my querencia
The liver cancer had finally decided to end the war, and it overwhelmed his body. His skin was yellow, his abdomen extended in the air, full of fluid, defeated. When a person’s liver breaks down, spikes in ammonia levels cloud cognition; his eyes, vacant, indicated that he was not quite here.
I sat stupidly on a stool, nauseous from the smell of death. We had cured his hepatitis C (HCV), but it had already created the irreparable damage that led to liver cancer. We had battled it back once but now it proved to be too much.
“We can’t fix it. There’s nothing left to do now.”
His wife knew this in her heart, but it was my duty to speak the words. I’ve been doing this work for more than 20 years, and this conversation gets worse each time. It’s like drowning slowly. For better or worse, I’ve never hidden my emotions in the exam room. On this day, something broke, and I cried hard and ugly. Something about him and our time together had changed me.
He stood slowly and pulled me up. This man, skeletal, his body depleted, held me like a child. He was suddenly lucid and present.
“No llores mijo, ya casi termina.” Don’t cry son, it’s almost over.
I cried for all I was worth. I cried for all of them. His soul felt strong and powerful.
For the past decade, La Bodega at Erie County Medical Center in Buffalo, New York, has provided care for individuals with hepatitis C (HCV) and addiction disorders.
Our program is globally recognized for HCV elimination based on community outreach and co-localization of HCV and addiction management. Located on the hospital’s first floor, the clinic is a bullpen-like area where the staff spends ten hours a day together, surrounded by eight exam rooms.
The front window’s pull-down metal gate, reminiscent of a bodega, is part of how the clinic derived its name. But bodegas are also community gathering spaces, and our small clinic is a place where all are welcome. A massive black and white flag, emblematic of our philosophy and visible from the front window, declares “Come One, Come All.”
The Bodega is a personal dream realized, and what I hope is a place where all people find strength, comfort, and a degree of peace.
portrait by m. dellas
To eliminate a disease, we must first find it. Screening is the first pillar of HCV elimination. This is followed by linkage to care and treatment initiation. The staff at the Bodega spends innumerable hours working with community partners in addiction medicine clinics, corrections, STI programs, foster care, shelters, and everywhere else HCV may live, educating and developing screening protocols based on the resources available to each referral site.
One of the significant barriers to HCV linkage to care is system navigation, and we have worked to eliminate this by navigating the system on behalf of patients and referring providers. As a result, 8,000 patients will pass through our doors annually. When a patient comes to us, our co-localized approach means that HCV therapy is initiated immediately and paired with medically assisted therapy as required for opiate dependency. Counseling services are available on-site, along with HIV treatment and primary care.
There are no incentives to come, yet the clinic’s show rate is over 80 percent. I’ve long believed that the most significant motivation for patients is to feel that they are authentically loved and respected.
The World Health Organization aims to eliminate HCV by 2030, a target the United States is not close to hitting. This is in large part due to treatment restrictions surrounding sobriety, prescriber type, and degree of liver damage. While these restrictions have begun to fall nationally, they remain in place in many states. Sobriety requirements are especially troubling. Would we ever withhold chemotherapy from a patient with cancer until they quit smoking, or insulin from a person with diabetes until they modify their diet?
Simply put, we cannot eliminate a disease if we are not allowed to treat it. Seventy percent of new infections in the United States are acquired via injection drug use, yet less than ten percent of patients with active substance use have received treatment. Left untreated, one individual might infect 20 others within three years of initial diagnosis.
The COVID-19 pandemic has only poured gas on the fire. Screening declined 73 percent, and new treatment starts declined 22 percent. Additionally, rates of opiate-related overdose increased by 30 percent, with more than 100,000 overdose deaths in 2021. There is a clear correlation between opiate-related overdose, treatment admission, and new cases
of HCV.
Treatment facility admissions for injection opiate use have increased by 622 percent in individuals between the ages of 18 and 29, with a 400 percent increase in new cases of HCV in the same age group. Fueled by the injection drug use epidemic, new cases of HCV are far outpacing treatment starts. If we are to achieve elimination, we must do more to reach patients with both HCV and addiction management services.
Since the arrival of new, highly curative medications in 2015, the Bodega has treated close to 4,000 patients for HCV, most of whom are active injection drug users.
At its core, the Bodega is a visceral experience where one tastes, smells, hears, sees, and feels what human nature has to show us about survival and redemption.
It embodies what it means to meet people where they are. The concept is frequently discussed as it relates to HCV elimination, and it’s literal sometimes, as with our deployment of mobile units and street outreach to patients. But the concept is often more abstract. Meeting people where they are can mean establishing a truce with a reality that is not our own and then willingly immersing ourselves into that reality.
For many years conventional medicine has focused on a “patient readiness” approach to HCV management with an emphasis on “challenges” and “barriers” like active substance use, lack of housing, food instability, and psychiatric co-morbidities. But for many patients, these have long been their realities, and they may never approach a level of readiness or stability that a provider is comfortable with. To increase uptake into care, we as providers must be willing to overcome our discomforts and perceptions to meet these people where they are.
