When Science Fails: The Promise and Limits of Precision Medicine

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For centuries, humans have used science to explain their world. From the principles that suspend the planets in orbit to the relational pull of predator and prey, we turn to science to both examine and rationalize the experience of life. But does our reliance on science have a limit, particularly in medicine, where the “why” of disease can often escape scientific explanation?

For example, historically, medicine has poorly understood why one person gets sick and another doesn’t, particularly for complicated illnesses like cancer, diabetes, or heart disease, where multiple factors contribute to risk. Similarly, it’s been difficult to pinpoint why one medication works well for one person but not another.

And in the case of social determinants of health, medicine has yet to chart the physiology of disadvantage. That means, while we know poor people tend to be sicker, we don’t fully understand how poverty and discrimination manifest physiologically to produce disease; although there are exciting theories about stress hormones and organ function.

And so the why has evaded us, until now.

In January 2015, President Obama invested $215 million in a national Precision Medicine Initiative to use what science knows about the human genome to personalize the way doctors diagnose and treat disease.

The idea is that by using a wide range of biomedical information — including molecular, genomic, cellular, clinical, behavioral, physiological, and environmental parameters, physicians and scientists will have new tools to understand disease and determine the treatments that work best for each individual’s illness and DNA.

With such a sizable investment from the Obama administration and the partnership of trusted institutions in the scientific community including the National Institutes of Health (NIH), National Cancer Institute, and the Food and Drug Administration, this Precision Medicine Initiative promises to improve the diagnostic strength and treatment success of modern medicine. The significance of that promise cannot be underestimated.

But as we turn to science to answer the elusive why, we have to be mindful of where science has failed in the past. This is to set reasonable expectations but also to avoid repeating past mistakes. So as we move forward, here are 2 things to keep in mind.

First, as we narrow our focus from the population to the individual, it may be easy to overlook the way certain diseases are disproportionately prevalent in certain communities. If we then, limit our evaluation to the individual, their DNA, and their illness, we may miss the aggregate data that compels us to also investigate disease at the community level, where local resources and public policy may profoundly shape disease patterns and prevalence. Which is to say, while some disease is best explained from the lens of a microscope, other disease is best appreciated with a panoramic view of the environmental conditions in which that disease persists.

Second, to capture enough data to understand the human genome, the NIH and its collaborators are aiming to enroll 1 million American volunteers in the Precision Medicine research cohort. But a study published in 2014 found that non-whites account for less than 5% of clinical trial participants. More specifically, of the 10,000 clinical trials reviewed in that data, only 150, or less than 2%, focused on a racial or ethnic minority population.

So, if the Precision Medicine cohort is anything like the clinical trial cohorts from the past, women, minorities, and the elderly may be underrepresented; not to mention undocumented “non-Americans” who are generally excluded from scientific research. That means, while some patients will receive care uniquely tailored to them, women, minorities, the elderly, and the undocumented, may get care that was studied, tested, and developed, mostly for young white men. So as we endeavor to improve our understanding of human biology and disease, we have to make demonstrated efforts to enroll those science has historically forgotten.

Probing the human genome for the answers to medicine’s greatest questions will almost certainly lead to innovations and improvements in the health of our population. But as with most innovations, without careful and thoughtful execution, the impact may be limited. In Precision Medicine, we risk continued exclusion of certain populations from the benefits of science. This is when science fails, when it is unable to capture the breadth and meaning of the human experience. So if Precision Medicine does not couple its inquiry into DNA and disease with an equally rigorous examination of the biologic imprint of social stress, poverty, and discrimination, we may be no why-ser, than when we started.

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On Ferguson: A Call to Medicine

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There is little to say once you’ve said this before. Although the sadness brings fresh tears, they are also old tears. The grief becomes familiar and so too the inevitable resumption of everyday life. The pain bores to the soul but settles in the subconscious, where it rests, privately born and quietly hidden, lest frustration and bitterness mire the work we do – trying to forget, but ever-reminded. So although there is nothing new to say, perhaps there is something new to do.

Here, I am looking squarely at you, my fellow physicians. We, who deal in health and disease must think critically and act effectively to address the issues raised by the death of Michael Brown and those who came before him. We are the trusted public servants charged with protecting the populations in our care, to promote health and prevent and treat disease. But are not health and disease simply the crude boundaries of life and death? Then, how will we move to protect the lives of black and brown youth that are threatened by violence? How will we confront the reality that the #1 cause of death for black males aged 10-24 is homicide? What are we doing about the death rate for young black males that is the highest among all adolescents in America? Black male teenagers are 37% more likely to die than any of their peers. And according to the CDC, because these deaths are secondary to external injury, they are by definition, preventable.

So I will ask again, what are we doing about it?

Because, despite the vaccines given to ward off the threat of disease, and the medications prescribed to prevent seizures, kill cancer, and treat infections, black males may not make it out of adolescence alive if we don’t address the violence.

In preventative medicine, we talk about risk factors to identify patients who may suffer from an illness in the future, and prevent it, before suffering and/or death could ever occur. In oncology, we talk about getting to the diagnosis and treatment early, so that in cases where it makes a difference, everything that can be done, will be done. And yet, as black youth die in the streets because of where they live, and how they dress, and the volume at which they listen to their music, we are silent. We, as a collective field, say nothing and we do nothing.

Black lives matter because all lives matter and no one gets that more than we do. So as young black bodies line our streets without reason or recourse, we must start asking what that means for all of us. We must start changing the way we teach and practice medicine. Because if we fail to protect these youth, because we don’t understand their music, or we don’t like the way they dress, or we don’t feel comfortable with the way they speak – whatever the because – then we fail ALL of our youth. We fail to do service to the highest honor of our profession, to protect the lives we care for.

