As a member of the Positive Women’s Network steering committee, I am extremely honored to be asked to sit on a national committee that created a curriculum for teaching providers about the intersection between Intimate Partner Violence and HIV.  Now, that is a mouthful, and I have had some very interesting responses to that statement, including “Is there an intersection? How does violence relate to HIV?”

Let’s face it, both are public health problems and neither is engaging dinner table conversation.  Sitting on this committee, I have learned so much, both from fellow HIV/AIDS advocates, but more importantly from people who work in various aspects of the gender based violence fields.  I have learned about the structure of organizations, I have learned about how women’s shelters may, or more likely, may not honor a woman’s right to privacy and confidentiality, and I have learned some of the places where people within each field do not agree with each other!

More importantly, I am learning that while violence against women is a HUGE problem within the HIV community, with extremely clear links between violence and transmission, I am horrified that nobody talks about it!  So I started digging a little bit.

In 2010, the World Health Organization released a document, which states “over a decade of research from countries in different regions of the world documents an undeniable link between violence against women (VAW) and HIV infection. The relationship between VAW and HIV risk is complex, and involves multiple pathways, in which violence serves both as a driver of the epidemic, and at times a consequence of being HIV positive.”

Many people view the intersection only as a direct link… for instance in a recently released report by University of Pennsylvania, it was found that, “The relationship between HIV and partner abuse is significant: In the U.S., at least 12% of HIV infections among women are a result of partner abuse.” Think about that number… that is HUGE. That does not include women who have been raped, sexually assaulted, physically abused or controlled by intimate partners and/or strangers who are now HIV-positive.  And I am left wondering, who will sponsor THAT study?   It also does not speak to the women who experience violence due to disclosure of their HIV status. I want more data!

You might be asking yourself, why does this matter?  To me, it is personal, and I will get into that in a minute, but back to that WHO report, where it is pointed out that the BIGGEST link occurs in longer lasting exposure to violence and it’s effect on women’s choices and decisions. Let’s face it, if you are worried about your safety, you are NOT having conversations about safer sex practices.  Women’s lives are complex, and the links between violence and HIV transmission run deep.  It is important because this link can inform our research and prevention messages!  And it is important because NOW I look at a risk assessment (you know, the little sheet of questions you have to answer to get tested for HIV) there is NO mention of violence, even though a clear risk has been established.

In that same WHO report, one recommendation was: “The United Nations (UN) should support and advocate with young women and men for active HIV prevention that specifically incorporates gender-based violence prevention and gender-equality perspectives.”  And as usual, in this country of “equal rights for all,” women are left out of the policy decisions and even our own risk is not recognized!  In this age where women’s bodies are political fodder and soundbites, it is important because we MATTER!  Without conversation, how can we possibly move on?

I mentioned before that it is personal.  Through high school, I was in an abusive relationship.  I tend to think of this time of my life as that of a totally different person, but in reality, I was set up.  I pulled myself out of that relationship with a LOT of work.  I learned about myself, about co-dependency, and women’s needs to make everything ok for everyone else, at a cost to our own health and bodies, and finally, I walked away.  I went away to college, fell in love with a great guy, who was unknowingly HIV infected. The point is this. The intersection between violence and HIV sometimes is direct, many times it is not.  If a woman becomes accustomed to not valuing her body, her sexuality, and herself, then she is at risk.  And that is what happened to me.  I knew a little, but I didn’t know enough.  Nobody talked about ANY of this, many of us simply had to figure it out as we went. NOW these conversations have started, but as usual we need to speak louder, more clearly, and make sure that people HEAR us.  Right now, in today’s political climate,  we have a unique opportunity to make our voices heard. We need to make sure that women are COUNTED when these conversations happen…or crash the party. Whatever works.

Resources:
Sexual Violence, Stalking, and Intimate Partner Violence widespread in U.S., CDC Report, Dec 2011

Violence Against Women and HIV/AIDS, World Health Organization

I’m puzzled by the question of what the sexual rights of HIV+ transgender women are. To me, as an openly HIV+ transwoman, the answer is as clear as glass. Simply put, our rights to sexuality and sexual expression are the same as any other persons, male or female.

Just because transwomen don’t fit into culturally predefined standards for male or female expression or behavior, doesn’t mean that we lose the right to have an independent sexual identity. It does, however, mean that society at large will view our sexual rights as being less than their own, by and large, and that the general population sometimes needs to be reminded of what equality for all would really look like. With that in mind, here are some points to illustrate how HIV+ transwomen have right to make the same choices as every other person on the planet.

The number one thing that all women and transwomen share is the right to choice in their own life. We have a right, just as every other woman and man, to make the best decisions for ourselves about our own bodies. It’s natural for people to be curious about transgender people, as we’re certainly not the standard, but it does not infer the right to anyone to question a transwoman about her choices and her body. She alone has the right to determine what she does with her body. This includes both sexual partners and her choices on hormones/surgeries.

