David Ernesto Munar

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:

§ 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.

I had the pleasure of testifying before the Democratic National Committee Platform Committee on Saturday, July 28 in Minneapolis.  I provided testimony as a private citizen and person living with HIV.  My prepared remarks follow below.

Thank you for the opportunity to testify this morning. I am a proud Chicagoan, Colombian‐American, gay man, and since 1994, a person living with HIV. I had the honor to serve as a delegate to our party's nominating conventions in 2004 and 2008.

My entire professional career has been devoted to advancing the fight against AIDS. I currently serve as the President/CEO of the AIDS Foundation of Chicago. I spent this week at the 19th International AIDS Conference in Washington, DC with thousands of scientists, researchers, activists, and officials from around the world taking stock of progress made and milestones yet to be won.

After the week's proceedings, I could not be prouder of our nation and party leadership. This week, we heard unequivocal support from Democratic leaders such as President Bill Clinton, Health and Human Services Secretary Kathleen Sebelius, Secretary of State Hillary Clinton, Leader Nancy Pelosi, Congresswoman Barbara Lee, and other senior officials that pursuit of an AIDS‐free generation is the official policy of the United States government.

President Obama hosted conference organizers and activists on Thursday at the White House. He reiterated his optimism and determination to usher an end to the AIDS crisis.

While we still lack a vaccine and cure, U.S.‐led research has transformed the landscape of HIV/AIDS for those with access to the powerful medications that are literally life extending. With proper adherence, the medications can render an HIV‐positive person virtually un‐infectious. The medications are now even part of our prevention strategies to help HIV‐negative individuals avoid infection. And U.S. led research is rapidly pursuing novel ways to eradicate HIV from those infected and support long‐term resistance or suppression.

I have to admit I was not always optimist. In 1994, the year I was diagnosed with HIV, there were no effective treatments. Approximately 40,000 Americans died of AIDS in 94; 50,000 the following year. I was 25 years old.

Though combination HIV treatment debuted in 1996, I was initially reluctant. I feared the medications would not be effective or that they would result in scarring and stigmatizing side effects. And for years I was not ready to confront, on a daily basis, the realities of living with HIV.  But as time passed, I started to feel the effects of the virus. I grew increasingly susceptible to persistent colds and infections that easily became severe. My energy waned.

I started treatment in 2004 and have maintained an undetectable viral load ever since, which means the virus in my body is maximally suppressed. But equally importantly, my energy and vitality vastly improved.

I'm happy to say that today I'm healthier than ever. Since starting treatment, I've completed 10 marathons and continue training. Such exertion would be unthinkable before. When I was diagnosed, I had not expected to live pass age 35, which I reached and surpassed.

But I'm also very lucky. I'm educated, employed and have health insurance. I've not struggled with homelessness or addiction. I found supportive friends and family and, in my position, have access to a wealth of information. I've not been bullied for being gay or faced life behind bars.  Indeed, I've not faced the barriers my clients at the AIDS Foundation of Chicago must confront every day.

The HIV epidemic in the U.S. disproportionately affects African Americans and Latinos, especially in low‐income and marginalized communities. Gay men of all races/ethnicities remain most affected, followed by African‐American heterosexual women.

Of the estimated 1.2 million Americans living with HIV, less than one‐third are virally suppressed.  Deplorably, less than half of all people diagnosed with HIV receive continuous clinical care and treatments needed to extend their lives and slow transmission. Another 250,000 are estimated to be unaware of their HIV‐positive status. Lacking knowledge of their infection, these individuals risk serious health complications and inadvertent transmission to others. 

This is why the Obama Administration worked closely with experts and advocates to create the first‐ever National HIV/AIDS Strategy. Released in 2010, it is a five‐year roadmap to achieve better results in the AIDS fight in the U.S. It's an incredible plan that unfortunately has made only incremental progress. To achieve the targets in the Obama Administration's National HIV/AIDS Strategy will require substantial new investments, particularly for prevention. 

