Profile

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                    [post_content] => Celeste Castillo Lee passed away at the age of 51 on February 9, 2017 after nearly 35 years of kidney failure brought on by the autoimmune disease vasculitis and having undergone peritoneal dialysis and hemodialysis and a kidney transplant (for 10 years). Celeste made an indelible mark on everyone who came into contact with her. She was a kind, cheerful, energetic, and passionate force in the lives of her family and friends. She made each of us feel special; we are better persons for having known her.

Celeste’s influence, however, extends well beyond her immediate circle. She helped countless others by devoting her professional and personal lives to developing and promoting strategies so that health care providers could better partner with patients and their families.

A tireless proponent of patient and family-oriented health care, Celeste simultaneously assumed many roles: patient advisor, peer mentor, board member and advocate in numerous non-profit organizations, professional societies, and government agencies.

Among her roles Celeste served as a faculty member at the Institute for Patient and Family-Centered Care, Program Manager for Patient Family Centered Care at the University of Michigan Health Care System, Board Member and Chair of the Patient and Family Partnership Council for the Kidney Health Initiative, and member of the Phase I National Patient Advisory Council for PCORnet.

In 2017, she was awarded the American Association of Kidney Patients Medal of Excellence for her contributions. Her work has been commemorated in several ways, including the Celeste Castillo Lee Endowed Lectureship by the American Society of Nephrology and the National Kidney Foundation’s Celeste Castillo Lee Patient Engagement Award — the organization’s highest honor for distinguished kidney patients who, through their activism and involvement, exemplify Celeste’s legacy of putting patients at the center of all aspects of health care.

Through her participation and engagement Celeste played a critical role in raising awareness and improving patients’ care experiences, a role she assumed up until the very end when, in opting for hospice, she continued to empower and educate others by explaining how she came to this decision. There is no doubt that Celeste’s impact on the quality of patient and family engagement in health care will endure.

Feature image: video still from Celeste Castillo Lee – Kidney Health Initiative Tribute
                    [post_title] => Celeste Castillo Lee: A Pioneer in Patient Engaged Care
                    [post_excerpt] => Celeste Lee spent a lifetime raising awareness and improving the care experiences of patients, especially those living with kidney disease.
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                    [post_content] => PHP Fellow Qing Wai Wong spoke with Boston Police Commissioner William Evans and Conan Harris, director of My Brother’s Keeper, about Boston’s efforts to support youth in the city and the changing role of the police force.
On engaging with communities
[caption id="attachment_1957" align="alignleft" width="375"] Conan Harris, director of My Brother’s Keeper Boston[/caption]

Harris: Well it comes from our mayor, right? One of the things that’s so important that our mayor comes in that space of wanting to make sure that we are all connecting to do this work. It literally is that if you have a mayor that doesn’t represent that, that won’t happen. But it was so crucial and so important to make sure we have a commissioner that represents that. So, the mayor represents that, the commissioner represents that, and that has a trickle-down effect. Now we’re all in meetings together figuring out how we should be keeping our community safe and not leaving it just to them.

Evans: I agree. That’s the key. The mayor’s mission. You know, the cops get it. Like I said the role has changed. And I go into the academy of all these new recruits and I have for the past 4 years, and I sort of set the tone, both with them and the command staff. So, I say if you’re going to come on the job, this isn’t about what you're seeing on TV, chasing the bad guys, and locking people up. We’re here more as a social service agency now, trying to make a difference in these kids’ lives.

And I think from the top on down, even some old-timers are seeing the benefits of it. The ice cream truck out there, the kids in the school, us out there playing basketball with the kids, us engaging in youth-police dialogue. They’re seeing the results of it and the results only reinforce positive behavior. Like I said, if you told me 32 years ago that cops wouldn’t mind riding down the street in full uniform with an ice cream truck, I’d say you’re crazy. But the whole mindset has changed of what law enforcement role is now in the community.

On mentorship

Harris: There are many people who are doing mentorship already, you have coaches, you have people in churches and all that…but the effect, the way that we’re trying to support the work that is already done is training adults to be their most effective self and making sure they have a foundation on ways to mentor and be most effective. But we didn’t invent it, it’s been going on since the beginning of time. What [My Brother’s Keeper is] trying to do is enhance it. By making sure we’re training folks and putting them in the larger system so they could then connect to our most vulnerable youth.

Evans: It’s just the matter of continually working with these kids and truly making a difference so they don’t see us as the bad guy. And I always look back, when I was at the Kroc Center, and a young kid…a young child, 11, cute as a button with ponytails said to Governor Baker, “I wish you’d stop these cops from being racist.” And I said, “That’s a mindset that we have to change.” And that’s why when I say we have to get to these kids younger and younger, build their trust, and build their respect, that’s the only way we’re going to do it.

Unfortunately, when a lot of kids are 15 or 16, they’re already been brainwashed with the idea that, “Don’t talk to the police. They’re the bad guys. Don’t talk to them.” But the more we can be at the ice cream trucks, the more we can be in the schools... the more, you know, I get out, I read to the kids in all the schools and my school officers, the better relationships we can build. It’s all about mentoring these kids younger and younger. We have the Boys in Blue, where we’re working with Big Brothers, and you know I said my brothers brought me up. I see the benefit of having someone more or less look out for you and lead you on the right path. That’s what we have to do for these kids. And a lot of them have absolutely nothing.
On Peace Walks
[caption id="attachment_1953" align="alignleft" width="480"] Boston Police Commissioner William Evans[/caption]

Evans: The mayor comes with us. You meet more good people. You know it’s very refreshing because you know, a lot of people… I walk places where you anticipate a little bit of fight-back because of what’s going in the country – I’m taking selfies, Walsh is taking selfies. You know, people are saying you’re doing a good job. And I always go back to all my roll calls and say I know there are some critics out there, but 99% of the people out there, they appreciate everything we do. And I think that’s what we see in the Peace Walks.

Harris: It builds community. It’s not about it being this big violence prevention strategy and all that. It builds community. And when you build community, when things happen, you have partners. You see what I’m saying? And so, that’s the thing I love most about the walks and I’ve been on a bunch of them, is seeing community being built – young people running over to the commissioner to give him high-fives and hugs. Young people taking selfies and riding over with bikes saying, “Hey what are you guys doing?”