Living with HIV does not mean a transwoman cannot be on hormone therapy or choose to have any number of surgical procedures done (more on hormones, surgical procedures and trans health here), but these are all decisions that are the individual’s own to make and no one else’s. Some transwomen will choose to take hormones – some won’t. Some transwomen will choose to have some type of surgery – which can include, but is by no means limited to, sexual reassignment surgery (SRS) or breast augmentation – and some will not. Each person has the right to make their own decisions on these matters, and that’s not something generally open for discussion. Nor can anyone tell her what is the “correct” way for her to express herself sexually – this too is her decision.

All women, including transgender women, have the right to determine their own partners, of any gender, without fear or judgment for doing so. There is no “right way” when it comes to sexuality, especially when talking about transgender women. We have the right to that individuality, just as we have a right to the air which fills our lungs. Some transgender women love women, some love men, some love both, and some love neither. The right to love and be loved is not up for public debate. It simply is, and should be accepted as such.

Since HIV+ transwomen may choose to be with women sexually, it’s important that our community has access to comprehensive education around HIV and family planning. This includes having access condoms, as well as supports in place to help HIV+ transwomen make educated decisions around family planning and conception. While being on hormone therapy can cause infertility, it’s not a guarantee that pregnancy could not happen if condoms aren’t used correctly by someone with male genitalia.

Perhaps the more important aspect of condom access affects all people – male, female, and transgender, alike – is that condom access can decrease the likelihood of HIV infection. If HIV+ transwomen have access to free condoms, and are shown how to properly use them, it can help them to be empowered to use condoms with their sexual partners.

Many transwomen find themselves in a situation where they must perform sex work in order to survive. In fact, that’s one of the many socioeconomic drivers which keeps the levels of infection in our community so high in the first place. By providing these women with tools, like condoms, they then have what they need to try to prevent spreading HIV to their clients or from acquiring other infections from them. HIV+ transwomen are often in a position where sex work is the only viable option for self-preservation, and they have the right to protect themselves and others as best they can.

Yet due to the marginalization from society and other driving factors which force many transwomen into sex work, many transwomen are victims of sexual violence at some point in their lives. Just like any woman or man who’s been sexually assaulted or raped, transwomen have the right to help in this situation, yet oftentimes the police or other authorities are not considered places of sanctuary and help for transwomen. Many times the police or other authorities have ridiculed or harassed transwomen in need of police assistance, often in times of crisis for the individual transwoman who’s been the victim. The authorities may not believe her, or will subject her to more public humiliations, such as insisting on using inappropriate names, either legal names or otherwise, and in general, further causing more damage to a person who’s already been hurt. In places where HIV disclosure laws also stand, there is even potential for punishment against the victim for not disclosing their status before their attack. These factors, among many others, all contribute to HIV+ transwomen feeling as if they’ve lost their rights to fair and equatable treatment under the law, especially in cases such as rape or sexual assault.

Another way we can choose to protect HIV+ transgender women is through providing clean needle access. Just like dealing with drug addictions, which is also a peril faced by many transwomen, having access to clean needles can greatly reduce the number of infections in a given area. In the transgender community, transwomen will use needles for injecting hormones and if clean needles are unavailable, people will share them, despite the dangers. Reusing needles can be dangerous on a number of levels, and sharing hormone needles is not always viewed or understood by the community itself as being as dangerous a choice it can be.

Perhaps the greatest choice and challenge for HIV+ transwomen is around disclosure. In many states, the laws around disclosure are quite severe, to the extent that it is law in some states to disclosure your HIV status before sex, with harsh penalties for not doing so. Thankfully this is not the case in every state – so be sure to know your local laws. But transwomen also face the challenge of disclosing their gender history to potential partners. This task is never an easy one to do and it can often be filled with hardships and disappointments. Not every potential partner will be able to accept a trans person as a sexual partner, just as not everyone can accept having a sexual partner with HIV, but the right to disclose any part of one’s status should remain with the individual.

Only each individual can know when, where, and how is the right way for them to tell their partner or potential partner(s) about both their HIV status and their gender history. This also means that HIV+ transwomen have the right not to tell everything about themselves to everyone, including their sexual partners. Many times, for many different reasons, disclosing something so personal about oneself, such as being HIV+ or being a transwoman, could put an individual in grave danger. For a community already marginalized by mainstream society, this is reason enough for us to have the right to choose.

