June 3, 2024
“We were there then, and we are here now”: MANNA Celebrates HIV Long-Term Survivors Awareness Day
When 67-year-old Jeanette was diagnosed with HIV in 2008, she couldn’t believe it. She felt hopeless and judged, even by some of her healthcare providers, because of the stigma of HIV/AIDS.
“Then I met this lady, Waheedah Shabazz – she was telling the whole world that she was pos. She pushed me to be proud, to go to classes. She inspired me,” Jeanette says.
Ms. Shabazz is a Philadelphia-based community organizer, strategist and trainer, and among the organizers of a free symposium to empower and build community among long-term survivors living and aging with HIV held in May 2024. Organizations such as MANNA tabled at the event and connected with people thriving with HIV – many of whom, like Jeanette, had at some point received MANNA’s services. Some former clients had received MANNA’s home-delivered, medically tailored meals early in their journeys with HIV. Others received meals later on to help with additional conditions and comorbidities. Ms. Shabazz herself was once a MANNA client.
Jeanette has come a long way. In addition to community leaders like Waheedah Shabazz, she credits organizations such as Philadelphia FIGHT, Bebashi and the Mazzoni Center with helping to educate her and remind her of the power of the HIV community. “We are giants!” Jeanette says. And when she became sick with multiple conditions in 2021, MANNA was there to help her get back to health. She met a MANNA dietitian at a cooking class at Philadelphia FIGHT who connected her to our meal program.
“I love the meals,” Jeanette says. “The best thing [for other people with HIV] to do is to see if your doctor would approve of you getting the meals – and eat them! They’re nutritional, they help you learn how you [should] eat. […] I’ve had this thing [HIV] for 17 years and I’m still good, I’m still healthy.”
June 5th is HIV Long-term Survivors Awareness Day, marking the day in 1981 when the first cases of HIV/AIDS were documented in the United States. This year, MANNA commemorates this day with a special fundraising campaign to support our clients thriving with HIV/AIDS. Our fundraising goal is $4,300, acknowledging the 43rd anniversary of that fateful day in 1981.
“MANNA was founded during the height of the HIV/AIDS epidemic in Philadelphia in 1990,” says MANNA CEO Sue Daugherty, RDN, LDN, who first joined MANNA in 1999 as an on-staff dietitian. “There were seven founding members from the First Presbyterian Church of Philadelphia who saw people in the community dying from HIV and AIDS, often shunned and alone. Food was the common denominator that brought folks together.”
Today, thankfully, medical advancements help people with HIV/AIDS to not only survive, but to thrive. However, much remains to be done to prioritize quality care for long-term thrivers, advance health equity and fight for the end of the HIV/AIDS epidemic. Until then, MANNA seeks to promote quality of life and well-being for our critically ill neighbors living with HIV/AIDS, delivering nourishment and care to help them thrive.
We at MANNA invite you to contribute to our campaign and join us in celebrating this day as we trace HIV/AIDS and HIV/AIDS activism in Philadelphia, remember MANNA’s origins as an early and pioneering grassroots response, and take a closer look at what remains to be done to support survivors and reduce transmission today.
Early days
MANNA board member Dr. Marla Gold remembers when the first mysterious cases of pneumocystis carinii pneumonia and Kaposi’s sarcoma were reported independently of each other among young, previously healthy gay men in Los Angeles and New York City. The presence of these diseases, rare among healthy young people, in addition to other unusual infections signaled an immune system breakdown.
“June 5, 1981 is considered the start of the AIDS pandemic, but we know now that it is possible to live ten plus years with the virus from initial infection until clinical immune complications, so HIV was likely in humans long before then,” Dr. Gold says.
