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Events that matter.

Bailey House finds innovative and creative ways to get out the message about our supportive housing and services for individuals and families living with HIV/AIDS. From our annual Auction and Party to our community events and house parties. Bailey House events are both entertaining and informative. We invite you to attend—enjoy the company of like-minded supporters while making a difference in the fight against HIV/AIDS.Watch this web site for details on upcoming events. You can also subscribe to receive email notification or call us at 212.633.2500 ext. 460 to be added to our mailing list.

Upcoming Events

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

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.

 

Posted On: 03/10/2014

We need to get tougher on the system, not the user.

philip-seymour-hoffman

Over the weekend, we lost yet another brilliant actor — Philip Seymour Hoffman, who graced stage, film and TV with his incredible performances. He, like Amy Winehouse, Heath Ledger, Anna Nicole Smith and others, met his end through what now seems like a lethal combination of drugs, including heroin and cocaine.

We shouldn’t be surprised. Five years ago overdoses from prescription drugs, heroin and other substances became the leading cause of accidental death in America. Many ERs here and around the nation report an exponential increase in overdose related admissions, particularly for young adults, including those living in suburban communities.

It’s time to act. Let’s decriminalize drug use – let’s remove the stigma of “addiction” and call it what it is: a terrible disease suffered by a wide range of people, often caused by trauma. Let’s ensure that drug users have access to clean syringes, harm reduction and mental health services. That would be a start.

Did you know that with the exception of New York State and a couple of other jurisdictions, there are no syringe exchange programs because Federal money cannot be used to fund them? Once again ideology trumps public health. Despite decades of research showing that this intervention has reduced HIV incidence among drug users by as much as 85%, critics have argued that syringe exchange encourages drug use. Research shows that it does not.

Significant public health benefits have resulted from syringe exchange because programs not only distribute syringes but also pick up used ones and get them off the street. Syringe exchange is an outreach tool to get active users into all types of care – medical, mental health and substance abuse treatment, just to name a few.

We need to get tougher on the system, not the user. Currently many mental health providers won’t see a patient who is actively using. Isn’t that like an oncologist refusing to see someone because they have cancer? If Philip Seymour Hoffman had walked into a mental health clinic last Saturday afternoon and shared that he had just used heroin, should he have been turned away?

We also need to start having honest discussions with our kids. Why isn’t overdose prevention taught in health classes? Will teaching how to prevent a death encourage drug use? I doubt it. Wouldn’t you rather have a young adult, armed with overdoes prevention knowledge and tools, at a party where young people – maybe your daughter, son, grandchild, niece or nephew – were doing drugs, rather than stay in denial about the danger they may be in?

None of this will bring back Philip Seymour Hoffman or Amy Winehouse or Heath Ledger or the countless others who have died this way, but put into practice, it could save lives in the future. Overdose is fast becoming a new epidemic and public health crisis.  There is a heroin overdose prevention bill advancing in the New York State Senate currently, but what about the Federal level? How many more celebrities and ordinary citizens dying of drug overdose will it take to move us forward?

Posted On: 02/06/2014

When seeing a doctor is not enough

bartak brick wall
Recently Kaiser Health News published a story about the concerns some people living with HIV/AIDS have about Obamacare.  As the Affordable Care Act is implemented, many have questions about how current insurance coverage may be affected and whether funding streams like the Ryan White Care Act will survive.

These are all very appropriate concerns as the nation rolls out the most dramatic change in healthcare delivery since the 1980s’ introduction of a Medicare payment system that based reimbursement on algorithms by patient’s principal diagnosis, ICD diagnoses, gender, age, treatment procedure, discharge status and the presence of complications or co-morbidities. While the “Diagnostically Related Groups,” as this system was called, resulted in many positive outcomes, there were also cases where seriously ill stroke patients were sent home a day after admission, sometimes before they fully recovered, because the hospital could no longer get paid for a typical 4-5 day stay. Unintended kinks in new systems are not all that uncommon.

Since we have 31 years of experience working with low-income people living with HIV/AIDS, we have our own views on all of this.  We strongly believe that as this revolution in healthcare unfolds, people living with HIV/AIDS and all other chronic illnesses need safety net services and advocacy that will ensure continued care access and positive health outcomes.  As one man interviewed in the Kaiser article stated: “”My medical is very well-managed,” said Land, an insurance adjuster before he retired in 1993 because of his illness. “But I also need that wrap-around care that helps me live every day. In my 15 minutes with the doctor…I am not going to get that.”” We couldn’t agree more.

