I had lunch with 20 of our patients this week and asked them to teach me about “Barriers to HIV Care.” I asked,

“Are you aware of reasons that might get in the way of you coming to your doctor’s appointment?”

The lunch group listed the following reasons:

  1. Transportation — “distance, having a dependable car, public transportation, etc.”
  2. Depression — “If depression is severe enough, nothing else matters.”
  3. Stigma “What will others think of me?”
  4. Relationship with Medical Team“Does my Provider listen to me, does he/she care about me?”
  5. Fear “I might hear bad news.”
  6. Denial “I don’t want to admit to myself that I am HIV positive.”
  7. Shame “I feel so embarrassed about having HIV.”
  8. Frustration “Sometimes I have to wait so long to see my doctor.”
  9. Drugs and Alcohol“This can destroy the best of our intentions.”

Next, we talked about the above list compared to the response of 267 New patients who responded to the same question as above when they came to our clinic between May, 2008 and February , 2009 for Orientation. (These patients could mark more than one reason from a list given, so the percentages do not add up to 100%.)

  1. Transportation — “I do not have reliable transportation.” (31%)
  2. Depression — “Sometimes I get depressed and lose hope.” (10%)
  3. Stigma — I am concerned about others seeing me come to the clinic.” (10%)
  4. Relationship with Medical Team–“It depends on if I have a good relationship with my doctor.” (10%)
  5. Distance/Time — “I live a long way from the clinic and the distance or time is a problem.” (10%)
  6. Memory–“I have a hard time remembering appointments.” (7%)
  7. Phone–“I do not have a phone where I can be reached by the clinic.” (5%)
  8. Good Health–“If I am feeling well, I’m not sure I need to come to the doctor.” (4%)
  9. None—“Nothing will keep me from coming to my appointment.” (45%)

Transportation, Depression, Stigma, and Relationship with Provider are consistent in both groups and may give us some starting places as we develop a new project to help break down some of these barriers to care.The group’s advice to me was to start with getting people into mental health care immediately if depression is identified in Orientation, and spend just a little time reminding our Providers how they can continue to make a difference.

But what struck me most was the profound gratitude of the lunch group who said, “thank you for listening to us!” I have learned they are the teachers, I am the student.

They are also grateful for what this clinic is already doing to make their lives richer and more meaningful. Several of them have offered to see how they can help their peers break down the barriers to care as well.

I dream of a day when the barriers to HIV care will come tumbling down.

Today felt like another step in that direction.