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Centering Race Equity in Vaccine Distribution & Health Care Affordability in Illinois

*This is the second blog in a series about the Illinois Healthcare Affordability and Feasibility Study mandated by the Illinois Healthcare Affordability Act. The first blog post can be found here. 

The disproportional impact of COVID-19 on people of color, especially Black and Latinx people in Illinois, highlights the systemic racism embedded in our health care system. Protect Our Care Illinois is dedicated to ensuring quality, affordable, and equitable health care for all Illinoisans regardless of race or immigration status. To achieve this vision, Protect Our Care Illinois demands equitable distribution of and access to the COVID-19 vaccine, as this is a key step in combatting the disastrous effects of the pandemic on our communities. 

Governor Pritzker and the Illinois Department of Public Health (IDPH) have worked diligently to prepare a vaccine distribution plan that prioritizes administering the limited supply of vaccine doses to the most at-risk populations first, including senior citizens and health care workers. However, the plan falls short in addressing how the state will ensure equitable access to people of color, especially Black and Latinx communities, and this must be improved immediately.  

If the differing rates of flu vaccinations among different races are any indicator, Black and Latinx people are less likely to receive a COVID-19 vaccine if offered. Why? Many reasons exist, but an unresolved history of both structural and sometimes interpersonal harm towards Black and Latinx communities perpetrated by the government and health care institutions has resulted in widespread distrust of the health care system. For example, 70% of Black people in a survey said they think the health care system treats people unfairly based on their race or ethnic background, compared to about 40% of white and Latinx people. Additionally, Black, Indigenous and People of Color are more likely to experience access related challenges such as geographic barriers, lack of transportation, or language barriers. A recent survey shows 53% of white people are willing to take the vaccine, compared to only 24% of Black people and 34% of Latinx people. As of mid-January 2021, data regarding the demographics of those who have received at least one dose of the COVID-19 vaccine has not been released yet. 

The Governor’s office and IDPH must address the above concerns. Protect Our Care Illinois recommends the following: 

  • Implementing a communication plan to address vaccine hesitancy and medical mistrust among Black, Indigenous and people of color;  
  • Distributing vaccines based on zip code, as opposed to being based solely on the county or city level, to ensure that communities that have been segregated within cities and counties are able to access vaccines equitably; 
  • Creating mobile or pop-up locations to deliver COVID-19 vaccinations in those zip codes that have insufficient access to hospitals, pharmacies, medical centers, or clinic spaces;  
  • Requiring employers to provide paid time-off to receive the vaccine and recover from side-effects if necessary; 
  • Providing widespread information about how to access the vaccine for free; and  
  • Continuing to update the IDPH COVID-19 Vaccine Administration Data website with the most current, transparent, and detailed data, including, if possible, demographic information such as zip code, race, sexual orientation, gender identity and disability status of the population vaccinated. 

Ensuring equitable access to the vaccine is the first step in the long road to affordable and accessible care for all in Illinois. The Affordability and Feasibility Study currently being conducted by the Department of Health and Family Services (HFS) and the Department of Insurance (DOI) will provide Illinois legislators and administrators with ideas about how to lower health care costs. HFS and DOI agreed to conduct the study with a racial equity lens, centering the questions asked and recommendations provided in terms of the effect on people of color, especially Black people in Illinois. A group of consumers provided recommendations to HFS that included specific ideas to address both interpersonal and systemic racism in health care, such as:  

  • Providers who look like their patients;
  • Care that is geographically close to patients; 
  • Providers listening to patients, treating patients as the experts of their bodies; 
  • Translators available for multiple languages, including American Sign Language;
  • Protecting personal information and understanding that certain groups of people (for example, undocumented immigrants) may be hesitant to provide personal data; and 
  • Better understanding of provider networks and the health services covered by plans 

Protect Our Care Illinois is pleased that HFS and DOI are considering race equity in the affordability study and we will monitor the release and implementation of the study’s recommendations to ensure racial equity is promoted. Additionally, Protect Our Care Illinois thanks the Governor’s office and the IDPH for its willingness to receive recommendations on how to best distribute the COVID-19 vaccine, and centering race equity throughout the distribution process. Now is the time to act on the ideas suggested.  