Comprehensive care including stable housing, mental health services, food and healthcare coordination are the foundation for surviving and thriving.  Bailey House built this model in the early epidemic because it made sense. Now after 31 years we have lots of data to prove it. Let’s make sure that as the nation seeks to cut costs, it doesn’t disassemble what makes the rest work.

To read the full Kaiser News article, click here.

 

Posted On: 01/10/2014

Announcing “Health Matters”: A Collaboration Between Bailey House & CIDNY

BH LOGO

cidny

Bailey House, which has served low-income homeless and unstably housed men, women and families living with and affected by HIV/AIDS since 1983 and The Center for Independence of the Disabled, NY (CIDNY), a leading advocate for people with disabilities that has worked for over 30 years to remove physical and social barriers and to ensure that people with disabilities have the tools they need to live independently, provide for financial needs, and enjoy equal opportunities, announce a strategic alliance to improve the health outcomes of low-income men and women living with all types of disabilities – physical, sensory, cognitive, developmental and psychiatric. The two agencies are launching this initiative, Health Matters - which combines their expertise in housing, case management, health coverage navigation, entitlement advocacy and legal advocacy – to end barriers to care for affected New Yorkers with disabilities.

Goals of the alliance include ending barriers to health care for disabled New Yorkers who are often forced to use costly emergency and acute care because they are unable to easily access primary care or mental health services in their communities. Three key factors that increase emergency department care by adults with disabilities include lack of access to care and prescription medications, the complexity of individuals’ health profiles, and disability status itself.

Susan Dooha, Executive Director of CIDNY, describes the alliance: “Our partnership will help break through the barriers that low-income New Yorkers with disabilities face as they try to maintain their health.  Working with our partner Bailey House will ensure that people with the toughest health access challenges get prompt attention and services as a matter of course.”

Regina Quattrochi, Bailey House’s CEO, explains the objective of the collaboration: “We are excited to join forces with CIDNY to tackle health disparities often faced by New Yorkers living with disabilities. We know from the recent experience post Superstorm Sandy that some of the most vulnerable New Yorkers – the unstably housed, people with disabilities and the elderly – faced insurmountable barriers to obtaining critical care and services during a crisis. What’s more disturbing, however, is that many face the same insurmountable barriers even when the City is operating normally. Health Matters will serve as a model of what can be done when two agencies with strong track records join forces.”

Contact:

Bailey House

Lauren Pallies, Assistant Director, Community Health

(212) 633-2500 x332 or lpallies at baileyhouse.org

CIDNY

Margi Trapani, Director of Communications

646-442-4154 or mtrapani at cidny.org

 

Posted On: 02/13/2013

What would the Mayans do?

On Friday 12/21/12, some predict the end of the world, citing the end of the Mayan calendar. Others say that the Mayan calendar is infinite and that 12/21 signifies not the end but a new beginning. Perhaps the Mayans were saying change is good and that sometimes we have to let go of the box, not merely step out of it.

On Tuesday we learned of the death of Spencer Cox, one of the founders of Act-Up and TAG.  Spencer and many others in the early days of AIDS kicked the box aside and made the blueprint. They crafted it out of their anger, their desperation and their love.  For them and for Bailey House’s founders, silence and inaction were not choices.

On March 28th we will be celebrating our 30th anniversary by giving the “First Decade Award” to 30 individuals, who along with us made defiance and action the mantra. In 1983, when we started, holding someone dying of AIDS was an act of defiance in a room full of doctors dressed in Hazmat suits.  Providing someone dying of AIDS with permanent housing was considered a waste of resources – bureaucrats said they would die anyway. We kicked that box so hard it splintered into a thousand pieces – almost as many as there were Bailey House residents who proved them wrong.

We wish the Mayans were here to give us some insight, but since they are not we will create our own. As we move towards 12/21/12 and 2013, we’d like to quote our favorite seer – His Holiness the Dalai Lama: “It’s not enough to be compassionate. You must act.” We wish you and your loved ones a very happy holiday season and as you ring in the New Year we hope that you will put box kicking and making positive change on your list of 2013 resolutions. With your support they are at the top of ours.

Posted On: 12/20/2012

Why Mental Health for World AIDS Day?

