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Dear Friends,

munar_peller.jpgAs a person living with and concerned about HIV, I am enormously grateful to have spent the past 23 years of my career nurturing a vibrant and powerful community for social justice at the AIDS Foundation of Chicago (AFC).  It is therefore with mixed emotions that I announce my plans to step down as AFC's president and CEO at the end of March to take the helm at the Howard Brown Health Center (HBHC).

My time at AFC has been rewarding beyond measure. I am proud to have served people affected by HIV, stood shoulder-to-shoulder with the bravest activists I have ever known, and worked to advance system changes with incalculable positive impact for vulnerable people and communities.

In my next chapter, I will channel my energies - and all that I have learned - to advance the mission of HBHC, which is Chicago's community-based health care provider for lesbian, gay, bisexual, transgender, and questioning/queer (LGBTQ) people and allies.  As HBHC's president and CEO, I will apply new tools to the continued pursuit of health care justice for all, with a particular focus on meeting the needs of medically underserved populations.

I believe all people deserve non-judgmental, high-quality, and culturally competent care that they can afford.  The dynamic health care landscape offers great opportunities as well as systemic challenges. For diverse LGBTQ populations, there can be no equality without health.  This is why I plan to enlist HBHC's expertise in support of community-based advocacy, led by AFC and others, to ensure the implementation of the federal health reform law confers maximum benefits to people in our communities.

AFC is fortunate to rely on a talented staff and deep bench of stalwart leaders who advance our mission through results-oriented policy advocacy, systems coordination, and programmatic development. Tapping into our pool of influential leaders, the Board of Directors has appointed Policy Vice President John Peller - a local and national leader in HIV-related policy and programs - to the post of interim president/CEO, effective April 1.  I am confident that under John's leadership, the organization will remain strong and determined to apply the knowledge and technical know-how amassed in nearly 30 years fighting the epidemic to accelerate the fight and help all those disadvantaged in the epidemic's wake. 

As a trusted AFC ally and friend, I extend to you my heartfelt thanks for your kindness and steadfast support. Working together, we have an unprecedented opportunity to avail better outcomes in the health and wellness of people affected by HIV.

Yours truly,

David Ernesto Munar
President/CEO

PS: Learn more about John Peller's appointment to interim president/CEO and AFC's 2013 accomplishments online at aidschicago.org.

TNH_SquareImage_Resized.jpgLarry Kramer's The Normal Heart returns to Chicago for the first time since its Tony Award-winning Broadway revival in 2011.

This fall, TimeLine Theatre Company will breathe new life into one of the strongest historical dramas of the 20th Century.

For younger audiences who never knew the dark, deadly days of the early epidemic, the play relives the fear and panic of the early 1980s in urban America. To expose young viewers to this era--and the grassroots activism it galvanize--seemed to me its greatest virtue.

But of course The Normal Heart is so much more.

TimeLine Theatre Company graciously provided me a behind-the-scenes viewing of The Normal Heart, directed by Nick Bowling. I was moved to tears.

Yes, the drama chronicles the dawning of AIDS activism in the wake of unconscionable political and institutional neglect. Fueled by judgmental and homophobic disregard, the early crisis gained strength in the absence of a robust government response. Yet a humanistic virtue will always be at the heart of this drama.

Timeless and poignant, the play's call to action is as relevant now as it was when play debuted in 1985.

Ned Weeks, played by David Cromer, is a confrontational activist in New York, fighting to bring attention to a disease plaguing gay men. He organizes likeminded individuals and creates a grassroots movement that struggles to gain steam in a culture that would rather turn a blind eye.

That's not merely a glimpse at where we were. It's a commentary of where we are today.

Modern medicine has given many affected individuals opportunities to survive and thrive with HIV, where once they faced certain death. Yet the stigma associated with HIV continues to result in delayed or deferred care for hundreds of thousands of Americans with HIV.

The AIDS Foundation of Chicago (AFC) estimates that more than 35,000 people are living with HIV in the Chicago metropolitan area; however, less than half enjoy access to care. Half. That means that less than 50 percent of this population is living with a life-threatening disease. Without interventions, they will remain at risk of serious health decline. What's more, studies indicate that more than 6,000 individuals in metropolitan Chicago don't even know that they are HIV-infected. This group is at high risk for other serious medical conditions and may inadvertently be exposing others to HIV.

