Posted in Advocacy, Health Communication, Political communication

More on a Health Care Solution in Search of a Problem

Yesterday, I posted a response to the portion of the President’s February 28 address to Congress where he used the example of a young woman suffering from Pompe Disease, and her father’s heroic efforts to develop a treatment for the disease, as fodder for an attack on the FDA. I was motivated by the striking disconnect between the problem – developing effective treatments for rare diseases and making them accessible to patients – and the President’s proposed solution (gut the FDA). It was as if he had a solution in mind and then went looking for a dramatic problem that could justify his solution. The pieces just did not fit.

Since the President’s speech, others have dug deeper into this dubious connection between problem and solution, questioning the truth of the President’s claim that government bureaucracy was responsible for keeping new treatments from reaching patients who needed them. Their reports demonstrate that, contrary to what the President stated, the FDA process is not the problem in getting accessible and effective treatments to patients with rare diseases:

Herper, M. (2017, March 1). Would Trump’s FDA deregulation create an age of miracles? Don’t bet on it. Forbes. Retrieved from https://www.forbes.com/sites/matthewherper/2017/03/01/would-trumps-fda-deregulation-create-an-age-of-miracles-dont-bet-on-it/#4c1a81443883

Huron, J. (2017, March 1). NORD issues statement on President Trump’s Address to Congress. National Organization for Rare Disorders. Retrieved from https://rarediseases.org/nord-issues-statement-president-trump-address-congress/

Johnson, C. (2017, Feb. 28). The backstory behind the rare disease patient Trump highlighted to Congress. The Washington Post. Retrieved from https://www.washingtonpost.com/politics/2017/live-updates/trump-white-house/real-time-fact-checking-and-analysis-of-trumps-address-to-congress/the-backstory-behind-the-rare-disease-patient-trump-highlighted-to-congress/?utm_term=.0c32e803b570

Raymond, L. (2017, March 1). Trump’s disingenuous attack on the FDA highlights the precarious future of medical research funds. ThinkProgress. Retrieved from https://thinkprogress.org/if-trump-really-cared-about-medical-advances-hed-increase-funding-not-slash-regulations-e59a78e30647#.ri1r1dk7f

What most of these authors did conclude, however, as I concluded yesterday, is that various other features of the President’s agenda may pose more of a danger to patients with rare diseases than FDA procedures. Health care policy is complicated. People’s health, welfare, and lives are at stake. We should be wary of the oversimplification, linear thinking, and easy scapegoating that serve a purely political agenda.

Posted in Advocacy, Opinion, Political communication

Rare Diseases: The Day After

The buzz went around the Facebook pages of the Pompe patients groups yesterday that Megan Crowley, a 20-year old Pompe patient, would be sitting beside the First Lady during the President’s address to Congress. Megan is not just any Pompe patient. Her father is John Crowley, who spearheaded the research into a treatment for Pompe disease and thereby saved Megan’s life and countless others, including mine. (For a dramatic retelling of his story, see the film Extraordinary Measures.) While there is still no cure for Pompe, it is no longer a death sentence, thanks to the enzyme replacement treatment John Crowley helped develop. We are all deeply indebted to the Crowley family.

During last night’s address to Congress, the President called attention to Megan, her father, and their story. I felt a sense of both gratitude and inspiration as the camera moved to Megan and her father in the gallery. I was also grateful to the President for mentioning Rare Disease Day. Sadly, my warm response ended there. Within less than a minute, the President’s true agenda emerged. He used the Crowley’s story as a prop for his mission to destroy federal agencies and eliminate federal regulations:

An incredible young woman is with us this evening who should serve as an inspiration to us all.

Today is Rare Disease day, and joining us in the gallery is a Rare Disease Survivor, Megan Crowley. Megan was diagnosed with Pompe Disease, a rare and serious illness, when she was 15 months old. She was not expected to live past 5.

On receiving this news, Megan’s dad, John, fought with everything he had to save the life of his precious child. He founded a company to look for a cure, and helped develop the drug that saved Megan’s life. Today she is 20 years old — and a sophomore at Notre Dame.

Megan’s story is about the unbounded power of a father’s love for a daughter.

But our slow and burdensome approval process at the Food and Drug Administration keeps too many advances, like the one that saved Megan’s life, from reaching those in need.