Evans: The only problem with it is when they run by the mayor to get a selfie with me. He’ll be getting rid of me. At one house, we opened the door and he walks by the man and says “oh it’s the commissioner” – he can’t be happy, he can’t be happy. He’ll be kicking me out of my job.
On the role of the police force in creating healthier communities
Evans: I think the role is prevention and intervention more than anything, rather than incarceration. I think, identifying these kids in our interactions at such a younger age and — now that we have social workers – working with the social workers. And if it’s mental health, working with all those organizations to get them the services they need so it doesn’t develop into a deeper problem where they have to incarcerate these kids. The key is prevention and intervention in these kids’ lives.

Harris: Their role, as being a part of our community, is keeping us safe. However, they are not defined by just that. Their role is also to be mentors, their role is also to be upstanding men and women in our communities that are leaders. And so, the greatest thing about our police department is they work really hard about trying make sure they are positive aspects of our community.

Feature image: courtesy of the Boston Police Department
                    [post_title] => Commissioner William Evans and Conan Harris
                    [post_excerpt] => PHP Fellow Qing Wai Wong spoke with Boston Police Commissioner William Evans and Conan Harris, director of My Brother’s Keeper, about Boston’s efforts to support youth in the city and the changing role of the police force.
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                    [post_content] => Alfredo Morabia recently spoke with Public Health Post at the Boston University School of Public Health, where Dr. Morabia was participating in the Dean's Symposium: "Reducing Health Inequities: Advancing Meaningful Change." Following is a summary of that conversation, and also material from Dr. Morabia's presentation, linked at the end of this profile.
On the difficulties of defining inequities
I want to stress how important history is when you define inequities. And when you define inequities, it is always in a historic context.

First of all, when do we start defining inequities? For most of human history, I mean, since there has been written documents, let’s say 6,000 years, there is no definition of inequity. Because we are lacking the fundamental concept that allows us to define inequities, and this is population. You know, for most of human history, the differences between people who are privileged or not, are explained by individual factors. It’s in their blood. You know, it’s in their heritage. It makes sense to think of the leaders in the antiquity were of divine origin. Because, this was the only type of explanation.
On the different definitions of inequities throughout history
So, we have to go now to the 19th century, to have the first, but still the most common definition of inequities. And it was based on the development of the bills of mortalities which became death certificates. And with these death certificates, people collected information about the people who had died, you know, their occupation, etc. So, it became possible to look at differences of health outcomes across categories of population who were more or less privileged.

It gave way to this categorical definition of inequities. And so, I think this definition is still the most common. It means that you have to identify those sectors of the population who are more at risk, you know, the poor, and intervene among the poor. And the rest of the society is not necessarily involved in the process.

And it works, it works very well because actually, the slums, the poverty, was eliminated by this type of intervention based on this type of data. You know, building sewages, improving houses, improving nutrition, all of this improved the life of people, even though it was based on the wrong causal explanation.
On being the editor-in-chief of AJPH
I think that AJPH has always had good research, excellent science. But this science was not made available to people outside of academia. So now I’m working on every paper so that the title, abstract, content, tables are readable. And if you look at the journal, I think that you’ll notice that.

I interact with lot of very interesting people. I have the chance of getting into people’s research, try to understand what they are doing, you know, interact with them to make a better product. I have a team of 26 editors who are fascinating people – all great personalities, defend their ground in their convictions and beliefs. So, it really is for me a great pleasure, an intellectual reward to be able to interact, collaborate, and get this thing together.
On the purpose and direction of AJPH
One [purpose] is to publish evidence and this it has always done. One thing I have added to it is that I think the journal can contribute to a culture of public health. I think there is a culture. I mean it’s not only the reality, the observations that we are publishing, in order to do that, we must have a vision of another society. We must have a vision of where we want to go to and this is culture. So, I’ve added to the journal, some things that have existed in the past but has been stopped for 20 years: a book review, a media review section.
On politics and public health
[AJPH] is non-partisan. I’m trying to publish visions from both sides or multiple sides and I’ve learned a lot from that. Because there are different opinions, they may converge on the rejection of inequities, the rejection of poverty, injustice, etc. but they are grounded in different ideology. We must respect that. So, I publish Republicans, I publish Democrats, I publish Senators.

But it is actually how, you know, when we want to translate our research into practice, etc. we are dealing with a specific political environment and I call it historical because I want to put every aspect of it together. But of course, those ideas need to be discussed and I’m open for people from, again, lot of different environments and I learn from that. We must remember that public health is a tool, is a discipline, it is not a political art in itself.

Feature image: courtesy of the Office of Communications for Media Relations, Columbia University Mailman School of Public Health

Dr. Morabia was interviewed at the the Dean's Symposium: Reducing Health Inequities: Advancing Meaningful Change , at the Boston University School of Public Health on February 1, 2017. 

 
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                    [post_excerpt] => Public Health Post spoke with Alfredo Morabia at the Boston University School of Public Health, where Dr. Morabia was participating in the Dean's Symposium: "Reducing Health Inequities: Advancing Meaningful Change." 
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                    [post_content] => PHP fellow Gilbert Benavidez and Dr. Michael Stein sat down to speak with Dr. Danielle Martin at Boston University School of Public Health, where she was giving a talk to dispel some of the myths about the Canadian healthcare system and provide some lessons that can be utilized in the U.S. healthcare debate that is currently underway.

PHP: What do you think about a financing system in which expenses related to the social determinants of health are covered? 

DM: The separation between healthcare expenditures and expenditures on social determinants of health has always been a false dichotomy. I believe in the principle of looking upstream to try to deal with poor health before it becomes an issue. One of the ideas that I talk about in my book is the concept of universal basic income guarantee as one example of a way to get at health issues from the side of the social determinants. In Ontario where I’m from we're actually launching a basic income pilot. The Ontario government has specifically articulated that a primary purpose of this pilot is to understand how to structure poverty reduction programs in ways that will improve health outcomes and reduce strain on publicly-funded health care systems.

PHP: How do you drum up the political motivation needed to achieve something like a basic income guarantee?  

The reality in all developed countries is we have and will continue to have poverty reduction programs and strategies. But are we going to structure those in ways that pile on rules and eligibility criteria such that being poor effectively becomes a full time job by the time you finish with the caseworkers and people who want to make sure that you're adhering to every single eligibility criteria? Or are we going to trust people to do what all the evidence suggests that they do? Which is when you put money in their hands they spend it on things that will improve their welfare and allow them to become contributing members to society.

