Read Part 1: The Greater Involvement of Women Living with HIV.

How can women living with HIV who attend the International AIDS Conference (AIDS 2012) be meaningfully involved? There are probably as many ways as there are conference attendees (about 20,000 – 30,000!).

CONFERENCE SET UP
To set the scene for those who will be attending their first conference, the conference is made up of two main venues: 1) the main conference and 2) the Global Village.

1. The Global Village
   The Global Village is free and open to the public. It is filled with booths from organizations involved in HIV work from all over the world. There are sound stages and music and dance performances, films, workshops, and networking zones in the Global Village. Most of the activism will get planned here.
2. The Main Conference
   The main conference is organized like a professional scientific conference where one needs a registration to enter. There are conference rooms, large and small, and halls set up with poster presentations. There will be skills-building workshops held here as well. Most of the new research findings and announcements will come from the main conference.
3. Positive Lounge
   There will be a PLHIV lounge in the main conference designated as a place for positive people to rest, find some nutritious snacks, take medications privately, and network with one another. In Mexico City, the PLHIV lounge was peaceful and softly lit. They served two meals per day and had massage therapists on hand. In Vienna, there were espresso machines, snack bars, and yoghurt and vouchers for positive people to get their meals in restaurants throughout the conference center. If it were up to me, the Mexican Network of People Living with HIV would organize the PLHIV lounge at every conference!

POSITIVE WOMEN’S INVOLVEMENT
In terms of positive women’s involvement, I would keep two things in mind:

1. Involvement with other positive people and
2. Participating in conference sessions and workshops.

Networking with other positive people
First, engaging with other positive people is a form of greater and more meaningful involvement in the HIV response. It builds solidarity and allows us to learn from each other. You can get a sense of who the other positive people at the conference are by attending one of the pre-conferences, or in a networking zone in the Global Village, in the PLHIV lounge in the main conference, or through a workshop or presentation. I strongly encourage you to talk with other people. You can start building relationships and get a deeper sense of what being HIV positive means in different women’s, and men’s, lives.  It is safe and acceptable here to ask if you can join someone new during a meal and strike up a conversation. I met a very dear friend four years ago in the PLHIV lounge in Mexico City by asking, in terrible Spanish, whether I could join him at breakfast time. Some of the most meaningful, interesting conversations that I have had at IACs were in the PLHIV lounge.

Attending Sessions
The conference sessions and workshops need the voices and perspectives of positive people – and positive people need the access to the latest information and the opportunity to lend our voices to the interpretations that researchers propose. The PLHIV lounge and the Global Village can feel comfortable and fun, but be brave and go into the main conference sessions too.

The program will be huge. I recommend that you check the program carefully and allow yourself lots of time for going through it and goal-setting. There are lots of sessions. Try to attend as many as possible. Pay attention to the global village schedule as well because there are many valuable workshops and activities there. Pay particular attention to sessions highlighted by groups you are part of and respect, because those sessions are probably going to be especially relevant, community-based and inclusive of people living with HIV. Look at the “road maps” to the conference put out by PWN, GNP+, ICW, and other organizations or issue areas that are important to you.

If you can, go to the plenaries every morning or watch them in the Global Village. If you can make it to all of the plenaries, you’ll have a good broad overview of the current state of the epidemic and response to the epidemic around the world and among different key populations. Some of the plenary speakers have in past conferences scheduled time at the Global Village after their plenary speech. This is a more intimate setting and provides a good chance to be able to ask them questions about their area of expertise.

I would encourage you to try to branch out in at least one or two different ways from the work that you normally do. I ended up at a session on intellectual property rights in 2008. This was something I had not thought much about in terms of access to medications; I learned the situation was not what I assumed it was in terms of bilateral treaty agreements between countries that would limit people’s access to HIV medications. It was really eye opening, really well done, and I learned a key piece about the HIV response that I would not have known and would not have realized that I could easily grasp if I had not sat in that session and heard from the presenters directly.

