How We Value a Life
I've been all over the world in the past few weeks. Mali, Paris, Toronto. You would think that the travel itself would be disorienting. But the distance from here to Mali hits me the strongest when I go take care of patients in my clinic in Providence. My ability to access tools and medications that make my HIV patients better has a profound effect on my actions. I know that I can prolong life, and even save lives, with a few simple interventions.
That knowledge and certitude contrasts sharply with the attitudes of doctors caring for patients who are dying from HIV and AIDS elsewhere in the world. Why does their attitude matter so much? The Global Fund and the Clinton and Gates foundations might make drugs available for HIV/AIDS, but it's going to take a lot more to address the hopelessness that affects doctors and caregivers who are just learning about HIV and how to treat. They simply don't believe that AIDS patients can live long lives. They don't test, and treat, because they cannot see a future.
Indeed, one of the most significant challenges in the global response to AIDS is the need for the proper training of more than 100,000 additional health providers and community treatment supporters in order to accomplish the WHO AIDS treatment target -- to get all of the patients who need HIV medications into care by 2010. Because trained providers are lacking, and despite the fact that we learned about the benefits of HAART more than 10 years ago, millions of people still do not receive this beneficial therapy. Currently, 6.8 million people in the developing world are in need of HAART, but only 24% of these people were on HAART as of June 2006.
Access to care is simply not enough. If we are going to make a difference, one of the most important things we have to do is change attitudes. I wrote the following observation after working at my clinic in Providence this month, shortly after returning from Africa. Please read on.
"I have a dark space in memory..."
I have a dark space and a worn grey desk in my visual memory. That desk and its wooden chair from a clinic in West Africa floated back into view today -- perhaps because of the striking contrast with the clinic I sit in now, on the East Side of Providence. I can recall the smell of sweat and salt and fine sand -- I remember hearing my words translated into Bambara for a woman who does not exist any more. On that day in my memory, that woman, dressed in black, held a boy child in her lap. He was a bright spot of joy in that dark space, his own vigorous health a stark contrast with his mother's. Yes, we had done our best to stop the transmission of her HIV to her child, but she was as sick as the day was long, and death looked back at me from her shoulder, laughing.
The memory of that clinic in West Africa and the despair that I felt when I heard she died is so far removed from the white laminate desk and black flat screen computer and wall-to-wall carpet that was in the front view of my vision. In fact, when the memory of West Africa came drifting back today, I simply had to stop what I was doing, and speak about it, so as to unhook the moment from my memory. The disparity between the bright, fluorescent-lit present and the dark, dusty past is a difference that I can describe, but I cannot explain.
What is it about here -- this place where we can open the door to a clean bright space that holds health care for all? Here, the great machinery that creates jobs and wealth and opportunity spins out health care for those that need it. Access is not denied -- and although uneven, health care is available. Here, every physician knows that his and her responsibility is to smooth the path to life using any of the many high-tech tools that are available. Hope for health is abundant, and the expectation of long life and wellbeing is, somehow, commonplace.
The ordinariness of health care that we experience in this country is so different from the healthcare that is available at that clinic in West Africa, where the dying mother of that exuberant child asked me for HIV medications to save her own health and where, despite my intervention, the medications were simply not given. Death won that particular contest. The mother of that child does not exist any more. That is why the moment keeps coming back to me -- it is a moment when I failed to stop HIV, even though I knew, and was certain of knowing, how to do so.
I have much to say about why that happened, but more importantly, it is the contrast between hope and absence of hope that I would like to single out for attention here. Why did the physician who was charged with the care of that mother not act swiftly enough? Why, when we know that the fight against HIV can be won, person-by-person, with a handful of medications, was help not offered? There was a time when we did not have the hope for long life with HIV that we do have now. My memory is full of the shadows of patients that we were not able to save. But my recent experience of AIDS is one of health maintenance, and talk of children, or college, or businesses that are beginning -- hope for the future.
That is here. That is now. But that is not now in West Africa. What is it that was missing in that dark dusty clinic? The bright light of hope. Lack of expectation. That is the only way I can explain my colleague's failure to act. I believe that the physician in that clinic did not know that he could save a life then and there. That he had no experience of hope for life with HIV. That, in some way, the drudgery of daily deaths, of lives lost, of babies miscarried, of children lain low with diarrhea and malaria, of women dying in childbirth, of sepsis, of broken limbs and lives, that he could not see the simple hope held out in a handful of medications. That doing nothing was, somehow, more routine.
That different level of acceptance of death is ordinary in Africa. Each life appears -- at least from where I sit -- to have less value. For want of hope, there is a lowering of expectations. That is why -- today, standing in a bright lit space with a flat screen computer, I could not shake the vision of an exuberant child and a mother, her hand held out for medicine that was not given.
"What can we do?"
What can we do to change this? What can we do? We can teach about hope. We can bring hope with us and travel there. We can send our brightest young trainees to Africa. And we can bring African physicians here, into our bright-lit clinics, and teach health maintenance, and talk of children, or college, or businesses that are beginning. These doctors that are new to HIV and AIDS treatment need to envision a different outcome. They need to see lives that are lived with HIV, not death due to AIDS. We are able to provide care that sustains life -- and doing so, we can inspire our colleagues to fill outstretched hands with medications, and the expectation of wellbeing.
Sincerely,
Annie De Groot, MD
About the Author
Dr. Annie De Groot is the founder and scientific advisor to GAIA Vaccine Foundation, an organization whose mission is to accelerate the development of a globally relevant and globally accessible HIV vaccine. GAIA Vaccine Foundation is preparing for HIV vaccine trials in Mali, West Africa. While waiting for the vaccine, GAIA is helping support HIV education, prevention, and access to care. GAIA started a mother-to-child HIV transmission prevention program (Chez Rosalie) in April 2005; an HIV clinic (Hope Center Clinic) is beginning to be established.
Medications for the treatment of HIV are free and available in West Africa but the education of physicians about HIV care lags behind. Many physicians are unfamiliar with the new medications and are not informed about the hope that these medications bring for a longer, healthier life. GAIA Vaccine Foundation runs an annual conference on HIV care in West Africa that provides instruction for physicians on HIV care and prevention.
About Angels in Medicine
Angels in Medicine is a volunteer site dedicated to the humanitarians, heroes, angels, and bodhisattvas of medicine. The site features physicians, nurses, physician assistants and other healthcare workers and volunteers who reach people without the resources or opportunities for quality care, such as teens, the poor, the incarcerated, the elderly, or those living in poor or war-torn regions. Read their stories at www.medangel.org.