Privacy really is the ultimate right for all HIV+ people, transgender or not. We have the right to share our stories, our fears and our experiences, just as much as we have a right to keep them to ourselves. No one should be able to force anyone to overexpose their personal life, especially around matters as personal and sensitive as gender and HIV status. Many people who aren’t living with HIV or who aren’t transgender feel that they will always have the right to fulfill their own curiosity about the differences between us all. And while I celebrate their curiosity, I wish it were more widely known that every human being deserves privacy when it comes to their sex life. Whether or not we choose to be open or to share whatever details we want with other is always, and should always stay, a matter of personal choice.

Resources:
Fire: Sparking the flames in each other – An Art/Resource Zine by and for Southern Lesbian, Gay, Bi, Trans, Same Gender Loving, questioning Youth and our Allies
Harm Reduction Coalition - resources and info on clean needle access, Hep C, HIV, and more!
Positive Justice Project - read more about HIV Criminalization Laws and how they impact people in your state

Count HIV+ women in on Valentine’s Day! HIV+ women have a right to healthy sex lives, women‐centered methods to prevent transmission and healthy relationships free from violence. An expression of love for women living with HIV is supporting our rights to our sexuality. U.S. Positive Women’s Network commemorates Valentine’s Day as a day to uphold the rights of HIV+ women to have safe and satisfying sexual lives!

Talking points:

• All HIV+ women have the right to pleasurable and safe sex without fear of judgment
• HIV+ women have a right to safe sex, which includes comprehensive women‐centered health care, prevention options that women can control, and freedom from intimate partner violence.
• HIV+ women have a right to pleasurable sex. An HIV diagnosis does not equate to the end of a woman’s sexual life and satisfaction.
• HIV+ women have a right to safe sex. Employment discrimination based on HIV status and the inability to work and make a living wage can cause women to engage in sex for money, housing and food. This puts women at more risk for violence and the inability to negotiate safe sex.
• HIV+ women have a right to choose when and how they disclose their HIV status to their partners.
• Count HIV+ women in prevention! Telling women to abstain or asking women to tell their partners to wear a condom is not enough to protect women. Women will be safe when the overall quality of our lives and the lives of our loved ones are uplifted and when we have a variety of ways to protect ourselves, including methods that don’t require our partner’s knowledge or consent.
• The United Nations addresses putting an end to Violence Against Women as a critical to curbing HIV transmission. Cut violence against women as a cause and causality of HIV infection.
• 1 in 4 women have been a victim of severe physical violence by an intimate partner in her lifetime, according to the CDC’s report that came out in Dec. 2011.
• Almost 70% of female victims experienced some form of intimate partner violence for the first time before the age of 25, according to the CDC’s report that came out in Dec. 2011.
• Nearly 1 in 5 women have been raped at some time in her life, 80% of which experienced rape before the age of 25 according to the CDC’s report that came out in Dec. 2011.
• Transgender and queer‐identified women experience increased cases of violence.
• Count HIV+ women in the services! HIV+ women are at higher risk of gynecological complications, yet HIV providers rarely discuss and provide sexual health care.
• Women behind bars experience little to no sexual healthcare and counseling.
• HIV+ women in the U.S. receive little or substandard sexual healthcare and information on how to protect themselves and their partners.
• Abstinence‐only education violates the rights of all women to life saving information.

Photo credit: Nana Kofi Nti

By Naina Khanna

The International AIDS Conference is returning to the United States after a 23-year absence! We hope many of you are planning to attend AIDS 2012 in Washington, DC July 22-27, 2012.  But whether or not you plan to attend the actual conference – hubs are a way to expand the conference’s ability to reach your community.

Q: What’s an AIDS 2012 “Hub”?
A: A hub is a mini-conference held during or after the International AIDS Conference in your local community. It provides an opportunity to engage local leaders in a discussion and dialogue about timely issues related to HIV. It’s also a way to increase visibility of HIV issues in local media, build or strengthen key relationships and coalitions, and hold elected officials accountable on their promises to address the epidemic.

Q: How do hubs work?
A: Selected sessions from the international conference in Washington DC will be recorded or webstreamed (meaning your can view it from computer via the internet) free of charge and can be screened by hub organizers.  Organizers can then moderate a community discussion or panel with local and regional experts to examine how that session may be relevant to the local HIV response.

Q: How do I set up a hub?
A: All the information you need is available on the AIDS 2012 website: www.aids2012.org. Hub applications will open in March 2012.  If you’re interested in hosting a women-focused hub, PWN would love to support you!  Email our International AIDS Conference Coordinator – Ijeoma Ude: iude@womenhiv.org.

Naina Khanna is PWN’s Coordinator based in Oakland, CA.

Andrea Lamour-Harrington, speaks at Philadelphia’s Transgender Day of Remembrance, highlighted in the Gender Sticker Film Project. The Project highlights the realities faced by the trans community in Philadelphia. Search for “Gender Sticker Film Project” online to watch the 9 minute video.

