Groundbreaking Report Identifies Unique Needs of Women Living with HIV, Challenges to Engagement in Care


Contact: Jennie Smith-Camejo,, 347-553-5174

 March 10, 2016 – “What would improve your ability to stay in care?” That is the fundamental question 14 researchers, all women living with HIV, asked 180 participants from seven different geographic areas in a community-based participatory research project spearheaded by Positive Women’s Network – USA (PWN-USA), a national membership body of women with HIV. Participants were then asked about which specific services they needed, which services they currently had access to, and how well those services were meeting their needs. Among the key findings:

  • Women living with HIV are living in extreme poverty. 89.7% of the women surveyed were below 138% of the Federal Poverty Level (FPL), with 73.8% below 100% FPL.
  • Poverty affected more than just their ability to pay for drugs and medical services. 50% of respondents who had missed a medical appointment in the past year cited transportation as the reason.
  • 17% of respondents had been diagnosed with post-traumatic stress disorder (PTSD) and9% with depression. Cost, lack of coverage, lack of available services or waitlists for services presented significant barriers for many women in accessing these services.
  • While most respondents had been screened for cervical cancer according to current guidelines, only 40% of women of reproductive age had been asked if they needed birth control; just 39.4% had been asked if they wanted to get pregnant. And shockingly, 38.1% of participants had not been told by a provider that achieving viral suppression would dramatically reduce risk of transmission.

The Ryan White CARE Act, first passed by Congress in 1990, has been a life-saving safety net program for hundreds of thousands of women living with HIV, serving as a payer of last resort for medical care and the supportive services that so many people living with HIV—particularly women, who are so often heads of household and responsible for multiple generations living under one roof—need in order to stay engaged in care. The Ryan White Program is due to be reauthorized and remains desperately needed, particularly in states that have refused to expand Medicaid.

The Ryan White Program is working well, but the needs of people with HIV have changed and some women are still simply not able to access the services they need to stay in continuous care. “One thing that struck me is how many women need counseling and mental health assistance, but don’t know how to go about getting it,” said Pat Kelly of Orangeburg, South Carolina, one of the community-based researchers on the project.

For others, stigma or inadequate knowledge among medical providers means women living with HIV are not receiving comprehensive sexual and reproductive care that affirms their rights and desires to have families post-diagnosis. “I believe if more providers discussed the option of treatment as prevention with their patients, especially female patients, it would open up more opportunities for the patients to consider starting a family safely. For a lot of women living with HIV in their childbearing years, having a family is important. Many of them still think it’s not possible to do safely. But if this conversation starts happening with their providers, it will give them a choice and hope. All women should have that choice,” explained Evany Turk, research team member from Chicago, IL.

PWN-USA will be presenting more detailed information about these and other important findings of the project today on a webinar, “Securing the Future of Women-Centered Care,” at 1 PM EST/10 AM PST, and will host a Twitter Chat with special guests Greater Than AIDS and The Well Project at 3 PM EST to continue the conversation using the hashtags #NWGHAAD and #PWNspeaks.

The full report is available here.


women centered care graphic

Ending the Spectrum: A Timeline of Women’s Struggles Through a Gender and Human-Rights Lens

By Teresa Sullivan, PWN-USA Board of Directors

teresa sullivan
Teresa Sullivan.

“We, as women living with HIV, envision a life free from violence, coercion, and discrimination for all people. We, as women living with HIV, demand an end to the many different forms of violence faced by all women, including physical, emotional, psychological, religious, sexual, institutional, and economic violence, and the trauma that violence leaves in its wake.” — From Positive Women’s Network – USA’s Factsheet on Violence Against Women

When we hear the word “violence,” the first thing we visualize is the physical abuse of someone. And women living with HIV are indeed vulnerable to physical violence because of stigma and ignorance — a reality made brutally clear yet again a few weeks ago with the “sickening, devastating and heartbreaking” murder of Elisha Henson in Texas because of her HIV status. However, Positive Women’s Network – USA (PWN-USA) views violence through a gender and human-rights lens. For us at PWN-USA, ending violence against women includes ending a spectrum of human rights violations, including but not limited to physical violence, that women have faced for many generations throughout history.

