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