By Andrea Lamour-Harrington

I live in the fair city of Philadelphia, PA – “the city of brotherly love and sisterly affection.” Now let me elaborate on just how loving we are. I am a member of RAGE (Riders Against Gender Exclusion), a group of trans men and women who have banded together to bring justice to our community. The main focus of RAGE is to bring attention to the discrimination against the trans community by SEPTA, Philadelphia’s public transportation system – the only means of transportation for many Philadelphians.

Our trans community is being attacked in a very open and legal way. But may I remind you, that just because something is legal does not make it fair and just. It is SEPTA’s practice to use gender markers, “F” for female and “M” for male, on their monthly pre-paid transit passes. SEPTA is the only public transportation system in the entire U.S. to do this! Their reason? To prevent anyone from sharing their pass with others. SEPTA has made it a practice to humiliate trans men and women by bullying them when they get on the bus in front of other passengers. For example, when a trans woman uses a pass with a “F” but the driver does not believe you are a biological woman, they have the right to deny a passenger a ride if they do not pay a cash fair or use a token. Similarly, if you identify as a female, but your transit pass says “M,” or you identify as male, but your transit pass says “F,” they have the right to deny a ride.

This is more than a trans issue. Since when is it a just procedure to judge anyone based on appearance? Just imagine how humiliating it is to be out-ed in front of an entire bus or train. The fear alone puts trans woman and men in jeopardy of not seeking medical care, not being on time for job interviews, or for work. Every time an HIV-positive person misses an appointment, it puts their life at risk.

RAGE has made a valiant effort to stop this injustice by holding many peaceful demonstrations, writing letters to government authorities, and holding press conferences. Support us by going to our website (phillyrage.org or contact PWN) and becoming a RAGE member, signing our petition, or attend a meeting if you live in Philly!

Andrea Lamour-Harrington is the Community PROMISE Coordinator at the Colours Organization, a PWN Steering Committee Member, and RAGE advocate. She is based in Philadelphia, PA.

OAKLAND, Calif. – Major medical breakthroughs over the past year in the treatment of HIV/AIDS are setting off some surprising alarm bells.

While praised for their life-saving potential, they are causing a change in the dynamics of HIV/AIDS care – a shift that may squeeze out social services needed to support patients while they’re in treatment.

The focus in treatment is shifting increasingly towards HIV/AIDS medications and preventative strategies, such as Pre-Exposure Prophylaxis (PrEP) and HPTN 052.

At a recent forum in Oakland, attendees questioned how the new HIV medicines would directly affect their lives.

“It’s exciting, but will it help save lives in our communities?” asked Deborah Royal, a nurse practitioner at East Bay AIDS Center.

Providers and patients agree that advances in medication and a focus on prevention are positive steps towards treating the disease and slowing disease transmission, but also emphasize the importance of what they call “psychosocial” factors in determining whether a person starts and stays in treatment.

“The easy part is prescribing the medication, but how is the patient going to get the medications paid for?” asked Dr. Royce Lin, an HIV specialist who serves on the board of the Asian and Pacific Islander Wellness Center (APIWC). He noted, “if someone is monolingual, if someone is undocumented they may never even make it in the first place.”

Dr. Monica Gandhi, an HIV and primary care provider at Ward 86, one of the oldest and largest HIV/AIDS clinics in the country, pointed to several barriers that commonly prevent female patients from adhering to treatment protocols. “Gender based violence, poverty, social instability around taking care of children and not having social supports themselves prevent women from staying in treatment.”

When 24-year-old HIV positive Berkeley resident Xavier Erguera was couch-surfing while in search of a permanent home last summer he went two months without taking his medications, the longest stretch since he began treatment, “My biggest concern wasn’t taking my meds, but finding where I was going to sleep and where my next meal was. Once my life stabilized I could start taking care of myself again.”

“Health is not your top priority when you’re on the streets,” declared Loren Jones, a 60-year-old Berkeley resident who was homeless when she tested positive for HIV 28 years ago.

Jones commented on the need for peer advocates to help patients navigate the complex medical system, “There’s only so many things that one person can handle, especially when they have no money. You need services where someone streamlines paperwork for you and helps you get through the process without making you feel bad about yourself.”

The Pendulum Swings Toward Treatment, Not Social Services

The U.S. Department of Health and Human Services will soon release updated HIV treatment guidelines. The expectation is that the new guidelines are likely to recommend that patients begin treatment sooner than is the case now.

“The pendulum swing towards earlier treatment could come at the expense of other services,” said Lin. “Prevention efforts through education have been reduced and support to CBOs is significantly down. Many organizations have had to merge or close down.”

Service providers also question how they will handle the anticipated increase in patients steered to earlier treatment without an increase in funds.