I’ve been asked many times why our approach at the Bodega works, and I always tell people that it starts with the staff. Every hand-picked member of our staff contributes their unique personality and set of skills to the greater whole of the program, working toward our shared mission.
It’s rare as catching lightning in a bottle to find yourself surrounded in life and in work by the most beautiful souls in the universe. Yet here I have found myself at the Bodega, part of a small, dedicated team that operates as a family. Our patients’ lives are better because of our staff. I know that mine is.
Our staff is also essential to each patient’s sense that they are in a safe, stigma-free environment. That sense of safety and comfort is critical for individuals to build trust. So there are no white coats in our clinic–but there are a lot of tattoos and denim. Everyone goes by their first name, and we employ no hierarchy of titles. (I can’t tell you how many times a patient has asked after I, their doctor, have left the room when they’re going to see the doctor.)
Patients have our cell numbers and our emails. Letting them know that they can reach us for an emergency prescription over the weekend is surprisingly effective in building a relationship of trust with them. Do we occasionally get a midnight call from jail? Sure. But when it means avoiding a missed day of HCV medication, it’s worth it.
Patient scheduling is also crucial; we have a schedule with appointment dates and times, but they’re more suggestions, rough guidance. There’s no 15-minute grace period, no “three missed appointments and you’re out of luck” rule. Show up an hour–or two days–late? We’ll still see you.
I worked in a rural clinic about two hours outside of Guadalajara, Mexico when I was a first-year medical student in the city. One evening, after the clinic had closed, my attending, Dr. Guyton, was outside smoking a cigarette while I cleaned the clinic. Around nine o’clock, a woman showed up, some ten hours past her scheduled appointment time. She explained that her bus had never come, she’d had to walk to the clinic. Dr. Guyton stubbed out his cigarette, turned the lights on, and told me to bring her into the office. He also sent me across the street to get her food and water. “She could have just gone home,” he told me, “but she came. So we owe it to her to be of service.” Three weeks into my medical career, in the middle of nowhere Mexico, I learned the most valuable lesson of my career, the true essence of medicine and what it looks like to meet a patient where they are.
One of the most beautiful aspects of the Bodega is the ceremony when patients find out they are cured of HCV. After an individual is cured, they sign the walls of the clinic. The messages inscribed on the walls vary, from scribbled initials to long notes of gratitude–even some thumbprints have made it into the mix. After they’ve left their mark, the patient rings a cure bell. The original bell was a mounted dinner bell, but one exuberant patient pulled it from the wall. (The hole is still there, covered with a sticker.) After that, we installed a legitimate cowbell, a massive, and significantly louder, upgrade. If a patient is ringing the bell, you can bet there’s not a dry eye in the place.
HCV cure and that small ceremony at the Bodega mean something different to each patient. It can be a moment of empowerment or a moment of relief, a weight lifted. For some, it’s an ending, the closing of a chapter of their life, a darkness left behind. For others, it’s symbolic of a new beginning, a positive step into their future.
The place sounds amazing, no?
The truth is that the raging opiate crisis continues to overwhelm us. Sometimes, La Bodega exists as a sort of no man’s land between fertility and dust, where progress is slow and everyone struggles to survive. Some days, it feels like the last stop on earth. The stories of trauma and destruction are overwhelming, and the dark attempts to snuff out everything in its path. It can be hard to find hope in the sea of destruction.
But that these people are there at all, still trying, is the truest reminder to keep pushing ahead. I often wonder if our patients know how much they give us, how much they teach us, and how much better they make us.
“How did you feel the first time you came into the clinic?” I recently asked one of our long-standing patients as he signed the wall during his cure ceremony. “I loved it. I’ve loved it ever since. This is the first place I’ve even come for help that actually saw me as a person, and treated me like a human. It helped me find strength. This clinic is the reason I’m still alive.” Then he rang that bell as though he wanted to crack the earth in half, its echo signaling the promise of hope.
In Spanish, we have the word querencia. In essence, it’s a magical place of safety, where one feels at home, where one finds their own soul’s strength.
After I lost my patient, I only wanted to be in one place. La Bodega was quiet, its gate pulled down. Even in the calm, an unmistakable energy vibrated through its walls, the names covering them testaments to resilience and redemption.
I don’t know what the destiny of La Bodega is, but I know that it strives toward service to the greater good. Drawn forward by some invisible force, we walk together with our patients, knowing that we all have a purpose, a mission rooted in love and all that defines love–passion, awe, allegiance, respect, justice, and compassion.
La Bodega is my querencia, and I owe my own life to every person who has walked through its doors.
Tony Martinez is a physician specializing in Hepatology and Addiction Medicine at Erie County Medical Center in Buffalo, New York.