improve the law for people with HIV, as well as other vulnerable populations.