7) Why is HIV Care So Good?
The morning after my HIV diagnosis, I called my sister, Rebekah, to tell her the news. My sister is my rock, the person I've been closest to since I was born, so I knew I would get unconditional support from her. In some ways this emotional connection made my reality sink in even further. We sobbed on the phone together, her husband - my wonderful brother-in-law, Manuel - trying to comfort her on the other end of the phone. But Rebekah is a take-charge kind of person, so the crying didn't last long. She immediately made plans to take an afternoon train down from Manhattan and cleared her work schedule for that week so she could help me adjust to my new reality, and accompany me to my first appointment with my HIV specialist.
My OB/GYN had set up the appointment with "Dr. R" (as I'll refer to him), promising me that he was one of the best in the city. My sister and I arrived at Dr. R's office a little early the morning of the appointment, feeling a a bit anxious, not knowing exactly what to expect. When a nurse called my name and opened the waiting room door for us to walk through, Dr. R was standing there in the hallway, waiting to greet me. After introducing himself, he took my hand and covering it in his, looked straight in my eyes, and said gently,
"How are you doing?"
I don't remember crying, but I'm pretty sure I blinked back a few tears. There was such compassion in his question. He didn't pull away from the uncomfortable emotions that were present in that moment. Instead, he continued to stand there, looking both of us in the eye, and saying - several times:
"It's going to be ok."
We sat and talked for a long time that morning. It was more like a conversation between three adults than a doctor and patient consultation, and by the end of it we felt like we'd known him forever. While we were talking, one of Dr. R's two dogs that he brings to work, a golden retriever named Boomer, wandered into the room and I wrapped my arms around him. Seeing this, Dr. R said, "Stay, Boomer", so the dog plopped himself at my feet for the rest of the time we were there. After we'd left the office, and were standing at the elevator, my sister turned to me and said, "Do you think he's human? He seemed more like an angel."
The amazing thing about Dr. R is that he continued to be an angel for the next three years, until I moved to California, and he did so in spite of whatever was going on in his life. About six months before I moved away, he suffered the loss of his husband and life partner, who had been suddenly taken by cancer. I attended the memorial, which was beautiful. There I met people who had known Dr. R and his husband throughout their lives together, which reminded me that a significant reason why Dr. R was and is such an incredible physician and person is because he had already suffered the loss of many people in his life, due to the HIV epidemic in the 80's and 90's. He was one of the first providers in DC during those years, and literally lost hundreds of patients. He was also an HIV survivor himself. The work was personal for him.
When I moved to California in the fall of 2015, I had - not exactly low expectations - just - not high expectations for my next HIV provider. I figured Dr. R was one of those crazy statistical outliers and now I'd be experiencing care somewhere closer to the median. But when I found the East Bay Aids Clinic (EBAC), which runs out of a Sutter Health hospital in Oakland, I was amazed to discover the same "secret sauce" (as I like to call it) at work. Because EBAC is run out of a hospital, it works a little differently than a primary care office. But the model they use is brilliant.
First, they assign you a care team, so if you can't get a hold of your doctor, you can instead call the nurse on your team, or the admin, or the social worker. Everyone on the team knows you and your conditions and your medications and your history and when you came in for your last appointment, so you don't have to re-explain this when you call them. Oh, and when you call, they actually call you back. Yes, they do! So, I began seeing the HIV doctor (Dr. T), but was so impressed with the team care that I was getting that I just stuck with EBAC for all of my care. Dr. T triaged me if I needed something special outside EBAC's resources, but otherwise they took care of everything. It was the first time in my life, actually, that I had nearly all my care truly coordinated out of one place, with one team of providers. For a decade, I had been juggling between 3-6 specialists on a routine basis, none of whom communicated with each other. It basically took an HIV diagnosis to get me really good healthcare. And although I lost access to EBAC when I switched over to Kaiser, it's worth noting that every encounter I've had with the HIV clinic at Kaiser has been positive.
So what are the common denominators that are contributing to such consistently good quality care? To answer that question let's do a quick review of the problems I've talked about in earlier posts, the problems that are preventing good care from being delivered. I've mostly focused on two specific aspects of patient care - one is the aspect of human relationships inside healthcare institutions. The other is the holistic nature of patient care, that you have to recognize that patients are also people, with a whole life, and that whole life determines how healthy or sick they will be - not just what they do inside a doctor's office or hospital room. With those two things in mind, let's see what we can learn from HIV care.