Engaging in sessions
In the sessions and workshops, don’t be afraid to ask what something means. It is absolutely acceptable to stand up at the microphone during the question and answer time and ask someone to speak more about something that was in a slide or something she/he said and to say, “I’m not sure what that meant, could you say more about that?” The conference is designed for doctors, scientists, and people at the grassroots, including activists, community members, and people living with HIV, so it should be accessible to all of us. From the perspective of someone who has also been a presenter, in my experience we all appreciate being asked to say more about things that are interesting to us. The presenters have been instructed to keep their presentations very brief, usually ten minutes, so asking questions allows a presenter the chance to share a bit more and to learn a bit about what those in the audience find most relevant about her or his research.

For women attending who do not speak English as a first language, you should know that there is always simultaneous translation available for the plenary sessions and sometimes for the other sessions as well. Bring a driver’s license or other identification to use to “check out” a headset to use. I hope you will not be intimidated by language into keeping your thoughts to yourself. If you are in session that is being held in English and you would rather ask a question in Spanish or another language, it is ok to ask if there is anyone there who can translate for you.  if you are more comfortable with a different language. I have seen this done a number of times. The official conference languages are English and Spanish.

Also, everyone attending should know that there will be people communicating in English at all levels of fluency, including some presenters.  It is absolutely fine to speak in English even if you don’t feel you are completely fluent. That is just part of the international process. If you are a native English speaker, be kind to those who are not and try to remember to slow down and enunciate your words clearly. When there are language barriers, an open face and smile and good intentions go a long way toward communication.

I have a few final thoughts about the emotional effects of the international AIDS conferences that I would like to share in the hope that it will be helpful or interesting to others.

Stay tuned for Part 3: HIV+ Women’s Rights and Bringing Our Emotions to the Surface

The Global Network of People Living with HIV (GNP+) is the global network for and by people living with HIV. GNP+ advocates to improve the quality of life of people living with HIV. GNP+ North America is a regional chapter of GNP+ focused on lifting the voices of PLWH in Canada and the U.S.

My name is Reverend Andrea Lamour-Harrington. I am the Resource Coordinator for The Morris Home, a newly developed Drug and Alcohol Treatment facility for Transgender and Gender variant individuals here in Philadelphia PA.

I had to speak at a sensitivity training recently at a hospital here in Philadelphia. I was listening to one of the women speak when she struck a nerve so deep, it took everything in me not to shut her up. The meeting was on Cultural Diversity within the hospital staff and with patients. All in attendance were staff, so can you explain to me why did this woman have the nerve to say to me that she had a problem with her friend’s decision to transition from female to male in appearance. This particular woman went on to say that it bothered her and made her uncomfortable to call her friend by a masculine name. If this is how she feels toward a friend, how do you think she feels toward a stranger that comes into treatment?

Every 9 ½ minutes someone is diagnosed with HIV and if the very people who are the providers of medical care cannot get past their own feelings and opinions, how do you think the needs of our trans individuals are being met. Being trans is not a decision, it is who you are.  When treating a client, we as providers have to remember that it is not about us it is all about the client and what they need. As with this woman and her friend, it is not about her it is her friend’s life and at the end of the day her friend should be allowed to be whom she is without conditions attached.

We as providers will do more harm than good if we try to treat every patient with cookie cutter mentality. Each client is an individual, and anyone who is brave enough to seek treatment should be allowed to do so without consequence. If I am in trouble or if I think for one minute that if I ask I will be shot down or judged, I just will not ask. When we force that type of thinking into place with our marginalized parts of the community we put a large number of people in fear and with that fear being in place they will not seek HIV testing, treatment, or resources. No one should live in fear, and I say that as a provider if you are not part of the solution, you are part of the problem. Being trans and African American it is difficult to get past the drama of everyday life. With that being said the added pressure of ignorant- judgmental people puts a road block up that creates a wedge between any positive outcomes in Public Health and the very people that need services the most.

This year is significant in the fact that the International AIDS Conference is being held in the United States and we as woman of the trans experience, we as African Americans, and we as the most likely to suffer at the hands of ignorance, need to show up and show out for the 2012 IAC in July. We need to speak-up, we need to learn, we need to educate and recreate a positive solution for treatment and prevention strategy to lower the numbers of the most affected portion of our community when it comes to HIV infection. If you would like to be a part of the solution to HIV, show up and become  a soldier in the war against HIV, July 22-27th 2012 in Washington DC.