The Normal Heart confronts these disparities and it does so with gifted acting and storytelling.

Every character is deeply complex. Even in rehearsals, the acting was so crisp and powerful that I looked beyond the lack of costumes, beyond the missing props, beyond the bare stage, and I returned to the early '80s. I stood with Ned who knelt by his partner's bed in the hospital room. I sat in the grassroots campaign office, as the fledgling organization struggled to get the government's attention. I was there because the characters became real to me.

Yes, I encourage young people to see The Normal Heart for historical reasons. But more than that, this drama is about our time. It's about spurring people into action whether they're gay or straight, government officials or private citizens. Everybody has a role to play in ending this epidemic, and we can only end it if we work together.

AFC is selling tickets to The Normal Heart for two nights: Saturday, November 2 and Sunday, December 1, which is World AIDS Day. Proceeds benefit AFC--but only on these dates and only if you reserve your seat through AFC.

The Mark of a Runner: T2+

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David in Wristband.jpgMy running look used to be complete with sunglasses, shorts, and a TEAM TO END AIDS (T2) singlet--the mark of a training program that fights HIV/AIDS with endurance sports. This year, however, I've expanded my wardrobe.

I now don a lime-green wristband that reads, "T2+," wearing my HIV status on my sleeve, literally. I'm not alone either. Many of my teammates who are also HIV positive wear a T2+ wristband.

It's subtle and most people who see it won't understand the reference, but for me it speaks volumes: Instead of dying from HIV/AIDS, I'm living with it--and living quite well.

Running has been my constant companion, even before my HIV diagnosis in 1994. Back then, my typical run was shorter as my impatience was greater. My exercise routines mimicked the contours of my life. Desperate to seize every fleeting moment, I favored short sprints over long, meandering runs. My attentions raced to make the most of a young, abbreviated life.

My pessimism was justified. An estimated 40,000 people died of AIDS in the U.S. the year I was diagnosed--50,000 the following year. I was 25 years old.

It's hard to remember what it was like to run, or even live, without HIV. I'll never know what difference HIV made in my athletic abilities, recoveries, or injuries; but the changes in my running after antiretroviral therapy were dramatic.

I feared drugs for years because they represented an illness I struggled to accept, delaying my therapy. To swallow a daily reminder of HIV seemed, back then, too much to bear. I expected disappointments, scary side effects, drug resistance. In 1996, scientists lauded multi-drug combination therapy as a major breakthrough, but I remained suspect. I braced for more bad news; I had been let down before.

Getting into a pool meant a sinus infection would surely follow. And running in intrepid weather, rain or cool temperatures was completely out of the question.

By 2004, facing a depleted immune system and sapped energy, I relented. Despite some initial side effects, I adjusted well to therapy. My viral load immediately declined to undetectable levels and my immune-system counts reversed their characteristic decline.

But most remarkably, I became healthier, stronger, more alert, more alive. Before therapy, catching a cold was a monthly occurrence. And colds readily cycled into fever-filled bronchitis or worse.

With therapy, my world changed. I ran my first of many marathons at age 35. I rediscovered running in the leaves of fall and in the deep freeze of winter. Not only did I conquer the pool, I trained for a triathlon in Lake Michigan!

Today, I face the challenges of most 43-year-old marathoners: less flexibility, less resiliency. I sweat excessively and battle frequent cramps, and recovering from long runs is an intentional process. But I love the sport as much as ever and believe that that's what this green wristband is all about: It reminds me that living with HIV/AIDS takes dedication and perseverance, toughness and sweat.

It says quite simply that if you want to beat this disease, if you want to be T2+, you have to be strong.
On Friday, May 31, the Illinois House of Representatives failed to vote on a bill (SB 10) that would have brought marriage equality to the state. The AIDS Foundation of Chicago (AFC) has long advocated for gay rights as a means to destigmatize HIV/AIDS, and in the wake of the House's inaction, David Ernesto Munar, AFC's CEO/President, wrote this editorial.

Reflection on past struggles--and the sage quotes of great leaders--began to soothe my roller-coaster of emotions.

