Browsing Category: Access2Care

“Access to Care is not the Same as Actually Accessing Care”

Steve-Houldsworth-webby Steve Houldsworth,
Program Manager, BEACON  (Barrier Elimination and Care Navigation) Project
Saint Louis Effort for AIDS

She was only our second BEACON client. As I followed her down the steps to her basement apartment, I knew that our project was really going to make a difference. Her records in our statewide database showed that she had attempted to enter Ryan White case management three times over the past two years, but never made it to any of her enrollment appointments.  When I talked to her earlier that day, she was surprised that I was willing to come to her home to complete her enrollment.  And, when I arrived at her door, she hugged me and thanked me for coming.  As she told me her story, most of it matched my expectations of who the BEACON Project would serve.  She had been living with HIV for 10 years, but staying in care had been difficult because of mental health issues, transient housing, and transportation problems.  She had not seen an HIV specialist in the last two years. But, as I began to fill out the paperwork to enroll her for services, I was the one who was surprised. When I asked if she had any insurance, she pulled out her Medicaid card.

In the HIV world, we talk a lot about the need for people living with HIV to have access to medical care. Of course, access is necessary, but the BEACON Project has taught me that it is not sufficient.  Often people need someone with them to take that journey from denial to treatment.  As BEACON Project staff, we get to be that someone.

Our best estimate is that there are approximately 2,000 people living with HIV in the Saint Louis region who have not received medical care in the past year. If our first 150 clients are any indication, these 2,000 people are struggling with a range of issues, including HIV stigma, poverty, fear, homelessness, substance abuse, and mental health issues. Because our staff funding comes from a grant from AIDS United, we are able to take the extra time with those clients who need it most.  One client met with a peer advocate for more than 8 months before he was ready to even find out what his cd4 count and viral load was.   Another client spent months building rapport with our community nurse before she felt ready to trust another medical professional.  One important lesson I have learned through the BEACON Project is that the power of personal connection cannot be underestimated.

We live in interesting times.  The Affordable Care Act and Medicaid expansion will most likely provide access to medical care for significant numbers of people living with HIV who have not previously had insurance.  This change will make a profound positive difference in many, many lives. However, the BEACON clients have taught me that having access to care is not the same as actually accessing care.

Sharing Our Passion for Helping HIV-Positive People Get into Care

Roman-AFCby Roman Buenrostro, Director of Special Projects
AIDS Foundation of Chicago

I recently had the pleasure of participating in the third evaluation convening meeting for AIDS United access to care grantees in Baltimore, and invariably colleagues asked me upon my return how the meeting went and what did I learn from the meeting. After this last meeting I had an epiphany for how I should describe these convening meetings in the future- inspirational fellowship. Now I am the last person to describe things with religious language, and anyone who knows me can testify to that! But in many regards these meetings are just like going to church or bible study for me. It is a group of like-minded people sharing their thoughts, ideas, creativity and passions in something we are all very committed to: getting and keeping people with HIV in care.

Sometimes it seems like I become so focused on our access to care projects here in Chicago, the challenges of identifying people lost to care, addressing issues of HIV stigma and homophobia, that it seems we can never accomplish all that needs to be done and our efforts are just a drop in the bucket. Then I go to these convening meetings and I am reminded how many brothers and sisters in ending HIV there are across the country. I see how other projects have evolved that are just like ours across the country. For example, our Connect2Care project has begun to experience challenges in reaching out and engaging medical providers to partner in re-engaging people into care. After this meeting I feel renewed to step up and lead new efforts to engage medical providers and offer them my “fellowship.” I want to really begin to acknowledge that to work together effectively we must recognize that we share the same goals, we want to connect people to care to improve their health, the health of their families, and the health of our communities.


l to r: Roman Buenrostro, AFC; Nicholas Alvarado; Bay Area Network for Positive Health, Vignetta Charles, AIDS United at the A2C Evaluators Convening.

And this work can’t be done alone- it requires our IN-CARE Project peers to laugh, listen, and educate folks on the importance of primary care, it requires our Connect2Care Coordinators to entice and cajole primary care providers to collaborate on linking people who need care to that care.