To help close the HIV treatment gaps, the Affordable Care Act could not be more important. Lack of healthcare access is a fundamental driver of the epidemic and the U.S. must do all it can to help people with HIV/AIDS gain access to high quality healthcare so they can benefit from the full array of state‐of‐the‐art HIV treatments. It's not only humanitarian but also cost‐savings. Every infection averted saves $300,000 in average lifetime healthcare costs.

U.S. leadership on AIDS is not limited to our borders. American generosity has saved millions of lives in the developing world and motivated critically important investments in HIV prevention and care by international donors and affected nations. Our party can be proud of the diplomacy and safety it is securing around the world with the lifesaving activities of the President's Emergency Plan for AIDS Relief and the Global Fund for AIDS, Tuberculosis and Malaria.

In Charlotte, the Democratic Party must stand behind its leaders and back up their soaring rhetoric with firm commitments of action. The DNC platform should unequivocally support science and redouble commitments to domestic and international initiatives to make progress against HIV/AIDS at home and abroad. The platform must also commit to concrete steps to achieve an AIDS‐free generation.

Leader Pelosi said, in closing the international conference yesterday, that the U.S. has a morale imperative to avail HIV healthcare and preventive services for all those who need them. The U.S. has a morale imperative to fight debilitating HIV stigma and discrimination, she said. Today I hope this committee will adopt bold anti‐AIDS positions in its platform to begin to fulfill these and other historic promises.

I respectfully submit the following detailed recommendations for your consideration. Thank you.

With a dizzying array of talks, sessions and activities for 24,000 participants, the 19th International AIDS Conference offered participants new information, analyses and research findings to fortify effective global and domestic responses to the HIV/AIDS epidemic.

Keeping up with it all was downright impossible (though both fun and inspiring to attempt.)

Here are my "ah-ha" moments gleaned from what I could attend of the nearly 500 concurrent sessions and additional cultural activities during the conference. This list is by no means exhaustive or comprehensive:

1.   National HIV/AIDS Strategy - It is still epidemiologically possible to reach the targets of the National HIV/AIDS Strategy by 2015 -- but just barely, said Dr. David Holtgrave of Johns Hopkins University.  In a new research paper, Holtgrave argues that a sizable investment is needed to boost the number of HIV-positive people who are diagnosed and linked to clinical care in order to achieve a 25 percent reduction in annual HIV transmissions. His analysis shows that a $13 billion to $17 billion increase is needed from now until 2015 to reach the Strategy's targets.  While the health reform law is likely to finance the greatest portion of these costs, an estimated $1.2 billion annually (for at least three years) must be raised by public and/or private resources (new or redirected) for HIV prevention services, including testing and prevention-with-positive interventions. With an average lifetime cost of HIV clinical care of $300,000, any increased investment to avert new infections is cost-effective.  The most cost-effective mix of strategies, however, would focus on expanded HIV testing, clinical care linkage and retention, housing and prevention-with-positive services.

Time is of the essence. Federal appropriations for fiscal year 2013 will determine levels of HIV funding for the following two years, Holtgrave said. We need to ramp up investment in HIV services through new or re-programmed monies or we won't make the goals outlined in the National HIV/AIDS Strategy, he said.

In short, greater public/private investment is needed to meet the goals of the National HIV/AIDS Strategy, which of course, will save taxpayer money in the long run.  Unfortunately, the outlook does not look rosy in terms of new investments given the looming cuts and political climate of austerity in the U.S. (more on this further down).

2.   Come Out! - In a rousing plenary address, Phill Wilson of the Black AIDS Institute made a unique call for more effective results in the AIDS fight in the U.S.: He urged HIV-positive people to come out of the closet about their status.

Wilson acknowledged that not everyone can afford to do so nor is everyone emotionally equipped for public disclosure.  However, the more people with HIV are known and recognized as whole human beings, stigmatizing attitudes and beliefs are more likely to diminish.  Given the longstanding need to safeguard HIV confidentiality, Wilson's call was significant and noteworthy. It also reflects my own belief that openness about my HIV-positive status -- wherever feasible -- will empower others in the community. 