PHP: A right to healthcare is fantastic, but there must be practical limits right?

Of course. The limits should fall along the lines of evidence. Where there is strong evidence that a test or an intervention, prescription, health care interaction is likely to significantly improve the health of the individual, I think it should be universally accessible based on need. But where there's no good evidence or perhaps even could cause harm, I think that's where we need to draw the line. It is worth saying that there is an asymmetric obligation on the part of the health care community to help structure our systems in ways that will protect patients. Because in fact many of the most harmful, unnecessary things that get done to people in healthcare systems are not at the request of patients, they are at the advice of health care providers.
I do not believe that having a single payer publicly financed system means that you just have to put up with waits.

 
 

PHP: At a surface level, what is the biggest shortcoming of the Canadian healthcare system?

The Achilles heel of the Canadian health care system is wait times for elective services. I say this knowing that there is a myth that gets propagated about the Canadian health care system in some American media where people are sort of clutching their chest and dying while waiting for care. That's not the case! Access to urgent and emergent care in the Canadian health care system is excellent. But when it comes to elective or non-urgent or planned care of a variety of sorts, Canadians do wait. And while those things don't cost people their lives they certainly contribute to a sense among the Canadian public that the system is not working.

But I don't buy this rhetoric that every system rations care where in the U.S. there’s ration based on wealth and in Canada it’s ration based on need. I do not believe that having a single payer publicly financed system means that you just have to put up with waits. And if you look at the way our delivery mechanisms are structured, there is a tremendous amount that we could be doing in the Canadian system to reduce our waits without having to invest a lot more money.

PHP: What are the policies you think follow from that?

One of the examples that I use very frequently is the example of centralized intake for specialty care and inter-professional teams for specialty services of a variety of different kinds. We have tremendously successful examples of projects across the country but our implementation is spotty. If you happen to live in Vancouver where the orthopedic surgeons partnered with the family doctors, you're not waiting for Dr. so and so, but are seen by the next available provider. Patients are initially seen by an inter-professional team with a physiotherapist, etc. so that the ones who are seeing surgeons are the people who are actually surgical candidates. They brought the wait times down from eighteen months to three months for surgery without spending more money and without investing any additional resources.

PHP: As it pertains to challenging perceptions — even when you have all the facts, you don’t always win the debate. What’s the strategy?

I think it's critically important to have people who are actively involved in delivering care getting engaged in the conversations about system design. As much as evidence is critically important, narrative is also important in this conversation and I do think that being able to speak from experience around some of these questions about wait times or electronic medical records makes a difference.
I think it's critically important to have people who are actively involved in delivering care getting engaged in the conversations about system design.

 
PHP: So currently prescription drugs are not covered under Medicare. You propose publicly financing medications (pharmacare) is both an ethical and economic argument?

Interestingly I think in the U.S., Canada sometimes gets held up as a model where people can purchase their prescription medicines less expensively as compared to the U.S., but in fact Canadians pay thirty percent over the O.E.C.D. average. If we were to have an evidence-based national formulary in Canada and publicly purchase essential medicines for everyone who needs them in the country, we would save our private sector billions of dollars. The Canadian model for insurance for prescription drugs almost exactly mirrors the American model for health insurance more broadly. And so we have all of the things that you would expect that we would have, which is very high costs, high rates of over utilization and inappropriate prescribing in the private plans, and a whole lot of people who aren’t taking their medicine because they can't afford it.

PHP: In your Stouffville Ted Talk you gave the quote: “My barn having burned down, I can now see the moon.” What does that mean in light of the ACA repeal and replace effort and conservatives calling it a “failure”?

So I approach this question with some trepidation because you never want to be the outsider coming in and telling people what to think or feel about their own situation. But it seems to me that it is entirely possible that things get really bad in the United States with respect to insurance. So my question would be “is this the barn burning down?” Is this the moment where, if things get as difficult as it appears they may well get, some more fundamental questions might be asked about whether the structure of the U.S. insurance is really set up to work for people? And if it's not, might this open up the opportunity for that bigger conversation? I understand fully that that is a conversation that's been tried a few times. But I would not underestimate the impact of having had insurance and losing it on people's desire to get engaged in these conversations.

The public engagement to me is the most important thing about this whole experience and process of writing a book and traveling across Canada. I've got an e-mail box full of messages from people I've never met saying, “how can I help?” People see that there are problems and they want to participate in the solutions. So what I would ask is: are you about to hit that moment here? Where people get disenchanted enough that they are willing to really participate in a way that they have not participated in the past. Might that be the moon?

Photo of Danielle Martin courtesy of Women’s College Hospital. 
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                    [post_content] => Since joining (RED) in 2011, Deb Dugan has been an instrumental force in Bono and Bobby Shriver’s mission to direct monies from the private sector toward the Global Fund’s fight against HIV/AIDS. As CEO of (RED), Dugan oversees “the big ideas” for products and experiences that, when purchased, raise both money and awareness to fight HIV/AIDS in sub-Saharan Africa, with the goal of providing life-saving anti-retroviral (ARV) treatment that prevents HIV+ moms passing the virus to their unborn babies.

Dugan explains that this brand of philanthropy is so impactful because the private sector — which includes (RED) partners like Apple, Starbucks, and Coca-Cola — wants to be “young and hip” and is forced to keep up with trends of youth. More and more, those trends include using “consumer power as activism.” (RED) harnesses the relationship between company and consumer to affect policy and save lives.

In her interview with PHP’s Madeline Bishop and Michael Stein, Dugan emphasized the power of common narratives to capture the attention of a wider audience and to inspire youth to become involved in this important fight. Here, we recount some of the narratives she shared with us about (RED)’s pioneering enterprise.
On finding a common North Star
DD: Our whole mission is to keep [HIV/AIDS] relevant. And how do you keep it relevant when you think of all the issues now that are going on, that are keeping people awake at night? We make it personal. We have a north star that every life has equal value. That where you live shouldn't determine whether you live. And that it is not about charity, it's about justice.