Carrie from Homeland

Bailey House observes the 25th annual World AIDS Day by opening our first major expansion in over a decade – the new Behavioral Health Clinic in East Harlem, a neighborhood with the City’s highest rate of psychiatric hospitalizations and the second highest rate of HIV incidence. It will be housed at our Rand Harlan Center for Housing, Wellness and Community, and will provide a variety of mental health and other services by licensed therapists sensitive to the challenges of low-income people living with HIV/AIDS traumatized by poverty, violence, incarceration and chronic illnesses. The clinic will be LGBT inclusive, harm-reduction based, trauma-informed and open to all.

Why mental health services now? For 30 years we have watched stable housing transform lives. Whether in 1984 when AIDS was considered terminal and some residents lived only weeks or three weeks ago when some residents marked their 20 anniversary in our supportive housing. The miracle of a permanent home is clear.

Since we opened in 1983, and our clients started to lived longer, we also began to see what gets in the way. Depression, anxiety disorders, untreated bipolar or other chronic mental illness destabilize and are major barriers to accessing and staying in healthcare. Often these treatable illnesses, if left un-managed. are also a major barrier to housing retention, stability and the future.  They ruin lives.

As a fans of Carrie, the bipolar CIA agent on TV’s Homeland, know, treatment makes a powerful difference. Our Homeland heroine, when she’s stable, saves the country from clandestine terrorists. When she goes off medication, she’s her own worst enemy.  The good news is that like the fictional Carrie, millions of people live functional, successful lives with the help of good mental health care. Our current and future clients deserve no less.

We dedicate this opening to Rodger McFarlane, a legendary HIV/AIDS activist and one of the first board members of Bailey House. Four years ago, Rodger, after a brilliant career including positions in Navy Special Ops, GMHC, Broadway Cares and the Gill Foundation, took his own life.  The once brilliant man who we loved so much couldn’t see a future beyond his depression, physical or psychic pain. By opening this clinic today, we hope we can help others move past similar challenges to the point where life, stable housing, wellness and community are their future.

Posted On: 11/29/2012

Day 10: Bailey-Holt House Residents Want to Come Home

The 44 men and women living with AIDS who call Bailey-Holt House their home are distraught. It’s 10 days since their home was struck by Sandy. It’s 7 days that they have been separated from each other.

The Bailey-Holt House community is a microcosm of NYC … black, white, Latino, Asian, straight, gay, lesbian, transgender, young and old. Many lived on the street before, surviving a life of violence, despair, drug use and mental illness.  The glue that holds them together is community.

Scattered through NYC in evacuation shelters, temporary housing and long term care, residents are reliving the trauma of the past. Every day I get calls from them pleading to go back … at least to retrieve an item that will give some comfort. I have to say, “No”.

Patricia longs for the computer she abandoned that holds her photos; Peter needs his music to get through this time; Leon misses his favorite hoodie. It’s heartbreaking. I am stunned how each phone call tears me apart.

Bailey-Holt House is uninhabitable right now. We need to get it back.  I want good news for our folks. They deserve nothing less. “The future starts with a place to live” was never truer.

I would like to extend a special thank-you to Speaker Christine Quinn, whose attention has been instrumental in getting a quick early assessment of the damage to the building.  She and her staff have had our backs since the day before the storm.

Today, we still need your help to bring our friends back home.  The response so far has been remarkable, but we have much further to go.

Please make a donation today to the Bailey-Holt House Emergency Fund (BHEF): your pledge will go directly to finance extensive repairs to the building in the wake of Superstorm Sandy.

Thank you, as always, for your overwhelming support and friendship when we need you most.

Posted On: 11/08/2012

We Need a Little Help from Our Friends

We Need a Little Help From Our Friends…

It’s Day #6 post Hurricane Sandy and the outlook for Bailey-Holt House is grim. Although power was restored to most of the City, we’re learning that in a building like ours, it’s not as simple as turning on the lights.

The steps to recovery for Bailey-Holt House are excruciatingly complex and time-consuming. First we must obtain a 75,000 watt generator, which I’ve learned arrives on a flat bed truck because of its size. Then electricians have to hook up temporary lighting so a licensed debris removal company can clear damp, salt-water soaked debris from the basement and ground floor offices.

Next comes the hard part. Once debris is cleared, electricians and plumbers have to assess damages to major building systems from basement to roof and see if the elevator can be repaired. We have already been told to replace the two boilers in the basement. They, along with washers and dryers, sat in tidal basin water for 48 hours.

This process could take weeks or months. We have to order new equipment, which may be scarce, have it installed and possibly replace the electrical system and elevator. Residents cannot return until all of this is done.