3.   HIV in Black Gay/Bi Men: During the conference, an illuminating, if disturbing, study was presented that gives us a deeper understanding of the HIV crisis among African-American gay men and other men who have sex with men (MSM). The study, known as HPTN 061, found that the rate of new HIV transmission among African-American MSM is 50 percent higher than white gay and other MSM. In young black gay and other MSM, the rate was three times the rate for white MSM of the same age. This doesn't mean that black men are engaging in riskier behavior, the study said. In fact, the study found the disparity to be a result of social determinants such community viral load, poverty, education and access to health care.

In other words, we can talk about treatment as prevention as much as we want, but until we address the social roots of the HIV/AIDS epidemic, we will not prevail in this fight.    

4.   Syndemics - At an AFC-sponsored satellite session, Dr. Ron Stall, of University of Pittsburgh presented data showing that multiple epidemics among gay men -- including childhood sexual abuse, homophobic violence and related trauma -- correlate with increased rates of depression, substance use, sexual compulsive behavior and intimate partner violence.  Gay men affected by two or more psychosocial health problems experience statistically significant increases in sexual risk-taking and HIV acquisition.  Conversely, resolving internalized homophobia over time can reduce the number of psychosocial health problems and help individuals' build health- promoting behaviors.  Remarking on the data, Dr. Keith Rawling noted that many of his patients who are now medically stabilized as a result of antiretroviral therapy experience a resurgence of challenges related to childhood trauma that might have been temporarily eclipsed as they prepared to die of HIV/AIDS.  These unresolved issues may also help explain the increased infection among MSM of all ages.

Two members of AFC's Research and Evaluation Data Services team - Tomas Soto and Goldie Komaie - also presented scientific posters on how traumatic events and harassment affect people linking to and staying in care. 

5.   Criminalization - Hundreds of Americans have been arraigned on charges of alleged nondisclosure of HIV status or transmission of HIV and many have served time in jail - most often in cases where HIV was not transmitted. Though laws vary by state, there are currently 33 states that criminalize HIV exposure, according to the Centers for Disease Control and Prevention. Twelve states have HIV statutes that include biting and spitting - even though it has been proven those rude behaviors present no risk in HIV transmission. HIV advocates and legal experts are trying to get these laws off the books, saying they do far more harm than good. The laws deliberately discriminate against a specific group of people, they lead to innocent people serving jail time, and are often based on an outdated understanding of how HIV is transmitted.

Learn more about the national movement to repeal the laws at the Positive Justice Project website. And read up on how the AIDS Foundation of Chicago worked to amend Illinois' HIV criminalization law in the last legislative session.

6.   Blueprint for an AIDS-free generation - In her plenary address, Secretary of State Hillary Clinton reaffirmed the U.S. commitment to achieve an AIDS-free generation, which she characterized as virtually no new mother-to-child HIV transmissions by 2015.  Where they do occur, infants and their family members would have access to high quality care and treatment to better manage the disease.  Clinton committed the Department of State to develop a "roadmap for an AIDS-free generation" by World AIDS Day 2012.  It will further illuminate the measures of success and steps to attain them.  The experience of federal officials leading efforts to draft and implement the National HIV/AIDS Strategy clearly influenced its commitment on a more intentional and targeted blueprint for an AIDS-free generation.  For advocates, such a blueprint is a chance to ensure the government learns from areas where the Strategy has not been as successful as originally hoped.

7.  Hiding within our midst: Researchers from around the world dared to say the "c" word.  Though long forbidden from such meetings, a "cure" has re-emerged as a topic of serious scientific inquiry and debate.  Experts readily admit that the road ahead is difficult.  Nonetheless, new exciting lines of investigation are making it possible to dream of controlling the AIDS crisis at its core.  Virologists are researching two potential paths: eradication strategies (also known as "sterilizing cure") that could safely flush all stains of the virus from a person's body, and a "functional cure" or remission, which would achieve long-term viral suppression.