If we slash the restraints, not just at the FDA but across our Government, then we will be blessed with far more miracles like Megan.

Let’s think about this for a minute. Is the FDA approval process really the most critical issue facing people with rare diseases? In taking this particular turn from Megan’s story, from all the other possible lessons to be learned from her life, her father’s work, and the daily lives of other patients with rare diseases, the President revealed his underlying beliefs. In his view, the government is an impediment to progress; laws and regulations are restraints that must be slashed indiscriminately; and society will be better off if we allow unrestrained corporations to do business whatever way they want to do business.

I am not the first to observe that, in a capitalist system, government regulation is required to protect citizens and the common good, because corporations operate on one motive only: making a profit. Still, let me offer a few observations about the role of government regulation in the lives of people with rare diseases:

  • Drug Trials. The FDA does not “keep advances from reaching those in need.” The FDA is charged with protecting the public health. Drug companies must seek FDA approval when they want to bring a new drug to market, and they must demonstrate the safety and effectiveness of the drug through clinical trials. This takes time. Vulnerable, sick people participate in those clinical trials, and they need protection from the pressures of the profit motive. Let’s not forget that people sometimes die in clinical trials. Likewise, the people who will eventually acquire the drugs on the open market need protection, too. I shudder to think of the potential for abuse in a profit-based system for drug development that does not offer a counterbalance of consumer protections. Those protections come from government regulations.
  • Orphan Drug Act. Drug companies that want to develop treatments for rare diseases can take advantage of the Orphan Drug Act, which falls under the purview of the FDA. The sole purpose of this act is to give financial and other incentives to drug companies so that they will take an interest in developing treatments for rare diseases. Before the Orphan Drug Act, drug companies showed little interest in rare diseases – the population of patients was too small to be profitable. Now, orphan drug development is a booming industry. I wonder if the President is aware of this, and that it was government regulation that made these advances possible when the profit motive itself is what stood in the way.
  • Health Care Costs. What can keep advances in medicine from reaching patients with rare diseases is, quite simply, the cost. Advances in medicine mean very little to patients who cannot afford to access medical care. Patients with rare diseases face significant, sometimes staggering, health care costs. Rare diseases are often multiple-system diseases, which means patients must consult on a regular basis with a team of specialists and they sometimes must take multiple medications. Orphan drugs are among the most expensive on the market. In addition to their medication, some patients need wheelchairs, walking frames, respiratory therapy and support devices, in-home assistance, special diets, physical therapy, orthotics, and more. Obviously, affordable health insurance with realistic coverage terms is essential. Patients with rare diseases need insurance with affordable premiums and co-payments, affordable annual deductibles, no exclusions for pre-existing conditions, no annual or lifetime caps on coverage, all-tier drug coverage, and broad physician networks that include a wide variety of specialists. Moreover, many will have to be able to purchase this insurance individually because they do not have employer-sponsored health insurance. In the President’s zeal to “repeal and replace” the Affordable Care Act, I would like to hear more about how he will address these issues.
  • Quality of Life. There is one more area where protective government regulations matter for patients with rare diseases: the quality of life issues. Children with rare diseases need access to education, which means they need the protection of the Individuals with Disabilities Education Act (IDEA). People of working age may need the protections of the Americans with Disabilities Act (ADA), so that they can continue working for as long as they are able. People who can no longer work need access to a livable disability income, or Social Security retirement benefits, as well as Medicare or Medicaid to cover their medical expenses. I once read that Americans with disabilities are “the poorest of the poor.” I do not see how slashing government regulation will improve this condition. If anything, it will exacerbate it.

So, if the President truly wants to show support for people with rare diseases, he can do a lot better than promising to slash FDA regulations. He could pursue an entire agenda that would reflect a real understanding of the complex and difficult situations of people with rare diseases as well as genuine caring for them and their families.

 

 

 

Posted in Communicating for Social Change, Media Communication, Political communication

TED-Ed: What Orwellian Means

In my last post, I captioned an image with the word “Orwellian,” intending a reference to the works of George Orwell, such as 1984 and Politics and the English Language.  Now, The New York Times reports that 1984, published in 1949, is surging to the top of the Amazon best-seller list.