We found temporary housing for all 44 of the men and women who reside at Bailey-Holt House but many of these accommodations are unsuitable long-term. Many of our folks not only have AIDS but also kidney, liver, pulmonary, cardiac diseases and cancer. Some have two or three. Several rely on life-prolonging dialysis, methadone, mental health services and drug treatment. Without full subway service and staff nearby, these services can be difficult to access.

Friends and family who offered a night or two of respite are tired. Some are asking our folks to leave. Many hosts too are poor and cannot afford to feed another mouth. One client reported that her ex-husband took her in only to demand she pay him. Our female and transgender clients are particularly vulnerable given the violence many have suffered in their past. For some, the only place to go is back to former friends or partners in situations where they may be exposed to domestic violence or drug use. The trauma of losing the one place they felt safe will take its toll.

Bailey House staff are working double-time to try to rehouse folks and find them the second and perhaps third placement in only six days. We have been hampered, like everyone else, with the loss of subway service and internet access. Cell phones are dead. Some City agency programs are also down or closed.

Everyone misses home, Bailey-Holt House that majestic mothership of AIDS housing that sits at the bottom of Christopher Street. Ironically its location across from the river that makes it magical was its Achilles heel. We will reopen, hopefully soon. We are survivors.

We are incredibly grateful to Speaker Christine Quinn and her amazing staff. They have been with us every step of the way. We also extend our thanks to Representative Jerrold Nadler, whose staff will help us start the hard work of filing for relief. More thanks goes out to the Imperial Court of NY, the first organization to donate funds, and to the M*A*C* AIDS Fund, which followed with a $25,000 grant pledge. You are our angels in the storm!

Please donate to help us bring our folks back home. $5, $10, $100 or $500 will help with the recovery efforts. Estimates run as high as $500,000 for repairs and that could grow. We need a little help from our friends.

Posted On: 11/05/2012

The New Behavioral Health Clinic at Bailey House

We are really excited to be opening a new behavioral health clinic in East Harlem in the Fall of 2012, at our headquarters on Park Avenue and E. 122nd Street.  If  you want to stay healthy, you have to first manage your emotional life.  Unmanaged depression, anxiety, etc. is a major barrier to engaging in HIV or Hepatitis C treatment, getting and keeping housing, engaging in a community and feeling good about one’s self.

We think it’s very cool that we will be the first clinic in the community to offer comprehensive behavioral health services targeted to everyone in the community, including people living with HIV/AIDS with histories of drug use, incarceration, or viral hepatitis; LGBTQ youth; families; and those who are unstably housed.  The clinic will be integrated into our Rand Harlan Center for Housing, Wellness and Community so anyone who comes in to see a therapist will have access to our food pantry, health and wellness program, computer lab and housing placement assistance.   Get involved now by making a donation.  There are lots of great naming opportunities, so don’t wait!  Please contact Cathy Krugman, Chief Development Officer, directly at (212) 633-2500 x455 if you are interested in getting involved.  Click here to donate.

Posted On: 08/08/2012

While New Orleans slept, an arsonist sent a message

Last Friday morning at 4 AM, when most of New Orleans was sleeping, one or more arsonists torched the offices of Women With A Vision (WWAV), a group run by activist women of color. Deon Haywood, the Executive Director, and the other women of WWAV and their legal team recently won a major victory against Louisiana’s “Crimes Against Nature” law. This law, which was resurrected by the New Orleans police post-Katrina, targets female sex workers and requires those convicted to register as sex offenders (“johns” do not have to register). These women must then pay hundreds of dollars annually to maintain the registration or be jailed. Once registered, women face losing their children, being denied employment, police harassment – the list tragically goes on.

The arsonist(s) knew what he was doing. He targeted rooms where WWAV holds women’s health and HIV education groups. He stacked up plastic replicas of breasts and vaginas used to teach women how to do self-exams, and ignited them. Silencing women is an age-old art. Often it is done with slurs, fists, rape and other violence. He just now added fire to the list. With bombings of abortion clinics in the South rising, it is of little surprise that someone or some group felt at liberty to teach WWAV a lesson by burning down their offices. Did he just mean to ignite fear in a community already struggling for healing? Was it punishment for the legal victory in March? Was it because WWAV dares to work with women , including transgender women, to help them obtain what they need to survive – housing, healthcare, support?  We may never know exactly, but the overall message is clear.

