Bailey House Blog

Information and insight.

Bailey House sheds light on the latest issues surrounding HIV/AIDS.

Bailey House Leadership Transition

Posted on 01/10/2017 at 3:24 pm

It is with deep sadness that the Board of Directors of Bailey House recently announced the death of our CEO, Gina Quattrochi. She passed away December 13, 2016, following a valiant battle with cancer.

Gina was the CEO of Bailey House for 25 years. Gina’s commitment and dedication to her work and her tireless advocacy around ending HIV/AIDS leave an incredible legacy, both at Bailey House and in the wider community. She was a visionary leader and advocate who believed that housing and healthcare are human rights. Gina’s work helped to transform the lives of those she touched, and she will be deeply missed.

As we begin the search for a new chief executive, the Board of Directors has asked Denise Arzola, Senior Vice President, to serve as acting Chief Operating Officer. Denise joined Bailey House in November of 2004 and has over 20 years of administrative, clinical and supervisory experience providing services and designing programs and interventions for vulnerable and at risk populations. During her tenure at Bailey House, she and her team have obtained operating licenses for both Mental Health and Substance Abuse clinics, expanding Bailey House’s services to include HIV negative individuals and those challenged with chronic illnesses. Denise is committed to ensuring the organization continues to move forward with the same core values, vision and integrity established by Gina.

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Bailey House Mourns Loss of CEO

Posted on 12/14/2016 at 4:46 pm

It is with profound sadness that the Board of Directors of Bailey House announces the death of our CEO, Gina Quattrochi. She passed away December 13, 2016, following a valiant battle with cancer.

Gina was CEO of Bailey House for 25 years. Prior to joining Bailey House in 1991, Gina served on the organization’s Board of Directors for five years. During her tenure, Gina played a foundational role in growing Bailey House into an innovative leader in HIV/AIDS care and supportive housing. Her work and fervent advocacy helped establish the link between homelessness and the incidence of HIV infection. This approach stressed the need for a combination of stable housing and access to health care to achieve improved long term well-being.

Gina’s work introduced a significant shift in the way public policymakers view HIV/AIDS risk and prevention. She helped establish a new paradigm for public discourse to address the HIV/AIDS epidemic and sustained, successful health care. Over the course of her tenure, Bailey House grew from a small agency providing housing for people living with HIV/AIDS into an $18 million organization that provides housing, care coordination, mental health and substance use treatment to some of New York City’s marginalized citizens.

Gina’s commitment and dedication to her work and her tireless advocacy leave an indelible and permanent legacy. Her life touched countless people, and her vision and passion left a deep impact on those who knew her. Larry Kramer — legendary AIDS activist, founder of GMHC and ACT UP, Emmy and Tony Award-winning author of The Normal Heart and The American People and long-time friend of Gina — remembered her as a dedicated and passionate advocate who will be greatly missed. “All our lives will be poorer for the loss of this extraordinary person,” added Kramer. “She was the most noble of heroines. She fought not only for us, but for all of mankind.”

gina 2

In addition to her tenure as Bailey House CEO, Gina was former president and an ongoing board member of the National AIDS Housing Coalition. She was a founding member of the Ford Foundation funded “30 for 30 Campaign”, an advocacy initiative to ensure that the needs of women, and transgender women, are included in the national response to HIV risk and infection.

Gina was appointed to New York Governor Andrew Cuomo’s Ending the Epidemic Task Force (2014). The Task Force provides guidance for the Governor’s Office and the New York State Department of Health on the implementation of strategies in support of the Governor’s goal to end AIDS by 2020. Gina served as a member on the Harlem Hospital Community Advisory Board, and on the board of the Ryan White Integration of Care committee, which sets health funding priorities for New York City. She was also a board member for iHealth NYS, which advocates and negotiates on behalf of HIV Targeted Case Management programs and chronically ill Medicaid recipients.

Gina’s impact on HIV/AIDS care and prevention spanned nearly three decades and her achievements have been widely recognized. On December 1st, Gina was recognized for her HIV/AIDS advocacy by the New York City Health Department, in conjunction with the dedication of the New York City AIDS Memorial. The following day she was honored by Bridging Access to Care at their 2nd Annual World AIDS Day Benefit Gala. These two recent awards of distinction acknowledged her work as a prominent activist and leader in the effort to end the HIV/AIDS epidemic.