In September 1982, the CDC used the term “AIDS” or “Acquired Immune Deficiency Syndrome” for the first time, describing “a defect in cell-mediated immunity, occurring in a person with no known cause for diminished resistance to that disease.”[1] Later, researchers discovered the cause of AIDS to be the Human Immunodeficiency Virus (HIV), which kills cells that are vital to immune function in order to replicate in the human body and over time depresses its ability to fight off infections. Much later, researchers would confirm that HIV can only be spread via direct contact with certain bodily fluids of an infected person. Not until 1983, when 1,450 cases of AIDS had been reported in the U.S. and 558 of the people and children affected had died, would Congress approve the first dedicated funding for AIDS research and treatment.[2] President Ronald Reagan would not mention AIDS publicly until 1985 and would not make a public speech about AIDS until 1987.[3]
Meanwhile, by 1983 the virus had reached Philadelphia in full force.[4] Dr. Gold founded the interdisciplinary integrated clinical practice Partnership Comprehensive Care Practice to serve people with HIV/AIDS during this time.
“People were dying very, very young,” Dr. Gold says. “People were running out of money, shunned by society, losing their jobs, experiencing behavioral health issues, homelessness, et cetera.” Many turned to selling life insurance plans just to pay rent. Young people suffering from AIDS faced transphobia, homophobia and other stigma from many physicians. Many never received adequate access to the healthcare they needed to address and treat their symptoms.
In the absence of mainstream medical resources and knowledge about HIV/AIDS, people in LGBTQIA+ organizations, clinics, community groups and other grassroots entities came together to meet the basic survival needs of their impacted friends and neighbors. Food was an essential component of a “multi-collaborative system of care” that sought to help people with AIDS, as Dr. Gold explains. Among resources for case management, housing and other essential needs, Dr. Gold’s clinic had a food warmer in its waiting room. Every day, volunteers filled the warmer with hot, delicious comfort foods, such as gooey mac & cheese. On the warmer was a label that said: “MANNA.”
“MANNA existed to make sure people who had HIV/AIDS could access food; a hot meal” Dr. Gold says. “The original call to be there for people with AIDS was to prevent disease complications and serve up the highest quality of life that we could,” she explains. “Through MANNA that meant love, compassion, and food.”
When protease inhibitors entered the pharmaceutical market in 1996, ushering in a new era of highly active antiretroviral therapy or HAART, it became all the more critical for those living with HIV/AIDS to get tested, access medical care and begin therapy.
“MANNA’s meals could have brought people in,” Dr. Gold says, and “had an impact on their ability to listen to their health care provider and facilitate a conversation that helped get them to substance use treatment or get connected to other services. […] it’s hard to know if it was the hot meal or the compassion or care that was helping the person get better. It all had to come together.” As medicines and care began to gradually improve, “I remember when things started to happen: the combination of effective medicines, stable housing, regular food access,” Dr. Gold says. It all helped the overall prognosis for people with HIV/AIDS change for the better, and “MANNA was a part of it from the start,” Dr. Gold says. Grassroots organizations like MANNA, physicians like Dr. Gold, community organizers and other groups in Philadelphia all played important roles in bringing about this change. “We were there then, and we are here now.”
Former MANNA client Herbert, a 49-year-old living in South Philadelphia, was diagnosed with HIV in 2000. He remembers what it was like in the earlier days of the epidemic for those who were HIV positive. “Especially in the 80s and the early to mid-1990s, we were still frowned upon,” Herbert says. “If they could [have] put us on an island, they would [have]. Even today the government is taking funding out of HIV, but we still fight on for our rights.”
He says that it would have made a positive difference to receive MANNA meals from a friendly face, just as this social connection from our meal delivery drivers makes a positive difference for many clients today.
“To see somebody, a total stranger, coming to do something good – a lot of people need that. When people are diagnosed, even still today, because of [a] lack of knowledge [other people] will shun them. ‘They’re disgracing the family, an embarrassment.’ And to open your door and there’s somebody smiling, giving you food. People look forward to things like that,” Herbert says.