In the HIV/AIDS community we all know how to turn a message on its head and make it our own. HIV+ women and women at risk have been doing that for almost 30 years as the HIV/AIDS epidemic unfolded around them and then left them behind.  Clinical trials have excluded them, new breakthroughs have often eluded them and neither federal policy nor funding has reflected their needs. Organizations like WWAV, often female-led, have struggled to serve women marginalized by poverty, homelessness, HIV and gender-based health disparities – but they have been marginalized too.  They have operated on a shoestring. They have always been vulnerable. Fire isn’t the only way used to silence them. Funding cuts or no funding at all silences them too.

We join the women of WWAV in fighting for the lives of marginalized women. We support their rebirth. We want them to expand. We ask funders both public and private to make funding for women’s services a priority.  By doing this, we send a message loud and clear that that we won’t allow women struggling for their lives to be left behind again.

In the next few weeks, we will be posting updates on our site. To date, neither the New Orleans police nor the fire department has followed-up with an investigation. WWAV is now seeking help from the US Department of Justice to investigate this as a potential “hate crime”.  When an arsonist breaks into the offices of fierce women of color, sets fire to HIV education materials and torches plastic replicas of vaginas and breasts, we’d say the evidence is clear. Stay tuned.

Posted On: 06/01/2012

Past Events

Some of the past events sponsored by Bailey House.

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

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.

 

Posted On: 03/10/2014

James Lister’s 30% Story
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.

 

Posted On: 02/24/2014

When seeing a doctor is not enough

bartak brick wall
Recently Kaiser Health News published a story about the concerns some people living with HIV/AIDS have about Obamacare.  As the Affordable Care Act is implemented, many have questions about how current insurance coverage may be affected and whether funding streams like the Ryan White Care Act will survive.

These are all very appropriate concerns as the nation rolls out the most dramatic change in healthcare delivery since the 1980s’ introduction of a Medicare payment system that based reimbursement on algorithms by patient’s principal diagnosis, ICD diagnoses, gender, age, treatment procedure, discharge status and the presence of complications or co-morbidities. While the “Diagnostically Related Groups,” as this system was called, resulted in many positive outcomes, there were also cases where seriously ill stroke patients were sent home a day after admission, sometimes before they fully recovered, because the hospital could no longer get paid for a typical 4-5 day stay. Unintended kinks in new systems are not all that uncommon.

Since we have 31 years of experience working with low-income people living with HIV/AIDS, we have our own views on all of this.  We strongly believe that as this revolution in healthcare unfolds, people living with HIV/AIDS and all other chronic illnesses need safety net services and advocacy that will ensure continued care access and positive health outcomes.  As one man interviewed in the Kaiser article stated: “”My medical is very well-managed,” said Land, an insurance adjuster before he retired in 1993 because of his illness. “But I also need that wrap-around care that helps me live every day. In my 15 minutes with the doctor…I am not going to get that.”” We couldn’t agree more.

Comprehensive care including stable housing, mental health services, food and healthcare coordination are the foundation for surviving and thriving.  Bailey House built this model in the early epidemic because it made sense. Now after 31 years we have lots of data to prove it. Let’s make sure that as the nation seeks to cut costs, it doesn’t disassemble what makes the rest work.

To read the full Kaiser News article, click here.

 

Posted On: 01/10/2014

Announcing “Health Matters”: A Collaboration Between Bailey House & CIDNY

BH LOGO

cidny

Bailey House, which has served low-income homeless and unstably housed men, women and families living with and affected by HIV/AIDS since 1983 and The Center for Independence of the Disabled, NY (CIDNY), a leading advocate for people with disabilities that has worked for over 30 years to remove physical and social barriers and to ensure that people with disabilities have the tools they need to live independently, provide for financial needs, and enjoy equal opportunities, announce a strategic alliance to improve the health outcomes of low-income men and women living with all types of disabilities – physical, sensory, cognitive, developmental and psychiatric. The two agencies are launching this initiative, Health Matters - which combines their expertise in housing, case management, health coverage navigation, entitlement advocacy and legal advocacy – to end barriers to care for affected New Yorkers with disabilities.

Goals of the alliance include ending barriers to health care for disabled New Yorkers who are often forced to use costly emergency and acute care because they are unable to easily access primary care or mental health services in their communities. Three key factors that increase emergency department care by adults with disabilities include lack of access to care and prescription medications, the complexity of individuals’ health profiles, and disability status itself.