None of us is free if others are suffering. Join the fight!

Why should the involvement of women living with HIV be a priority for the International AIDS Conference (AIDS 2012) to be held in Washington, DC, this July? What are some ways that women with HIV who attend the conference can participate meaningfully? In Part 1 and 2 of this blog post, my goal is to sketch out some answers to these questions from my experience. I hope this will be an opening to a larger conversation and that other people living with HIV will share their thoughts, questions, and experiences in response.

Part I: The Greater Involvement of Women Living with HIV

A number of years ago, a former colleague and friend stated that she thought people with HIV shouldn’t be involved in HIV prevention work, given that people with HIV have demonstrated that they know, or care, little about avoiding HIV risk. Her words may have been an attempt to make herself feel more important or legitimate as an HIV-negative social worker in the HIV/AIDS field; however, she was neither the first nor last person working in the HIV/AIDS field to question why we don’t just leave these things to the professionals.

It is not only people without HIV who question; people with HIV can also feel that we have little to offer. Because of this, I think it is important to take seriously the challenge to explain why the involvement of people living with HIV is important in all areas of work that address the HIV epidemic, and, given the upcoming International AIDS Conference, to talk about the meaningful involvement of women living with HIV, in particular, at this conference.

The involvement of people living with HIV in all aspects of the response to the epidemic is critical for two simple reasons:

1. First and foremost, it recognizes and protects the human rights and dignity of people living with HIV.
2. Second, it makes programs designed to provide prevention, treatment, care, and support to people with HIV and key populations more effective.

Human Rights and Dignity
The human rights and dignity of people living with HIV are recognized and protected when we are meaningfully included and involved in decision-making about the things that affect us. If we are not meaningfully included, then we are treated as children or helpless victims for whom others, such as public health professionals, doctors, scientists, and politicians, must make decisions. When we are at the decision-making table, then we are political adults and formally treated as equals (whether we are treated as equals by the others at the table is a topic for another day).

Decision-making does not only happen in government chambers – it happens in all of the daily work that takes place in research labs, medical offices, AIDS service organizations, public health offices, and at the conferences where leaders in the field gather to share their research and programs and to discuss with each other how to interpret their data, communicate their findings, and plan the next stages of research and program activities. It is critical that people with HIV be active participants in those discussions.

Effective Programs
In addition to protecting our human rights, the researchers and program people (for example, from public health and ASOs) need us there; some of them recognize this and deeply value their work with communities of people with HIV. It turns out that, despite my former colleague’s dismissive remarks, the contributions and expertise of people living with HIV are necessary for HIV programs to work. People living with HIV know better than anyone where the current programs fall short, where prevention programs fail, what social support works and what doesn’t, the barriers to accessing treatment and care consistently, the effects of stigma and discrimination, and the resilience and resourcefulness of people with HIV. Of great importance, people living with HIV also often know how and where to reach people who need prevention, treatment, care, and support services – people who often have had a history of mistreatment by public health and government officials, because of racism, homophobia, and other kinds of prejudiced behaviour, and whose trust needs to be earned.

Women Living with HIV
But what about women living with HIV? Are there particular reasons that women’s involvement is necessary? I say yes. If positive women are not at the center of decisions that affect us, then, once again, we are treated as children for whom others must make the important decisions. Beyond this, there are a multitude of gender-specific ways that HIV affects women from the way that the virus affects our bodies, to the side effects of medications, to the social effects (including women’s frequent caregiving role and general lack of equal resources in the US). For transgender women living with HIV, the gaps between their needs and priorities for HIV prevention, treatment, care, and support and what is available are enormous.

In addition, the inequalities between women that exist before HIV infection continue to exist after HIV infection, so that experiences based on poverty status, race, gender, gender identity, sexual orientation, age, and disability continue to shape women’s lives differently. This means that the full diversity of positive women’s voices is needed and we have to be careful that the voices of those with the most privilege don’t become mistaken for the voices of all.

Stay tuned for Part 2: Positive Women at AIDS 2012.