Confounding the hunt for a cure is HIV's ability to "hide in a resting state, not replicating and therefore impervious to traditional ARVs, in reservoirs such as genitals or gut tissue," POZ.com reports.  These sleeper cells reawaken in the absence of ARV therapy and renew replication, which is why lifetime therapy remains the standard of care.  Investigators are researching ways to make therapy more effective in stopping viral replication, by activating and eliminating these sleeper cells with ARVs, and exploring vaccines or gene-therapy to strengthen the body's immune response to effectively control HIV on its own.    

8.   Ongoing funding challenges: On the policy front, another lurking threat poses grave harm to the global and domestic HIV services infrastructure.   Draconian across-the-board federal funding cuts, known as sequestration, loom on the horizon in 2013 unless Congress takes act to stop them.  In January 2013, tens of billions of dollars in across-the-board federal funding cuts are scheduled to occur as a result of the 10-year deficit reduction agreement President Obama and Congress brokered in 2011.  That law put in place a deficit reduction "supercommittee," empowered to negotiate federal spending reductions in the decade ahead.  The law triggers the "sequestration" or reduction of funds to virtually every branch of the federal government (exempting Social Security and Medicare/Medicaid but not defense) if the committee failed to reach agreement, as it did in November.

Destabilizing cuts to HIV prevention, care, research, housing and other vital domestic and global HIV/AIDS programs will be hard to avoid if federal departments and agencies are forced to relinquish up to 10 percent of their budgets.  Not only are bold plans toward an AIDS-free generation on the line, but other aspirational goals such as full implementation of health care reform, and even nationwide economic stabilization (and recovery to our struggling states and localities), may be jeopardized.  Indeed, many economists warn the nation may spiral back into recession from deep reductions in federal spending coupled by scheduled tax increases and unemployment subsidies due to expire.  This perfect storm is another reminder that the fight against HIV/AIDS occurs in the context of many other societal problems and challenges.        

9.   Required reading and viewing:

-    The Lancet series "HIV in Men Who Have Sex with Men"
-    Science magazine - special HIV issue
-    Plenaries from the conference
-    Extra credit: See a more rigorous daily assessment of conference proceedings by track here. 

On a personal note, the week's events reminded me that the aspiration for an AIDS-free generation is not the same as an HIV-free generation.  While we have sufficient technological know-how to dramatically curb new HIV infections and improve the lives and longevity of those affected, ending the epidemic is a much bolder and more difficult enterprise.  As described above, the research agenda towards a cure is making gains but much work remains to be done.  Maximizing results in the AIDS fight will require tremendous fortitude, leadership and investment.  Of course the rewards -- measured as lives saved, productivity gained and health expenditures averted -- warrant a more robust, dedicated response.   In a world with many competing demands for our time, attention and resources, it will not be an easy sell.  This is why our collective responses must be augmented by well-honed and tested persuasion strategies.  Without broader public support, the needed political and financial leadership is unlikely to materialize.

But not all hope is lost.  The week's events put on display the many brilliant, diverse individuals from an array of disciplines, nations and backgrounds, all dedicated to championing the cause.

In fact, for a weary AIDS activist such as myself, it was downright rejuvenating to be among such an inspirational group of people.  If any group can get the work done, or shake things up trying, it's this motley crew of change agents.

Like tweens at a Justin Bieber concert, scientists wildly cheered new experimental research findings earlier this month in the field of theoretical physics.  The hoopla resulted from observations made possible by the Large Hadron Collider -- the biggest particle accelerator ever built -- of the existence of a long sought subatomic particle known as the Higgs Boson.

Here's a brief summary, if you missed it: Scientists hope the Higgs Boson will help explain the essential characteristics of all matter and energy in the universe.  Scientists have long sought a single unifying model to explain why astronomical observations suggest a mystery energy source is rapidly expanding the universe.  Other measurements suggest the universe comprises heavy matter that nonetheless cannot be observed.  The mysterious forces (known as dark matter and dark energy) amount to 96% of known mass-energy in the universe.