Our access to care work requires relationships to be built and maintained. I, and the organization I work for have always valued relationship building, both with our clients and our partners. AU’s access to care grants have been in instrumental in giving us the resources to focus on relationships to get people into care. Now more than ever it is the key in helping us move closer towards a generation where HIV is managed and controlled, and no more new infections occur.

AIDS Foundation of Chicago (AFC) is a grantee of AIDS United’s Access to Care Initiative.

“I Am Not Alone”

An interview with


NOTE: This blog post also appears on the website of The Well Project here. As part of AIDS United’s Access to Care initiative, AIDS United and The Well Project are working together to share the stories of several HIV positive women, their journeys of getting into the life-saving care they need, and their experiences of attending the International AIDS Conference in Washington, D.C.

“What are some of the barriers to accessing HIV care have you experienced?”

The insurance company assigned an infectious disease specialist (IDS) as soon as I was diagnosed. My husband and I requested that we went to a doctor that wasn’t near our house. At our first appointment, my doctor told us that we had about 2 years to live. I left the office and got a new doctor. It wasn’t necessarily the barrier to access it was the stigma of going to a doctor in my town. We lived in a small town of 17,000. My husband and I went back to our primary care doctor and asked him to follow our case. He monitored our lab work every three months—which was more like six months. When we were diagnosed we didn’t have any symptoms so I didn’t see the need to see him more often. We still drove 80 miles one way to see a doctor.

It wasn’t until I got pregnant with my youngest child that I saw a IDS. I still drove 80 miles one way to see this doctor.

“How have you overcome those barriers?”

After over 10 years of traveling to go to my doctor I looked for specialists in a nearby town. This town was half of the distance and my insurance company agreed to cover this doctor even though they were out of our plan coverage. I talked to my husband and told him that this doctor’s office was attached to other offices and not only to infectious disease, he agreed to go. (I think he was tired of the drive too).

Since we made the move to the new doctor I have been more compliant with my laboratory work and doctor visits. I am not afraid of running into people we know, and if we do there are many other doctors in the building.

“What made you want to start learning more about/taking action in the fight against the HIV epidemic?”

I was not fighting this epidemic; I was surviving it by ignoring that it existed. I would get up every day and live my life. I kept myself busy with my children’s sports activities (I wouldn’t just attend, I coached and became a board member for 10 years), my work, my schooling. Even though I was extremely busy, I felt so alone. I couldn’t talk to anyone about this disease in fear I would alienate myself and my family. I finally needed to reach out and looked online to find others like myself. I just knew there had to be other women I could talk to. I never thought of myself as an activist in the fight against HIV. I was in this for myself, this was self-preservation. I didn’t know there were other people like myself. I needed to connect with others so I didn’t feel so alone. (See Jae’s blog: Hello! I have HIV!!)

“What were you expecting to learn about today that you didn’t know before you came to IAC?”

I really had no expectations from this conference. I really didn’t know what to expect. I was surprised. I met some really strong women that had the courage to stand up and speak openly about HIV. I met Ms. Plus America (Michelle Anderson); she is living and surviving with HIV. She is an inspiration to me. She is making a difference in so many lives and I hope I will be able to make a difference too.

“What did you actually learn from your experiences at IAC?”

I am not alone. I am one of many. We have jobs, kids, and lives. Life doesn’t stop because you are HIV positive. Sometimes it’s nice to know you have a friend that truly understands you.

“How will you apply what you have learned to your day to day life and/or in your community?”

I am going to go back and speak to the youth groups at my son’s high school. I will also be going to contact the local AIDS Organization and attend some of their open forums, to see what they are actually doing for women in our community.


Moving Beyond Shame

Kate image Hope Tatoo

NOTE: This blog post also appears on the website of The Well Project here. As part of AIDS United’s Access to Care initiative, AIDS United and The Well Project are working together to share the stories of several HIV positive women, their journeys of getting into the life-saving care they need, and their experiences of attending the International AIDS Conference in Washington, D.C.

I’m incredibly fortunate that I have not had many barriers in access to treatment for my HIV.  I have great insurance, the ability to pay for my medications (through my co-pay) and even a Health Savings Account (HSA).  A Health Savings Account (HSA) allows you to specify a certain amount of each paycheck toward health care expenses, such as co-pays.  This is great because it is pre-tax, is deducted from your paycheck each payday and the amount you allocate is available in full at the beginning of each year.  Honestly, the HSA has been my saving grace because I don’t have to budget for my family’s medications the majority of the year (until our HSA has been exhausted at least).