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Protect Our Care Illinois Reflects on the Trump Administration

Four years ago, the future of health care access in the United States was in extreme peril. The incoming Trump administration’s harmful and pervasive anti-health care rhetoric put the future of the Affordable Care Act – and the health care of millions of Americans – in jeopardy, with no clear plan to help those who may lose access to coverage as a result of its dismantling.

In an attempt to combat the misinformation being spouted by the Trump administration about the Affordable Care Act and to hold elected officials accountable, more than 50 organizations united to form Protect Our Care Illinois, including lead agencies Access Living, ACLU of Illinois, AIDS Foundation Chicago, Chicago Coalition for the Homeless, EverThrive Illinois, Health & Medicine Policy Research Group, Heartland Alliance, Illinois Coalition for Immigrant and Refugee Rights, Legal Council for Health Justice, SEIU Healthcare Illinois Indiana, the Shriver Center on Poverty Law, and Thresholds.

As the Trump administration sunsets and the incoming Biden administration rises to take its place, we hold fast to the hope that many of the wrongs and harms perpetrated against millions of our neighbors – especially those in low-income, immigrant, and LGBTQ+ communities – will be rectified in the coming weeks, months and years.

Protect Our Care Illinois is dedicated to seeing this work and healing through, just as we were four years ago. We invite you to join us on the journey to ensure every Illinoisan has access to quality, affordable, and equitable health care coverage.

Health Care Affordability Study: Why Illinois is Exploring More Coverage Options

Given the landscape of health insurance and health care costs in Illinois, the Health Care Affordability Act, effective July 7, 2020, mandated that the Illinois Department of Health and Family Services (HFS) and the Department of Insurance (DOI) conduct a Healthcare Affordability Feasibility Study. This study will research how the state can make insurance more affordable and accessible in Illinois by researching what other states do and considering options based on Illinois-specific data. The study will provide a report with an array of options to the Illinois General Assembly and the Governor by February 28, 2021, which can be used by legislators to guide decision-making regarding insurance policies in Illinois. 

Affordable and accessible health care has been a priority for Illinoisans for decades. Even with the financial assistance provided by the Affordable Care Act, premiums, deductibles and cost-sharing are still too high for many families. A recent survey reveals that uninsured Illinoisans cite high costs as the main reason for not having insurance. The burden of cost affects families of all income levels, but especially those with incomes below 200% of the federal poverty line. In fact, nearly 15% of people with incomes below 200% of the federal poverty line are uninsured in Illinois. Even for those with insurance, the cost of health care remains prohibitive for many people. In a 2020 survey of Illinoisans, 49% of respondents reported delaying going to the doctor, skipping the dentist, or choosing to not fill a needed prescription to help curb out of pocket costs. Additionally, the COVID-19 pandemic has resulted in the largest loss of employer-sponsored health insurance in American history. 186,000 workers in Illinois lost their insurance coverage when they lost their jobs in Spring 2020. 

Despite the advances in insurance coverage for many people as a result of the Affordable Care Act, problems persist in Illinois, including prohibitively high costs, insurance and service provider systems that are often narrow, confusing, and time-consuming to navigate, and increasing rates of uninsured children. Additionally, clear disparities exist in insurance coverage. In 2018, 5.8% of white people were uninsured, compared to 6.9% of Asian people, 8.3% Black people, 12.5 % of American Indian and Alaskan Native people, 13.5% of Native Hawaiian and Pacific Islander people, and 15.4% of Hispanic people. Immigrant communities often face an additional burden of lack of citizenship status as a barrier to accessing coverage. In 2018, 23% of documented immigrants and 45% of undocumented immigrants reported being uninsured, compared to 9% of U.S. citizens. Disparities also exist for people with disabilities, who are 4 times more likely to report their health to be fair or poor than people with no disabilities (40.3% vs 9.9%). Additionally, LGBTQQIA+ people are disproportionately affected but more research is needed to understand the gaps in coverage. Studies show that more LGB people became insured as a result of the ACA, but in 2016 about 10% of LGB people were still uninsured. Disparities persist for the transgender population as well. Transgender people are more likely to be uninsured than the general population, and more likely to have trouble using their insurance to access care