MANNA CEO Sue Daugherty started her career as a registered dietitian with the HIV/AIDS community in the mid-1990s. “I learned about MANNA because I referred my patients to MANNA,” says Sue. “I just had so much respect for this community that existed at a time when some people were afraid to shake the hands of their patients. MANNA was just a welcoming, open community that wanted to make sure that everyone was taken care of – not just with food but a knock on the door and a visit from the delivery driver. It really was so much about the relationship, not just the food.”
Thriving today
Approximately 25% of all people living with HIV and AIDS are considered long-term survivors.[5] This diverse group includes those diagnosed before the arrival of protease inhibitors in 1996 and many of the estimated 50% of people with HIV who are 50 years or older, as well as people born with HIV or who acquired the virus as babies and anyone living with HIV and AIDS for over 25 years. Today, many of these survivors contend with predispositions to conditions that arise with aging.
“People are living long enough to get the genetic high blood pressure that was in their family,” Dr. Gold says. “We are [now] looking at health and prevention components for people with HIV and AIDS that we would be looking for in anyone.”
At the same time, people with long-term viral suppression may face disproportionate risks. A 2018 global analysis found that people living with HIV are twice as likely as their HIV-negative counterparts to suffer from heart disease.[6] Another 2018 study found that while long-term viral suppression helped reduce cancer risk for HIV-positive patients, these patients still had excess cancer risk compared to HIV-negative patients.[7]
Of the approximately 350 clients who MANNA serves annually who live with HIV/AIDS, nearly 70% live with additional conditions or comorbidities such as cancer, diabetes or kidney disease. More than 70% are aged 50 or older. Our medically tailored meals remain a vital component of care for these clients. This was particularly true during the COVID-19 pandemic, when it was challenging and dangerous for immunosuppressed clients with HIV and AIDS to obtain food or other essentials in public places such as grocery stores or food banks.
After he started receiving MANNA meals, “I started feeling better,” says Herbert. He had more energy and felt more satisfied after eating MANNA meals, compared to how he felt after less nutritionally dense options such as takeout or fast food. “Because the food is healthy, it gives [people with HIV] that proper nutritious diet that goes along with our meds, which also helps you feel better about yourself.”
Former MANNA client Jeanette says that MANNA continues to impact her life today, even though she is no longer receiving meals. “I did classes where you prepare meals, and I loved doing that, I loved going to MANNA,” Jeanette says. The tools she learned about food preparation, portioning and seasoning help her continue to eat well.
“[MANNA] helped me eat right. I cut out all the junk food that I was eating that I wasn’t supposed to be eating,” Jeanette says. “Now I’m controlling my diet. And also my diabetes is under control.”
A growing body of research demonstrates that medically appropriate foods are an important component of treatment for HIV/AIDS. In a 2019 study with people with complex medical conditions, including HIV, medically tailored meals were associated with 49% fewer hospitalizations and 72% fewer admissions into skilled nursing facilities compared to matched control groups.[8] A 2017 study found that medically tailored meals helped increase antiretroviral therapy adherence among patients with HIV.[9] Indeed, we know today that a lack of appropriate nutrition can contribute to incomplete viral load suppression, as well as fewer numbers of white blood cells that help the body fight infection (called CD4 cells or T cells).[10] In other words, poor nutrition puts people living with HIV/AIDS at significant risk of both worsening prognoses and higher rates of transmission.
“We are working collaboratively to end HIV/AIDS, but at least today, effective antiretroviral treatment equals prevention,” Dr. Gold says. “At MANNA, we are proud to also be a part of that treatment. Medically tailored meals are helping to end the epidemic.”