“Already at our large clinics we’re feeling at capacity and our concern is we’re going to need to provide services to larger numbers of people with dwindling resources,” said Royal. “It’s a miracle that we have these drugs and yet that is not going to solve this issue.”

The APIWC has faced both a reduction in case managers as well as drastic funding cuts to their training programs to teach providers how to better serve their positive patients.

“We used to do over 20 trainings, now we do five,” said Jane Daludugan, the community development program manager at APIWC.

According to Lin who sees patients at the Tom Waddell Health Center and Tenderloin Health, “One of the main places we’ve felt cuts is in the reduction in the wrap-around services that try to engage and bring patients into care and to support patients as they are going through their treatment.”

Lin continued, “There is nothing here that is non-essential. What do you do when there isn’t fat to trim?”

Loren Jones was diagnosed with HIV 28 years ago. A relatively low viral load meant that for a long time, Jones, a 59-year-old African American woman, didn’t feel sick at all. “I ignored it completely,” she says of the first few years of her illness. “I was the kind of person who had always been very healthy. I don’t catch cold very much, even now. I basically tried to pretend it wasn’t there.”

It was only three years ago that Jones went on any sort of medication for the disease. The cost of her medication, a once-daily combination drug called Atripla, is approximately $22,000 a year, an impossible cost for someone like Jones who does not collect a paycheck.

While HIV/AIDS policy and funding have received more attention than usual in recent months, the state continues to reel from budget cuts prompted by sluggish tax revenue. These budget cuts, combined with ongoing efforts to reform healthcare could hurt already vulnerable patients, advocates say.

Ten California counties are rolling out healthcare reform in advance of 2014, when healthcare reform takes effect nationally. HIV/AIDS service providers want to make sure that the changes healthcare reform brings won’t further compromise care for any of California’s 190,000 people living with AIDS or HIV.

Advocates are especially worried about the shift away from wraparound services, like housing assistance, towards a more medical model of care. The end of federal funding dedicated specifically to low-income people with HIV/AIDS is also a concern. These changes are likely to hurt the low-income communities already hard hit by statewide cuts in HIV/AIDS prevention programs.

About $85 million dollars was cut from the California Office of AIDS budget in response to the budget crisis in fiscal year 2009-2010, according to a report from the UCSF AIDS Policy Research Center. That’s about half as much as the program’s budget in 2008-2009.

The reduction in funding resulted in devastating cuts to prevention efforts. Many community-based and support service organizations were forced to drastically reduce their services or close their doors altogether.

“These cuts have the impact of even further decreasing access to vulnerable communities,” said Dr. Ifeoma Udoh, Research Director at Pangea Global AIDS Foundation, an organization that supports HIV strategies primarily through research and evaluation.

In Alameda County, African Americans are most heavily impacted by HIV/AIDS, representing 43 percent of prevalent AIDS cases and half of HIV cases. The communities most vulnerable to the HIV epidemic include heterosexual girls and women, men who have sex with men (particularly African American and Latino men) and injection drug users.

“There’s also an economic issue,” said Tom Mosmiller, a Program Manager at Alameda County Office of AIDS Administration. “It’s moved from a middle-class disease of the white, gay, middle class male, to also a disease of low-income people of color.”

Low-income people need wraparound services, which help with finding a stable home, employment and transportation. The stability these services bring help people maintain their treatment regimen.

Loren Jones is well aware of the hardships of being both low income and HIV positive. In addition to her own experience, she volunteers much of her time working with AIDS advocacy and research groups.

She said that housing services were one of the first things to go. Jones lives in a studio apartment in Berkeley, affordable only through subsidized housing.

“When you have a disease where you need to have community, that’s a very frightening thing to not have a place to live,” she said.

Jones considers herself different from many low-income people. She attended Penn State, and later became a Licensed Vocational Nurse through Laney College. In addition to arming her with an extensive knowledge of the human body, she has some basic educational advantages.

“I don’t think that we are fully aware of how many people in our culture, especially low-income people, that don’t read really well,” she said, which is key to understanding one’s options for treatment or assistance.

“If you don’t know what’s on paper or you can’t go someplace and look up information and compare what you’re reading with what you’re being told, then you don’t really have much choice, and then you’re always at the mercy of whoever you’re talking to,” she said.

She has also said that the food resources have grown much tighter now. The resources are there, but their nutritional value is lacking – not helpful for the already-depleted immune systems of HIV/AIDS patients. For years she and many others made up the nutrition deficit by drinking supplemental shakes like Ensure, but the shakes are no longer provided.

Advocates are concerned that healthcare reform may not strengthen efforts to improve wraparound services so important to people like Jones, and may even weaken them.