For example, let’s journey for a moment through the 1940s and 1950s in the United States. Many women of this time faced the economic injustice of working for lower wages on factory production lines than the men they replaced who’d gone off to World War II. In doing this work, these women challenged the traditional ideals that a woman’s place was in the home attending to the needs of her husband. But this historic challenge didn’t translate to respect, equality — or physical safety. Within the home, many women not only experienced physical abuse by their husbands — “the physical beat down” — but had to make unhealthy choices to stay in relationships that were abusive, emotionally and otherwise, to keep social status, economic stability or shelter to raise their children. Women often had to depend on their husband’s income for their basic needs, such as food and clothing.

Many women also had no control over when to have sex with their husbands. Women’s reproductive rights — the right to have children, the right not to have children, access to safe abortions — were unheard of in this era. Women’s reproductive rights are human rights; viewed through a gender and human-rights lens, we can see that violation of these rights is a form of violence against women.

The psychological abuse that women faced in the era I described often caused them emotional and psychological trauma. As a woman who grew up in the 1960s, I personally experienced the trauma that was transferred from the women of the 1940s and 1950s to my generation of women of the 1960s and 1970s. Learning and working from that trauma sparked a second wave of the feminist movement. Feminist and other movements continue to be connected to the social justice movement I am part of to this day: the movement to end violence against all women.

In the feminist movement of the 1960s and 1970s, many women transformed from being passive to aggressively fighting for their human rights. The movement originally focused on dismantling workplace inequality, such as denial of access to better jobs, salary inequity, or freedom from sexual harassment. For some, it was just the right to have control over their own bodies. Most of these issues continue to be central to women’s justice movements today.

While the economic structure in the United States blocks opportunities for many people, women still face higher hurdles 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, useful and widely available options are still rare. Women are likely to be the caregivers of families; their healthcare needs are costly and invisible. Even with the Affordable Care Act, I still see our nation falling short when it comes to upholding the right to quality, affordable, and holistic healthcare for all women. This is a deterrent from entering the workforce, especially when a woman and her family are dealing with health concerns. Women of today’s generation are often incentivized to stay in poverty and stay sick in order to access public health benefits, since the prospect of accessing healthcare and making a livable wage can be bleak.

Experiences across the spectrum of violence against women — from economic to physical and sexual violence and beyond — continue to increase a woman’s susceptibility to becoming HIV positive. In circumstances where women are not able to receive the necessary means to survive and take care of themselves and their families, preventing HIV becomes a matter for an ideal world.

If our society truly wants to end violence against all women, we must discontinue putting a Band-Aid on the issues that women face — and do some sincere surgery on our culture.

Some of PWN-USA’s solutions and recommendations for ending violence against all women:

  1. Repeal all laws that criminalize HIV and provide sensitivity trainings to law enforcement officials, providers, health care workers, violence specialists, and child protection services.
  2. Institute comprehensive trauma-informed primary care programs in sites serving women and HIV-positive women.
  1. Build care providers’ skills to assess and address signs of violence and trauma.

Read more of PWN-USA’s solutions and recommendations for ending violence against all women


Teresa Sullivan is a member of PWN-USA-Philadelphia and a member of PWN-USA’s Board of Directors.



Can I Reach for the American Dream?

Can I Reach for the American Dream?

by Sonia Rastogi


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 Nicole Seguin, of PWN-USA, 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!

HIV Volunteerism: In Our House

HIV Volunteerism: In Our House

by Barb Cardell

“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.

PUSHING THE GLASS CEILING: Life, Liberty and Justice for HIV+ Women

PUSHING THE GLASS CEILING: Life, Liberty and Justice for HIV+ Women

by Nicole Seguin


“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?