What does “Orwellian” mean? This short video by Noah Tavlin for TED-Ed lays it out clearly and beautifully. While authoritarian governments are known to employ Orwellian tactics, Orwellian means more than just authoritarianism. The term refers to how people in power manipulate language to control the thoughts, opinions, and actions of others, and thus, their very reality. Deception is a key linguistic strategy for manipulation, and a constant barrage of deception diminishes the individual’s sense of reality. This makes the individual dependent on those in power for “truth,” which serves the goal of promoting unquestioning adherence to the ideology of the powerful.

After watching Tavlin’s video, I was reminded of how deeply communication is entwined with projects of social change. I was also reminded that, while “communication for social change” sounds like a positive endeavor, the term itself has no inherent morality: communication can be used to foster both constructive and destructive social change. Communication is simply a tool, one that immoral actors can wield as easily and well as moral actors.

I am heartened to see the renewed interest in 1984. In a period where political leaders routinely and unabashedly lie in the face of concrete and easily retrievable contrary evidence, where a President can tell citizens not to believe photos of inauguration crowds that they can see with their own eyes, where newspaper editors debate whether it is proper to call a lie a lie, where an advisor to the President tries to silence the media by making it “the opposition party,” where another advisor to the President suggests that there are such things as “alternative facts,” we have never needed Orwell’s insights more.

georgeorwellxobeygiantprintset-1984coverbyshepardfairey

 

Posted in Communicating for Social Change, Inspiration, Political communication

Inauguration Day: On a Moving Train

Howard Zinn, the late historian and activist, once said, “You can’t be neutral on a moving train.” The train is moving. Here are some principles on which I cannot and will not be neutral:

  • All people deserve to be treated with dignity, respect, and compassion. This includes especially those people who seem to be easy for others to marginalize, demonize, and victimize: women, people of color, the disabled, immigrants, members of the LGBTQ community, the elderly, the poor, the sick, prisoners, and people who choose religions other than Christianity as well as those who choose not to affiliate with any religion at all.
  • We must uphold and defend our Constitution, including our First Amendment protections for freedom of speech, freedom of the press, freedom of assembly, freedom of religion, and freedom to petition our government for redress of grievances.
  • We need to maintain the separation between church and state.
  • A vibrant democracy requires a free and independent press.
  • Education is a public good that creates an informed citizenry. We must support access to free, high quality public education for all.
  • Our public officials should be accountable, ethical, transparent, and truthful.
  • Service to citizens is the essence of government. Our government officials should not enrich themselves, their families, friends, or donors, at the expense of the citizens they serve.
  • Health care is a human right.
  • We need to protect the environment and the world’s natural resources from greed and undue reliance on fossil fuels.
  • We have a right to live our lives in privacy, free of government and corporate surveillance.
  • Severe economic inequality destroys the fabric of society. We must recognize that laws that unjustly enrich the few at the expense of the many, rather than any individual’s lack of effort or merit, are often at the heart of economic inequality. When we see laws that foster inequality, we must fight to change them.
  • People should come before profits.
  • Corporations are not people.

These principles are not radical. They have been expressed, to greater or lesser extent, in the Universal Declaration of Human Rights and also The Constitution of the United States. On these principles, I am not neutral and will not be silent.

Posted in Communicating for Social Change, Health Communication, Political communication

Rare Diseases: When Health Care Policy Kills

People with rare diseases are among the most vulnerable to changes in health care policy. Treatments for rare diseases, especially rare genetic diseases, tend to be expensive. The people who suffer from each disease do not comprise a large enough population to be heard in policy discussions. Thus, it is easy for governments to ignore the needs of these patients and make policy decisions that negatively impact them.

The incoming Republican administration seems determined to do all it can, as quickly as it can, to destroy the Affordable Care Act. Yet, despite the years of chest thumping about “repeal and replace,” Republicans have offered remarkably little discussion of any coherent health care policy. The reason for repeal seems to be no more complex than blind hatred of President Obama. The replacement that is supposed to be so much better remains unarticulated, both in vision and details. This slipshod approach to policy-making already has produced jitters in the health care industry, in the insurance industry, and among economists, as uncertainty and destabilization loom. But those who will suffer most from the effects of the incoming administration’s poor policy planning are those who also seem to be mentioned the least – the patients. For their sakes, it is worth remembering that health care policy can kill.