Susan Dooha, Executive Director of CIDNY, describes the alliance: “Our partnership will help break through the barriers that low-income New Yorkers with disabilities face as they try to maintain their health.  Working with our partner Bailey House will ensure that people with the toughest health access challenges get prompt attention and services as a matter of course.”

Regina Quattrochi, Bailey House’s CEO, explains the objective of the collaboration: “We are excited to join forces with CIDNY to tackle health disparities often faced by New Yorkers living with disabilities. We know from the recent experience post Superstorm Sandy that some of the most vulnerable New Yorkers – the unstably housed, people with disabilities and the elderly – faced insurmountable barriers to obtaining critical care and services during a crisis. What’s more disturbing, however, is that many face the same insurmountable barriers even when the City is operating normally. Health Matters will serve as a model of what can be done when two agencies with strong track records join forces.”

Contact:

Bailey House

Lauren Pallies, Assistant Director, Community Health

(212) 633-2500 x332 or lpallies at baileyhouse.org

CIDNY

Margi Trapani, Director of Communications

646-442-4154 or mtrapani at cidny.org

 

Posted On: 02/13/2013

What would the Mayans do?

On Friday 12/21/12, some predict the end of the world, citing the end of the Mayan calendar. Others say that the Mayan calendar is infinite and that 12/21 signifies not the end but a new beginning. Perhaps the Mayans were saying change is good and that sometimes we have to let go of the box, not merely step out of it.

On Tuesday we learned of the death of Spencer Cox, one of the founders of Act-Up and TAG.  Spencer and many others in the early days of AIDS kicked the box aside and made the blueprint. They crafted it out of their anger, their desperation and their love.  For them and for Bailey House’s founders, silence and inaction were not choices.

On March 28th we will be celebrating our 30th anniversary by giving the “First Decade Award” to 30 individuals, who along with us made defiance and action the mantra. In 1983, when we started, holding someone dying of AIDS was an act of defiance in a room full of doctors dressed in Hazmat suits.  Providing someone dying of AIDS with permanent housing was considered a waste of resources – bureaucrats said they would die anyway. We kicked that box so hard it splintered into a thousand pieces – almost as many as there were Bailey House residents who proved them wrong.

We wish the Mayans were here to give us some insight, but since they are not we will create our own. As we move towards 12/21/12 and 2013, we’d like to quote our favorite seer – His Holiness the Dalai Lama: “It’s not enough to be compassionate. You must act.” We wish you and your loved ones a very happy holiday season and as you ring in the New Year we hope that you will put box kicking and making positive change on your list of 2013 resolutions. With your support they are at the top of ours.

Posted On: 12/20/2012

Why Mental Health for World AIDS Day?

Carrie from Homeland

Bailey House observes the 25th annual World AIDS Day by opening our first major expansion in over a decade – the new Behavioral Health Clinic in East Harlem, a neighborhood with the City’s highest rate of psychiatric hospitalizations and the second highest rate of HIV incidence. It will be housed at our Rand Harlan Center for Housing, Wellness and Community, and will provide a variety of mental health and other services by licensed therapists sensitive to the challenges of low-income people living with HIV/AIDS traumatized by poverty, violence, incarceration and chronic illnesses. The clinic will be LGBT inclusive, harm-reduction based, trauma-informed and open to all.

Why mental health services now? For 30 years we have watched stable housing transform lives. Whether in 1984 when AIDS was considered terminal and some residents lived only weeks or three weeks ago when some residents marked their 20 anniversary in our supportive housing. The miracle of a permanent home is clear.

Since we opened in 1983, and our clients started to lived longer, we also began to see what gets in the way. Depression, anxiety disorders, untreated bipolar or other chronic mental illness destabilize and are major barriers to accessing and staying in healthcare. Often these treatable illnesses, if left un-managed. are also a major barrier to housing retention, stability and the future.  They ruin lives.

As a fans of Carrie, the bipolar CIA agent on TV’s Homeland, know, treatment makes a powerful difference. Our Homeland heroine, when she’s stable, saves the country from clandestine terrorists. When she goes off medication, she’s her own worst enemy.  The good news is that like the fictional Carrie, millions of people live functional, successful lives with the help of good mental health care. Our current and future clients deserve no less.

We dedicate this opening to Rodger McFarlane, a legendary HIV/AIDS activist and one of the first board members of Bailey House. Four years ago, Rodger, after a brilliant career including positions in Navy Special Ops, GMHC, Broadway Cares and the Gill Foundation, took his own life.  The once brilliant man who we loved so much couldn’t see a future beyond his depression, physical or psychic pain. By opening this clinic today, we hope we can help others move past similar challenges to the point where life, stable housing, wellness and community are their future.