"The arc of the moral universe is long but it bends toward justice."--Dr. Martin Luther King, Jr.

For Illinois' LGBTQ communities, it is devastating to have our dream for full and equal access to legal marriage deferred by a reticent General Assembly. Like it or not, this is the "long arc" of the struggle.

We campaigned for 14 prolonged years before successfully securing an amendment to the state's Human Rights Act banning discrimination based on sexual orientation or gender expression. And just two years ago, our passionate community won the right to form civil unions. On marriage equality, political realities demand we mount an even more tenacious campaign.

We must remain laser focused on a path to victory but already our hurt and anger is turning inward, against our allies and each other, fretfully jeopardizing our unity and effectiveness.

For example, some people are casting blame on the Black and Latino Caucuses for the last-minute erosion of legislative support. As a block, these 30 members wield considerable influence in the 118-member state House, but their districts and views are by no means monolithic. The members include stalwart supporters and detractors of marriage equality. We can win more support among them but only by respecting their diversity of views. Blaming them for the stalled effort might have the opposite effect.

Less talked about, but certainly more significant, is the paltry support afforded the measure by the 47-member GOP caucus (all Caucasian, by the way). Just two Republicans are on record supporting the bill.

No doubt, a legislative setback merits deep evaluation, introspection, and recalibration. Our march toward full and equal marriage will benefit from it but we must resist haste in assigning blame.

"Victory has a thousand fathers, but defeat is an orphan."--John F. Kennedy

Rep. Greg Harris reminded me of this eloquent quote as we lamented the fraying of legislative support for marriage equality as the 2013 Spring Session drew to a close Friday. His decision to postpone the bill's consideration by the full chamber for a day when passage would be assured has caused deep consternation and second-guessing.

Some are blaming him for the stalled campaign for marriage equality. Others question his integrity, leadership and judgment, arguing that a roll-call vote--even on a bill destined to fail--would at least expose our supporters and detractors.

Having worked on legislative affairs for more than 20 years, I am convinced Greg made a heart-wrenching but rational decision. In legislative circles, nothing tarnishes an issue more than a failed vote. Lack of passage on Friday would have certainly ended any prospects of advancing the measure this year but it might have also set back the campaign for years or decades to come.

Once an effort fails on the legislative floor, recovery becomes exponentially more difficult. Lawmakers voting no are reluctant to switch their votes--flip-flopping is political heresy. And supporters resent being made to cast a controversial vote on an effort that guarantees constituents on both sides of the issue will be unsatisfied.

At AIDS Foundation of Chicago, my colleagues, legislative allies and I have worked on many controversial pieces of legislation that required just such calculations. For example, state Rep. Sara Feigenholtz worked tirelessly on sterile syringe access legislation from 1998 to 2003 that inched closer to passage each year. Our field and lobbying campaign and her political acumen (peppered by tenacity and patience) paid off. Though we had aligned the needed votes for passage, nothing was assured until actual votes were cast. We even stationed volunteers at each door as Feigenholtz debated the bill to assure no supporter exited the chamber before casting a vote in favor of the measure.

More than a legislative victory, public health won: By 2008, HIV infections from injection drug use declined by 60 percent.

Earlier this year, two other multi-year efforts finally achieved victory. A coalition of ally organizations prevailed in championing passage of comprehensive sexuality education legislation. And lawmakers finally repealed an antiquated and dangerous measure requiring public health to notify school principals of an HIV-positive student, which can heighten stigma and discrimination and leave the child no better off and often worse.

In legislative advocacy, a coalition can do everything perfectly and still not prevail as witnessed by proponents of pension reform. Many dynamics beyond ones control are at play in marshaling such a diverse and opinionated group of leaders on a single issue.

For our opponents--those who believe in marriage inequality--the sweetest comeuppance will be not only advancing our cause to victory but participating in the democratic process that determines who earns the privilege to represent us in the people's chamber. I am reminded of another emblematic quote about the power of coalition building, unity and organizing:

"Never underestimate the power of a few committed people to change the world. Indeed, it is the only thing that ever has."--Margaret Mead
Read the AIDS Foundation of Chicago'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.
Written by John Peller and David Ernesto Munar

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:

ยง 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.


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