By Indigo Quashie

Caprice Carthans is a member of AIDS Foundation of Chicago’s Board of Directors and Community Advisory Board (CAB) and fierce advocate for competent transgender health care across the city. As a Black transgender woman herself, Caprice centers her advocacy work around supporting, inspiring, and protecting her communities and the physical spaces they inhabit. The CAB is a group of eight advocates, healthcare workers, community leaders and more who get together to discuss ways in which AFC’s supportive services, such as case management, can be improved from the lenses of those receiving these services. However, to Caprice, the term “community” rather than “consumer” is more appropriate as it recognizes individuals as people instead of company targets. An organization or health care center implementing practices and spaces like the CAB, which prioritize the communities they are helping, truly allows people seeking care to feel like their voice is heard.

Within LGBTQ+ communities, and especially transgender individuals, it is common for the lack of confidence and security in one’s voice to begin in the household. For example, in many traditional Black families, transgender youth run the risk of being rejected by parents due to personal beliefs, stigma, or lack of education about their experience. Fortunately, Caprice had a supportive mother who not only recognized, but prioritized her identity as early as age four by buying her dolls for Christmas. When she officially came out at 13, Caprice’s mother shared that while she may have lost a son, she gained a wonderful daughter in return. This is a sentiment that Caprice holds dearly and uses to create an empathetic and supportive environment for the younger generations in her family.

When a person grows up without being surrounded by a supportive community, it can be a major challenge to advocate for their needs when seeking health care. And this desire is only stifled more when health care centers are not adequately trained to provide resources to transgender individuals. Caprice currently hosts 101 trainings with health care centers around the city around competent transgender care. From her observations, she explained that some providers tend to fall flat in three areas:

1. Outright refusing to provide care due to a patient’s lack of resources rather than supporting them in accessing said resources;
2. Staff holding their own prejudices against transgender identities, primarily due to stagnant religious beliefs and lack of education; and
3. Care practices being developed around old data instead of learning from the reality that transgender individuals are living on a day-to-day basis. 

“When we get an invitation to the table, even just to have the conversation, we have a responsibility to educate them about what the reality is. A lot of them folks look at data that’s two and three-years-old. I live in the real world, so what you see on paper don’t actually exist on my side of town. We don’t talk like that, and we don’t act like that. We don’t do that. Don’t try to shape me into something just so you can flow with what you got on paper!”

While looking at data is useful when comparing long-term trends and practices, balancing that with being receptive of current transgender experiences is important for health care centers to create a foundation of trust, vulnerability, and transparency with their patients. The constant battle with stigma, miseducation, and even physical safety should not enter the doors of a space where one is seeking support for their livelihood.

“Folks have been harmed for so long by systems in place, so how do we heal? Public health is about healthy living. Quality care of living, publicly. That’s an inclusive piece where we shouldn’t discriminate on people’s resources. Prejudice is a taught behavior, but breaking stigma is also a taught behavior. Healthcare work is about healing. It’s mental, emotional, and it’s psychological.”

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By Indigo Quashie

Dominique Hayes is the Lead Care Coordination Specialist (CCS) at AIDS Foundation of Chicago (AFC). She began her work in the field as an intern with Pediatric AIDS Chicago Prevention Initiative (PACPI). Now rebranded as the Mother and Child Alliance (MACA), this initiative provides prenatal and postpartum comprehensive services to pregnant women and their families. Over the course of the following four years, Dominique supported clients living with HIV who were navigating Illinois AIDS Drug Assistance Program (IL ADAP) medication resources, and now has a caseload of over 60 people through AFC’s Ryan White case management service. In this current role, she aids her clients in receiving dental support, housing assistance, food cards, and HIV-related health care. Outside of working with clients, Dominique’s role also allows her to assist fellow CCS’s with their clients, conduct monthly check-ins, and train new staff hires.

AFC’s Ryan White case management program is a product of the Ryan White CARE Act, signed into law on August 18, 1990, which is the largest federal program that focuses on providing treatment and care exclusively to people living with HIV/AIDS. The Act was named in honor of Ryan White, an Indiana teen who became HIV-positive through a tainted blood transfusion, resulting in him being unjustly expelled from school. He then became a passionate, well-known advocate for HIV research leading up to his passing in 1990 at the age of 18.

As the Lead Care Coordination Specialist for this program, Dominique Hayes shared that while having a large caseload of people experiencing a range of hardships can be exhausting, she enjoys going above and beyond for her clients, seeing them as family. For example, Dominique helps her clients with Christmas gifts during the holiday time, and bookbags for their children during back-to-school time. Currently, AFC case managers are required to connect with clients quarterly by phone or email, and every 6 months in-person, but Dominique recognizes the value in flexing with a person’s individual needs in order to make them feel truly supported.