My biggest barrier in accessing treatment has been myself.  I must overcome the embarrassment and shame each time I go to my doctor.  Honestly, I still get nervous after more than 5 years of treatment.  Even attending the dentist or family doctor makes me anxious.  I often wonder if the staff talks about me, asking questions amongst themselves and speculating how I became infected or what I must have done to “deserve” this.

I struggle with whether or not I should even disclose to some health care providers, simply out of embarrassment.  Now, I have always disclosed to health care workers, I assume I’m protected by HIPAA (in the United States, health care information is considered confidential through federal law), but I still have a moment of hesitation.  The stigma associated with HIV scares me to even disclose to many of my friends and family.  I feel like I have worked so hard over the years to build a reputation of an intelligent, successful woman and fear rejection of those around me.

My husband has helped me in beginning to overcome this barrier.  Sometimes it’s hard to admit when your husband is right!  My husband has been supportive throughout this process.  But over the past year, has been exceptionally supportive.  He, like anyone, needed time to cope and deal with his diagnosis.  Once he was comfortable with his status and the fact that he didn’t do anything to “deserve” this, he has encouraged me to do the same.  He often tells me “Who cares what they think!  We didn’t do anything ‘wrong’ and shouldn’t be embarrassed.  We’re a loving family.”  (Again, I hate to admit when he’s right!)

My husband’s acceptance of our HIV status has led me to seek ways that I could advocate for those living with HIV, particularly in lifting the stigma attached to such a diagnosis.  Just as women have fought for women’s rights and the gay population has fought for gay rights, we affected by HIV must fight for HIV rights and thus reduce the stigma.

In attending the AIDS 2012 conference, I attended a session entitled “Women in HIV Research; Affecting Change“, which was organized by The Women’s Research Initiative on HIV/AIDS (WRI) and Dawn Averitt Bridge (which just so happens to be a part of The Well Project).  I had expected to hear how women were so cooperative and adherent to research studies.  After all, women seem more responsible than men!  But I learned that women face more barriers when participating in research studies.  According to the Women’s Research Initiative on HIV/AIDS, “women may face different logistical challenges than men when participating in research, such as familiarity with research sites and facilities, childcare and transportation challenges and lack of partner/spousal support of research participation.”  Honestly, I hadn’t considered this, but it made perfect sense!  I simply hadn’t been personally affected by these barriers, so had not considered them fully.  I am so grateful to have my own transportation, a supporting family to help with childcare and general support.  I pray for the women who are not as fortunate.  All women living with HIV are beautiful and deserving of research studies and treatment in general.  My hope is for everyone to be able to access those services and support which they need.  We are all worthy!

AIDS 2012: Two Days Down

Beth StringfieldBy Beth Stringfield, Project Coordinator, Positive Charge Initiative

We must have strong backs to support those who are tired… we can change the story of AIDS…courage, dignity…HIV and poverty are intertwined…achievable…unleash the power…communities lead the way. These are some of the words and images that have shaped the first two days of the International AIDS Conference for me.

As I have listened to speakers, watched films, read posters, and talked with fellow participants, there is a sense that we truly are at a turning point in the epidemic; there is excitement about the evidence that continues to build upon itself that treatment is prevention, that medications are again changing the trajectory of the HIV in the course of history.  But that is tempered by frustrations over conversations that recur year after year – overlooked populations, stagnant systems, and relying on medication as the solution to HIV without addressing the social factors that so heavily impact HIV transmission and access to care

Poverty, fragmented systems, racism, violence, and fear are among the many companions to HIV that we must find human solutions to. It’s a daunting task, and having not solved those problems over the course of human history, chances are slim that we’ll solve them in the next few years. But it doesn’t mean we can ignore them either.

Access to care work is not simply about finding medical care providers for our clients and scheduling their appointments. It’s about recognizing and acknowledging that social factors are as much at play in one’s ability to be healthy as medications and medical appointments are. We must work for safe housing for all, transportation systems that meet the needs of our rural folks, societies free of racism, communities in harmony, and families that embrace and value all members.