In 2014, Gina was also awarded the UCLA/Johnson & Johnson Health Care Executive Program Community Health Improvement Project (CHIP) Award, honoring leaders in health care who have improved the well-being of people living in their community through a specific initiative.

The Board of Directors is implementing a succession plan that will continue to ensure that the organization moves forward committed to the same core values, vision and integrity established by Gina. Bailey House will share additional updates about services and a memorial as they are available.

Gina

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What’s at Stake?

Posted on 11/10/2016 at 2:24 pm

Statement by Bailey House CEO, Gina Quattrochi

Over the last two years, New York State and other jurisdictions have developed doable strategies and plans to reduce new infections to under 700 new cases, meaning that there will finally be an AIDS free generation. After 35 years of work the end could be in sight.

Whether you call it “Ending AIDS” or “Getting to Zero” the goals are pretty much the same. Reaching them requires navigating  a fragile latticework of medical and scientific research, HIV prevention, access to care and treatment, drug affordability, funding for syringe exchange and a whole-scale investment into those social determinants of health like housing that are required to achieve positive health outcomes.

Will Donald Trump be led by members of his party who may be more conservative than him to gut these safety net programs or will he rely on current experts running agencies like CDC, NIH and HRSA to advise him?  Mr. Trump seems to relish a good deal – I think ending AIDS in 2020 during his presidency is a pretty good one. I hope he takes stock

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A Garden that Feeds the Soul

Posted on 09/22/2016 at 12:32 pm

On the first day of fall, we reflect on some highlights of this past summer. Summer 2016 was a special one for residents of Bailey-Holt House, situated on the corner of Christopher Street and the West Side Highway in Greenwich Village. The building is equipped with a spacious rooftop featuring stunning views up and down the Hudson River, and it’s a space that many residents enjoy, especially during the warm summer months. This summer, staff and residents took advantage of the space and collaborated on a rooftop community gardening effort, and the results were spectacular!

“This summer’s garden was the most vibrant and edible in recent history,” said Jeannetta Bushey, Associate Director of the program at Bailey-Holt House. “Everybody is using it. It’s a true community effort.”

Staff and residents worked together on all aspects of the garden, from gathering and creating containers to putting wheels on them so they could be easily moved for watering and weeding. They also learned a lot together through their collaboration. The rooftop is open to the elements and exposed to intense sun and wind; residents and staff had to learn about gardening techniques and plant care in order to create a garden that could withstand the rooftop environment. Adjustments were made along the way to help the garden thrive.

A bonus of creating such a fruitful garden was being able to use the vegetables from the rooftop in the food that’s prepared in the kitchen for residents. “I loved using all the fresh herbs in sauces and soups,” shared Gail, the head cook in the kitchen. “And salads! We made some of the most beautiful and healthy salads using all of the kale, tomatoes, aka shiso, butter lettuce, radishes and peppers. And the residents kept asking for some of the kale for their juicing. I’m looking forward to making fresh pesto with the basil that we’re growing.”

One resident, James, was particularly helpful in the garden. It was his first exposure to hands-on gardening, and as a result of his positive experiences on the Bailey-Holt House rooftop he’s very much looking forward to the next gardening season. James had this to share about his time working in the garden: “Well, I like things that are green. Gardening for me increased socialization, both my own with other residents and for residents among themselves. It’s nice to help Bailey-Holt House be sustainable. It’s satisfying to me, stress reducing and calming. I get to pay it forward and see the results.”

The fruits of labor from the Bailey Holt-House garden included: aka shiso, basil, butter lettuce, clover (to help attract bees!), cucumbers, dill, kale, melons, oregano, peppers, pumpkins, radishes, rosemary, sage, spinach, strawberries, Swiss chard, thyme, tomatoes and zucchini.

As summer ends, the Bailey-Holt House gardeners will overwinter those plants that they can inside, some of which will continue to supply the kitchen with fresh produce to use. Urban gardening at its finest.