Enduring struggle
According to the Philadelphia Public Health Department’s most recent Health of the City report, Philadelphia remains one of the 48 U.S. counties in seven different states with the largest number of new HIV diagnoses.[11] ,[12] Hispanic and non-Hispanic Black Philadelphians are diagnosed with HIV at rates two and three times greater than non-Hispanic White Philadelphians, respectively.[13]
In the face of these disturbing statistics, the story of HIV/AIDS in Philadelphia remains a story of intersectional struggle and enduring activism. As history professor Dan Royles, author of To Make the Wounded Whole: The African American Struggle Against HIV/AIDS, puts it, “Philadelphians […] lead the way to the end of the AIDS epidemic once and for all.”[14]
“Philadelphia was and is a city of firsts,” Dr. Gold says, offering legal services, an AIDS library, medically tailored meals and other resources before other cities impacted by HIV/AIDS. Indeed, as MANNA shifted from providing meals that were “delicious and delicious” to “delicious and nutritious,” as Dr. Gold puts it, we became among the first nonprofit providers of a comprehensive Food is Medicine intervention in the country, providing home-delivered, medically tailored meals to meet the specific nutritional needs of people with HIV/AIDS (and eventually, any serious illness combined with an acute nutritional need).[15]
In addition, one of the nation’s first Black AIDS service organizations was born in Philadelphia in response to our city’s staggering disparities: by 1985 African Americans made up almost half of all reported AIDS cases in Philadelphia and the majority of cases among people under 25 years old.[16] In response, longtime local gay activists and healthcare workers founded Blacks Educating Blacks About Sexual Health Issues, or Bebashi.[17] Bebashi continues to provide life-sustaining services across Philadelphia, such as HIV testing, a food pantry and health education, as marginalized groups continue to face barriers to accessing medical care and other structural determinants of health.
Latino communities, who also showed disproportionately high incidences of HIV infection, organized HIV services in groups such as Congreso de Latinos Unidos, Inc. The Congreso launched Programa Esfuerzo in 1988 to “shift the focus from intervention to prevention by emphasizing HIV awareness and understanding.”[18] This program continues to serve thousands of HIV positive and at-risk individuals annually.
Institutions such as the Mazzoni Center, founded in 1979 as Philadelphia Community Health Alternatives to serve the local lesbian and gay community, formed an AIDS Task Force to provide social services and offer information through a local hotline. Today, the Mazzoni Center is one of MANNA’s referral partners for clients with HIV/AIDS. MANNA, Congreso de Latinos Unidos, Bebashi and the Mazzoni Center, as well as the health services organization Philadelphia FIGHT where MANNA dietitians continue to teach nutrition education today, are just some of the enduring Philadelphia organizations that made an impact during this time.
The Philadelphia chapter of the AIDS Coalition to Unleash Power – better known as ACT UP Philadelphia – has remained among the most prominent and vital in the nation.[19] Founded in 1987 in New York City as a political direct-action group to protect both those at risk of and sick with HIV/AIDS, ACT UP has since spread across the country and been called “the most effective health activist [group] in history.”[20] While other chapters have become less active over time, ACT UP Philadelphia endures, remaining focused on and led by those most affected by the nationwide AIDS epidemic: low-income people and people of color. [21]
The membership of the group shapes the direction of its activism and helps it stay attuned to the needs of those living with and at high risk of HIV/AIDS.[22] In a prominent example, in the early 1990s an underground outgrowth of ACT UP Philadelphia founded Prevention Point Philadelphia to provide syringe service operations in the city’s northern neighborhoods. Lobbying efforts by Prevention Point members and ACT UP resulted in a 1992 Executive Order (4-92) put in place by Mayor Ed Rendell, legalizing the possession of syringes in Philadelphia and still in effect today.[23] A 2019 study found that clean syringe access helped prevent nearly 11,000 HIV cases in Philadelphia over a ten-year period from the time Executive Order 4-92 was put into effect.[24] ACT UP Philadelphia’s recent and ongoing campaigns include those focused on government accountability, affordable housing, quality services for unhoused people and more harm reduction strategies such as supervised Overdose Prevention Sites as a means of low-barrier, low-stigma HIV prevention. Per the ACT UP Philadelphia website: “Stigma equals death.”[25]
“Part of a healthy way of living is living without stigma,” Dr. Gold says. “Homophobia, transphobia, racism – these are all things that we at MANNA stand up against. We take care of everyone, and we are there no matter what.”
