MDR-TB: The Galapagos Effect in Health Care

I hope I got your attention with my last post about the Pacific Health Summit and the acute global threat of Multi-Drug Resistant Tuberculosis (MDR-TB). All of the issues around innovation in public health that I are covered in this post need to be placed in the perspective of this challenge and the human costs associated with it. Public health challenges like MDR-TB also provide an opportunity to reflect on our current understanding of innovation and whether it has lived up to its promise outside the gleaming corridors of Google. There has been a healthy debate on this topic lately. A recent piece in BusinessWeek looks back at the most promising areas of scientific R&D of the last 10 years (like nanotechnology) and wonders why so few have lived up to their hype. There is no question that we have made enormous strides in the lab. Why not in the field?

galapagos mapI often struggle to effectively communicate the prevailing mindset within the health-care community to outsiders, particularly those closest to design and technology (like the readers of this blog). I finally came across the right metaphor in a recent article in Natural History Magazine describing the island phenomenon, otherwise known as the "Galapagos Effect". We are all aware that remote islands often develop unique life forms due to their isolation, like the massive land tortoises and blue-footed boobies that inspired Darwin's theory of evolution. But the same phenomenon also applies to huge land masses, entire continents like Australia and even South America, which spent close to 50 million years in splendid isolation before the formation of the Panama Isthmus 3.5 million years ago. This article showcased the strange mammals from this remote period in South American history. Large lumbering creatures like the Megatherium which look like weird distortions of more familiar species (an elephant-sized ground sloth in this case).

MegatheriumThe health-care industry in this country has suffered hugely from the Galapagos Effect. It has evolved its own ecosystem and business practices that reflect this isolation. This can be seen in every link in the value chain, as consumption and payment are completely disassociated in this country. Health care has evolved in isolation from many of the forces that have re-shaped other industries in recent years. This isolation is readily apparent to each of us whenever we step into a doctor's office or hospital waiting room. And it was very apparent at the Pacific Health Summit despite the presence of some of the most brilliant minds in public health (like Tony Fauci, Paul Farmer, and Laurie Garrett). Despite their best efforts, industry leaders continue to betray an outdated, manufacturing mindset, referring to everything that has impact in the field--that touches communities and provides real human value--as "delivery." This one-way model of engagement is truly shocking in an age dominated by communications technologies and connectivity. Health is not 'delivered' to people. It relies on active engagement and participation. It is a dialogue.

This is just one of many assumptions that are limiting our ability to address the severe challenges facing our health-care system and respond to a crisis like MDR-TB. What are some of the other prevailing mindsets?

#1: Innovation Happens in the Lab

LabHealth care has a fixed understanding of innovation: it happens in the in lab. Innovation and R&D are one and the same and the cornerstone of their industry. Drug companies bet billions in the lab in the hope of finding a new technology that works. And then conduct highly controlled studies to measure the outcomes. That is as close to the "field" as you get. And then they do everything they can to control the "delivery" system so that they profit as much as possible from the innovation. In other words: the lab and the field are in direct conflict. Conditions in the field present risks, not opportunities.

MDR-TB vividly demonstrates that solutions that work in the lab are not necessarily well-suited to the behavior and cultural conditions in the field. So why not build those conditions into the model from the beginning? As designers, we find those conditions to be inspiring. They help to shift your frame of reference and inspire new thinking. This is a hard lesson for the Health-care community to learn. And it was very evident at the Summit which panelists were directly engaged in the field, and which were not. In fact, the only panel that was stocked with real world experience (moderated by Paul Farmer, no surprise) was left for lunch on the last day, after the formal sessions had ended and when most people were leaving for the airport.

You see this mindset reflected everywhere. Even the mighty Gates Foundation is split down the middle between science and delivery. After interacting with folks from both sides of the organization out in Seattle you can probably guess which group I found to be more interested in open innovation. But...I bet you can guess which side of the house is more interesting to Bill.

#2: Innovation Only Flows in One Direction

paul farmerThe prevailing direction of health-care innovation is not just from lab to field but also from first to third world. Once new treatments are done paying for themselves, here in the U.S., they are adapted to more resource-constrained environments (to which they are often ill-suited). Laurie Garrett brought this home on the specific topic of TB. The greatest need right now is in poor markets like rural South Africa. But, if you read my earlier post you are now aware that TB has infected an estimated 2 billion people worldwide (that's right: 1/3 of humanity!). That is a huge market. As the risk of MDR grows we better learn from the experiences people are having on the front lines, in emerging markets, so that we can adapt it to the US. Not the other way around.

DC HomelessFor example, Paul Farmer (who was in attendance) practically eliminated the incidence of TB in a remote part of Haiti, one of the poorest nations on earth and is now working with the government of Rwanda on the problem. He succeeded not because of new drugs and therapies but by increasing support and access in the community. As Tony Fauci observed in a follow-up meeting in DC this week, we have under-served communities in the U.S. that are equally challenging and hard to reach. And these communities play a major role in the continued spread of many infectious diseases like HIV in the U.S. No matter how successful we are in the lab, we will never eradicate these diseases unless we can figure out how to reach these populations. And, conversely, if we can influence these populations, we will learn a hell of a lot about behavior and motivation that may trickle up and make other programs, such as combating diabetes, much more effective.