Posted On: 11/29/2012

Day 10: Bailey-Holt House Residents Want to Come Home

The 44 men and women living with AIDS who call Bailey-Holt House their home are distraught. It’s 10 days since their home was struck by Sandy. It’s 7 days that they have been separated from each other.

The Bailey-Holt House community is a microcosm of NYC … black, white, Latino, Asian, straight, gay, lesbian, transgender, young and old. Many lived on the street before, surviving a life of violence, despair, drug use and mental illness.  The glue that holds them together is community.

Scattered through NYC in evacuation shelters, temporary housing and long term care, residents are reliving the trauma of the past. Every day I get calls from them pleading to go back … at least to retrieve an item that will give some comfort. I have to say, “No”.

Patricia longs for the computer she abandoned that holds her photos; Peter needs his music to get through this time; Leon misses his favorite hoodie. It’s heartbreaking. I am stunned how each phone call tears me apart.

Bailey-Holt House is uninhabitable right now. We need to get it back.  I want good news for our folks. They deserve nothing less. “The future starts with a place to live” was never truer.

I would like to extend a special thank-you to Speaker Christine Quinn, whose attention has been instrumental in getting a quick early assessment of the damage to the building.  She and her staff have had our backs since the day before the storm.

Today, we still need your help to bring our friends back home.  The response so far has been remarkable, but we have much further to go.

Please make a donation today to the Bailey-Holt House Emergency Fund (BHEF): your pledge will go directly to finance extensive repairs to the building in the wake of Superstorm Sandy.

Thank you, as always, for your overwhelming support and friendship when we need you most.

Posted On: 11/08/2012

We Need a Little Help from Our Friends

We Need a Little Help From Our Friends…

It’s Day #6 post Hurricane Sandy and the outlook for Bailey-Holt House is grim. Although power was restored to most of the City, we’re learning that in a building like ours, it’s not as simple as turning on the lights.

The steps to recovery for Bailey-Holt House are excruciatingly complex and time-consuming. First we must obtain a 75,000 watt generator, which I’ve learned arrives on a flat bed truck because of its size. Then electricians have to hook up temporary lighting so a licensed debris removal company can clear damp, salt-water soaked debris from the basement and ground floor offices.

Next comes the hard part. Once debris is cleared, electricians and plumbers have to assess damages to major building systems from basement to roof and see if the elevator can be repaired. We have already been told to replace the two boilers in the basement. They, along with washers and dryers, sat in tidal basin water for 48 hours.

This process could take weeks or months. We have to order new equipment, which may be scarce, have it installed and possibly replace the electrical system and elevator. Residents cannot return until all of this is done.

We found temporary housing for all 44 of the men and women who reside at Bailey-Holt House but many of these accommodations are unsuitable long-term. Many of our folks not only have AIDS but also kidney, liver, pulmonary, cardiac diseases and cancer. Some have two or three. Several rely on life-prolonging dialysis, methadone, mental health services and drug treatment. Without full subway service and staff nearby, these services can be difficult to access.

Friends and family who offered a night or two of respite are tired. Some are asking our folks to leave. Many hosts too are poor and cannot afford to feed another mouth. One client reported that her ex-husband took her in only to demand she pay him. Our female and transgender clients are particularly vulnerable given the violence many have suffered in their past. For some, the only place to go is back to former friends or partners in situations where they may be exposed to domestic violence or drug use. The trauma of losing the one place they felt safe will take its toll.

Bailey House staff are working double-time to try to rehouse folks and find them the second and perhaps third placement in only six days. We have been hampered, like everyone else, with the loss of subway service and internet access. Cell phones are dead. Some City agency programs are also down or closed.

Everyone misses home, Bailey-Holt House that majestic mothership of AIDS housing that sits at the bottom of Christopher Street. Ironically its location across from the river that makes it magical was its Achilles heel. We will reopen, hopefully soon. We are survivors.

We are incredibly grateful to Speaker Christine Quinn and her amazing staff. They have been with us every step of the way. We also extend our thanks to Representative Jerrold Nadler, whose staff will help us start the hard work of filing for relief. More thanks goes out to the Imperial Court of NY, the first organization to donate funds, and to the M*A*C* AIDS Fund, which followed with a $25,000 grant pledge. You are our angels in the storm!