The Affordability Study provides a chance to learn about potential solutions. Member Organizations of Protect Our Care Illinois provided feedback to HFS and DOI about the study, both in the form of submitting written recommended guiding principles, as well as through hosting two listening sessions between community members and HFS and DOI. The feedback from participants of the listening sessions made it clear: dental and vision care should be included in any health care plan, the cost of prescription drugs are too high, provider networks for Medicaid are too small, and barriers to full coverage for immigrant communities are insurmountable. We need solutions. Meaningful access to comprehensive health care is paramount for Illinoisans across the state. Protect Our Care Illinois believes that everyone deserves access to equitable, affordable, comprehensive healthcare no matter their race, ethnicity, gender identity, sexual orientation, income, ability, or immigration status. We also believe that health care coverage is a right – not a privilege – and will continue to push for new health care policies that move the state toward universal coverage.  We look forward to the results of the Affordability Study which will add to the conversation about health care in Illinois and lead us towards more affordable and accessible care.

To join us in this fight, sign up to receive our newsletter or consider joining the coalition. Stay tuned for more blogs related to the Affordability Study in the coming weeks!

Protect Our Care Illinois Condemns the Trump Administration’s Latest Attempt to Undermine Health Care Access for 70 Million Americans

For four years, the Trump administration has worked to undermine the health and well being of millions of Americans via harmful attacks on Medicaid and the Affordable Care Act (ACA). With less than 65 days left in office, the current administration has continued its unprecedented assault on health care by issuing an interim final rule that permits states to make Medicaid budget cuts without losing enhanced federal funding. In essence, this rule enables state legislatures and Medicaid agencies to reduce or eliminate optional benefits (such as oral health care, substance use treatment, etc.), increase cost-sharing and premiums, and reduce benefit packages.

At a time where states across the country are experiencing dangerous surges in COVID-19 cases, we need increased access to comprehensive coverage, not less. This is simply another attempt of the current federal Administration to kick the can down the road and skirt their responsibilities to serve the dire needs of the American public. Their apathetic attempt to “support” state budgets through slashing health care is not only misguided, but ineffectual. Less coverage drives higher costs in emergency room visits, and increases uncompensated care leaving hospitals and taxpayers holding the bill. 

While Protect Our Care Illinois does not anticipate Illinois partaking in this abhorrent rule, we wholeheartedly and unequivocally denounce this guidance, which has the potential to jeopardize the health care of more than 70 million Americans. We also call upon our state elected leaders, including Governor Pritzker, to firmly and quickly denounce this latest attempt to undermine access to health care in the midst of a global pandemic, and demand the federal administration provide additional supports to states including increasing Medicaid federal match funds (FMAP) to 14 percent.

Although the interim final rule is effective immediately, public comments are being accepted through January 4, 2021. Protect Our Care Illinois encourages all Medicaid stakeholders to submit formal comments urging the Centers for Medicare and Medicaid Services (CMS) to rescind this harmful guidance and ensure all Medicaid coverage remains stable for all enrollees.

Biden / Harris Administration Signals Hope for Expanded Health Care Access, ACA Still in Jeopardy

With the election results finally declared official, we move from the unknown and onto what’s next. However, this is a bittersweet moment as the past days, weeks, and months have shined a bright light on the true character of our nation — one steeped in injustice and inequity, where racism, xenophobia, sexism, classism, and homophobia remain as cornerstones across states, systems, and beliefs. Nevertheless, we pick up the mantle and continue the relentless pursuit of just and equitable access to health care for all. 

Protect Our Care Illinois looks forward to the implementation of the Biden/Harris administration’s plans to expand access to quality, affordable health care to all Americans regardless of their race, immigration status, sexual orientation, or socioeconomic level. We will fight to expand, preserve, and reestablish protections for LGBTQ+ communities, low-income populations, and immigrants who have been abused and ignored for the past four years.

However, in spite of the incoming administration’s demonstrated commitment to health care expansion, the Affordable Care Act (ACA) is still in jeopardy. In fact, the closeness of the election signals that not every American is driven by the values of racial equity, health equity, and justice for all.

While our nation has historically struggled to provide affordable and equitable health care, since it was signed into law in 2010, the ACA has been under attack. Protect Our Care Illinois will be focusing our efforts on the United States Supreme Court (SCOTUS)’s November 10 oral arguments hearing in the Health Care Repeal lawsuit (California v. Texas), the culmination of a series of baseless attacks on people’s health care access that questions the constitutionality of the ACA. 