“I have a client who is going through chemo right now, so I don’t wait the three months. I call him every time he has an infusion or an appointment, or send a text message with a picture saying, ‘You’re a blessing, keep fighting.’ Anything to be encouraging. You really have to base your contact on the needs of your clients—that kind of breaks you up from the rest because anyone can do this job. But who is going above and beyond? My clients are more than the requirement and I’m okay with that!”

This is a standard that Dominique Hayes establishes with all her clients. They require assistance with very taxing experiences like housing instability, accessing life-saving medications, or even disclosing their HIV status to someone for the very first time. Working with vulnerable communities takes more than paperwork and data entry—it takes establishing long-term relationships and a foundation of trust. And this trust shows through how Dominique’s clients interact with her. When one of her clients unfortunately passed away, Dominique received an invite to his funeral service because he ensured that his family had her contact information. Being given such a high level of faith is something Dominique never takes for granted.

Dominique truly enjoys witnessing her clients’ progression and “graduation” through the Ryan White program. Going from experiencing homelessness to finding a home to support one’s family is a feat, and Dominique does what she can to continue supporting her clients after the fact. The Ryan White Program does an amazing job at getting people living with HIV the resources they need, but there is still room for more aid.

“One of the services that I really feel could be challenging is sometimes people have requests that we don’t offer. For example, we’ve filled out your housing application and they pay your security deposit, but now you have to come up with $250 because we don’t have any funding to furnish your apartment through Chicago Furniture Bank. Or we want to give you a full card for food, but you don’t have pots! I wish that we could offer Walmart cards—just something to help connect the dots.”

AFC’s Ryan White case management program is a monumental step towards ending the HIV epidemic in Illinois because reducing transmissions is not simply a medical concern, but a social and economic one as well. For this program to cover resources like HIV-related healthcare, transportation, housing, and food and gas presents its commitment to supporting the communities we serve at this organization.

August 18th marks the anniversary of the Ryan White CARE Act. If you are someone who would benefit from AFC’s Ryan White case management service, visit our page for more information here.

AIDS Foundation Chicago (AFC)’s Associate Board includes emerging leaders who are passionate in the fight for HIV/AIDS services and prevention in the Chicagoland area. Members of the Associate Board act as ambassadors for AFC by taking part in fundraising, community service and advocacy activities that create health equity and justice for people living with and vulnerable to HIV and other related chronic conditions. Learn more about their newest members here.

By Omar Martínez González, Sr. Manager, Policy & Advocacy

CHICAGO, IL — AIDS Foundation Chicago (AFC) celebrates Friday’s passage of the Inflation Reduction Act of 2022 in the U.S. House of Representatives. The bill cleared the Senate last week and is headed to President Biden for his signature. AFC cheers the provisions that will allow the federal government to negotiate drug prices and reign in the pharmaceutical industry, which has for decades indiscriminately raised the price of drugs that people living with HIV and millions of Americans rely on to stay healthy. The bill also includes robust funding for combating climate change, changes to the tax code to make it more equitable, and the most consequential changes to health care policy since the passage of the Affordable Care Act.

On the health care front, this bill tackles the high cost of prescription drugs and makes health care more affordable for Americans, particularly Medicare recipients. Medicare is the federal health insurance program for people 65 and older and younger adults with permanent disabilities—including people living with HIV. Medicare alone accounts for over 50% of all federal funding dedicated to HIV care and services. Specifically, the bill:

• Allows Health and Human Services (HHS) to negotiate Medicare drug prices for the first time, beginning with 10 high-cost drugs starting in 2026, and then expanding to include other drugs.
• Imposes a rebate on drug companies for drugs covered under Medicare whose cost rises faster than inflation. This would apply to certain Part B drugs, and all Part D drugs with exceptions for those drugs that, on average, cost less than $100 annually.
• Imposes a $2,000/year cap on out-of-pocket spending on prescription drugs for Medicare Part D recipients starting in 2025. Currently, there’s no cap on spending.
• Imposes a $35/month cap on out-of-pocket spending on insulin for Medicare recipients.
• Eliminates cost-sharing for vaccines under Medicare Part D and for people on Medicaid and CHIP.
• Extends the Affordable Care Act (ACA) enhanced subsidies approved during the COVID-19 pandemic—which lowered premiums or made some plans free for low-income Americans and extended subsidies to higher-income Americans who previously did not receive support—for three years

This is a huge win for Americans as it lowers the cost of health care and paves the way for the government to negotiate lower prices on more medications. It is not yet clear whether HIV medications will make the list of high-cost drugs subject to negotiation. However, it is estimated that the drug price negotiations will save the federal government $288 billion over a decade, which is taxpayer money that can be reinvested into other priorities that affect people living with HIV. AIDS Foundation Chicago will continue to support any measure that makes health care accessible and affordable for more people.

The bill imposes a new 15% corporate minimum tax on the profits companies report to shareholders. AFC strongly supports provisions that will raise new revenue, and which hold large corporations accountable in paying their fair share of taxes.