Because of our country's fairly recent history with the HIV/AIDS epidemic, people who work on this issue tend to be either those (like Dr. R) who were personally affected, or those (like my EBAC team) who are living "close to the pain", in a community like Oakland, CA, where HIV rates remain high. They recognize that HIV has borne and continues to bear a significant social stigma, especially for particular ethnic groups - which makes the diagnosis and treatment process more complicated. As a result, HIV providers have been forced to do something that few other providers have to do - tackle the issue of shame, and create an atmosphere where it is safe on both sides to be vulnerable and honest. For many people, it takes a special kind of courage to even admit that they have this disease - getting treated requires them to engage in that reality on a regular basis, to walk into a physical space where other people have the disease and show their face as one of those people. HIV providers (and I'm including all of the staff in that term) often take on the role of social worker in addition to being a doctor, nurse, office administrator, physician's assistant.
I'll give you one more example of this. In the months following my diagnosis, Dr. R not only provided me with resources like websites, pamphlets, etc. that would help me learn about living with HIV, but he himself offered to be that resource in helping me navigate some of the harder conversations I had to have in the beginning. He offered on more than one occasion to sit down with a number of people in my life to help explain HIV and what it is and isn't. This is above and beyond what "normal" doctors do, but it's what HIV providers see as part of their work, and it builds invaluable trust between patient and physician.
Walking in to an HIV office, it almost feels like every exchange I have begins with a secret handshake. There is an unspoken acknowledgment that we are in this club together (#solidarity!), that the staff know what I'm going through as a patient, that I know they're here to help me no matter what, and that it's going to be ok. There is a sense of intimacy that is rare among strangers, and that goes a long way toward making the conversations more honest.
The other aspect of healthcare that is so difficult to tackle is . . . all the other stuff . . . all the socioeconomic factors I talked about in my last post. HIV providers and advocacy organizations get this - not just on a conceptual level. They get it on a really practical level. Helping patients handle their costs, for example, is part of what they do. When I first started on medication, Dr. R inquired about what kind of insurance I had, made sure I was able to afford what I was getting, and gave me two co-pay cards that would bring my costs down to $0. Do you remember back in my first post, when I was standing in line at the Kaiser pharmacy in Oakland, and wasn't able to pay for my HIV medication because they were too expensive? After trying to work with Kaiser for six months to get some kind of financial aid, I finally called my former doctor at EBAC and asked her if she had any ideas. She put me in touch with EBAC's amazing financial aid counselor, who asked me to come down to their office the next day so that she could help me apply for ADAP - the AIDS Drug Assistance Program. ADAP is a national organization that exists solely to help HIV positive patients get access to their medication, but the way that it does this is to cover the cost of not only their medication, but any additional medical costs that might be prohibiting their access to those meds - such as insurance premiums, doctor co-pays, etc. In other words, it looks at the big picture.
Income inequality, racial disparities . . . these are very real issues among the vulnerable populations that see higher rates of this disease. In order to be effective, those who practice HIV medicine have had to be about 10 steps ahead of the vast majority of healthcare when it comes to connecting and addressing all the factors that affect people's health. I don't want to make it sound like the problems are solved, because they're not. In places like DC and throughout the South, the rates are still very high. What I am saying is that my own experience, when comparing the care that I get as an HIV patient vs. the care that I get seeking treatment for any of my other conditions, is vastly different. So many of the elements that seem to be missing across our health system - a lack of coordination, patient-centeredness, communication, trust, basic human kindness, containing costs, timeliness - are in place here. In fact, when I mentioned this to my HIV doctor at Kaiser, she kind of smiled and said, "Yeah, there's something about HIV care . . . we usually figure out a way to get it right."
I realize that replicating a model like HIV care is not like copy and paste. As I've said before, I believe every system needs its own powerful stories to enable trust. The HIV community is built on unique stories of life and death, of grief and loss, of shame and betrayal on a personal and societal level . . . stories of love and redemption, of hope and miracles. You can't fake that, or re-engineer it. But you can learn from it.