In the decade since its inception, the ACA has ensured access to health care for more than 22 million Americans, lowering the uninsured rate of both children and adults. Currently, almost one million Illinoisans receive coverage through the ACA (approximately 630,000 through the Medicaid expansion and nearly 300,000 through the Marketplace). Furthermore, the ACA has expanded access to preventive care and family planning services; established essential protections for Americans living with pre-existing conditions (including over 5.4 million in Illinois), and codified anti-discrimination laws protecting individuals’ rights to high quality accessible health care. 

Should the ACA be struck down, nearly 20 million Americans would be at risk of losing their health care coverage. The health care coverage losses would hit people of color especially hard, right as they are also having to face job losses due to the pandemic. The uninsured rate for Black people would dramatically increase and adults without a college degree could face major coverage losses, particularly those who are people of color.

To be clear, further expansion of health insurance is needed to achieve universal coverage. There were approximately 30 million people uninsured in 2019, and millions more lost their insurance coverage in the economic devastation resulting from the COVID-19 pandemic. Approximately 900,000 Illinoisans were uninsured before COVID-19 and that number has climbed in the economic fallout. Denial of health coverage is an unacceptable, deadly health injustice. The incoming Biden Administration should work ambitiously with Congress to reach health insurance coverage for all such that health care is guaranteed as a human right.

While more is needed to ensure all Americans have meaningful access to equitable health care, the ACA has made significant progress on reducing health care inequities. Protect Our Care Illinois refuses to allow ANY reversal of the progress made on health insurance coverage and will continue to demand health care for all. We invite you to join us in the fight to protect our care. To join Protect Our Care, contact info@protectourcareil.org.

Rushing Through SCOTUS Confirmation Risks the Health of Over 20 Million Americans

On November 10, 2020, the United States Supreme Court (SCOTUS) will hear oral arguments in the Health Care Repeal lawsuit (California v. Texas), a baseless attack on people’s health care access that questions the constitutionality of the Affordable Care Act (ACA). 

The late Justice Ruth Bader Ginsburg was expected to use her vote in defense of the ACA. However, in light of her passing and the impending confirmation of Judge Amy Coney Barrett, a well-known opponent of the ACA, Protect Our Care Illinois is gravely concerned for the future of the landmark legislation, which protects the health of millions of Americans, including those with pre-existing conditions. The stakes in Illinois could not be greater: patient protections, the Medicaid Expansion, subsidies that help working families, and federal funding are all on the line.

Before joining the 7th U.S. Circuit Court of Appeals, Judge Coney Barrett:

  • Criticized SCOTUS’ 2012 ruling in favor of upholding the ACA’s individual mandate tax;
  • Condemned Chief Justice Roberts’s use of his vote to uphold the ACA; and 
  • Praised the late Justice Scalia’s dissenting opinion in King v. Burwell, a case in which SCOTUS deemed the ACA’s subsidies constitutional

In addition, Judge Coney Barrett is a staunch opponent of reproductive rights, does not believe in climate change and its impacts on health, and will not commit to a peaceful transfer of power

Protect Our Care Illinois stands in strong opposition to the confirmation of Amy Coney Barrett.  We demand that no Supreme Court Justice confirmation occur before inauguration. It’s up to the people to decide. 

Join our efforts to save the ACA! Below are some ways that you can engage in this fight to protect people’s health care!

  • Ensure you’re making your voice heard by voting in the 2020 election and consider the future of health and health care of all Americans.
  • We encourage everyone who has been impacted by the ACA to share their story via social media using #SaveOurHealthcare and #ProtectILCare
  • Thank our elected officials for their tireless defense of the ACA, including: Illinois Attorney General Kwame Raoul (@KwameRaoul); Senator Dick Durbin (@SenatorDurbin); and Senator Tammy Duckworth (@TammyforIL).

Join Protect Our Care Illinois’ ongoing efforts to defend the Affordable Care Act by contacting info@protectourcareil.org.

The Legacy of Justice Ginsburg and Why We Must Protect the ACA.