AIDS researchers and activists from around the world are on the hunt for their own Higgs Boson. In fact, 25,000 participants from all corners of the globe assemble in Washington, D.C. this week for the 19th International AIDS Conference to help determine how to turn the tide against one of human history's worst epidemics.

How and why does the HIV/AIDS epidemic expand?  What forces drive the epidemic and can these forces be accurately predicted, measured and reliably interrupted?  What societal characteristics make the epidemic controllable in some settings and populations, and fail to do so in others?

We need a boson of AIDS or its equivalent to make needed progress for public health and humanity.

In my wildest dreams, I image elegant formulas as transformational as Einstein's theory of special relativity that would apply to every HIV/AIDS scenario and predict with astonishing accuracy paths to better outcomes. The magic potion of my dreams might be something like: AIDSFreeGeneration = Human Rights*Universal(EdCareHouse)-poverty + stigma/leadership100.

We already know some of the core ingredients of an effective response.  The Washington, D.C. Declaration -- launched by conference organizers as a grassroots organizing tool to garner greater political and financial commitments -- names nine essential elements of an effective response (see the full declaration at www.2endaids.org):

1.    Increase targeted new investments.
2.    Ensure evidence-based HIV prevention, treatment and care in accord with the human rights of those at greatest risk and in greatest need. No one can be excluded if we are to reach our goal.
3.    End stigma, discrimination, legal sanctions and human rights abuses against people living with HIV and those at risk. Stigma and discrimination hamper all our efforts and prevent delivery of essential services.
4.    Markedly increase HIV testing, counseling and linkages to prevention, care and support services. Every person has a right to know her/his HIV status and get the treatment, care and support they need.
5.    Provide treatment for all pregnant and nursing women living with HIV and end perinatal transmission:  We can support women to stay alive and healthy and to end pediatric HIV infections
6.    Expand access to antiretroviral treatment to all in need. We cannot end AIDS until the promise of universal access is realized.
7.    Identify, diagnose and treat TB. Implement TB prevention programmes through integrated HIV and TB services. No more living with HIV but dying of TB.
8.    Accelerate research on new HIV prevention and treatment tools, including novel approaches such as pre-exposure prophylaxis (PrEP) and microbicides, and on optimal delivery of what we know works, from condoms to treatment as prevention. Expand research for a vaccine and a cure.
9.    Mobilization and meaningful involvement of affected communities must be at the core of collective responses.  The leadership of those directly affected is paramount to an effective HIV/AIDS response.

We know unequivocally that these and other proven-effective strategies make a substantial difference achieving better outcomes in the fight against HIV/AIDS. 

Yet the field still struggles to precisely describe the subtle nuances that make all the difference achieving better outcomes.

We still question what scale, combination, sequence and dose (delivered by whom, in what settings, and with what approaches and supports) are optimal and necessary. How best can we harmonize education for the masses in tandem with targeted efforts for those disproportionately affected?  How do we secure the needed financial and political support to sustain the work that must occur epidemiologically among a minority of the population, particularly among those most vulnerable and isolated?

As quixotic as it may be, the hunt to explain a universal method is inescapable among conference delegates and presenters.   Everyone is engaged in unraveling the riddles to explain why some communities thrive as others flounder in controlling new infections and supporting care access for people with HIV/AIDS.

Maybe passion and commitment are the bosons that power creativity.  Or maybe it's a combination of passion with enlightened governmental leadership, adequate infrastructure and a compassion populace.  

Or maybe it's not simple at all and the AIDS boson includes:  workforce capacity; engaged and educated community stakeholders; a stable national economy; integrity in government; negligible income stratification; strong accountability mechanisms; pioneering academic, media, and cultural institutions; and supportive, non-prudish social and community norms.

We're unlikely to find definitive answers this week but the discourse and advocacy can move us one step closer to celebrating as rambunctiously as those particle physicists.

An AIDS boson? Never say never -- wait, isn't that a Justin Bieber song?