Laurence “Laurie” Hill died in New Zealand on December 30, 2016, at age 54, of respiratory insufficiency due to late-onset Pompe Disease (Harvey, 2017). Pompe Disease is a rare genetic disorder in which an enzyme deficiency causes glycogen to accumulate in the muscle cells. Patients typically experience the resulting muscle damage as progressive weakness in the skeletal and respiratory muscles. Laurie’s death at age 54 was not the inevitable result of the disease, though. Laurie died as a result of a deliberate health care policy decision by the New Zealand government.

There has been a treatment for late-onset Pompe Disease since 2010 — bi-weekly intravenous infusions with Lumizyme®, a genetically engineered enzyme replacement. While not a cure, research shows that the infusions can both extend the lives of Pompe patients and improve their quality of life. Before Lumizyme®, Pompe was a fatal disease; since Lumizyme®, it has been a treatable disease. Laurie’s government, which is responsible for health care policy and funding, refuses to cover the treatment in its health plan. In fact, when Laurie went to Parliament to appeal for treatment for the ten Pompe patients in his country, the prime minister’s security guards turned him away (Harvey, 2017). In effect, his government told Laurie to just go ahead and die.

New Zealand, through its health care policy, put Lumizyme® treatment out of the reach of ordinary patients, thereby rendering Pompe Disease a fatal disease for its citizens. Why? The short answer is that Lumizyme® is expensive. Although the precise cost of treatment depends on the patient’s weight, the annual cost per patient is estimated at approximately a half million dollars (Murphy et al., 2012). Thus, the New Zealand government’s decision to deny the drug to Laurie and the other Pompe patients reflects an economic calculation that, ultimately, their lives are just not worth the cost. I cannot imagine how it feels to be on the losing end of that calculation, but I may be finding out soon.

There are between 5,000 and 10,000 Pompe patients in the world. I am a member of the community of Pompe patients in the United States. Right now, we live in fear of what the incoming administration will do to limit our access to health care. Like Laurie Hill, we can be sentenced to death by government policy. The Affordable Care Act has been critical to securing our access to treatment because, among other consumer protections, it provides an annual out-of-pocket maximum for our medical costs, eliminates annual and lifetime caps on benefits, and prevents insurers from excluding those with pre-existing conditions from coverage. Eliminating the protections of the Affordable Care Act could well mean that, in the U.S., Pompe Disease will be once again a fatal disease, simply because the government put treatment out of reach of the patients.

On the same day that I received, through my Google Alerts, the story about Laurie Hill’s death in New Zealand, I also received an investment report that discussed the expectations for growth in the market for Pompe Disease treatment in coming years and the revenue-generating potential in this market. Apparently, Pompe Disease is a good investment — as long as you are not a patient. The U.S. government encourages research and development for treatments and cures for rare diseases like Pompe, most notably through such legislation as the Orphan Drug Act and the 21st Century Cures Act. Legislation provides various incentives to researchers and drug companies to develop treatments for diseases whose populations are too small to be of much interest otherwise. I am grateful for these incentives and the miracles they have produced. At the same time, I have to note that the focus of policy is heavily on the supply side.

Patients with rare diseases are on the frontier of research and development, too. It is the patients who have these rare diseases who participate in the clinical trials to test new treatments. Patients put their own bodies and lives on the line in hopes of finding treatments and cures, even if not for themselves, at least for others. Moreover, as patients undergo treatments that extend their lives, scientists gain the opportunity to learn more about their diseases. This has been the case with Pompe Disease, where improved patient survival has led to a better understanding of the mechanisms and effects of the disease, which, in turn, has generated research into new treatments. For Pompe, Lumizyme® is already considered a “first generation” treatment and “second generation” treatments are in development. Notably, too, Jules Berman (2014) argued that advances in understanding and treating many of the common diseases have resulted from, and will continue to come from, the insights researchers gain through studying people with rare diseases. None of this progress would be possible without the patients.

Patients with rare diseases do not set the prices for the drugs or any other aspect of the health care that we need. We are simply trying to live our lives as best we can, with symptoms most people do not understand. We are vulnerable to the quality of the policy decisions made by our elected officials, which could abruptly change or even end our lives. For example, a decision to reinstate caps on benefits or exclusions for preexisting conditions, or to eliminate annual out-of-pocket maximum payments, could turn Pompe Disease back into a fatal disease, not because there is no treatment, but because patients cannot afford it. Moreover, such policy decisions would create a bitter paradox in which the government uses tax dollars to support scientists and corporations in the development of treatments for rare diseases with one hand, while with the other hand making treatments inaccessible to the very patients who need them (and who pay those taxes) (Murphy et al., 2012).

