BMJ 2015;350:h1517 doi: 10.1136/bmj.h1517 (Published 20 March 2015)
Page 1 of 2
Views & Reviews
VIEWS & REVIEWS PERSONAL VIEW
US healthcare: how losing your job can kill you in the world’s richest country Healthcare should be a right, not a privilege, says Jennifer Corbelli, telling the story of a US woman born with HIV who died an untimely death after she could no longer afford antiretroviral treatment Jennifer Corbelli assistant professor of medicine, general internal medicine, University of Pittsburgh, Pittsburgh, PA 15213, USA “It’ll be fair before you die.” Of the many lessons I’ve learned from my oldest mentor, this is one of my favorites. It has endless applications, whether you’re dealing with a 4 year old or a 40 year old. Your brother ate the last cookie? Fair before you die. You’re working two Christmases in a row? Fair before you die. This little adage never lets me down when confronted with someone’s off-base self pity. Or when, not uncommonly, I need to give myself a reminder to quit whining. I wish I could say the same when confronted with the harsh realities that so many patients face; once I walk into a patient’s room, it lets me down all the time.
In Melody’s case, it wasn’t fair even before she was born. She and her twin sister were born with HIV. Her mom and dad had HIV. Her older brother had escaped this family fate and was the only one still alive to see Melody’s high school graduation. But Melody had tenacity. Although no one would have blamed her if she’d given up on life, she did the opposite. She went to nursing school and built a career. She had a huge group of friends, prom dresses and bridesmaid dresses, and every reason to look forward to her wedding dress.
Wasted, delirious, broken
I knew none of this when I first met a wasted, delirious, and broken 28 year old woman. Melody was admitted with weakness and mental status changes and was found to have a CD4 count of 2 cells/mm3, as well as abnormal magnetic resonance imaging (MRI) that generated a huge list of diagnostic possibilities, none of them good. We learned later—after seeing pictures of her, beautiful and beaming in a bridesmaid dress—what her breaking point had been. The point at which her future, everything she had worked and hoped for, had disappeared. Not drugs; not alcohol; not the nonadherence that happens every day. Melody’s life broke when she lost her job. And so she lost her literal lifeline—her antiretroviral drugs. With no insurance and no job, she couldn’t afford them. I don’t know whether it was her T cells or her dreams for her future
that vanished more quickly, but pretty soon both were gone. Her spirit hadn’t left her, but it would eventually follow.
Asleep or terrified and hurting So we did what we could. Antiretrovirals, antibiotics, antifungals; and opiates (always too little or too much—Melody was either asleep or terrified and hurting). Her brother and eating were the two things that still made her happy. Every morning anyone who passed Melody’s room saw a strong, healthy, tireless man painstakingly and lovingly feeding his exhausted, emaciated sister.
Soon she began to cough with each attempt at eating. She became too weak to swallow safely, so that joy disappeared too. She fought us over the nasogastric tube for a day or two, her spirit still raging, but then she gave in because she was hungry. Her brother held her hand as we placed the tube: he knew that Melody would be a champ, and she was. She started to require suctioning every two hours. Before long she cried and bled every time she was suctioned, but she took it because she was still tenacious and because she wanted to keep fighting to breathe.
“Let me die” Melody’s breathing grew faster as her body grew weaker. She agreed to mechanical ventilation but made her brother promise that, if she needed it for more than a few days, he would take her off the ventilator and let her die as comfortably as possible. A week later he asked her if she was ready, and she nodded. She went as comfortably as possible.
Melody is at peace now, and we’re left with the aftermath. Some of it is good. Melody’s strength, and her brother’s selflessness, will stay with all of us who were privileged enough to bear witness. Melody and her brother will help all of us to do better, in our work and in our lives.
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BMJ 2015;350:h1517 doi: 10.1136/bmj.h1517 (Published 20 March 2015)
Page 2 of 2
VIEWS & REVIEWS
But much in the wake of Melody’s death is infuriating. She was extraordinary in the tragic circumstances of her birth and the full life she led despite them, but her story is not as extraordinary as it should have been.
Obstacles in our fragmented healthcare system In the United States we continue to live in a society where Melody died an untimely death in large part because she became uninsured. Did she do everything she could to get her drugs? Maybe not: no one can know exactly what obstacles she faced in our fragmented healthcare system, how she navigated them, or her state of mind as she did so. Maybe after losing nearly everyone in her family and then losing the pride and livelihood secured by her job, some of the fight that she’d managed to
For personal use only: See rights and reprints http://www.bmj.com/permissions
preserve for so many years left her. And maybe a part of her thought that she shouldn’t have had to fight for treatment of the disease that had been her terrible birthright. Of course, “fair before you die” will always be a fairy tale. Healthcare as a right, rather than a privilege, doesn’t have to be. Competing interests: I have read and understood the BMJ policy on declaration of interests and have no relevant interests to declare. Family consent obtained. Provenance and peer review: Not commissioned; not externally peer reviewed. Cite this as: BMJ 2015;350:h1517 © BMJ Publishing Group Ltd 2015
Subscribe: http://www.bmj.com/subscribe
Page 1 of 2
Views & Reviews
VIEWS & REVIEWS PERSONAL VIEW
US healthcare: how losing your job can kill you in the world’s richest country Healthcare should be a right, not a privilege, says Jennifer Corbelli, telling the story of a US woman born with HIV who died an untimely death after she could no longer afford antiretroviral treatment Jennifer Corbelli assistant professor of medicine, general internal medicine, University of Pittsburgh, Pittsburgh, PA 15213, USA “It’ll be fair before you die.” Of the many lessons I’ve learned from my oldest mentor, this is one of my favorites. It has endless applications, whether you’re dealing with a 4 year old or a 40 year old. Your brother ate the last cookie? Fair before you die. You’re working two Christmases in a row? Fair before you die. This little adage never lets me down when confronted with someone’s off-base self pity. Or when, not uncommonly, I need to give myself a reminder to quit whining. I wish I could say the same when confronted with the harsh realities that so many patients face; once I walk into a patient’s room, it lets me down all the time.