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Celebrate Today’s Victory, and Remember There is #MoreThanMarriage

Posted on 06/26/2015 at 11:37 am

pride flag social justice

The Bailey House community celebrates today’s landmark decision by the US Supreme Court, holding that marriage is a constitutional right that applies equally to members of the LGBTQ community as it does to heterosexuals. The decision is especially timely as our community and others get ready to march down 5th Avenue on Sunday to celebrate our pride, diversity and staunch commitment to social justice and advocacy.

Now that the Marriage Equality movement has been victorious, it’s time for us to focus on combatting other social justice issues that affect our community. Discrimination in housing, employment, healthcare and other areas, vital to survival and dignity, must be eliminated. Just two months ago a member of the Bailey House community, who moved down South with his husband of thirty years, was fired just one week into his new management job because his “lifestyle” was contrary to the moral code of his employer, the Catholic diocese.  Sadly, today’s ruling will have little meaning for his situation.

Combating poverty, an issue that is rarely discussed in the LGBTQ community, also needs to rise to the top of our agenda. Most LGBTQ Bailey House clients struggle under the weight of dire poverty and the homelessness and poor health outcomes that accompany it. For many, the victories of the LGBTQ community are elusive as they struggle to get through the day. Just yesterday, we hosted the LGBTQ youth who reside in our STARS program at a Pride Picnic. Now housed, they are taking on other life challenges like obtaining an education, finding employment and getting support for the depression and isolation that has often punctuated their lives. Let’s not allow another generation of LGBTQ youth face homelessness and despair.

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Women and girls as collateral damage in the HIV/AIDS epidemic

Posted on 03/10/2015 at 4:53 pm

national women and girls hiv aids awareness day 2015

Thirty-four years into the epidemic, women and girls are still overlooked in almost every aspect of federal, state and local HIV/AIDS policy, funding and care. Yet we continue to be infected and we continue to die.  One in 5 new HIV infections in the US are among women.  AIDS diagnoses among women in the US have tripled since the mid 1980s. In certain parts of the nation, like the South, where poverty and lack of access to healthcare fuel the epidemic, that number can rise to 30%.  In Sub-Saharan Africa women comprise 58% of the epidemic.

In 2010, the Obama Administration issued a visionary plan, the National HIV/AIDS Strategy (NHAS), which set forth strategies to reduce new infections, increase access to care, and reduce related health disparities — yet it failed to set forth any strategy regarding women and girls. Despite using the word “women” sixty or more times in the document, its authors failed to articulate any strategy to reduce new HIV infections among women or address their barriers to care.

Despite the tragic oversight in the NHAS, there was little public outcry. Few spoke up about the implications of this public health crisis for women, their families and their communities. Not even ACT-UP, known for its vigorous activism and “Silence = Death” mantra, protested this deadly lack of attention to women and girls. Can the lack of interest in women and girls be chalked up to just neglect? Or is it part of the larger war against women’s reproductive rights?

This year the administration is due to report on the results of the initial plan and update it. Initial reports are that it will again be silent regarding women and girls. It is inconceivable that in this age of promising biomedical prevention such as PrEP and PeP, the evolution of Medicaid redesign and promising new care models, the fate of women and girls will again be ignored.

Are our mothers, daughters, sisters, nieces and granddaughters so expendable? Are they merely collateral in the epidemic where 86% are infected through heterosexual sex despite new biomedical prevention that could reduce or even end new infections among women and girls? Why is there no public concern that over the half the population is being overlooked in public efforts to end the most devastating plague of our time?

When women are disabled by illness, communities are put at risk. As major caregivers of their children and often other generations within their families, a woman’s inability to carry on creates hardship and crises that extend well beyond HIV/AIDS.  It’s time for HIV/AIDS activists, policy makers and others to demand that women and girls matter. If the administration issues a revised “National HIV/AIDS Strategy” this year without addressing women and girls, activists must stand up. Silence is no longer acceptable.