Protect Our Care Illinois joins the millions of health care advocates mourning the recent loss of U.S. Supreme Court Justice Ruth Bader Ginsburg. In addition to being a champion for women, LGBTQ+ communities, and immigrants, Justice Ginsburg was a monumental figure in the fight for equitable, affordable health care coverage for all. 

As we look back on the legacy of Justice Ginsburg, we also look to the future. The Supreme Court will review the constitutionality of the Affordable Care Act (ACA) this November in the Health Care Repeal lawsuit (California v. Texas). Justice Ginsburg was anticipated to use her vote in defense of the ACA; now Protect Our Care Illinois joins health care justice advocates around the country to sound the alarm about what her vacancy means for the future of the ACA. In the midst of an increasingly severe public health crisis and the biggest economic downturn in recent history, the stakes could not be higher.

Since the passage of the ACA, over 20 million individuals, children, and families have gained access to comprehensive health care. In addition, the law has led to historic reductions in racial inequities in access to health care. Between 2013 and 2018, the uninsured gap between Black and white people closed by 4.1 percentage points and 9.4 percentage points between Latinx and white people. Both historical and contemporary U.S. policies, including welfare policy, disproportionately harm Black, Indigenous, and other people of color, as well as immigrants. The lack of universal health insurance coverage is very much a part of the racism and xenophobia expressed through policy [1], [2].

The law also pioneered meaningful access to health coverage including ensuring coverage for 135 million Americans with pre-existing conditions; the expansion of Medicaid eligibility for adults with low-incomes; required coverage of preventive services with no cost-sharing in private insurance, Medicare, and for those enrolled in the Medicaid expansion; and allowed young adults 26 and younger to remain covered by their parent’s health plan. The ACA also took radical steps to protect and expand the health rights of women, HIV/AIDS, and LQBTQ+ communities. Simply put, the law significantly moved the needle on accessible and equitable health care.

If the ACA is overturned over 800,000 Illinoisans could lose coverage, with over 600,000 adults losing coverage gained through Medicaid expansion, alone. Across the state, over 5.4 million people with pre-existing conditions could lose guaranteed coverage – including anyone who has tested positive and/or has been treated for COVID-19. Health plans could once again start imposing limits on lifetime coverage, routinely charging women and older adults more for care, and lift caps on out of pocket costs to consumers. 

While more is needed to reach equitable health care for all, the ACA made significant progress on reducing health care disparities. Protect Our Care Illinois refuses to allow the reversal of this progress. As health justice advocates we will continue to educate and activate our communities in opposition to the Health Care Repeal Lawsuit. 

Join our efforts to save the ACA! Below are some ways that you can engage in this fight to protect people’s health care!

  • We encourage everyone who has been impacted by the ACA to share their story via social media using #SaveOurHealthcare and #ProtectILCare
  • Thank our elected officials for their tireless defense of the ACA, including: Illinois Attorney General Kwame Raoul (@KwameRaoul); Senator Dick Durbin (@SenatorDurbin); and Senator Tammy Duckworth (@TammyforIL).
  • Join Protect Our Care Illinois’ ongoing efforts to defend the Affordable Care Act by contacting info@protectourcareil.org.

[1]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4306458/

[2]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863357/

Action Alert: Demand Congress Supports Medicaid

In Illinois, over 204,000 essential and front-line workers are enrolled in Medicaid. Medicaid is a lifeline for millions of people, especially as COVID-19 case counts spike and unemployment continues to plague our communities – especially our BIPOC communities as they face astoundingly higher death and infection rates and job losses than white people.

CALL YOUR SENATORS TODAY at (202) 224-3121 to demand Congress supports Medicaid by:

  • Increasing federal Medicaid funding by 14 percent, including funding for Medicaid expansion populations; 
  • Continuing the Maintenance of Effort (MOE) to prevent people from getting kicked off of Medicaid during the public health emergency; and 
  • Opposing any efforts by the Administration to undermine Medicaid, especially the implementation of the harmful Medicaid Fiscal Accountability Rule (MFAR).

As the Senate continues to negotiate the latest COVID-19 relief package, Illinois’ ability to ensure access to health coverage for low income individuals, children, and families hangs in the balance. 

Congress MUST increase federal funding for Medicaid to protect families’ health and financial well being, while continuing the Maintenance of Effort (MOE) established in the Families First Coronavirus Response Act (FFCRA) to protect those enrolled in Medicaid from losing their coverage during a public health crisis. 