When we talk to people, we try to make it personal for them so that they realize that the same issues that a woman has because of inequality in sub-Saharan Africa, can be many of the same issues that affect women in other countries. But the truth is this… HIV is the leading cause of death among women aged 30-49, and in sub-Saharan Africa three out of four new HIV infections in 15-19 year olds are among girls. That’s an enormous inequality. We have find a common ground in that north star to help people understand that inequality impacts people in so many different ways… but it can be addressed.
On optimism and innovators: ARV ATM’s in Johannesburg
DD: I am an optimist. Sometimes people ask me, when you spend so much time on the ground in Africa, what's the heartbreaking story that keeps you going? And it's interesting — although I've seen many a heartbreaking incident, it’s the story of innovation that I can't get out of my head. It's the health care workers in Ghana that all of a sudden have an app that was created in this little lab with barely any electricity that's letting healthcare workers get the information they need. In Johannesburg there's a clinic that has an ATM banking machine [with] tellers that distribute the ARVs, alongside other prescribed medications. You put your social security number and you can talk to a pharmacist like you would a teller. I see that and that keeps me really, really optimistic.
We have a north star that every life has equal value. That where you live shouldn't determine whether you live. And that it is not about charity, it's about justice.

 
On showcasing your values: Converse on the dance floor
DD: Half the people that buy a (RED) product probably just like the color red. Yet we try to put on the packages something about [what (RED) is and does]. I love the idea that if you're wearing red Converse shoes and you're dancing on a dance floor and somebody says, “Oh you must care about AIDS” and you're like, “should I?”  And maybe that would get you to come to our website. So it goes both ways — I think that the general notion of products for good is just so common in today’s generation. And why not do that? The (RED) products never cost any more than the non-(RED) ones. And so if you make a positive choice that makes you feel good. And, it's come to you in an organic way. That's a big swing of this generation. It’s almost an "of course." And I think that you will demand that from every company.

Sixty percent of your generation will take a cut in pay to work at a job with purpose. So those brands want to get out there the good they do, which hopefully will motivate them to do more good.
On artists & ‘getting big swings’: Skrillex brings hope and music to youth 
DD: You know Skrillex? The electronic dance music pioneer?  He was in Liberia right before Ebola hit, and he felt that the youth had no hope – it was just incredibly hard for everyone. So we're with all these policy people and we had this great dinner, and at the end of dinner when people were talking about infrastructure, he just got up and said that what’s missing here is engaging youth, and giving them hope. So in South Africa — a country with one of the highest burdens of HIV — he started Bridges for Music in a township outside Cape Town. Today, there is a school where kids can go, learn their music and have hope.

It's all about doing something out the box that somebody like Skrillex could do… we've come across innovative ways to get big swings and people involved. And I think those stories are what really resonate now.

Feature image courtesy of (RED). 
                    [post_title] => Deb Dugan on Narrative and ‘Finding a Common North Star’
                    [post_excerpt] => PHP profiles Deb Dugan, CEO of (RED). 
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                    [post_content] => Jonathan Cohn talks with Public Health Post editor-in-chief David Jones about lessons learned during his career reporting on health policy and predictions for the future.

DKJ: So, tell me a little about your background, how you got into journalism and specifically how you landed a health policy beat?

JC:  It was pretty clear early on that I love journalism. I went off to college and I took pre-med classes, but I was more interested in politics – which is what I majored in. Of course, my true major turned out to be the school newspaper.

When I got out of college, I really couldn’t find any newspaper jobs, but I did find a job at the American Prospect. I got to edit articles. I say working there for a couple years was really my graduate school. And then I ended up at the New Republic. I was editing at first but I liked to write on the side. I was looking for something to cover that no one else was covering. In 1997, no one wanted to go near healthcare. Everybody was so burnt out from the Clinton experience.

I wrote about health care for a long time when it seemed like really absolutely nobody cared. But you know what they say, if you spend enough time on something, it’ll eventually be interesting. By 2000 it had become apparent to me reading some of this stuff that the problems that were there are still here. We’re going to keep talking about them, and we’ll probably have another big debate about it. That led me to write my book.

By sheer coincidence, my book came out in 2007 right when the Democratic presidential campaign was kicking in. I appear on the scene as a knowledgeable healthcare person right at a time when everyone is interested in it.

Now as you look back with hindsight over how the past seven years have worked out, what are your reflections on what it was like in covering the passage of the ACA from 2007 to 2010?

I’ve actually spent a lot of time thinking of that. I was always proud of, and still am, of the work that policy journalists did during that debate. There was really meaty stuff to the coverage. I think most people were trying to do a different kind of journalism. Most of us, I think, were conscious of what the 1993-94 debates had been like, and since so much of it was formed by policy distortion. We were really trying something else to get away from that.

So, thinking through what we all thought the Affordable Care Act would look like when it was implemented, my sense coming out of it was: there was an ideal of what it was going to look like and it went through compromise, compromise, special interest, politics, and what came out on the other end was, like Tom Harkin said, a starter home. It would accomplish a lot and it would have a lot of drawbacks.

Looking back, I remember when the first round of stories of rate shock came out. Some people were going to end up paying more right under the new rules, and there was a sense that no one said anything about that. And you know, we wrote about that, but it’s funny, that did not get a lot of attention at the time. That was not one of the topics that really got litigated. And I think there were a lot of reasons for that. One was that we were all arguing about other stuff. And I think another reason was for someone like me, I spent a lot of time before then writing about the problems of the non-group market. I certainly had in my head a vision of a non-group market that was so dysfunctional, which it was, except there were people with coverage who didn’t get sick or they were one of the few who did have a good policy and so they were pretty happy. You don’t appreciate until it happens is that even if it is not that many people in the grand scheme of things, if it is a million people, people are going to get pretty upset. And I think we missed that story.

But then again, in the grand scheme of things, in terms of distortion of the political debate, I’ve seen much worse, even in the healthcare debate. I think right now, the way that both plans are being presented is orders of magnitude more distorted. By in large, the ACA looked like what it was promised to be.
Having seen this played out twice, there was so much work that went into crafting an Affordable Care Act before Obama even took office.

 
 

I’ve written recently that this right now feels more like 1993 than it does 2009 in that there’s consensus that they want to do something but not real consensus on what it is they want to do, whether the politics will line up with that. What do you expect this Congress to do?

So, this is going to sound funny but I said the exact same thing about it. Having seen this played out twice, there was so much work that went into crafting an Affordable Care Act before Obama even took office. You can even make the argument that if you really want to trace the history of this, you've really got to go back to the late 90s. There were a good five or eight years of foundation meetings and review articles. All that stuff that seems kind of pointless at the time, but it was about working out ideas and coming to a consensus.