The Global Network of People Living with HIV (GNP+) is the global network for and by people living with HIV. GNP+ advocates to improve the quality of life of people living with HIV. GNP+ North America is a regional chapter of GNP+ focused on lifting the voices of PLWH in Canada and the U.S.

Of course I am glad to see that the White House and the nation as a whole is finally willing to publicly open up a conversation in this country regarding some ugly realities dealing with the disproportionate incidence rate, and poorer outcomes of African American women specifically, and women of color in general. Histories of Violence hold a prominent position in many women’s stories.  On March 14th, a Federal Inter-Agency Working Group was created to work on the intersection of violence against women and girls, HIV, and gender-related health disparities with Grant Colfax, new director of the Office of National AIDS Policy, and Lynn Rosenthal, White House Advisor on Violence Against Women, at the helm.

It will be hard for us to face up to and tackle the possibility of changing the dominate values and norms that exist in this country as well as internationally, regarding dominance and coercion of sexual behaviors and choices regarding protection against STDs, HIV, and pregnancy.  We are told almost from the cradle to the pulpit to submit to the dominant model of masculinity’s “need” for sex. On his terms when our housing, economics, self-esteem and physical safety become attached to serving this need, our risk of contracting disease and general poor health skyrocket.

As early as 1996, the American Journal of Medicine noted in a study done in North Carolina found that many out of treatment, homeless, women addicted to crack, were also victims of violence and forced high risk sexual behavior.  Most of these women had suffered sexual abuse before the age of 18, lived on less that $500/month income, and admitted to depression.

More recently in 2012, the San Francisco Chronicle reported that a UCSF study reviewing 29 previous studies found that 30% of HIV+ women have Post Traumatic Stress Disorder, a rate six times higher than the general population of non-positive women. 60% are survivors of sexual abuse, 55% domestic abuse, compared to 12% and 24% of women overall.

Another UCSF study of 113 female patients in the women’s HIV program, found women suffering recent trauma were more likely to have detectable viral loads.  Chaotic lifestyles make it difficult if not impossible to take medication consistently.

The is a crisis that we need to do more than screen for. We need to make resources available to effectively change women’s lives in totality.  We need life sustaining wages, and places to live on our own for the safety and longevity of our children and ourselves.

The International AIDS Conference 2012 is a moment in history where we can move from research and workgroups to strategizing a plan of action. It is a moment where U.S. advocates and policy-makers can share information and knowledge with global advocates who are working at the intersection of violence, sexual and reproductive health, and HIV for women and girls. It is a moment where we can network in the Global Village, Women’s Networking Zone, and countless other sessions and workshops. It is a moment for plenary speakers from across the country and especially the U.S. to talk candidly about violence and its impact. It is a moment for national political leaders to recognize, acknowledge, and outline action to decrease violence against women in our communites!

“What do you do?”

It is a common question that I dread.

“I am a PROFESSIONAL volunteer,” I usually respond with a cheery smile
plastered on my face.

What am I supposed to say?

“I CAN’T work because 20 years ago I tested HIV+ and just surviving was my full time job?”

“I DON’T work because fear and ignorance of HIV make people afraid to eat food I prepare?”

“I am unable to work because the dominant paradigm traps me with a traditional definition of a job, the hours, the attendance, even the “professional” outfits that I am often unable to provide?”   (Those are the bad days when I am pissed at how inflexible employers are).

I am fortunate in many ways.  I am married and my husband long ago offered to be the financial support in our family.  He provides the health insurance, the roof over our heads, the food on the table.  Does he hold it over me?  Nope, for some reason that still mystifies me, he is just glad to have me alive and in his life.  Does it make it any easier to be the stay at home partner?  Nope, all our values and worth as adults are tied to our jobs, our paid jobs.

So what do I do?  I volunteer, a lot.  I squeeze 28 hours out of every 24, over scheduling myself so that I can be at every meeting, helping every person that needs me or taking every shift.