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5,000 Homeless Youth in New York State

Posted on 11/26/2014 at 2:36 pm

diverse youth
One of the things I enjoy most about the holidays is spending time with my children, now ages 20 and 25. It is therefore hard to imagine that there are approximately 5,000 youth ages 13-24 in New York State who are homeless this Thanksgiving and don’t have a family to share the holidays with this year. Instead, many are living on the streets, forced to trade sex for shelter and food. Some become victims of predatory adults, sex traffickers and others who subject them to constant danger and abuse.

While doing research for a recommendation to the Governor’s Task Force to End AIDS by 2020 that I and other task force members are submitting, I was shocked to learn that the last time New York City did a major policy overhaul for youth services was in 1978, with some tweaks in 1980.  Imagine – the state has not updated youth services policy since before the beginning of the HIV/AIDS epidemic.

Youth end up homeless for many reasons, including abuse and neglect by parents or other guardians; rejection by family due to the youth’s gender identity or sexual orientation; lack of independent living or life skills; incarcerated or deceased parents; mental illness; and education-related issues. I was also surprised to learn of an invisible group of homeless youth – pregnant girls and girls parenting a newborn. Although they comprise 56% of homeless youth, we seldom hear about them. Tossed from one state and City agency to another, these young women are faced with terrible decisions that even most adults would find hard to make. Many of them are victims of domestic and intimate partner violence. For those who want to keep their baby, returning to their abusers is often their only choice.

I hope that by this time next year, we can influence New York State to conduct a full scale revision of the 1978 Runway and Homeless Youth Act. We need more programs like our STARS program for both HIV-positive and HIV-negative homeless young adults.  STARS clients receive supportive housing, not shelters, so they can stabilize, get the services they need and begin to imagine a life free of neglect and abuse. I’d like to think that by 2020, we could end new HIV infections among youth. It’s the very least we owe these young men and women who now struggle merely to survive.

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Guest blog post by Joseph Neese

Posted on 04/11/2014 at 4:43 pm
Joseph Neese and Gina Quattrochi at the 2014 Bailey House Gala & Auction

Joseph Neese and Gina Quattrochi at the 2014 Bailey House Gala & Auction

I’ll never forget October 2009. I had just returned to campus at Boston College following several months abroad in Argentina. My boyfriend from that time was making the ages-old pilgrimage to Machu Picchu – now one of the ten wonders of the world. The immense joy of that moment was instantly sapped when, days later, I received the news: he was HIV-positive.

Being more than 8,000 miles away and on the receiving end of the phone unable to give him a hug was one of the most painful moments I’ve ever experienced. I had read my friend Larry Kramer’s masterworks, Faggots and The Normal Heart, and I was well-versed in my history of the plague that demolished his generation. But it wasn’t until that very moment, when someone my own age was diagnosed with HIV, that I felt the weight of a world torn apart by HIV and AIDS.

Frank’s image could have filled the pages of any magazine. He was young and just beginning his career in government. It broke my heart knowing that this diagnosis was preventable. An act of love with a trusted partner changed his life in an instant. 

At the time, Frank would have been representative of the hardest-hit population by HIV today in America: young, non-white men. To put it into perspective, 87 percent of new HIV cases among men ages 13 to 24 are among men of color.

It begs the question, why isn’t this making front page headlines? Sadly, it seems that in 2014, stigma remains rampant in America. The masses are caring less and less about a disease whose demographics are increasingly focused on people of color, people struggling with homelessness and poverty, and other marginalized populations. We constantly envision an “HIV and AIDS free world.” But if transmission rates continue to rise among youth, how is this possible?

These alarming statistics will only be reversed if we take the time to engage with youth in real ways. The abstinence-only education model failed our nation, as double-digit increases in youth HIV transmission rates make clear. To no surprise, young people have and always will have sex, and realistic sex education is necessary. However, while we can talk about behavioral issues all that we want, attitude adjustment and behavioral modification alone are incomplete and ineffective.

Structural drivers and social determinants, such as poverty, homelessness, racism, lack of access to healthcare and trauma and intimate partner violence  are better predictors of the epidemic. We need to address these issues among our youth in addition to teaching them about safe sex. If we encourage youth to think about HIV/AIDS as part of a larger picture of the disparities that exist in the U.S., we will reach them in more meaningful ways than just letting them know safe sex is a good idea.