By 2008, Edwards comes out with his plan and then eventually Obama and Clinton do theirs over the course of a year. And they’re all the same model, except for the mandate, everyone is kind of thinking the same. There was a real sense in the beginning that there could be Republican buy-in. And, in addition, Democrats had gone through this exercise once in 1993 and failed. Badly. I mean those scars were still there. Ted Kennedy was determined to not to let that happen again. Henry Waxman understood what had happened last time. Nancy Pelosi moved the chess pieces so that the chairs of the three committees were all her people. So, all that work, and it still took them another year and a half or a year.

Republicans are not close to there yet, conceptually. It feels more like 1993. Also, everyone who studies this stuff understands that it is hard to find a consensus. There’s always going to be losers, someone who will pay the cost and a political price. So, you got to be willing to do that, you really have want to do it. Democrats have been trying to this for 75 years or more. This was something that they really, really felt passionately about.

Republicans, the ones that understand this plan, and there aren’t that many, they got to know that at the end of the day, the big winners are the people whose taxes go way down, which is predominantly the top 3% of the income scale, people who are in relatively good health and young, or relatively affluent, who will certainly be happy. Look, there are lot of trade-offs to the ACA, and there will certainly be people who are getting worse insurance now and will get better insurance as a result, but there will be a lot of people who are going to lose health insurance and a lot of people will end up paying more.

As sympathetic as someone who paid more under the ACA [was] it’s a whole lot worse to face a news story when it’s a cancer patient or the parent of someone with a congenital heart condition. More of those people in more dire circumstances. So, the potential blowback will be really hard and I just wonder, has this dawned on more and more Republicans because I don’t think a lot of them know this yet. I don’t think they understand this yet, not that they’re not thinking about this. They’re really going to want to see this through, take a year of their time, lose the political opportunity cost. I question whether they have that will.
...there are lot of trade-offs to the ACA, and there will certainly be people who are getting worse insurance now and will get better insurance as a result, but there will be a lot of people who are going to lose health insurance and a lot of people will end up paying more.

 
Another tricky dilemma here is what the Democrats do and how they deal with it. What are you hearing right now on Capitol Hill about how Democrats are thinking about those trade-offs and their dilemma?

I am surprised at the extent to which Democrats decided to immediately take a really hard line on this and basically, we’re not going to even negotiate unless you’re talking about something that keeps coverage roughly where it is. They’ve held that line successfully to my surprise. I would have predicted you would have had Democrats defecting.

The politics of this are changing so quickly. I think if you’ve asked me a week or two afterwards, I would say if Democrats were lucky, Republicans will decide to straighten out that they want bipartisan buy-in, and there would be some deal where a large repeal but some of the mechanisms stay in place and states that expanded Medicaid maybe get the chance to keep some of the people on the roll.

But I think there are chances of a very different outcome. The window of possibilities has moved substantially now. There is a very real possibility Republicans come out of this with nothing. I think Democrats are in no rush to help a party that offered them no help. I think they feel like they have the upper hand, they’re the ones who are standing by, keeping coverage for people.

And it’s funny to me, that the most unusual situation in politics is a win-win for both parties. The Republicans would get to claim victory, which is important. They would be true to their principle of state sovereignty, giving states more flexibility. States that really felt that strongly about it, you know, can go ahead and change things more. At the same time, some people will lose coverage which if you’re a Democrat you really are unhappy about. On the other hand, it kind of ends the Obamacare wars as we know them.

Feature image: Center for American Progress Action Fund, Barack Obama at Las Vegas Presidential Forum, used under CC BY Attribution-NoDerivs 2.0/cropped from original 
                    [post_title] => Jonathan Cohn: Covering Health Reform
                    [post_excerpt] => Jonathan Cohn talks with editor-in-chief, David Jones, about lessons learned during his career reporting on health policy and predictions for the future.
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                    [post_content] => Sarah Kliff sat down with PHP editor-in-chief David Jones for an interview at the Vox headquarters in Washington, D.C. to talk about her career and the challenges of ‘explaining the news.’

DKJ:  I'm curious how you got started, including how you landed on covering heath at Politico?

SK: So I kind of got into healthcare a little bit by accident. I was super involved in my college paper at Washington University and I figured when I graduated someone would pay me to do this thing I was doing for free. So I got this internship with Newsweek that turned into a full time job as an assistant to the national news editor during the 2008 election. That ended and I went back to healthcare but I was still interested in politics, and this is right when the ACA debate is starting. I'd actually written a lot about reproductive health in the political context and then this debate over abortion coverage in the ACA started and that was kind of like, the gateway drug of sorts. And when you want to understand one thing about the ACA, you have to learn ten other things, and then you just fall down this rabbit hole. And eight years later I'm still down it!

What led you to focus on state implementation of the ACA?

Politico was posting this job writing their healthcare newsletter Pulse right after the law passed, and I was still really interested in covering it, so I applied for that and got it. A lot of people really wanted Congress and I proactively chose state implementation of health reform because I thought it was a good beat. In Congress nothing was happening, it was just a lot of gridlock. But states were actually making real decisions. I also liked it because state legislators were so accessible. You can just call their cell phones. You can call their house and their kid picks up!

How do you sort through all the data and evidence, I mean the stuff that it almost takes a PhD to understand, and even then it's hard?

I feel like someone should give me a PhD for, like, the time I spent learning about healthcare! I think it's almost similar to being a graduate student or PhD student in a way. You kind of have to accept there's a lot you don't know.

I pretty regularly read Health Affairs and relevant articles in JAMA or the New England Journal of Medicine; they all have press lists that I'm on. I'd say Health Affairs in particular is probably the most aligned journal with what I do. I think a lot of my familiarity with the literature comes from actually talking to professors and talking to people who are doing the studies, who will then refer me to other relevant research. Talking to people who know the space I think has been really key.

And do you find academics write in a way that's useful for you? What can we do better to make our work more accessible?

Yeah! Generally, I think the thing that helps me most is getting back to me when I email. I love when academics are like, "hey, by the way if you're writing about this, I did this research." It feels way more legitimate than coming from a press office. I don't want to throw university press offices under the bus, but it's so much easier just to deal straight with who worked on the research.
Journalists are always looking for interesting stories that other people haven't stumbled on, like things that are kind of going unnoticed but maybe are a big public health victory that is hard to see.

 
What role do you see a journalist playing in explaining vs. just reporting on "here's what happened yesterday"?