SPRINGFIELD, IL - In a devastating blow to statewide efforts to curb the AIDS epidemic, the Illinois General Assembly enacted a state budget on Thursday, May 31 that slashes funding for community-based HIV prevention, care and housing programs by 42%. 

The funding cuts will take effect with the state budget that begins July 1, 2012. Despite the best efforts of HIV advocates and some legislators, more than 100 additional people are likely to be newly infected with HIV in the coming year because of the funding cuts (a 10% increase in new HIV infections), according to projections by the AIDS Foundation of Chicago (AFC). The lifetime medical costs for those individuals will exceed $40 million, a financial burden that casts a pall on the few bright spot of the past legislative session, said David Ernesto Munar, AFC President/CEO.

"The General Assembly set back the progress against AIDS by a decade," Munar said.  "Just when we are starting to see new HIV cases decline, Illinois has turned its back on people with HIV and people at risk of HIV."

"If the state wants to save money," continued Munar, "cutting HIV services is the absolutely worst strategy. HIV funding cuts are a bad deal for the taxpayers of Illinois and a tragedy for people who will have to live with a still-deadly infectious disease that could have been prevented."

If not for last-minutes efforts by supportive legislators, the cuts could have been much worse.  Late on May 30, the House Human Services Appropriations Committee, led by State Rep. Sara Feigenholtz (D-Chicago), restored $623,000, reducing the HIV funding cuts to $3.3 million. 

"We are thankful that Rep. Feigenholtz and members of the committee were able to partially restore some HIV funding," said Ramon Gardenhire, AFC's Director of Government Relations. 

Gardenhire also applauded the leadership of State Rep. Rita Mayfield (D-Waukegan), who spearheaded efforts by the Black Caucus to reject cuts to HIV programs.

"African Americans will be disproportionately affected by these cuts," he said.

Gov. Pat Quinn proposed a $4 million reduction in HIV funding when he released his budget proposal in February.  Since then, AFC has led vigorous community advocacy to reverse the proposed cuts.

"We applaud everyone who answered the call and who pushed back against these devastating cuts, by sending emails, visiting legislators in person, and signing petitions," Gardenhire noted. "However to see a budget that reflects the needs of most Illinoisans, we need the entire community to stand up and push back against these harmful cuts in the future."

Advocacy efforts saw mixed results. The Illinois Senate rejected the Governor's proposed cut and funded HIV services at 2012 levels, thanks to leadership from State Sen. Heather Steans (D-Chicago), who chairs the Senate Appropriations Committee.  However, the Senate-passed budget was dead on arrival in the opposite chamber. 

In a significant bright note for HIV funding, the General Assembly approved legislation that would allow Cook County to implement a proposed Medicaid 1115 waiver.  The waiver would expand Medicaid coverage to at least 100,000 low-income, uninsured Cook County residents, including people with HIV.

"If the federal government approves the waiver, over 1,000 people with HIV will gain Medicaid coverage and won't need state assistance to obtain HIV medications," said John Peller, Vice President of Policy. "This savings must be directed to community-based HIV prevention, care and housing programs." 

"Rep. Feigenholtz established a special account in the state treasury to protect savings from the waiver and preserve it for HIV prevention programs," Peller continued.  "We don't yet know how quickly the savings will materialize, and the General Assembly will have to pass legislation to redirect the savings.  We will work vigorously to make sure money is directed to AIDS-affected communities as quickly as possible." 

However, in an attempt to force the House to raise funding levels, the Senate late on May 31 refused to approve the bill that included the special waiver savings account. This must-pass legislation includes provisions needed to implement the budget.  The Senate's move pushes the General Assembly into overtime, when a bipartisan super-majority is required to advance legislation. Around the Capitol, lawmakers and state workers remained unclear how the standoff will be resolved.  

The General Assembly could have avoided HIV funding cuts by reducing corporate tax loopholes and taking other steps to increase revenue, but failed to act, Munar said. 