Here is the puzzling part, what kind of job would I like or be good at?  I don’t even know.  20 years of advocating and educating has made me pretty good at bunch of different things, I was blessed with a pretty agile mind and an innate curiosity.  What does that sound like to you?  Like so many other under-employed HIV+ women, I don’t even know what a job that uses my unique skills looks like.   What does it look like to you?

So here is a challenge to our allies, coalitions, boards, and organizations that love and rely on their “HIV+ super-volunteers”: if you love our work ethic, if you don’t know how you would survive without our HIV+ knowledge and experience, invest in skills-building and economic opportunities that support us. Invest in our development as professionals including options to take a leadership role. Forward us job opportunities, always demand speaker honorariums when others ask if you have HIV+ people who can speak,  send us information on skills-building trainings, and put extra effort into ensuring that when we are given the chance to present or participate in a meeting or conference that there are resources to fund us to get there. If you think we are perfect for a job, ASK us if we are interested.  We might not even believe we are qualified.  If you want our expertise, OFFER US A JOB, OFFER TO PAY US.  Trust me, it won’t offend us, we will feel honored.

Women living with HIV are often pushed into poverty or economically unstable situations. To uphold the HIV community’s call for economic justice, we must practice what we preach in our own house. We must take to heart and walk the talk in our own house. Otherwise, we are not advocating for people living with HIV, we are fostering its devastating impact.

April 17th, 2012 was Tax Day as well as Equal Pay Day (read Teresa Sullivan’s Wage Gap blog), a day established to bring attention to the pay gap for women in the U.S. For many women living with HIV, Tax Day brings home the truth that regardless of a woman’s financial status, an HIV diagnosis is frequently a sentence to a lifetime of poverty.

Is the American Dream of life, liberty, and the pursuit of happiness really achievable for HIV-positive women?

As a young woman living with HIV I am fortunate to be employed and fortunate to have healthcare through my employer. However, what happens when I change jobs or become unemployed? What happens if I decide to pursue school? What happens if I move to a different state? What happens when I am 60 years old and celebrating 40 years of living with HIV? How many tens of thousands of dollars will I spend on medical care in my lifetime? How many different networks of care will I have gone through? Do I compromise on the right to have a dream – to live by the seat of my pants and jump for opportunities – in order to have stable healthcare? These are only a few of the questions that many HIV-positive people, especially women, confront each morning.

HIV is a lifelong, chronic disease. It does not have to be a disease of crisis, despair, and shame. Yet, it is. It is because HIV runs the well-worn path of gender inequality; where race, gender, and geography are risk factors for acquisition. It is because we lack the investment in each other as human beings to pursue our dreams, to foster families and communities that can thrive.

64% of women living with HIV receiving medical care had annual incomes under $10,000 compared to 41% of men, according to the HIV Cost Services and Utilization Study.

People living with HIV are incentivized to stay poor. Benefits programs including ADAP, Medicaid (read Kat Griffith’s Medicaid Surveillance blog), and housing programs require an HIV-positive person to keep her income below a certain level to qualify for benefits – in some states, an individual must earn less than $1,200 a month to qualify for the AIDS Drugs Assistance Program. If a woman attempts to earn more money to take care of herself and her dependents, she may run the risk of losing her health care and supportive services.

People living with HIV are incentivized to get sick. Some programs require an AIDS diagnosis to qualify for and stay in care or housing. Instead of investing in preventative and long-term care, some programs like Medicaid require a disability diagnosis before care and medication are dispensed. This means HIV-positive people may have to get severely sick and disabled before seeing a doctor or receiving medication.

Our system is broken. How can people living with HIV be productive tax-paying members of society (read Precious Jackson’s Economic Growth blog) when healthcare and workplace policies consistently disenfranchise and threaten to disenfranchise us? For many women living with HIV, the attempt to build a savings, the thought of accumulating more educational degrees, and the effort to plan for future security does not always protect us. One fatal illness, one encounter with workplace stigma, one discriminatory practice can send us into poverty.

In addition, we as women “carry the heaviest economic burden. We are often responsible for our children, partners, parents and even grandparents and grandchildren,” says PWNer Nicole Seguin, a powerful advocate and HIV-positive mother (read her blog on the Glass Ceiling).