The incoming Republican administration wraps itself in pro-life language. The hypocrisy is palpable. A truly principled pro-life position is one of compassion for all, one that demands keeping health care accessible and affordable, even for the rarest among us. We Pompe patients are just one segment of the larger community of patients with rare diseases. There are approximately 7000 rare diseases, defined in the U.S. as any disease that affects less than 200,000 people. Combined, about 25-30 million people in the U.S. suffer from rare diseases. And we are all at risk of suffering the same tragic fate as Laurie Hill, just so politicians can score political points.

 

References

Berman, J. J. (2014). Rare diseases and orphan drugs: Keys to understanding and treating the common diseases. London, UK: Academic Press.

Harvey, H. (2017, Jan. 5). Much-loved teacher and counselor, Laurie Hill, loses battle with Pompe Disease. Stuff. Retrieved from http://www.stuff.co.nz/national/education/88149234/much-loved-teacher-and-counsellor-laurie-hill-loses-battle-with-pompe-disease

Murphy, S. M., Puwanant, A., & Griggs, R. C. (2012). Unintended effects of orphan product designation for rare neurological diseases. Annals of Neurology, 72(4), 481-490. doi:10.1002/ana.23672

Posted in Communicating for Social Change, Inspiration, Political communication, Role Models

Thank You, President Obama

Because, sometimes, you just need the full text. The unedited transcript of President Obama’s farewell address (although I have highlighted in bold some portions that are relevant to this blog):

It’s good to be home. My fellow Americans, Michelle and I have been so touched by all the well-wishes we’ve received over the past few weeks. But tonight it’s my turn to say thanks. Whether we’ve seen eye-to-eye or rarely agreed at all, my conversations with you, the American people – in living rooms and schools; at farms and on factory floors; at diners and on distant outposts – are what have kept me honest, kept me inspired, and kept me going. Every day, I learned from you. You made me a better president, and you made me a better man.

I first came to Chicago when I was in my early 20s, still trying to figure out who I was; still searching for a purpose to my life. It was in neighborhoods not far from here where I began working with church groups in the shadows of closed steel mills. It was on these streets where I witnessed the power of faith, and the quiet dignity of working people in the face of struggle and loss. This is where I learned that change only happens when ordinary people get involved, get engaged, and come together to demand it.

After eight years as your president, I still believe that. And it’s not just my belief. It’s the beating heart of our American idea – our bold experiment in self-government.

It’s the conviction that we are all created equal, endowed by our creator with certain unalienable rights, among them life, liberty, and the pursuit of happiness.

It’s the insistence that these rights, while self-evident, have never been self-executing; that we, the people, through the instrument of our democracy, can form a more perfect union.

This is the great gift our Founders gave us. The freedom to chase our individual dreams through our sweat, toil, and imagination – and the imperative to strive together as well, to achieve a greater good.

For 240 years, our nation’s call to citizenship has given work and purpose to each new generation. It’s what led patriots to choose republic over tyranny, pioneers to trek west, slaves to brave that makeshift railroad to freedom. It’s what pulled immigrants and refugees across oceans and the Rio Grande, pushed women to reach for the ballot, powered workers to organize. It’s why GIs gave their lives at Omaha Beach and Iwo Jima; Iraq and Afghanistan – and why men and women from Selma to Stonewall were prepared to give theirs as well.

So that’s what we mean when we say America is exceptional. Not that our nation has been flawless from the start, but that we have shown the capacity to change, and make life better for those who follow.

Yes, our progress has been uneven. The work of democracy has always been hard, contentious and sometimes bloody. For every two steps forward, it often feels we take one step back. But the long sweep of America has been defined by forward motion, a constant widening of our founding creed to embrace all, and not just some.

If I had told you eight years ago that America would reverse a great recession, reboot our auto industry, and unleash the longest stretch of job creation in our history…if I had told you that we would open up a new chapter with the Cuban people, shut down Iran’s nuclear weapons program without firing a shot, and take out the mastermind of 9/11…if I had told you that we would win marriage equality, and secure the right to health insurance for another 20 million of our fellow citizens – you might have said our sights were set a little too high.