Please donate to help us bring our folks back home. $5, $10, $100 or $500 will help with the recovery efforts. Estimates run as high as $500,000 for repairs and that could grow. We need a little help from our friends.

Posted On: 11/05/2012

While New Orleans slept, an arsonist sent a message

Last Friday morning at 4 AM, when most of New Orleans was sleeping, one or more arsonists torched the offices of Women With A Vision (WWAV), a group run by activist women of color. Deon Haywood, the Executive Director, and the other women of WWAV and their legal team recently won a major victory against Louisiana’s “Crimes Against Nature” law. This law, which was resurrected by the New Orleans police post-Katrina, targets female sex workers and requires those convicted to register as sex offenders (“johns” do not have to register). These women must then pay hundreds of dollars annually to maintain the registration or be jailed. Once registered, women face losing their children, being denied employment, police harassment – the list tragically goes on.

The arsonist(s) knew what he was doing. He targeted rooms where WWAV holds women’s health and HIV education groups. He stacked up plastic replicas of breasts and vaginas used to teach women how to do self-exams, and ignited them. Silencing women is an age-old art. Often it is done with slurs, fists, rape and other violence. He just now added fire to the list. With bombings of abortion clinics in the South rising, it is of little surprise that someone or some group felt at liberty to teach WWAV a lesson by burning down their offices. Did he just mean to ignite fear in a community already struggling for healing? Was it punishment for the legal victory in March? Was it because WWAV dares to work with women , including transgender women, to help them obtain what they need to survive – housing, healthcare, support?  We may never know exactly, but the overall message is clear.

In the HIV/AIDS community we all know how to turn a message on its head and make it our own. HIV+ women and women at risk have been doing that for almost 30 years as the HIV/AIDS epidemic unfolded around them and then left them behind.  Clinical trials have excluded them, new breakthroughs have often eluded them and neither federal policy nor funding has reflected their needs. Organizations like WWAV, often female-led, have struggled to serve women marginalized by poverty, homelessness, HIV and gender-based health disparities – but they have been marginalized too.  They have operated on a shoestring. They have always been vulnerable. Fire isn’t the only way used to silence them. Funding cuts or no funding at all silences them too.

We join the women of WWAV in fighting for the lives of marginalized women. We support their rebirth. We want them to expand. We ask funders both public and private to make funding for women’s services a priority.  By doing this, we send a message loud and clear that that we won’t allow women struggling for their lives to be left behind again.

In the next few weeks, we will be posting updates on our site. To date, neither the New Orleans police nor the fire department has followed-up with an investigation. WWAV is now seeking help from the US Department of Justice to investigate this as a potential “hate crime”.  When an arsonist breaks into the offices of fierce women of color, sets fire to HIV education materials and torches plastic replicas of vaginas and breasts, we’d say the evidence is clear. Stay tuned.

Posted On: 06/01/2012

HIV Prevention: A new day is dawning, but a pill is not a panacea

Last week, amid much fanfare, an FDA Advisory Committee unanimously recommended that Gilead Sciences, the maker of Truvada, a drug previously used to treat AIDS, be permitted to market it to prevent HIV infection. Findings from a handful of clinical trials, including one involving discordant couples where one person is negative and the other positive, showed promising results. The outcomes were best when used properly (HIV negative partner adhered to a drug regime and the couple used condoms). The results of the clinical trial involving women was not so promising.

While the advent of medical-based prevention is a reason for great hope in reducing the number of new infections each year, medicine alone has never been a panacea in the HIV pandemic. What we’ve learned in 30 years of the epidemic is that while actual HIV transmission may be pretty straightforward, the social and psychosocial “back story” is not.

A significant body of evidence now shows that the “structural drivers” of the epidemic – things that cause people to engage in high-risk behaviors such as unprotected sex or syringe sharing – are as deep and complex as it gets.  Poverty, homelessness, trauma, lack of access to healthcare, racism, homophobia, domestic violence, gender disparities, criminalization of HIV transmission and drug use are just a few.  Many of these also prevent individuals from adhering to medication whether it’s antibiotics or insulin.  HIV prevention is as complex as the things that make it necessary. Can we really just throw a pill at it?

While hopefully Truvada will be useful in the toolbox of HIV prevention, we cannot make the mistake that Magic Johnson did a decade ago when he announced he was cured. We cannot afford for young people to again hear that a drug will cure AIDS or prevent it. We cannot dumb down HIV prevention when so much is still at stake.

Posted On: 05/25/2012