After all, why is the HIV rate higher among youth of color? Youth of color are at a higher risk for HIV even when they have fewer “risk behaviors” than white youth simply because they are more likely to be impacted by these structural barriers than white youth.

Bailey House reaches out to marginalized youth through our now expanding STARS (Success Through Accessing Rental Assistance and Support) program, the largest supportive housing program for HIV-positive youth in New York City. STARS provides stable housing to 50 formerly homeless young people, many of them LGBTQ, who are living with HIV/AIDS and struggling  to overcome mental illness and/or substance abuse. We connect each individual to life-saving medical care and independent living skills training, transforming  vulnerable people in crisis into stable, safe and thriving adults.

But the work doesn’t stop inside Bailey House. An HIV and AIDS-free generation won’t be realized if we aren’t recruiting a new contingent of activists, leaders and philanthropists to carry on the work my late uncle Rodger McFarlane began when he took the helm of Gay Men’s Health Crisis at a mere 27 years old.

The future starts with my generation, and that’s why I’m working with our CEO Gina Quattrochi to better include youth and young adults in the current HIV/AIDS narrative in this country. It’s time for my peers to have a more open and engaged dialogue about some of the topics we tackle on a daily basis at Bailey House: homelessness, poverty, mental health. It’s only through increased communication that the walls of stigma can truly be broken.

I believe I will see a world without HIV and AIDS in my lifetime, and I look forward to a day where National HIV and AIDS Awareness Day will be something for the history books. Small steps toward this goal can be made on an individual level. The more we empower youth, the more they will make caring decisions in regards to their health and the health of their communities. Along those lines, I leave you with these words of wisdom from the Jesuit theologian Pedro Arrupe:

“Nothing is more practical than … falling in a love in a quite absolute, final way. What you are in love with, what seizes your imagination will affect everything. It will decide what will get you out of bed in the mornings, what you will do with your evenings, how you spend your weekends, what you read, who you know, what breaks your heart, and what amazes you with joy and gratitude. Fall in love, stay in love, and it will decide everything.”

Joseph Neese is an LGBT activist and journalist, who is on the Board of Directors of Bailey House and The Tyler Clementi Foundation, where he works specifically with issues affecting youth and young adults. Joseph works in Human Resources for the NBCUniversal News Group, supporting NBC News, msnbc and CNBC. He is the nephew of the late LGBT and HIV/AIDS trailblazer Rodger McFarlane.

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“Women Hold Up Half the Sky” Except in HIV/AIDS policy, care, prevention and funding!

Posted on 03/10/2014 at 1:56 pm

women hold up half the sky nat women and girls HIV AIDS awareness day 2014

There is an old Chinese proverb that says, “Women hold up half the sky”. In 2014, I’d add, “Except in HIV/AIDS policy, prevention, strategies and care.” Women are not, as many people like to say, the “new face of AIDS”. For over 32 years, women, especially black women and Latinas, have been infected with the HIV virus and many have transitioned to an AIDS diagnosis. But because of racism, sexism, socio-economic status, family responsibilities and the war against women’s reproductive health, many have been left behind.

Statistics from a 2010 Center for Disease Control and Prevention (CDC) report show that while there has been some decrease in new infections among women, they continue to be infected. “New HIV infections among women are primarily attributed to heterosexual contact (84% in 2010) or injection drug use (16% in 2010). Women accounted for 20% of estimated new HIV infections in 2010 and 24% of those living with HIV infection in 2009.” The CDC website contains a graphic on the page with its report, which states “Gay and bisexual men of all races are most severely affected by AIDS” – given that AIDS is the leading cause of death of young black women, it’s a shocking and insensitive statement by the leading government agency responsible for shaping HIV prevention strategy. Tragically it reflects a growing lack of concern about HIV-positive women and women affected by HIV/AIDS.