Women are key… women are central… no, women are already turning the tide against the HIV epidemic both in the U.S. and globally. But how can we sustain turning the tide when we are pushed into poverty and discouraged from pursuing our dreams? Women have a right to work and a right to earn a living wage, while having access to high-quality healthcare to make the American dream a reality.

To achieve this dream, federal and state governments along with the private sector must support the full implementation of the Affordable Care Act (read Brook Kelly’s blog on how health care reform supports HIV+ women). Health care reform has the potential to expand the Medicaid program and get rid of the disability requirement, bring down costs, prohibit health insurance discrimination against women and people with pre-existing conditions, provide better health security, and create a better system that meets women’s unique needs.

To achieve this dream, government bodies and the private sector must fulfill all people’s right to work by funding and supporting skills-building employment and education programs such as those that work to transition incarcerated people into health care systems and employment upon re-entry into their communities.

To achieve this dream employers, government bodies, and worker’s rights movements must continue to ensure equality and equity of pay in the workplace, actively enforce the Americans with Disability Act (ADA), and incentivize the training and hiring of HIV+ women in the workforce.

We as women living with HIV demand to be counted in the American Dream. I have a dream and it will not accommodate discriminatory, oppressive, and degrading policies!

As we approach the closing of this year’s tax season, I wonder how many HIV+ women were able to work to file their tax returns and reap the benefits of a tax refund, probably not many.  According to The HIV Cost and Services Utilization Study, they found that women with HIV were disproportionately low income, 64% had annual incomes below $10,000 compared to 41% of men.  If 64% of HIV positive women had annual incomes below $10,000 how could they have contributed to the stimulation of the economy by purchasing “big ticketed items” from they’re refund check.

If they worked part time and were able to receive a tax refund, more than likely the monies they received went towards necessities not luxury items. HIV positive women deserve to have equitable access to supportive services like transportation, onsite child care for their medical, mental health and case management appointments and quality food banks. These services are the gateway for women to staying into medical care so they can maintain optimal health.

It’s important for HIV positive women to have good optimal health so that we can continue to work, and for women who want to return to the work force. This is why I say HIV positive women are a valuable asset for economic growth, for many of us when we feel were contributing to something good whether it is being able provide for our families without the dependency of public benefits, or being paid for our expertise and knowledge in helping to shape policies to create gendered specific HIV treatment and prevention programs we help to stimulate growth in the economy.

As a woman who co-exists with HIV, I would like to see federal and state monies earmarked toward programs for HIV positive women who want to go back to school, or return to work and when they file their income taxes they receive extra credits that will generate a generous return whether if the woman have children or not. With extra monies to spend she’ll be able to buy a “big ticket item(s)”.

By Kat Griffith in Peoria, IL

I have to go into the Medicaid office every year to get reapproved and reauthorized.  I dread it with every fiber of my being.  It is a reminder of my place in life.  It reminds me that none of my dreams have been achieved and it is a reminder that they most likely never will. Even though I have been HIV-positive for 21 years now, only in the last five years have I had to endure this crushing experience. It always feels the same.  But maybe this year is different?  I always naively go in hoping for some semblance of empathy or compassion, especially from the worker who handles my “case.”  In fact, of all my visits this year’s was the worst.  No matter how long I put it off, it doesn’t matter. My life is at stake here, and in this case that is a very literal statement.

First, I walk in the door and stand in line. I get approached by the rent-a-cop who makes me put my cell phone away and no, texting is not allowed regardless of whether the ringer is shut off.  I try not to look uncomfortable as I sit in the waiting room.  I lecture myself and recognize ALL of the social constructs that have brought all of us here. It feels as if society has pushed all of the people who “do not belong” in the rest of the world into this building – elderly women who struggle to walk when their case worker calls them and clearly have no one to help them; men who are experiencing marginalized housing; young women of color who may have children and may not; people who have mental health challenges; people, like me, who are living with HIV.

I sit for what seems like days, in reality it was almost an hour. I smile at people, always the struggle between trying to be a part of whatever community I am in and being repulsed by  this institution.   I cringe at every breath I have to take in this place.  I focus on my breathing, in, one, two, three, hold, let it out slowly one, two, three, four… over and over while I sit there by myself trying not to run out the door.  Every cell in my body resists this space, this idea of begging for the governments help me in any way, even if it is just to pay for my medications.   Yes, I know I said begging, and on this particular visit, that is exactly what happened.