That's kind of at the core of Vox's mission. Like if you see on our website, it says, "explain the news." There’s this sort of video about Vox, where [Ezra] says "we're kind of like the vegetables," like the thing you had to eat. But you can have really terrible vegetables or you can have really good vegetables. We decided policy was boring so we didn't try and make it interesting. And the idea we had at Vox was like, "well a lot of people do want to know." There is a hunger for actually good information, and I think that's particularly true in an era where there's so much information to choose from.

How do you deal with this in the era of “alternative facts” in which President Trump has made the media his enemy?

I think it's hard. A lot of the data I rely on comes from the government. We had that whole fight about crowd size that was kind of silly and absurd but at least you could adjudicate that with photographs. One of the things I'm a little nervous about as someone who focuses on explanatory journalism, is what kind of data we're going to get out of the Trump administration. Because I think that'll be a lot harder to adjudicate. You can't look at picture of all the insured people in America and say, "Those numbers don't seem quite right." I don't know what it's going to be like. We're on day ten but it feels like it's been months already [laughs]!

What was it like interviewing President Obama?

Yeah, kind of terrifying! It was great. We thought it went really, really well. I think both Ezra and I were nervous, but felt prepared. If there was anything I was going to have a conversation with the President about, I would definitely pick the Affordable Care Act.

We didn't really want to get into the politics of the Affordable Care Act. We had the opportunity, you know, we could ask whatever we wanted. We really wanted to keep it focused on some of these bigger-picture, structural questions around the ACA. President Obama termed it kind of a 'wonk-fest' [laughs]. It also just felt great that we've been around for three years and we were doing one of the last interviews with the president, really like the only extended interview we've seen him give on the Affordable Care Act, and right as he was leaving office. So it was really exciting. It was stressful, but I'm glad it happened and I'm glad it's over.

So do you have any predictions? What do you see coming out of this Congress on the ACA?

I think repeal is going to be way, way harder than I thought a month or two ago. There was a lot of disarray with Democrats in 2009 when they were trying to do health reform, but they always had the same goal. They wanted to increase coverage. I think one of the reasons we’re seeing this struggle on the Republican side is I don't think it's really clear what the goal is, unless the goal is just repealing Obamacare. I think a good example of this tension is the conversation around deductibles. Where there's like a ton of rhetoric like 'The deductibles are too high!" and this is the biggest problem with Obamacare. But then you look at all Republican replacement plans and they all rely on high deductible health plans. I don't know that the Republicans have a clear idea.

How do you think about the role of public health in this conversation? How does public health overcome its disadvantages in trying to get its voice heard in such a crowded, noisy fight?

I think you're right that it is a challenge. Because health insurance you can see, right? Like when you get a policy, you get a card, and you see health insurance expanding. Whereas it feels like you only see the failures of public health. The success of public health is often quite invisible.

I think in particular for researchers who want to get the work out that they do on public health, look for journalists you respect, who you think cover the types of things you work on and feel totally fine reaching out to them. You're an expert. Journalists are always looking for interesting stories that other people haven't stumbled on, like things that are kind of going unnoticed but maybe are a big public health victory that is hard to see.

Feature image: Sarah Kliff and Ezra Klein, editor-in-chief of Vox, interviewing President Obama. Courtesy of Sarah Kliff. Photo: Kainaz Amira, Vox. 
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                    [post_excerpt] => Sarah Kliff talks with PHP editor-in-chief David K. Jones about her career and the challenges of ‘explaining the news.’ 
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                    [post_content] => Public Health Post is presenting a series of profiles of health policy journalists and the work that they do. Here, Michael Stein spoke with Dan Diamond, the author of POLITICO Pulse and creator of PULSE CHECK, a podcast that features weekly conversations with some of the most interesting and influential people in health care. Michael caught up with Dan in between coming off the air on NPR and interviewing a Congressional leader. Read part one of the interview here.

MDS: Why do you think – and you can disagree with my premise and set me straight – there’s so little journalistic work on public health? There’s interest in technology, brain science, genomics, precision medicine, you hear those words endlessly, but those things that public health researchers believe drive the great costs of the system, like social determinants of health, are rarely taken up.

DD: There’s a lot of truth to public health issues being overlooked. I would probably, off the top of my head, pull off three reasons for that. It’s hard to get people focused on lives that were saved. It’s a lot easier to focus on the actual bad thing that happened. When something good happens, it’s harder to tell that story. Secondly, the political energy is not around public health right now, it’s around the big macro question about the survival of Obamacare. Lastly, and this gets to you and your students, we need more good storytellers. There are infinite stories to tell in health care, there are not enough people out there telling them. That’s where students can play a role.

MDS: What’s your view about reporting on Trump’s tweets? Is such reporting really the future of our news?

DD:  We’ve gone back and forth on how to report on tweets, how much to do it. Our editor has said, ‘This is news.’ These are presidential proclamations in a sense. But you can’t just report on the tweets. You’ve got to provide context and talk about the bigger story. If Trump was saying, ‘Universal coverage for everybody,’ which he didn’t say in a tweet but he said in the a Washington Post interview – it might as well have been a tweet because there was really very little link to reality there – if you’re going to cover that, you can’t do it credulously and spread it on the cover of a major newspaper like the Washington Post did. You’ve got to say: This is what he said and this is what’s actually going to happen, or this is why it matters and he’s right on this, but he’s wrong on these other things. So I don’t think we can ignore what the President says, especially given that millions of people are following him and sharing, but it’s on journalists to debunk or at a minimum put in context when possible.
I think becoming a health policy journalist is one of the coolest jobs in this policy and political moment. Health care is a huge and fascinating part of the economy.

 
MDS: Is there an article you’re most proud of writing in the past year?

DD: One is how Obamacare was the secret jobs program in many ways for the administration. When the law was being drawn up all those years ago, there were debates in the White House. Do we make this harder on the health care industry and as a result maybe kill some jobs at this time of economic recovery, or do we take it easier on the health care industry because every other industry is losing jobs while health care is the only one growing. Do we want to mess with that?

MDS: As you look out, are there certain stories or topics that you wish you were working on but don’t have time to take up right now?

DD:  I’m very curious how some of the Silicon Valley advances are actually playing. There’s a lot of pessimism about Silicon Valley and their role in health care and I think it’s deserved. If you think about where we are going in 2-3 years it’s not Apple, it’s what is the government going to do. If you’re thinking about 20 years on, the idea of wearables and their impact is still really interesting to me.