HIV-positive women and women affected by HIV/AIDS have been left behind in HIV/AIDS policy, prevention care and funding. The President’s 2010 National HIV/AIDS Strategy is silent regarding issues affecting women. Last week in the President’s 2015 budget, Ryan White Part D, one of the key sources of funding for programs for HIV-positive women and their families, was eliminated and folded into a broader category. A number of organizations in NYC and across the nation will lose their Ryan White Part D funds at a very critical time as the Affordable Care Act and Medicaid Redesign are changing the way women’s reproductive healthcare will be provided. Who will be left to help HIV-positive women navigate these changes?

As the CDC and pharmaceutical companies roll out promising new bio-medical prevention strategies, PrEP (pre-exposure prophylaxis, which has to be taken daily by the HIV-negative partner) and PeP (Post-exposure prophylaxis, often called the HIV “morning after” pill) women’s reproductive health is a mere footnote. In the recent “Partners” study, which demonstrates success of a PrEP drug, Truvada, in heterosexual and gay male couples where one partners is HIV-negative, women represented only 38% of the study participants. While there were some findings of lower efficacy in women, the researchers considered it statistically insignificant.

In contrast, the 2010 FEM-PrEP study, which was intended to measure the efficacy of PrEP for HIV-negative women, was stopped because the company monitoring the results determined that “it was highly unlikely that any protective effect of Truvada that might emerge would be enough to demonstrate a statistically significant benefit overall.” One of the reasons given was that HIV-negative women may be less adherent because of side effects, which include nausea and “an unexpected” drug interaction with women’s contraception which led to lower levels of hormones and less protection against unwanted pregnancy.

These findings are very disturbing when you consider that women often cannot negotiate “safer sex” for a whole host of reasons, like intimate partner violence, trauma, poverty, homelessness, survival sex and lack of access to condoms.  Even in the Partners study many women reported longer periods of “condomless sex” than their male counterparts — 3.5 years as compared with the 2.5 years reported by heterosexual men and 1.5 years by the gay men in the study.

Women living with HIV/AIDS and women affected by AIDS are an endangered group. Without polices, prevention strategies and care that focus on the unique needs of women including their biochemistry, reproductive health, emotional well-being, family and partner status, geography, and  socio-economic status, the HIV/AIDS epidemic will continue to be severe for them and their families. Isn’t it time for national HIV/AIDS policy, care and funding to recognize that women must be counted and heard?

Bailey House will continue to be in the vanguard of advocating for HIV-positive women and women affected by HIV/AIDS as a member of the steering committee of the “30 for 30” campaign. Together with HIV-positive women activists from around the nation as well as many organizations that serve women, we will fight to get and keep women on the national HIV/AIDS agenda and in national healthcare policy. We won’t stop until policy and practice acknowledge the unique needs of women and begin to count them in. If, as the Chinese proverb says, “women hold up half the sky,” then the sky will fall without us.

 

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James Lister’s 30% Story

Posted on 02/24/2014 at 4:36 pm
Gina speaking at a press conference for the 30% rent cap. Assembly Member Robert Rodriguez is to her right, and she is surrounded by members of VOCAL-NY.

Gina speaking at a press conference for the 30% rent cap.

Last week Governor Cuomo and Mayor de Blasio reached an agreement that will have far-reaching effects on low-income New Yorkers living with AIDS who qualify to receive rent assistance from the City.  It reverses a decade-long injustice that was created by the Giuliani Administration and continued through Mayor Bloomberg’s time.

In federally subsidized housing or rental assistance programs, low-income tenants are required to pay 30% of their income (usually from SSI or SSD) as rent. Ten years ago, the Giuliani administration found a loophole and began to take up to 70% of the disability income of people living with HIV/AIDS, leaving most with $330 a month or $10.84 a day to pay for everything else – groceries, clothing, transportation, laundry, household and personal hygiene items and all the other things necessary for day-to-day living.

This issue immediately became the rallying point for many people in the HIV/AIDS community. Led by VOCAL-NY and others, activists sprang into action getting support from NYS legislators led by Senator Tom Duane, Assembly Member Deborah Glick and City Council members led by former Speaker Christine Quinn, to pass a bill that established a 30% rent cap. The community was jubilant.