For instance, the Obama administration unveiled the first National HIV/AIDS strategy in 2010, a “monumental document,” according to advocate Sonia Rastogi. “It was the first time the U.S. admitted to and created a plan around the domestic epidemic,” said Rastogi, a program coordinator for the Positive Women’s Network.

The strategy, however, tends to focus on those efforts that are quantifiable – results from new medicines, for example – creating a system that rewards a medical model with funding while wraparound services suffer.

“Support services and wraparound care are the first things to get cut and put on the table to see if they’re necessary for meeting certain types of goals,” Rastogi said.

She gave the example of an HIV community-based organization (CBO) seeking funding. To line up with the strategy’s goals and secure funding, the CBO would want to demonstrate that they are, for example, reducing incidents of HIV.

However, many community-based organizations focus on support groups or peer-to-peer supportive services. They do not necessarily know how to quantify the effect it may have on preventing HIV infection.

“They have to figure out how to quantify those things and that might be hard,” Rastogi said.

Similarly, because of HIPAA (the Health Insurance Portability and Accountability Act of 1996), if the CBO is not attached to a clinic or a healthcare provider, they cannot access information on a patient’s CD4 cell count and HIV viral load – indicators of the disease’s progression and the patient’s response to therapy.

“So basically a lot of CBO’s are having to figure out how to change the way that they do business,” Rastogi said.

Other potential problems, particularly issues with continuity and ease of care, suggest that healthcare reform may need to pay more attention to the needs of people with HIV/AIDS, advocates say.

California has in place the Low Income Health Program (LIHP), a new optional program for low-income patients that will bridge the gap between now and when major provisions of the Affordable Care Act will be in place in 2014.

“The program had been developed over the last few years and had overlooked the needs of people living with HIV and AIDS,” Tom Mossimiller explained.

For example, there is a medication dilemma. Right now, many patients like Loren Jones qualify for ADAP, the AIDS Drug Assistance Program, which assists uninsured and underinsured AIDS/HIV patients with access to their medications. Patients qualifying for ADAP can go to their neighborhood pharmacy to get their medications.

“The LIHP program doesn’t have any deals like that, or any arrangements worked out with commercial pharmacies,” Mosmiller said. LIHP patients only have access to their clinic’s pharmacies, so it raises the question of where HIV clients will go for their medications.

“Will they be prevented from going to the neighborhood pharmacy that they may have been going to the last 5 or 10 years? Will they have to go to a new pharmacy? The clinic’s pharmacy? Will there be a long wait? We’ve got some challenges we’ve got to figure out,” Mosmiller said.

Sonia Rastogi explains that under the Affordable Care Act, there’s more of an emphasis on getting uninsured or underinsured patients, including those with HIV, to Federally Qualified Health Centers for their healthcare.

Her concern is that “those community clinics most likely do not have an HIV specialist on board or an HIV care and treatment function in their infrastructure.”

For Kabir Hypolite, the Director of the Alameda County AIDS Office, continuity is also a big concern. Patients may have been receiving treatment from the same doctor for years, and developed a relationship with their healthcare providers. He said making sure those relationships remain intact is important.

“That’s really key for things like treatment adherence, which is key for controlling the HIV virus, both at the individual level and also in the community,” Hypolite said. “If your viral load is high, not only do you have a poor outcome, you’re also more infectious with intimate partners.”

If patients are forced to change their provider, or if it’s made inconvenient or lacks the support services – childcare, transportation vouchers, legal assistance – it could have a major impact on patient adherence to treatment.

In the past, the low-income gap has been resolved through the Ryan White Care Act, a large contributor to low-income AIDS and HIV patients since its inauguration in 1991. The Act, simply known as “Ryan White” is the single largest federally funded program for people living with HIV/AIDS and the only Act dedicated to a single disease. Sonia Rastogi calls it the “payer of last resort,” as it seeks funding to allow for lower income, uninsured and underinsured patients to have availability for treatment.

“I think one thing everybody is really worried about is what’s going to happen with Ryan White with respect to affordable healthcare,” Udoh said.

The act is supposed to sunset in 2014, as the new healthcare reform takes over. But HIV advocates and patients are worried: what happens if Ryan White goes away?

“Ryan White is specific, set-aside HIV dollars that are supposed to go specifically to HIV/AIDS, meaning setting up things like ADAP, which is a set aside pot of money that states can tap into to fund reduced costs for HIV meds,” Udoh said.

She said that she and other HIV workers are eager to have government clarification on how the new system will play out.

“I think an immediate lesson learned is that as we continue moving forward with healthcare reform, we need to make sure that HIV is immediately included at the earliest stages,” Mosmiller said.