MDS: What do you tell a person who’s thinking about becoming a health policy journalist? What’s the sell these days?

DD: I think becoming a health policy journalist is one of the coolest jobs in this policy and political moment. Health care is a huge and fascinating part of the economy. You can attack it from multiple ways, writing about health care business, writing about health care and the intersection with public health, or health care and congress. To me this is the most interesting beat that any journalist can have. I love my job. I absolutely love it.

Feature Image: Dan Diamond Twitter, @ddiamond, 10:04 PM - 25 January 2017
                    [post_title] => Dan Diamond: Context and the Bigger Story
                    [post_excerpt] => Our full interview with Dan Diamond of Politico: Michael caught up with Dan in between coming off the air on NPR and interviewing a Congressional leader.
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                    [post_content] => Julie Rovner has been covering health on Capitol Hill for over three decades. Her voice and expert reporting will be familiar to anyone who listens to NPR, where she served as health policy correspondent for 16 years. She is the author of the popular reference guide Health Policy A to Z,  now in its third edition, and she continues to cover major health policy issues like the looming repeal of the Affordable Care Act. Rovner sat down with PHP’s Jonathan Gang for a chat about her career and the big stories she sees on the horizon in 2017.

JG: How did you get your start reporting on the healthcare beat?

JR: I was hired at Congressional Quarterly in 1986. I think at the time the beat was health, welfare, and government operations. It was that or transportation and commerce. They chose for me, and I have not looked back since.

When you were first getting started in the field, can you point to any story that you did that you really felt like you had made it?

Yeah! I think it was in 1988 or 1989 after I covered my fourth budget reconciliation bill, I did a big story about how the reconciliation process twists the health policy process because it makes health policy back-fit to meet budget goals, rather than doing health policy for health policy’s sake. It’s a story that has stuck with me through my entire career because it hasn’t changed.

What are some favorite stories you’ve worked on over the years? 

I wrote, I think, one of the first big stories about pro-life Democrats. I was covering reproductive health, and it dawned on me that none of these things could ever pass. Why is that when the Democrats control – at this point it was both houses of Congress? It was because a third of the Democrats wouldn’t vote with them on reproductive health! That was 1992. Other than that, there so many, so many stories over the years.

I’m not an investigative reporter. I’m sort of an explanatory kind of reporter. So, my stories aren’t big flashy news, for the most part. They’re mostly helping people understand what’s going on.

What’s your strategy for taking a piece of health care legislation or policy that might be really complicated and putting that into terms that a general audience can understand?

In some ways, it helps that I have a broad institutional memory. So, one of the things I like to do is put it in the context of “has this happened before?” The answer is usually “yes,” or something similar. A lot of the same issues keep coming back.

You have some facility having written about it 150 times. That’s my favorite kind of writing though. Taking complicated things and breaking them down so that people can understand them. It helps that I’ve been doing this for thirty years, so I understand them.
...there’s an art to writing a good abstract about a study. You know, it’s the old “you never get a second chance to make a first impression.” Make your first impression a good one, and then I might go in and dig deeper.

 
 

What are your primary sources for what’s going on in health and health policy?

I don’t know if I have primary sources. I read blogs, I read press releases, I read website. I get press releases from lawmakers, from the Department, from the White House, and from interest groups. I go to events. I do read a lot. When I was leaving the health beat at CQ and talking to my successor, I said “if you’re not inherently interested in this topic, it will kill you. But if you are interested, it will be endlessly fascinating.” I’ll find myself sitting around at home sometimes reading Health Affairs articles. After all these years, I still find it interesting.

What can public health researchers or other academics do to make your job easier?

Try to put things in English. I’m pretty skilled in reading academic research but if it’s badly written and I have to slog through it… Please, don’t. I read a press release yesterday that I found interesting but I didn’t end up linking to the study because I was so frustrated. It raised all of these questions that it didn’t answer.

There’s an art to writing a good press release about a study and there’s an art to writing a good abstract about a study. You know, it’s the old “you never get a second chance to make a first impression.” Make your first impression a good one, and then I might go in and dig deeper. Or at least don’t make your first impression a bad one.

With the incoming administration, what are some of the issues and stories that you are focusing on?

The repeal of the Affordable Care Act. And the repeal of the Affordable Care Act. And the repeal of the Affordable Care Act. And also, reproductive health. But everything right now is playing a back seat to the repeal of the Affordable Care Act.

Do you have any insight into how you see that story developing or where you think things are going?

I have no idea! I would guess at this point that things are more fluid than some people are saying. There are a lot of potential hurdles for Republicans. It will not be as easy as they think. I think I tweeted last week that they’re juggling with lit sticks of dynamite here. Can they do it? Maybe. If not, big boom.

What do you think some of the challenges are going to be in reporting on healthcare over the next four to eight years?

I’m a little concerned, particularly that the administration, and perhaps Republicans on Capitol Hill, might just stop talking to the media, or that they’ll only talk to “friendly” media. I’ve covered lots of changes of administration from party to party and I will say that on a bipartisan basis it’s kind of harder to get information out of the department. Every administration seems to try to centralize more and say less. From Bush one to Clinton, Clinton to Bush two, Bush two to Obama, it’s gotten harder every time regardless of party. But I think this particular group of Republicans really, really, really hates media. I’m really concerned about media access.

Feature image courtesy of Julie Rovner. 
                    [post_title] => Julie Rovner: Shining a Light on Healthcare Policy
                    [post_excerpt] => Julie Rovner, Kaiser Health News, talks with PHP’s Jonathan Gang about her career and the big stories she sees on the horizon in 2017.

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                    [post_content] => Over his long career in public service, Ron Sims has always fought for healthy communities. From 2009 to 2011 Sims was the Deputy Secretary of the Department of Housing and Urban Development. Before that, he served as the County Executive of King Country, Washington for 12 years, working on policies that prioritized affordable housing, climate change, and social justice.

Now happily retired, Sims has served as the volunteer chair of the Washington Health Benefit Exchange Board, the group responsible for implementing the Affordable Care Act in Washington State, since 2014. Sims sat down with PHP’s Jonathan Gang to discuss his career, the future of the ACA and the role that public health will play in fighting for people’s access to healthcare over the next four years.

PHP: You’ve had a long and distinguished career in public service, from King County to the Department of Housing and Urban Development to the Washington Health Exchange. In broad terms, what role has public health played in your career?