Story and interview by Livvie Avrick

For Joel Jackson, Director of Inclusion and Equity Strategies for the Urban Health Initiative at the University of Chicago Medicine (UCM), participating in AIDS Run & Walk Chicago is an opportunity to contribute to a healthier society – and when a community is healthy, everyone benefits. Joel is part of a fundraising team for the Chicago Center for HIV Elimination (CCHE) through UCM, raising funds to support CCHE’s programming which includes youth drop-in and social support services , programs that Joel helped with.

This type of work is not new to Joel, as he has been working in HIV care and prevention since he was 21 and living in St. Louis, MO. There, he attended one of the first meetings of a support group called Tuesday Night Crew (TNC) a program at Project ARK (AIDS Resources and Knowledge) through Washington University in St. Louis.

“I attended the very second support group that they had and remembered feeling, for the first time in my life, that I was home,” said Joel. “I remember feeling so gracious, feeling happy, feeling filled, because I finally found the space where I felt comfortable and safe being all of who I am.”

This group was specifically for Black and Latino gay men.

“There were times I would go into gay spaces but feel the need to check my Blackness at the door; or I would go to Black spaces and feel the need to check my gayness at the door—but this was one space where I didn’t feel I needed to check anything at the door, I could just be myself,” said Joel.

Since this introduction to the field of HIV care and prevention work, Joel has not left. Through the Chicago Center for HIV Elimination, Chicago’s Ballroom community, and the AIDS Run & Walk Chicago, Joel has found his home in this city.

Some of Joel’s favorite memories of participating in AIDS Run & Walk have been the creative fundraising events he comes up with, like a wine tasting event where friends and colleagues attended, made donations and enjoyed tasting different wines.

Aside from the excitement of reuniting with community at Soldier Field, Joel participates in Run & Walk to remind his peers of the urgency of the HIV epidemic. “It perhaps lost the call to action that it once had; at the same time HIV is still a disease that impacts so many lives, in so many ways,” said Joel.

As HIV care services have expanded today to be a lot more holistic, investing in HIV care and prevention is not only helping to provide care for HIV management. It also means helping manage one’s mental health and other chronic illnesses, providing transgender individuals with transition services, and providing housing and food support to those who need it.

“It helps to meet the minimum basic needs of an individual and not just individuals living with HIV –everyone benefits from a healthy society,” said Joel.

To learn more about AIDS Run & Walk Chicago and donate to Joel’s AIDS Run & Walk Chicago fundraiser click here.

By Omar Martínez González, Senior Manager, Policy & Advocacy

Photo credited to Omar Martínez González

WASHINGTON, DC — Today, The U.S. Supreme Court (SCOTUS) issued a devastating blow to the right of women and pregnant people to access safe abortion services. Not only did it give Mississippi the green light to enforce its harmful 15-week abortion ban, it also struck down the landmark Roe v. Wade decision that established women’s constitutional right to access abortion without excessive government restriction. 13 states have hostile laws on the books known as “trigger laws,” which immediately limited or outright banned abortions in those states when the Supreme Court decision was made public. In an instant, millions of women and pregnant people lost their right to self-determination.

Make no mistake. Today’s decision is the culmination of decades of white supremacist efforts to reinforce systems of oppression against low-income Americans and Black, Latino/a/e/x and Indigenous people of color. In the United States, there is little to no safety net for working parents, access to comprehensive and affordable health care lags far behind other countries, and livable wages are still unattainable for millions of people—this decision will put a crippling economic strain on our poorest communities. Predominantly white, upper- and middle-class people will continue to access safe abortion care while the rest will be forced to have unplanned children or rely on unsafe abortion practices. This SCOTUS decision is the antithesis of racial equity and justice.

Thankfully for Illinoisans, the right to safe abortion was enshrined in state law through the passage and signing of the Reproductive Health Act (RHA) of 2019. This Act reaffirms the right of people who can become pregnant to make the incredibly personal choice to access birth control and abortions. It repeals harmful and outdated abortion laws that were already deemed unenforceable by our courts, and eliminates language that criminalizes abortion care providers. Finally, the Act establishes that insurance companies must provide coverage for abortions. If you are an Illinoisan, your right to abortion services is protected, regardless of the Supreme Court’s decision today.

This is not the end. Our fight will continue to ensure that the right to abortion is protected for all Americans. You can do your part in the fight to protect abortion rights by supporting providers, patients, abortion funds, and clinics on the ground. You can support additional state protections through laws, ballot initiatives, and by demanding that your state and federal elected representatives protect the right of people who can become pregnant to decide for themselves when they are ready to have a baby. The best way to make your voice heard is to vote! Be sure to vote in Illinois’ primary on June 28, 2022, and make sure you are registered to vote in the upcoming November 8, 2022 election.

AIDS Foundation Chicago is committed to protecting abortion rights, because abortion rights are human rights, racial justice rights, women’s rights, and LGBTQ+ rights.