Protect Our Care Illinois Condemns the Trump Administration and its Allies in State Government Still Pursuing Their Health Care Repeal Lawsuit in the Midst of a Pandemic

Today, the House of Representatives will vote on the Patient Protection and Affordable Care Advancement Act. Also referred to as the ACA 2.0, the bill aims to strengthen the current law through provisions such as making coverage more affordable; investing in consumer outreach, education and enrollment; creating incentives to expand Medicaid for the 14 states who have yet to do so; expanding Medicaid postpartum coverage to 12 months; negotiating lower prescription drug prices and restoring Medicaid coverage for select migrant individuals lawfully residing in the United States.

This bill serves as a promising starting point to shore up the ACA and meaningfully strengthen and increase access to comprehensive affordable health care during a global health crisis. It also is a stark reminder that the current administration is actively trying to do the exact opposite by consistently undermining existing protections and advances in ensuring Americans have health care. 

ACA 2.0 was introduced at nearly the same time opponents of the ACA filed briefings with the U.S. Supreme Court (SCOTUS) in their ongoing attempt to repeal the law and strip care from over 23 million individuals and families, which is even more dangerous now that we are in the midst of a pandemic and economic crisis. It also comes on the heels of the U.S. Department of Health and Human Services (HHS) releasing their final rule amending the civil rights provision of the Affordable Care Act (Section 1557), effectively rolling back federal protection from discrimination against the LGBTQ+ community, individuals living with HIV, non-English speakers, and women. 

Protect Our Care Illinois remains disappointed, sickened, and repulsed by this administration’s incessant attempts to decimate the health of our communities, particularly Black and Brown communities. This is even more concerning in the midst of the COVID-19 pandemic, which has disproportionately impacted Black and Brown communities. Instead of pursuing a lawsuit designed to take health care away from people who need it, the Administration should be, at the very least, opening ACA Marketplaces so people can enroll in coverage today.

We will continue to defend the ACA and commit to work that increases truly equitable access to care and comprehensive services for every single Illinoisan.

Statement: racial justice is health justice

This past weekend, the long-standing reality of deep oppression and injustice for Black communities has become front and center on the national stage. Protect Our Care Illinois stands with Black communities across the state, and lifts their efforts to demand justice so they are afforded the basic rights of existing without fear and obtaining equitable access to high quality services that ensure basic needs are met – including health care, nutrition, and housing. 

It is impossible to parse out structural racism and systemic injustice from health outcomes for Black communities. In Illinois, Black individuals account for 43% of COVID-19 related deaths while making up only 15% of the state’s population.  Also, the same broad-sweeping structural racism that enables police brutality against Black Americans is also responsible for higher mortality among Black Americans with COVID-19.

We also must acknowledge the white supremacy in our culture, and the exhaustion and despair that our Black colleagues who are doing this work alongside of us feel. This weekend, like much of history, we have seen continued complacency focused on detracting from the realities of brutality against Black and Brown communities by way of shifting the narrative to cover property over people, doubling down on subversive messages like all lives matter, and designating labels like “thugs” to incite racist perceptions that diminish the extraordinary pain and suffering plaguing our Black neighbors working to lift their voices so that maybe this once, they will actually be listened to. 

We join the Opportunity Agenda for #JusticeOutLoud and call for leadership and justice from district attorneys, police chiefs, and all people with power or position to say enough is enough. It is time to address once and for all the white supremacist violence proliferating in America.We cannot be quiet or passive in this moment of anger and disbelief –  remaining silent is an act of compliance in the face of grave injustice.

While we continue to navigate both the pandemic and demands for justice, we must declare beyond the shadow of a doubt,  that racial justice is health justice. We cannot call for one without demanding the other. Protect Our Care Illinois wholeheartedly and unequivocally stands with our Black neighbors and communities in pursuit of a just and equitable society. In our fight for equitable access to health care for all Illinoisans, we implore our local and state leaders to acknowledge that police brutality is a public health crisis. Our leaders must take immediate and decisive action for just reform so that our Black and Brown neighbors are afforded not only the basic right to live without fear of brutality, but so our state systems are equipped with the voices, knowledge, and tools to aggressively weed out injustice and inequity.