Sims: I can’t think of a year when public health did not play a role in my career. When I was first elected as a county council member, public health reported to my committee. Then, when I became executive of King County, public health was going through a significant transformation, a merger of two governments at one time. We were looking at how we would be able to sustain public health and the new roles that we wanted it to play in our rapidly growing region. When I got Housing and Urban Development, I brought a lot of the work that had been done in public health with me. Particularly, a study that I had asked public health to do.

When I was the county executive I had a report from a group called the Joint Center that had identified that 36% percent of African Americans under the age of 30 would have nothing in common with America but their death. So, I brought that back to one of my staff who was a demographer, a young man named Chandler Felt. I had a rule, which is that if I gave you information, I wanted you to think it through. It wasn’t that I would be in a hurry to get it, but I was going to give it time to grow and mature. I call that “Smart people be smart.”

So, several months later, I asked about whether they were close to being finished with their analysis and they asked for two more months, which I gave them. They came back with a report that disturbed them, which was our ability to determine life outcomes such as lifetime earning of children and cause of death by zip code with incredible precision.

When I went to the US Department of Urban Development, I brought that with me. We continued to use that tool and applied it on a national basis by reminding jurisdictions that [ictt-tweet-inline]a zip code is not just an address. It is a life determinant[/ictt-tweet-inline]. We needed to refocus our attention on why that happens and try to figure out whether we could make these life determinants positive.

PHP: And what are some of the ways that you’ve worked to address that issue?

Sims: I think there are several. One thing is that we noticed that neighborhoods that have wide sidewalks, community gathering points, many parks, that are well-lighted, and well vegetated, that’s really important. Canopy cover is very important. We always do better in what’s called the grasslands than we do in concrete. And the data screams out loud that we need to do more of that.

Neighborhoods that were considered to be “nice” had all of that. Neighborhoods that were poor lacked an organized system of parks and playgrounds. They had narrower sidewalks. They were not well lighted. They did not have places for people to sit and watch the neighborhood or for people to walk around safely.

We realized that the built environment had significant epigenetic consequences for people. A neighborhood could either soothe them or it could bring a sense of wanting to escape or flee. If you look at cortisol levels, we see that flight response. If you have that flight response when you go to the classroom of a school, you can’t learn because the information you’re getting is being packaged differently than a student that comes in and is very relaxed.

Interestingly enough, if you take a person who is in those neighborhoods and you move them to a neighborhood that’s considered to be a better neighborhood, one that’s well vegetated, has wider sidewalks, has good lighting, that has a capacity for people to relax and feel safe, they do better. Now we know that for people who have moved, their lives change. [ictt-tweet-inline]We realized that the built environment has significant consequence.[/ictt-tweet-inline]

PHP: So, what’s the way forward to address this problem?

Well, let me talk about public health and its role.

If you go into public health, your voice has legitimacy. But the issue is not to make it a traditional health issue, like how do you treat diabetes or how do we deal with obesity or immunizations? All of which are really important. It’s about working with the other schools. For instance, if you talk about a community design, you’ve got to talk about planners. You’ve got to talk about people who are in urban agriculture, or landscape architects. Transportation planners. Our assumptions are that those schools are easy to communicate with, and they’re not. So, public health has to be the driver at getting people out of their lanes. Break down the silos so that we can say “all of these other elements are really, really important.” We’re never going to have a discussion unless public health people see themselves as being catalytic and being able to communicate with other disciplines about how we resolve complex issues in those neighborhoods.

There’s a lot of work to be done, but it requires new skills. You’re going to be in a room full of bright, skilled people and you have to understand where they’re coming from and the language that they use. The one thing you do when you come out of any graduate school I know of is you develop an art form: the use of a particular language to describe something. But a landscape architect might have a whole different vocabulary than you in looking at the same problem.

The key is to listen and learn. Public health people have to be, in my opinion, the catalyst. The people who are going to break those walls and invite other people to be a part of the solution. And to listen to them so that we can see “here’s our public health issue that we are looking at, and here are the roles that you can play to ensure that we have a healthier population.”
Public health people have to be, in my opinion, the catalyst. The people who are going to break those walls and invite other people to be a part of the solution.

 
PHP: We are entering an uncertain time for the country and especially the ACA and public health in general with the results of the last election. So what do you think are some of the biggest challenges that we’re going to face over the next four years in terms of public health?

I think that the changes will not be as dramatic on the public health side as we think, because it’s not the target. What is disturbing is that there are people who believe that people should not have healthcare, which stuns me in a modern age.

I think some of the early rhetoric is now dissipating over how much of the ACA can be rejected. For instance, in my state of Washington, a columnist came out and said here are the percentage of people who have either had Medicaid or lower cost insurance. All of those were counties that President-elect Trump won. The blue counties were not the ones that had the highest percentage of people who were in the ACA either by number or percentage.

I think what’s going to happen is that as this discussion goes on is we’re going to see the areas that President-elect Trump won are the areas that are most dependent on the ACA. And I think that most people want to strengthen their base, they don’t want to weaken it. Taking away health insurance will do that.

PHP: As someone in public service, what is your plan for the next four years? What are you hoping to fight for?

Since those meetings have already started, I think many of us now are trying to figure out what are the next steps for insuring that people will continue to have full health coverage. That’s going to be really, really critical, because that can’t fail. It creates too many problems.

I want to continue to be an advocate for extensive research into things like pandemics, because we’re going to have one. The issue is how quickly we can mobilize, but we’re going to have one. There’s just too many people on the planet, and viruses love hosts. We’re going to get viruses that do what viruses do, which is move very, very quickly from one human being to another.

What we’re not doing well is looking at some underlying causal factors. You know, and a lot of those are based upon diet, mobility issues. We’re still going to have to deal with obesity issues, diabetes issues, heart attack issues. We’re still going to have to look at what is a healthy child. How do we increase the learning capacity of children by making changes to the built environment in particular? What constitutes really good health? That will be our biggest challenge.

Photo: Ron Sims at Boston University School of Public Health Dean's Symposia: How Does Where You Live Affect Your Health?, December 1, 2016, courtesy of Boston University School of Public Health Communications Office. 
                    [post_title] => Ron Sims: How Where You Live Affects Your Health
                    [post_excerpt] => Sims sat down with PHP’s Jonathan Gang to discuss his career, the future of the ACA and the role that public health will play in fighting for people’s access to healthcare over the next four years.
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