Count Us In! press conference on World AIDS Day 2011 in Oakland, CA. From left to right: Marsha Martin with Get Screened Oakland, PWN’s Coordinator Naina Khanna, PWN Steering Committee Member Loren Jones, Congresswoman Barbara Lee’s Senior Congressional Aid Daniela Quintanilla, Tom Mosmiller with the Alameda County Office of AIDS, Oakland Mayor Jean Quan, Tiffany Woods with Tri-City Health, Assembly Member Sandre Swanson’s Senior Field Representative Jacqueline Orpilla, Annie with Occupy Oakland’s women’s contingent, and PWN’s Advocacy Coordinator Sonia Rastogi. Photo credit: Nana Kofi Nti

By Sonia Rastogi

On World AIDS Day 2011 U.S. Positive Women’s Network launched Count Us In!, a long-term national campaign to ensure that HIV-positive women have full access to high quality healthcare that upholds our rights (www.pwn-usa.org/count-us-in). We as women living with HIV demand to be counted. Women living with HIV account for almost a third of the HIV epidemic in the U.S., yet programs, services and funding for HIV-positive women are disappearing. We demand that women living with HIV be counted in the HIV plan, services, budgets, data, and leadership!

As we embark on 2012 – a year full of possibility and change with the 2012 presidential elections and the International AIDS Conference taking place in Washington D.C. – the Count Us In! campaign is committed to holding our decision-makers accountable for the human rights crisis that colors the HIV epidemic among women in the U.S.

The state of the women and HIV epidemic in the U.S.:
The theme for this year’s World AIDS Day is “Getting to Zero: Zero new infections. Zero discrimination. Zero AIDS-related deaths.” Instead, we are getting to zero funding for necessary programs like psychosocial support, childcare, transportation, and housing assistance that save women’s lives.

Over the past year, women living with HIV experienced drastic changes in their ability to access women-centered services. In Colorado, The Women’s Lighthouse Project, the only women-serving HIV organization in the state closed its doors at the end of 2010. In early 2011, BABES Network – YWCA, a women-serving HIV organization in Seattle, WA that provides psychosocial support experienced a 75% cut to their program funding. These services are critical in supporting HIV-positive women’s access to quality medical care.

New biomedical research that may herald an end to the HIV pandemic is 2011’s hallmark. Yet for women, the promise of science’s advances may ring hollow. Yet, women have less access to HIV prevention tools and HIV-positive women are less likely to reap the benefits of these new advances. In fact, research shows that women are more likely to get sick and die faster due to poverty, stigma, and logistical barriers to accessing health care. Nationally, over half of women living with HIV are not in medical care.  As the U.S. navigates a volatile election year, women-focused services have become a political football.

Count Us In! campaign launch:
Women living with HIV across the country from Detroit to Fort Collins, CO to Philadelphia, PA spoke up on World AIDS Day! Nationally, PWN released 1) a video series of HIV-positive women leaders across the country speaking out; 2) a photo booth featuring HIV-positive women and allies; and 3) a petition drive all featured on our website.

In Oakland, CA, advocates held a press conference on the steps of City Hall with Mayor Jean Quan, the Office of Congresswoman Barbara Lee, the Office of Assembly Member Sandre Swanson, the women’s contingent of Occupy Oakland, community leader Tiffany Woods with Tri-City Health Center, Tom Mosmiller with the Alameda County Office of AIDS, and yours truly as a woman living with HIV.

The affects rippled. HIV-positive women and allies sent in photos for the photo campaign, local newspaper and radio media picked up the launch, and women living with HIV spoke in their communities on the need to be counted in!

Count Us In! demands:
As women living with HIV, we demand that we be counted in:
1.    The Plan: Women living with HIV and women-centered services must be prioritized at local, state, and national levels.
2.    Services: Women-centered services are critical to improving the lives of women living with HIV. HIV services must be useful for all women including transgender women, sex workers, drug users, women with mental health concerns, women of varying literacy levels and English proficiency, young women, women who have experienced violence, and women behind bars.
3.    Data: Count all women accurately. Transgender women are not men who have sex with men. Non-identified risk is not a risk category. Define risk to include the socioeconomic factors that place women at risk for HIV acquisition in the first place.
4.    Budgets: Budgets must include equitable funding for women-specific services that account for the true economic and social disparities women face.
5.    Leadership: Women living with and affected by HIV must be in leadership at all decision-making tables that impact us.