But knowing that this work will take time, access to care is about helping clients meet the daily needs of living that can then allow them to focus on HIV, and further it must also be about helping a client set goals, exploring personal motivations to stay sober, practicing communication, determining values, and planning for the future. Essentially it is helping clients to build the skills to excel in spite of the challenges that continue to surround them; to be better than HIV. That is what access to care is about.

Perhaps, if we are truly on the cusp of achieving treatment as prevention, we can now turn our attention to the other co-morbidities that no pill can help.

Beth Stringfield works on North Carolina Community AIDS Fund’s Positive Charge access to care program, funded by AIDS United and Bristol-Myer Squibb.

The White House Hosts Conference in Atlanta on HIV/AIDS in LGBT Communities

Charles StephensThe White House held a conference focused HIV/AIDS in LGBT communities on the campus of Morehouse School of Medicine on Thursday April 19, 2012. AIDS United Southern REACH grantee Georgia Equality, was instrumental in the planning of the historic event with other key community stakeholders in Georgia.

The conference opened with remarks from Gautam Raghavan, LGBT liaison in the White House Office of Public Engagement. Following him was Dr. Valerie Montgomery Rice, Dean of Morehouse School of Medicine (and former AIDS United Trustee), who urged the community to transform “health disparities into health equities,” and highlighted Morehouse School of Medicine’s commitment to ending health disparities in marginalized communities.  Rounding out the early morning speakers was Dr. Grant Colfax, the recently appointed White House Director of National AIDS Policy, who spoke about the possibility of achieving an AIDS free generation.

Dr. Kevin Fenton, Director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the Centers for Disease Control and Prevention (CDC) talked about the impact of HIV/AIDS on LGBT communities in general, and young black men that have sex with men (MSM) in particular. There has been a sharp rise of HIV infections among young black MSM, which is a 50% increase between 2006-2009. Dr. Fenton went on to talk about some of the drivers of the epidemic, including social factors like stigma, among the country’s more vulnerable populations. Fenton was particularly passionate about the role homophobia plays in the epidemic in LGBT communities, and insisted that a more holistic approach has to be adapted in grappling with the social drivers of the epidemic. Dr. Fenton also indicated that as education and income decrease, HIV prevalence increases. He affirmed CDC’s commitment to the health and wellness of gay men, and said that the agency will be launching more social marketing campaigns as well as other initiatives to target vulnerable populations.

The first panel of the day “Overcoming Disparities, Getting to Equity,” was moderated by Allison Nichols of the U.S. Department of Justice.  The panelists included: Loida Bonney of Emory University, Beverly Guy-Sheftall of Spelman College, Rhonda Holliday of Morehouse School of Medicine, Reverend Edwin Sanders of Metropolitan Interdenominational Church and Patrick Sullivan of Emory University. Sullivan asserted that “homophobia is a Public Health hazard.” The panelists went on to talk about the lack of resources and challenges faced by the transgender community in accessing HIV care.

The second panel was led by former Surgeon General David Satcher on “Improving Health Outcomes through Science, Policy and Practice.” The panel included Vignetta Charles, Senior Vice President of AIDS United; Michael Horberg of Kaiser Permanente;  Vel McKleroy of CDC; and Patrick Sullivan. The panelists addressed how to best overcome the barrier between Science and Policy, the importance of looking at not only the challenges of the transgender community but also the resilience. Vignetta Charles indicated that AIDS United’s Access to Care program works closely with LGBT communities, and pointed out how everyone in the room is impacted by anti-gay stigma.

David Malebranche, Professor at the Emory University School of Medicine, was the lunch time plenary speaker and provided fascinating insight into the nuisances of sexual pleasure and sexual health. He also spoke about the importance of addressing intersectionality, which is the multiple identities that we inhabit, and how those identities shape our worldview.

The afternoon wrapped up with a series of workshops which included: Leadership Development and Organizational Capacity Building for LGBT Organizations, Medical Provider Readiness, Successful LGBT HIV Prevention and Access to Care Programs, Needs of MSM and Transgender Youth, Community Partnerships, and Couples.  The conference provided an excellent blueprint for how we address the disparities of HIV in LGBT communities. The next White House LGBT Summit will be in Minneapolis, MN on April 28.

Charles Stephens is the Southern Regional Organizer for AIDS United. You can follow him on twitter @CharlesAUsouth