In Melody’s case, it wasn’t fair even before she was born. She and her twin sister were born with HIV. Her mom and dad had HIV. Her older brother had escaped this family fate and was the only one still alive to see Melody’s high school graduation. But Melody had tenacity. Although no one would have blamed her if she’d given up on life, she did the opposite. She went to nursing school and built a career. She had a huge group of friends, prom dresses and bridesmaid dresses, and every reason to look forward to her wedding dress.
Wasted, delirious, broken
I knew none of this when I first met a wasted, delirious, and broken 28 year old woman. Melody was admitted with weakness and mental status changes and was found to have a CD4 count of 2 cells/mm3, as well as abnormal magnetic resonance imaging (MRI) that generated a huge list of diagnostic possibilities, none of them good. We learned later—after seeing pictures of her, beautiful and beaming in a bridesmaid dress—what her breaking point had been. The point at which her future, everything she had worked and hoped for, had disappeared. Not drugs; not alcohol; not the nonadherence that happens every day. Melody’s life broke when she lost her job. And so she lost her literal lifeline—her antiretroviral drugs. With no insurance and no job, she couldn’t afford them. I don’t know whether it was her T cells or her dreams for her future
that vanished more quickly, but pretty soon both were gone. Her spirit hadn’t left her, but it would eventually follow.
Asleep or terrified and hurting So we did what we could. Antiretrovirals, antibiotics, antifungals; and opiates (always too little or too much—Melody was either asleep or terrified and hurting). Her brother and eating were the two things that still made her happy. Every morning anyone who passed Melody’s room saw a strong, healthy, tireless man painstakingly and lovingly feeding his exhausted, emaciated sister.
Soon she began to cough with each attempt at eating. She became too weak to swallow safely, so that joy disappeared too. She fought us over the nasogastric tube for a day or two, her spirit still raging, but then she gave in because she was hungry. Her brother held her hand as we placed the tube: he knew that Melody would be a champ, and she was. She started to require suctioning every two hours. Before long she cried and bled every time she was suctioned, but she took it because she was still tenacious and because she wanted to keep fighting to breathe.
“Let me die” Melody’s breathing grew faster as her body grew weaker. She agreed to mechanical ventilation but made her brother promise that, if she needed it for more than a few days, he would take her off the ventilator and let her die as comfortably as possible. A week later he asked her if she was ready, and she nodded. She went as comfortably as possible.
Melody is at peace now, and we’re left with the aftermath. Some of it is good. Melody’s strength, and her brother’s selflessness, will stay with all of us who were privileged enough to bear witness. Melody and her brother will help all of us to do better, in our work and in our lives.
[email protected] For personal use only: See rights and reprints http://www.bmj.com/permissions
Subscribe: http://www.bmj.com/subscribe
BMJ 2015;350:h1517 doi: 10.1136/bmj.h1517 (Published 20 March 2015)
Page 2 of 2
VIEWS & REVIEWS
But much in the wake of Melody’s death is infuriating. She was extraordinary in the tragic circumstances of her birth and the full life she led despite them, but her story is not as extraordinary as it should have been.
Obstacles in our fragmented healthcare system In the United States we continue to live in a society where Melody died an untimely death in large part because she became uninsured. Did she do everything she could to get her drugs? Maybe not: no one can know exactly what obstacles she faced in our fragmented healthcare system, how she navigated them, or her state of mind as she did so. Maybe after losing nearly everyone in her family and then losing the pride and livelihood secured by her job, some of the fight that she’d managed to
For personal use only: See rights and reprints http://www.bmj.com/permissions
preserve for so many years left her. And maybe a part of her thought that she shouldn’t have had to fight for treatment of the disease that had been her terrible birthright. Of course, “fair before you die” will always be a fairy tale. Healthcare as a right, rather than a privilege, doesn’t have to be. Competing interests: I have read and understood the BMJ policy on declaration of interests and have no relevant interests to declare. Family consent obtained. Provenance and peer review: Not commissioned; not externally peer reviewed. Cite this as: BMJ 2015;350:h1517 © BMJ Publishing Group Ltd 2015
Subscribe: http://www.bmj.com/subscribe