But that’s what we did. That’s what you did. You were the change. You answered people’s hopes, and because of you, by almost every measure, America is a better, stronger place than it was when we started.

In 10 days, the world will witness a hallmark of our democracy: the peaceful transfer of power from one freely elected president to the next. I committed to President-elect Trump that my administration would ensure the smoothest possible transition, just as President Bush did for me. Because it’s up to all of us to make sure our government can help us meet the many challenges we still face.

We have what we need to do so. After all, we remain the wealthiest, most powerful, and most respected nation on Earth. Our youth and drive, our diversity and openness, our boundless capacity for risk and reinvention mean that the future should be ours.

But that potential will be realized only if our democracy works. Only if our politics reflects the decency of the our people. Only if all of us, regardless of our party affiliation or particular interest, help restore the sense of common purpose that we so badly need right now.

That’s what I want to focus on tonight – the state of our democracy.

Understand, democracy does not require uniformity. Our founders quarreled and compromised, and expected us to do the same. But they knew that democracy does require a basic sense of solidarity – the idea that for all our outward differences, we are all in this together; that we rise or fall as one.

There have been moments throughout our history that threatened to rupture that solidarity. The beginning of this century has been one of those times. A shrinking world, growing inequality; demographic change and the specter of terrorism – these forces haven’t just tested our security and prosperity, but our democracy as well. And how we meet these challenges to our democracy will determine our ability to educate our kids, and create good jobs, and protect our homeland.

In other words, it will determine our future.

Our democracy won’t work without a sense that everyone has economic opportunity. Today, the economy is growing again; wages, incomes, home values, and retirement accounts are rising again; poverty is falling again. The wealthy are paying a fairer share of taxes even as the stock market shatters records. The unemployment rate is near a ten-year low. The uninsured rate has never, ever been lower. Health care costs are rising at the slowest rate in fifty years. And if anyone can put together a plan that is demonstrably better than the improvements we’ve made to our health care system – that covers as many people at less cost – I will publicly support it.

That, after all, is why we serve – to make people’s lives better, not worse.

But for all the real progress we’ve made, we know it’s not enough. Our economy doesn’t work as well or grow as fast when a few prosper at the expense of a growing middle class. But stark inequality is also corrosive to our democratic principles. While the top one percent has amassed a bigger share of wealth and income, too many families, in inner cities and rural counties, have been left behind – the laid-off factory worker; the waitress and health care worker who struggle to pay the bills – convinced that the game is fixed against them, that their government only serves the interests of the powerful – a recipe for more cynicism and polarization in our politics.

There are no quick fixes to this long-term trend. I agree that our trade should be fair and not just free. But the next wave of economic dislocation won’t come from overseas. It will come from the relentless pace of automation that makes many good, middle-class jobs obsolete.

And so we must forge a new social compact – to guarantee all our kids the education they need; to give workers the power to unionize for better wages; to update the social safety net to reflect the way we live now and make more reforms to the tax code so corporations and individuals who reap the most from the new economy don’t avoid their obligations to the country that’s made their success possible. We can argue about how to best achieve these goals. But we can’t be complacent about the goals themselves. For if we don’t create opportunity for all people, the disaffection and division that has stalled our progress will only sharpen in years to come.

There’s a second threat to our democracy – one as old as our nation itself. After my election, there was talk of a post-racial America. Such a vision, however well-intended, was never realistic. For race remains a potent and often divisive force in our society. I’ve lived long enough to know that race relations are better than they were ten, or twenty, or thirty years ago – you can see it not just in statistics, but in the attitudes of young Americans across the political spectrum.

But we’re not where we need to be. All of us have more work to do. After all, if every economic issue is framed as a struggle between a hardworking white middle class and undeserving minorities, then workers of all shades will be left fighting for scraps while the wealthy withdraw further into their private enclaves. If we decline to invest in the children of immigrants, just because they don’t look like us, we diminish the prospects of our own children – because those brown kids will represent a larger share of America’s workforce. And our economy doesn’t have to be a zero-sum game. Last year, incomes rose for all races, all age groups, for men and for women.

