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

By Rob Banaszak on April 25, 2013 in Access2Care

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.

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