Indeed, “Stigma and criminalization are the main things that have not changed,” says Jeanette, reflecting on the landscape of HIV and AIDS since her diagnosis. “Just because you have HIV or AIDS [people still] stigmatize you, don’t want you to come to their house or use their toilets. But it doesn’t bother me because it’s not going to change the fact that I have it.”
Jeanette worked hard to educate her children when she received her diagnosis. “When I told my children, my youngest, God rest his soul, said, ‘Mom, you’re still my mother.’ They don’t keep me from their children, my grandchildren.” Jeanette is the proud grandmother to nine, and great-grandmother to three, “with one on the way!” She travels to summits and educational events regularly, such as the May symposium, and brings back her learnings to her community.
“You can live a long time [with HIV], and a nice normal life – you can have children, you can get married,” Jeanette says. “My life is not over. It has just begun.”
How you can help
Says Dr. Gold, “MANNA’s original supporters were infected and affected by HIV/AIDS, cooking their hearts out for people to support them and help them die with dignity. Now they’re helping people live with dignity. I’m proud that MANNA has helped play a significant role in that shift. We are there for a cure.”
Herbert says that it’s a comfort to know that MANNA has endured, serving people with HIV since 1990 and continuing to do so. “It makes me, being someone living with HIV, know that there are people who care. That everybody in the world doesn’t look down on us, wish death upon us, or fear us,” he says. “People actually take the time to help us get healthier so that we don’t become a statistic.”
On HIV Long-Term Survivors Awareness Day, MANNA honors our clients thriving with HIV/AIDS and their histories, their resilience and, most importantly, their futures. A gift to our fundraising campaign supports our ongoing work to nourish our neighbors living with HIV/AIDS to help them thrive despite their diagnosis. And just as we were in 1990, MANNA remains powered by volunteers – you can sign up to volunteer with MANNA as an individual or group here.
Resources
[1] https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline#year-2023
[2] https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline#year-2023.
[3] https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline#year-2023.
[4] https://philadelphiaencyclopedia.org/essays/aids-and-aids-activism/#gallery.
[6] https://www.sciencedaily.com/releases/2018/07/180718104744.htm
[7] https://www.sciencedaily.com/releases/2018/06/180611172420.htm
[8] Berkowitz SA, Terranova J, Randall L, Cranston K, Waters DB, Hsu J. Association Between Receipt of a Medically Tailored Meal Program and Health Care Use. JAMA. 2019;179(6):786-793.
[9] Palar K, Napoles T, Hufstedler LL, et al. Comprehensive and Medically Appropriate Food Support Is Associated with Improved HIV and Diabetes Health. J Urban Health 2017;94(1):87-99. (In eng). DOI: 10.1007/s11524-016-0129-7.
[10] Thimmapuram R, Lanka S, Esswein A, Dall L. Correlation of Nutrition with Immune Status in Human Immunodeficiency Virus Outpatients. Mo Med. 2019 Jul-Aug;116(4):336-339. PMID: 31527985; PMCID: PMC6699812.
[11] https://www.cdc.gov/mmwr/volumes/68/wr/mm6825a2.htm
[14] https://philadelphiaencyclopedia.org/essays/aids-and-aids-activism/#gallery.
[15] https://fimcoalition.org/about-fimc/
[16] https://philadelphiaencyclopedia.org/essays/aids-and-aids-activism/#gallery
[17] https://philadelphiaencyclopedia.org/essays/aids-and-aids-activism/#gallery.
[18] https://www.congreso.net/about/our-story/
[19] https://philadelphiaencyclopedia.org/essays/aids-and-aids-activism/#gallery
[20] https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline#year-2023
[21] https://philadelphiaencyclopedia.org/essays/aids-and-aids-activism/#gallery
[22] https://philadelphiaencyclopedia.org/essays/aids-and-aids-activism/#gallery
[23] https://ppponline.org/about-us/history-prevention-point-philadelphia
[25] https://www.actupphilly.org/stop-overdose-deaths-in-philadelphia