Going forward, we must uphold laws against discrimination – in hiring, in housing, in education and the criminal justice system. That’s what our Constitution and highest ideals require. But laws alone won’t be enough. Hearts must change. If our democracy is to work in this increasingly diverse nation, each one of us must try to heed the advice of one of the great characters in American fiction, Atticus Finch, who said “You never really understand a person until you consider things from his point of view…until you climb into his skin and walk around in it.”

For blacks and other minorities, it means tying our own struggles for justice to the challenges that a lot of people in this country face – the refugee, the immigrant, the rural poor, the transgender American, and also the middle-aged white man who from the outside may seem like he’s got all the advantages, but who’s seen his world upended by economic, cultural, and technological change.

For white Americans, it means acknowledging that the effects of slavery and Jim Crow didn’t suddenly vanish in the ‘60s; that when minority groups voice discontent, they’re not just engaging in reverse racism or practicing political correctness; that when they wage peaceful protest, they’re not demanding special treatment, but the equal treatment our Founders promised.

For native-born Americans, it means reminding ourselves that the stereotypes about immigrants today were said, almost word for word, about the Irish, Italians, and Poles. America wasn’t weakened by the presence of these newcomers; they embraced this nation’s creed, and it was strengthened.

So regardless of the station we occupy; we have to try harder; to start with the premise that each of our fellow citizens loves this country just as much as we do; that they value hard work and family like we do; that their children are just as curious and hopeful and worthy of love as our own.

None of this is easy. For too many of us, it’s become safer to retreat into our own bubbles, whether in our neighborhoods or college campuses or places of worship or our social media feeds, surrounded by people who look like us and share the same political outlook and never challenge our assumptions. The rise of naked partisanship, increasing economic and regional stratification, the splintering of our media into a channel for every taste – all this makes this great sorting seem natural, even inevitable. And increasingly, we become so secure in our bubbles that we accept only information, whether true or not, that fits our opinions, instead of basing our opinions on the evidence that’s out there.

This trend represents a third threat to our democracy. Politics is a battle of ideas; in the course of a healthy debate, we’ll prioritize different goals, and the different means of reaching them. But without some common baseline of facts; without a willingness to admit new information, and concede that your opponent is making a fair point, and that science and reason matter, we’ll keep talking past each other, making common ground and compromise impossible.

Isn’t that part of what makes politics so dispiriting? How can elected officials rage about deficits when we propose to spend money on preschool for kids, but not when we’re cutting taxes for corporations? How do we excuse ethical lapses in our own party, but pounce when the other party does the same thing? It’s not just dishonest, this selective sorting of the facts; it’s self-defeating. Because as my mother used to tell me, reality has a way of catching up with you.

Take the challenge of climate change. In just eight years, we’ve halved our dependence on foreign oil, doubled our renewable energy, and led the world to an agreement that has the promise to save this planet. But without bolder action, our children won’t have time to debate the existence of climate change; they’ll be busy dealing with its effects: environmental disasters, economic disruptions, and waves of climate refugees seeking sanctuary.

Now, we can and should argue about the best approach to the problem. But to simply deny the problem not only betrays future generations; it betrays the essential spirit of innovation and practical problem-solving that guided our Founders.

It’s that spirit, born of the Enlightenment, that made us an economic powerhouse – the spirit that took flight at Kitty Hawk and Cape Canaveral; the spirit that that cures disease and put a computer in every pocket.

It’s that spirit – a faith in reason, and enterprise, and the primacy of right over might, that allowed us to resist the lure of fascism and tyranny during the Great Depression, and build a post-World War II order with other democracies, an order based not just on military power or national affiliations but on principles – the rule of law, human rights, freedoms of religion, speech, assembly, and an independent press.

That order is now being challenged – first by violent fanatics who claim to speak for Islam; more recently by autocrats in foreign capitals who see free markets, open democracies, and civil society itself as a threat to their power. The peril each poses to our democracy is more far-reaching than a car bomb or a missile. It represents the fear of change; the fear of people who look or speak or pray differently; a contempt for the rule of law that holds leaders accountable; an intolerance of dissent and free thought; a belief that the sword or the gun or the bomb or propaganda machine is the ultimate arbiter of what’s true and what’s right.