Now, this issue is complicated and deeply rooted in the legacy of discrimination that defines American history and continues to inform America’s present. And you may even avoid talking about it in your personal life, let alone your clinical practice. But your, or my, discomfort does not make it any less our responsibility.

So let’s start dealing with it. I’m talking about poverty. I’m talking about racism. I’m talking about structural inequality. I’m talking about the gender wage gap, the academic achievement gap, and the housing equity gap so wide whole generations fell in and got lost. It is time to engage these topics as legitimate and enduring parts of medical education, public health messaging, and clinical prevention strategy.

No excuses.

If you don’t have the faculty to teach this material, call upon our colleagues in the social sciences to share their expertise. If you don’t know how to address community violence, reach out to non-profits who have made this struggle their life’s work. And if you shy away from the institutional failings that underlie the policies that contribute to the disparities, then call on your local, state, and federal policy makers to change the law.

There is literally no time to waste. Every faceless, nameless brown child who drops dead in the streets could have and should have been prevented. Let this issue not settle in the subconscious recess of our field while children suffer. Because in the end, it is not about Ferguson, it is not about Michael Brown, it is not about the countless others who met a similar fate, it is about what we are doing to ensure that all lives matter, regardless of the color of that life’s skin.

Fighting for Failing Care: How Hospital Closures May Impact the Safety Net

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In the post-Affordable Care Act healthcare landscape, sweeping hospital closures have created new barriers to access in a system already criticized for its fragmentation and saturation. Looking back over the past 20 years, urban hospitals, and urban trauma centers in particular, bore the brunt of this impact, closing at the highest rates in the country. Now, evidence suggests the impact of urban hospital closures may disproportionately affect those living in poverty, racial and ethnic minorities, and the uninsured.

This concerning trend begs an important question:

If urban hospitals are a trusted point of access for low-income communities of color, does their closure undermine the national safety net OR does it create opportunities to deploy lower-cost, higher-quality delivery models for vulnerable populations?

To answer this question, let’s look at the contentious 2007 closure of Martin Luther King Jr. Harbor Hospital in Los Angeles.

As a bit of background, MLK-Harbor opened in the wake of the 1965 Watts riots and general unrest regarding the lack of sufficient public investment in communities of color in South Central (now termed South LA). The hospital was to provide healthcare in one of the poorest and most violent neighborhoods in LA. At the time of its closure, it remained the only public hospital to serve a large part of South LA, treating more trauma patients than almost all other hospitals in the region. Its closure was prompted by a series of egregious medical errors that eventually threatened the hospital’s accreditation.

Mounting quality concerns aside, what was most notable about its closure, was the staunch community protest. In the face of unquestionably dangerous medical practices, the community rallied to protect their safety net; even garnering the support of Congresswoman Maxine Waters, who rose to the cause’s defense in 2004. Despite their efforts, the trauma center was shut down in 2004 and the general acute care hospital closed thereafter in 2007.

So why would a community fight for the failing care of their discredited hospital? Is the safety net worth protecting when it is offering poor care or is the community’s advocacy tacit admission that poor care is better than no care at all? And ultimately, does “no care” threaten the safety net or does it provide an opportunity for something better?

Let’s dissect these questions piece by piece.

First, it is a basic human instinct to protect what you perceive as yours. Even if what you have is broken. Now superimpose on that instinct, a history of having no say in what is taken from you; a history of abandonment by public institutions charged with investing in your community infrastructure; and a history of displacement driven largely by resource scarcity and discrimination. When viewed in this structural context, the motivations to fight to protect resources become obvious.

Second, let’s explore the idea of fighting for “failing” or “poor” care. Here, the assumption is that low-income communities of color either don’t understand or don’t want, quality. Why else would they protest the closure of a bad hospital, right? In this case, I think we’ve got the assumption wrong. Americans love a deal. We want more for less. Whether it’s super-sizing our french fries or buying into the housing market at the right time, we want quality and we want it at a bargain price. In this way, quality is an American value that translates across the economic spectrum. But sometimes, “the deal” trumps quality. So the real question is, what is the “deal”?

In the case of MLK-Harbor, if there is not another medical facility near your home and public transportation is unreliable, or if you are uninsured and you cannot afford a second opinion, or if the medical specialty you need is only available at your local provider; then the deal is access, the deal is cost-savings, the deal is specialization. This is why low-income populations are vulnerable. Because their lack of resources offers them a bad deal, around which there is little leverage.

So it is not that poor care is better than no care. It is that no care should no longer be an option, but for many, that is the deal they are left with. So as engineers of the system, we have to create something better.

And herein lies the answer to our initial question. It does both.

Because urban hospitals are a trusted point of access for low-income communities of color, their closure undermines the national safety net AND creates opportunities to deploy lower-cost, higher-quality delivery models for vulnerable populations.

In attempting to forge a better healthcare system in the midst of our broken one, every failure is an opportunity for improvement.* As the Affordable Care Act re-organizes the medical landscape into regionalized, micro-systems that are accountable for local populations, it provides the opportunity to consider our past failures and the global impact of shifting costs and shifting care on the vulnerable.

The tension between eliminating inefficiency, maintaining quality, and controlling cost while elevating the voice of the community and prioritizing the needs of the under-served, remains. These are the challenges that loom at the forefront of a healthcare system that seeks to cut costs and maximize quality for all. But this is a cause worth fighting for and I’m all in. Are you with me?

* To see how MLK-Harbor (now MLK Community) is improving their system to re-open in 2015, click the link.