#3: The Field is Messy

But the human part is messy. Drug companies can't develop magic bullets in the lab to change human behavior and cultural conditions. Adherence is the most vexing problem facing drug companies today. They can develop the right drugs and get doctors to prescribe them but people still don't take them the way they 'should'. This is exactly why we have MDR-TB. It is not due to limited supplies of first line treatments. It is due to limited support resources and a very difficult protocol to manage. One that requires regular support and feedback in resource-constrained environments. Infected people leave hospitals in KZN with no idea what 'TB' is. And they stop treatment the minute they start to feel better even though they need to stay on their medications for three months to clear their system.

X out TBAdherence is a huge opportunity, but it is an area in which the drug companies continue to struggle. That is because it requires you to think more broadly about human needs and behavior. To step outside the narrow lens of a particular condition. That is why they are scooped by college kids, like the guys at MIT that came up with XoutTB, a paper diagnostic that reveals a code and unlocks free mobile minutes every time you take your meds.

#4 Innovation must be Market-Driven

In many areas including public health, the prevailing assumption is that innovation requires some kind of public / private partnership. The assumption is that impact cannot be scaled and maintained without a market mechanism. This is based on the failure of many broad public health initiatives and the belief that the secret to scalability lies in market know-how. This is absolutely true when it comes to scaling up / industrializing the production of medications. But does it hold equally true to scaling up access, outreach and support? How innovative are the large multi-nationals in this area particularly in relation to the routine and chronic diseases of the poor?

Drug companies tend to view price breaks as major innovations. While these pricing breaks are crucial they don't address one of the main obstacles to access: lack of information and support, particularly for treatments that are complex to manage (with multiple therapies) and have adverse side effects. One of the most disappointing aspects of this conference was the lack of strong representation from other industries that are better at information access, particularly mobile operators. Mobile networks are a unique point of leverage in impoverished communities. And the mobile operators are making huge profits selling minutes to the poor. In fact this is projected to be their largest growth opportunity as developed markets are becoming more and more saturated--hence the merger between MTN in Africa and Bharti Airtel in India.

community phoneBut mobile operators are equally close-minded (with the notable exception of MTN, one of our partners on Project Masiluleke which donated 10% of their message inventory). As Erik Hersman of Afrigadget recently noted: "We're all born in a small 'company town', where the mobile operators are the landlord and the bank, the grocery store and the mafia." Add to that the health clinic as mobile networks are rapidly becoming a common access point health information, as demonstrated by the recent launch of Google SMS Tips in Uganda. While mobile operators have a vested interested in the health and well being of their customers, I am worried that they see public health as a high risk area. Which is too bad as there are few other industries with true market access and reach at the BOP. Pretty much every village in Africa has a community phone operator. Often more than one. What if you could get a phone upgrade with proof that you have taken an HIV test?

Conclusion:

It is not my intention to oversimplify the challenges facing the public health community. This community is filled with many talented people who have devoted their lives to the common good, often at some personal risk. But the challenges at hand, like MDR-TB, require a fundamental change in mindset. One that I don't see happening yet based on my experience at the Pacific Health summit. But I do believe that there is reason to hope. As we are becoming more and more interconnected there are new species starting to wash up on the shore. That is the starting point for my next piece.

Read part 1: MDR-TB: A Health care Crisis of Our Own Design

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4 Comments

  • Robert Fabricant

    Cindy, thanks for pointing out the coincidence. Great to read Claudio's post. Not surprised that we landed on the same metaphor.

  • Cindy Throop

    Interesting article. Yes, the Galapagos metaphor very accurately explains the disconnect between development (or the lack thereof) in health care compared to other sectors.

    The Galapagos metaphor has been used previously (in health care) by Claudio Luis Vera. His original post went up on April 27, 2009 and was reposted on the Open Health Project website on June 27, 2009. http://www.open-health.us/arti...

    I also look forward to seeing what happens in health care as it evolves into a (hopefully) functional system.

  • JA Ginsburg

    Great post. The disconnects between lab bench and field are beyond stunning. One more complicating factor to add to your list: the unknowns of health care costs. The next time your doctor orders a test, or some basic non-emergency maintenance for you, ask how much it costs. Chances are s/he won't have a clue. Your doctor will mumble something how it depends on a patient's insurance - prices vary - which is true. Unlike anything else, the cost of health care is oddly murky and unpredictably variable, complicated rather than clarified by the insurance industry. What's a profitable market and what's not a profitable market? It depends...which speaks to Fauci's point. The uninsured (40+ million) and the underinsured (another 80 million?) in the U.S. aren't so profitable. Now, take this global. It seems ironic that even when we know the costs of disease (the WHO, for example, is very good about calculating impacts on GDP), it is still hard to square with profits for prevention. What's fair? Who knows? As you so deftly point out, public health and the greater good don't always factor into the equation.