Can We Count On You? Take action & be a part of the solution!
Speak Up! Your voice is needed. Stand in solidarity with the 300,000 HIV-positive women across the country. Here is what you can do:
1.    Sign the Count Us In! petition! Go to tinyurl.com/pwn-countusin to sign the petition online or on page 3 of this newsletter, you will find the print petition. Make a copy or cut it out and mail it to:
Attn: Sonia Rastogi
U.S. Positive Women’s Network
449 15th Street Suite 303
Oakland, CA 94612
2.    1, 2, 3 – Smile! Photo booth: Are you a woman living with HIV? An ally? Why can HIV-positive women count on you? Write your reason on the “Count Me In because…” template, take a photo and mail it to the address above or email it to me at sbrastogi@womenhiv.org.
3.    Video series: Watch the campaign videos at www.pwn-usa.org/count-us-in and make your own! Guidelines on the website.
4.    Like our Facebook page! Go to tinyurl.com/uspwnfacebook.
5.    Spread the word! Let’s make an echo chamber. Tell your community, your friends, your colleagues about the Count Us In! campaign. Ask them if women living with HIV can count on you to uphold our rights.
6.    Use the campaign’s talking points in your advocacy efforts. Interested in taking the campaign to the next level in your community? Contact me at sbrastogi@womenhiv.org or (510) 986-0340 for support.

Uphold the rights of HIV-positive women today! Count HIV-positive women In! Can We Count On You?

In Sisterhood & Solidarity,
Sonia

Sonia Rastogi is PWN’s Advocacy Coordinator based in Oakland, CA.

In the U.S., it was recently reported that about 50% of women living with HIV are not receiving medical care. In San Diego County, the statistic is higher — 69% of women living with HIV are not in care. This is an alarming rate of women who are not receiving the basic medical services.

Why is this happening? In San Diego, there are huge structural barriers that deter HIV-positive women from visiting the doctor or seeing a case manager. Situated close to the U.S. – Mexico border, women without documentation or questionable documentation fear their providers or clinic will report them to immigration, which leads to deportation. Deportation severely disrupts and harms a family’s well-being as women are often caretakers of children and dependant family members. We consistently see women prioritizing their family over themselves.

Transportation is another critical barrier to accessing any type of health service. It can take over an hour to drive from one side of San Diego County to the other. Women are often placed in subsidized housing or live in more remote areas due to housing costs. Unfortunately, their areas of residence are far from critical health service centers. In addition, recent immigration control efforts push women into their homes for fear of getting detained and deported. We are hearing more stories of immigration officials boarding public buses and trolleys demanding documents. Immigration officials will also follow mobile health units to assess who is getting services from these vans.

Lastly, stigma runs rampant in the community and with service providers. Without provider training, HIV prevention options, and capacity building for community organizations to understand and serve the needs of women, stigma will continue to thrive.

The time to take action is now! Funding for supportive services – such as transportation support, legal counsel, childcare, housing assistance, and translation – are being cut due to a shift in Ryan White dollars from social services to core medical services. This is causing a further increase in the number of women who are falling out of care. When San Diego’s leaders discussed the profound numbers of women out of care, the tables were ready to work with women’s advocates and PWN- San Diego to decrease the number of HIV-positive women that are out of care. Our voices will be heard!

Interested in getting involved? Contact me at acintia.wright@syhc.org or call (510) 986-0340 x317!

Acintia Wright is a PWN Steering Committee Member and Outreach & Testing Coordinator with San Ysidro Health Center. Acintia is based in San Diego, CA.

My name is Gina Brown and I am a woman living with HIV. I was diagnosed 17 years ago while pregnant with my daughter. I can still remember hearing the words, “you have AIDS and you’re going to die.” Yes, that is how I was told that I am positive. In the beginning of my diagnosis I was devastated – even though I was once on crack I didn’t think it could happen to me, ashamed, angry – at first with him and then with myself, afraid – people might find out, and guilty – what if my baby gets it? I am grateful that another provider told me about a study going on to see if certain medications prevent a mother living with HIV from passing it on to her baby. I was afraid but willing to give my baby every opportunity to be HIV-negative. I agreed to participate and my daughter was born 11/29/1994 and she is HIV-negative! The study, ACTG 076, was very successful. Today, mother-to-child transmission rates are less than 1% with medication and appropriate care.

Receiving my diagnosis in the manner that I did made me want to live; I didn’t just want to live but I also wanted to show other women that it was possible to live with HIV. I educated myself on HIV, cervical and breast cancer, domestic violence, homelessness and commercial sex work. Although we all come from different places our needs, desires and dreams are similar. Today I am a Medical Case Manager at NO/AIDS Task Force in New Orleans, LA, a recent graduate from college, and now attending Grad School! I am a mother, a grandmother, student, and friend. I am still a work in progress to be all of the things I am going to be. I refuse to let HIV stop me from accomplishing my goals, no matter how big or small. I surround myself with people who are supportive and real and I don’t have time for negativity in my world. I’m playing the hand I was dealt and guess what? I keep coming up a WINNER! My motto in life “It is what it is.” This is my journey and I plan on riding this thing until the wheels fall off!

Gina Brown is a PWN Steering Committee Member and Medical Case Manager at NO/AIDS Task Force. She is based in New Orleans, LA.