I was at the victory party celebrating the win when former Governor Patterson’s staff called to say that despite all the work, he vetoed the bill after pressure from the billionaire Mayor Bloomberg. Celebration quickly turned into despair. It was a moment that I will never forget. In 2010, I participated in civil disobedience along with 17 other colleagues including former Senator Tom Duane, Charles King of Housing Works, and Kimberly Smith of Harlem United and others to protest Governor Patterson’s veto. While our arrests were largely symbolic, it sent a message that we were not going to stop until this terrible social injustice was reversed.

James W. Lister, a former business owner, is one of the people directly affected by the lack of a rent cap. I invited him to share his story. James worked for 35 years before becoming disabled from complications of AIDS. He reluctantly applied for disability and, after a very humiliating process, was finally awarded approximately $1060 per month in disability benefits – a system he had contributed to all of his adult life.  While $1060 monthly is very little in NYC, he knew he could survive and pay the rent on the apartment he has lived in since 1979. Then the City dropped the bomb that would change James’ life. They budgeted him from $1060 to $330 monthly – less than $11 per day.

James shared this with us:

I decided, by the time my status had progressed to full-blown AIDS and I had lost over 200 friends, acquaintances, and intimates, I would not die before my parents.  Given the parameters of my hard-earned entitlement of $10.84 day, I stopped every aspect of living except for the necessities: bath soap, shampoo, laundry soap, fabric softener, the cost for washers and dryers, toothpaste, toothbrush, mouth wash, dental floss, dish sponges, dish washing soap, light bulbs, telephone, cable TV, internet, transportation to (the increasing list of) doctors’ appointments, co-pays and deductibles for doctors and tests and for (the increasing number of) prescription medications.  I was not going to die or become homeless. Before AIDS I had saved up for vacation, now it was shoes.

Unfortunately, sacrificing everything in my life, including haircuts, shaving, deodorant, new sheets and towels when they wear through, did not go far enough and I was forced to collect bottles and cans for cash to survive. I had already started wearing clothes from friends who had died.

I constantly lived in the very unhealthy state both from AIDS and the relentless fear I could fall behind in rent due to an emergency expense. I could not bear to lose the apartment that has been my home since July 1, 1979.

My medication regime had grown from three medications two and three times a day, to 30 medications one and two times a day, plus a weekly injection.  There are two and a half shelves in my kitchen cabinets that are devoted to managing my medications.  I knew I couldn’t do this if I was homeless.

But things got worse. My Mother died on April 4, 2009 in California. I could not afford the plane fare to attend her funeral or bury her. My Father died on January 30, 2011.  I could not bury him either.

Being forced by the City to pay more than 70% of my disability robbed me of so much – things that most of us take for granted, like the ability to buy a newspaper or meet a friend for dinner, the ability to buy new pants when the old ones wear out or stock up on groceries when bad weather is predicted – but when it took away my ability to properly mourn the death of my parents, that was the final straw.

I’ve worked alongside VOCAL-NY, Bailey House, Housing Works, GMHC and other groups to demand that the city and state cease taking a lion’s share of the benefits I earned as a taxpayer for so many years. If 30% was the standard in most federally subsidized programs around the nation, why did NYC have the right to be so greedy and lawless? I never asked for them for anything more than I was entitled to by law. This week’s victory is welcome but bittersweet. I’ve lost so much, it will take time to reconcile how much I and others have suffered.

What’s next? Getting the 30% rent cap has consumed much of my life for over a decade. While I look forward to the first time my income goes from $330 a month to $927, I know that there’s still a lot to fight for. Housing is key to stopping the epidemic. The homeless are 10 times more likely to become infected. Stable housing is vital to helping those of us who are already infected to have access to care, manage our medications, and get mental health and other services so that we can live whatever time we have to the fullest.

Already I can start to dream of the future – something I never let myself do before when I was constantly pennies away from homelessness and complete poverty every day. Now I can let myself plan to be there when my nephew Joe, who is in 5th grade, graduates from college. I wasn’t able to bury my parents but I’m damn sure I will be there to see and celebrate the youngest generation of my family. And when I get my first check for $927, I may even go to California to visit my parents’ grave.

 

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