"At a time when Medicaid, healthcare programs and HIV services are being dramatically reduced, the General Assembly made sweetheart deals to Fortune 500 companies in the form of sizeable tax breaks.  It's a shameful reality and sign of misplaced priorities," Munar said.

To learn more about the state budget and Medicaid changes and how it will impact you and AIDS organizations, click here to register for our End of Session webinar on Friday, June 8th at 12:00 pm with Rep. Greg Harris (D-Chicago) and Ann Fisher, Executive Director, AIDS Legal Council of Chicago. 

In an effort to rein in spending, Illinois Governor Pat Quinn has proposed a number of changes to the state's Medicaid health care safety net for the poor. While we recognize the need to find efficiencies in the Medicaid system, the proposal under consideration to limit access to life-saving HIV medications would jeopardize the lives of HIV patients, exacerbate the spread of the disease, put additional burdens on medical professionals who provide care for people living with HIV and cost the state far more money than it saves.

Last year marked the 30th anniversary of the first reported case of AIDS. One thing we have learned over the years in the fight against HIV/AIDS is the importance of a patient thoroughly adhering to a treatment regimen prescribed by their doctor. Any lapses in treatment significantly lower the likelihood of success. More importantly, we know that lapses dramatically increase the likelihood of transmission of HIV from one person to another.

Less than half of Illinoisans living with HIV receive continuous medical care and treatment to prolong their lives and help curb new infections. I am one of the fortunate HIV patients who is benefitting from treatment and from a productive relationship with my physician since my diagnosis 17 years ago.

The governor's proposed cuts to Medicaid will adversely impact the nearly 12,000 people living with HIV/AIDS in our state who are insured through Medicaid. His administration has proposed what's called a "prior authorization" process for obtaining life-saving HIV medicines. As a result, it will be more difficult for patients to obtain the therapies needed to treat and halt the spread of HIV.

The idea of placing barriers to care for HIV medicines every time Medicaid patients fill their prescriptions is absurd. This barrier would, by design, push many of today's patients, as well as future patients away from the care they need. Strict adherence to therapy is so important because it permits the drugs to work effectively enough to reduce the amount of HIV in the body (the so-called "viral load"). If a patient skips taking the medications -- even occasionally -- it gives HIV the chance to multiply rapidly.

Missing doses also makes it easier for HIV to develop resistance to the drugs in a person's current regimen and to other, similar drugs not yet taken. Such resistance dramatically limits the number of HIV treatment options. And these drug-resistant strains of HIV can be transmitted to others, reducing their treatment options as well.

Penny Wise. Pound Foolish.

Prior authorization for HIV medications is a poor method to reduce healthcare costs. The long term costs of preventable emergency room visits and hospitalizations will be substantially more expensive.

In HIV, high costs are driven by delayed testing, delayed treatment and poor treatment adherence -- exacerbated by HIV stigma, poverty and other socioeconomic challenges including mental illness, substance abuse and homelessness. It's the 50 percent not in care who consume the highest cost services because their HIV is not well managed.

Mandatory prior authorization only exacerbates this problem. It creates a barrier for patients in care without addressing the real source of unmanaged healthcare costs. The proposed Medicaid cuts coupled with the proposal to cut $4 million in state HIV funding are signs this Administration is giving up the fight against AIDS.

Gov. Quinn may want to listen to another famous Illinoisan, Sec. of State Hillary Clinton. In a speech late last year, Sec. Clinton noted "We now know if you treat a person living with HIV effectively, you reduce the risk of transmission to a partner by 96 percent... An AIDS-free generation would be one of the greatest gifts the United States could give to our collective future."

Perhaps the Quinn administration is unaware that when it comes to treating HIV, spending less in the short run leads to spending much more in the long run. In the treatment of HIV delayed testing, delayed treatment, and poor treatment adherence drive high costs. The proposed Medicaid changes will be a signal this administration is retreating in the fight AIDS.

For the thousands of people living with HIV/AIDS in Illinois who rely on Medicaid, let's hope Gov. Quinn reconsiders.