FINALLY, my case worker (who insists on being called, Ms. Higgins, ironic how my professors who are Doctorate level want me to call them by their first name, and this case worker with, no doubt, too much on her plate, insists on a title), shows up magically at a door and calls out my name.  At this point I have tried to call her 3 times with no actual reply or call back.  I don’t point this

out.  We get on the elevator in silence, we then walk down a long endless hallway, in silence, and go to her office.  I hand her my December bank statement, which clearly shows a balance of under $2000.00. Those are the rules after all.

“What is this $200 deposit?” Ms. Higgins asks with her eyebrows raised, full of suspicion. She points at my bank statement. It was a deposit right before Christmas. “My father died, it might be money from that.” She says, “Well, if you have a regular deposit, we need to know about it.”  “It isn’t a regular deposit if my father died.” My blood starts to boil.  But I also know that this woman actually has control over what ultimately is a life or death decision with the stroke of her pen. And clearly she is in a bad mood. I mumble something about going on a kidney transplant list as a half-hearted attempt to elicit some kind of sympathy or compassion.  I cringe again at the idea that I am sitting here, a college graduate, a grad student, a past business owner, begging for help. Begging for help because I need healthcare and this lifeless institution is the only place I can get it. I feel myself shrinking, I am imploding and want to crawl out of the building.  Somehow I manage to keep my head up, fake a smile and let her show me where the elevator is.  I almost ran to my car.

I wish that I thought this was a process with an end.  I am not sure what my future holds, but I will say that I wish I didn’t need to have this kind of “help.”  What I have is a very expensive medical condition and no way to pay for it. My reality is that to actually pay out of pocket for these meds, I would have to make at least 6 figures.  It is that simple.  I need help. The painful part is that I have a sense of pride, I am willing to work hard, and I never will have the things that I want out of life, as long as I am required to never have anything of value or never have more than $2,000 to my name.   In my graduate program and in my life as an advocate, I fight every day to keep these life saving programs in tact. That being said, I hate them.  We, as women living with HIV, are driven into poverty and held there, and we are drowning.

“Like slavery and apartheid, poverty is not natural. It is man-made and it can be overcome and eradicated by the actions of human beings.”
- Nelson Mandela, speaking at the launch of Britain’s Make Poverty History campaign

Seven years ago,  I sat in an academic advisor’s office so excited and a little nervous. We mapped out the courses I should take. He helped me apply for the Engineering Program at Wayne State University.  He handed me an application for the Society of Women and Engineering, an opportunity for a full scholarship. I was on the Dean’s list. He gave me a letter that read you are invited to join Phi Theta Kappa, a national honor society for students attending two year colleges. I couldn’t believe it. After all these years, I was on the verge of being successful. I was so close I could almost taste it.  I had it all figured out.  I felt so proud of myself, determined to beat the odds. I finally had hope in the future. I was going to be an Engineer.

One week later I sat in a very different office, this time sweating, anxious and fearful. Her eyes were empathetic as she read the lab report, you have tested positive for HIV. I gasped for breath. The room started spinning. I could see my life, my dreams, and my destiny slipping away from me once again. Then she asked me “Nicole, do you have a will?  Advanced Directive? Do you have custody of your children? Its best that you make arrangements for them.” She handed me a magazine and a huge manila envelope filled with condoms. She gave me an orange piece of paper with the name of a doctor. I felt like I was just handed a death sentence. It’s over. Later that week my uncle passed away. As I stared at his coffin I didn’t see him at all. I saw myself. I sat in the back of the room, watching people grieve.  This was my future, this was my destiny, a coffin. I was going to die.

They say HIV is not a death sentence anymore.  What they don’t tell you is that HIV is a death sentence for prosperity especially for HIV-positive women. HIV is often a lifelong sentence of poverty for women. Research found that 50% of people who worked before being diagnosed with HIV had stopped working within two years, and 100% had stopped working within 10 years after onset of the first symptoms (American Journal of Public Health 81, no. 1 ). However, the employment research that has explored the effects and implications of HIV/AIDS infection has focused almost exclusively on white, middle-class, gay men — a population likely to have greater levels of work experience and education than poor women of color living with HIV. 64% of women living with HIV receiving regular medical care had annual incomes under $10,000 compared to 41% of men (HIV Cost and Services Utilization Study).

HIV-positive women carry the heaviest economic burden. We are often responsible for our children, partners, parents and even grandparents and grandchildren. 76% of women living with HIV had a child under the age of 18 living in their home (HCSUS). Women living with HIV often put themselves last, resulting in poorer health.

It took seven years for me to recover from my diagnosis. I found myself without secure housing, limited support, alone and living with HIV. I never finished college. The starting salary is $60,000 for an engineer right out of college. However, I would be responsible for my own healthcare. I would not be eligible for government assistance, and may have difficulty getting on an employer’s plan. The estimated lifetime cost for a person living with HIV is $620,000 dollars. What would be the point of working so hard to accomplish my goal? HIV-positive women have to keep their incomes low to access medication, health care, housing and other services in order to stay alive.

Franklin D. Roosevelt once asserted “ The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have little.”  We do not have to accept this inequality.  Injustice is not our legacy.

Economic justice equals economic equality.  Equal rights and opportunities for all.  Health is by nature one of the most basic human rights.  I have a right to equal access to quality health care and social support services.  I have the right to stable, clean, and safe housing.

I refuse to give in to social inequality.  I am not a product of my past or my environment.   I am always moving forward.  Always changing into something greater than I was before.  I deserve the opportunity to evolve. I deserve to be treated with respect and I demand to be handled with dignity.  I have the right to define myself and my life. I have the right to hope and a prosperous future. I have the right to love and to bear children.  I have value and worth.  I am worth saving.  

I’m not asking for a handout. I am asking for life, liberty and JUSTICE! I refuse to give up my hope that one day we will all be treated with respect. We will join forces and amass a movement of many voices and many fists. We will fight and we will be victorious. We are women living with HIV, listen closely… can you hear us?

“The moment we begin to fear the opinions of others and hesitate to tell the truth that is in us, and from motives of policy are silent when we should speak, the divine floods of light and life no longer flow into our souls.” Elizabeth Cady Stanton, U.S. women’s rights activist (1815 – 1902)

I look into my own life and realize that I am still faced with the economic injustice of being over worked and under paid as a women living with HIV This feeling is exacerbated by the slow painful journey to gain a higher position in an organization or any position for equal pay as a woman.

Women need be too valued just as much as our male counters partners, including receiving the same salaries as our male counter partners in the field for equal employment. As a women seeking equality and equal human rights,  it has been a dreadful, painful journey that I have firsthand experience in  as a women living  with HIV/AIDS. I have had to work harder and longer hours for a position that our society is more willing to offer men without a second thought of who may serve the organization or company’s best interest.

Society doesn’t often value assessing who is the best fit or person for a position. In my experience, men do not have to work as hard as I do in order to hold on to their position of employment. As the economic structure in the United States worsens for everyone, women are faced with a higher hurdle to jump over to make it in today’s world.

When it comes to healthcare for women that are working or seeking to gain employment with quality healthcare, the options are still few and far between. Women are likely to be the caregivers of families; however, their healthcare needs are costly and invisible. We still fall short when it comes to upholding the right to quality, affordable, and holistic healthcare for women who are working and women seeking employment. This is a deterrent from entering the workforce especially when a woman and her family has health concerns. Women are often incentivized to get poor and stay sick to access public health benefits since the prospect of health care and making a livable wage is bleak.

Women are becoming more vulnerable to HIV in the U.S. Because of lower wages, they are not receiving the necessary means to survive and take of themselves and their families. We as a society must address the issues that surround women’s financial needs as well as their healthcare cost.

If our society truly wants to begin to bring about an end to the growing numbers of women contracting HIV in United States and abroad, we must discontinue putting a bandaid on the issues that women face in today’s society and do some sincere surgery.