Because of the extraordinary courage of our men and women in uniform, and the intelligence officers, law enforcement, and diplomats who support them, no foreign terrorist organization has successfully planned and executed an attack on our homeland these past eight years; and although Boston and Orlando remind us of how dangerous radicalization can be, our law enforcement agencies are more effective and vigilant than ever. We’ve taken out tens of thousands of terrorists – including Osama bin Laden. The global coalition we’re leading against ISIL has taken out their leaders, and taken away about half their territory. ISIL will be destroyed, and no one who threatens America will ever be safe. To all who serve, it has been the honor of my lifetime to be your Commander-in-Chief.

But protecting our way of life requires more than our military. Democracy can buckle when we give in to fear. So just as we, as citizens, must remain vigilant against external aggression, we must guard against a weakening of the values that make us who we are. That’s why, for the past eight years, I’ve worked to put the fight against terrorism on a firm legal footing. That’s why we’ve ended torture, worked to close Gitmo, and reform our laws governing surveillance to protect privacy and civil liberties. That’s why I reject discrimination against Muslim Americans. That’s why we cannot withdraw from global fights – to expand democracy, and human rights, women’s rights, and LGBT rights – no matter how imperfect our efforts, no matter how expedient ignoring such values may seem. For the fight against extremism and intolerance and sectarianism are of a piece with the fight against authoritarianism and nationalist aggression. If the scope of freedom and respect for the rule of law shrinks around the world, the likelihood of war within and between nations increases, and our own freedoms will eventually be threatened.

So let’s be vigilant, but not afraid. ISIL will try to kill innocent people. But they cannot defeat America unless we betray our Constitution and our principles in the fight. Rivals like Russia or China cannot match our influence around the world – unless we give up what we stand for, and turn ourselves into just another big country that bullies smaller neighbors.

Which brings me to my final point – our democracy is threatened whenever we take it for granted. All of us, regardless of party, should throw ourselves into the task of rebuilding our democratic institutions. When voting rates are some of the lowest among advanced democracies, we should make it easier, not harder, to vote. When trust in our institutions is low, we should reduce the corrosive influence of money in our politics, and insist on the principles of transparency and ethics in public service. When Congress is dysfunctional, we should draw our districts to encourage politicians to cater to common sense and not rigid extremes.

And all of this depends on our participation; on each of us accepting the responsibility of citizenship, regardless of which way the pendulum of power swings.

Our Constitution is a remarkable, beautiful gift. But it’s really just a piece of parchment. It has no power on its own. We, the people, give it power – with our participation, and the choices we make. Whether or not we stand up for our freedoms. Whether or not we respect and enforce the rule of law. America is no fragile thing. But the gains of our long journey to freedom are not assured.

In his own farewell address, George Washington wrote that self-government is the underpinning of our safety, prosperity, and liberty, but “from different causes and from different quarters much pains will be taken…to weaken in your minds the conviction of this truth;” that we should preserve it with “jealous anxiety;” that we should reject “the first dawning of every attempt to alienate any portion of our country from the rest or to enfeeble the sacred ties” that make us one.

We weaken those ties when we allow our political dialogue to become so corrosive that people of good character are turned off from public service; so coarse with rancor that Americans with whom we disagree are not just misguided, but somehow malevolent. We weaken those ties when we define some of us as more American than others; when we write off the whole system as inevitably corrupt, and blame the leaders we elect without examining our own role in electing them.

It falls to each of us to be those anxious, jealous guardians of our democracy; to embrace the joyous task we’ve been given to continually try to improve this great nation of ours. Because for all our outward differences, we all share the same proud title: Citizen.

Ultimately, that’s what our democracy demands. It needs you. Not just when there’s an election, not just when your own narrow interest is at stake, but over the full span of a lifetime. If you’re tired of arguing with strangers on the internet, try to talk with one in real life. If something needs fixing, lace up your shoes and do some organizing. If you’re disappointed by your elected officials, grab a clipboard, get some signatures, and run for office yourself. Show up. Dive in. Persevere. Sometimes you’ll win. Sometimes you’ll lose. Presuming a reservoir of goodness in others can be a risk, and there will be times when the process disappoints you. But for those of us fortunate enough to have been a part of this work, to see it up close, let me tell you, it can energize and inspire. And more often than not, your faith in America – and in Americans – will be confirmed.

Mine sure has been. Over the course of these eight years, I’ve seen the hopeful faces of young graduates and our newest military officers. I’ve mourned with grieving families searching for answers, and found grace in Charleston church. I’ve seen our scientists help a paralyzed man regain his sense of touch, and our wounded warriors walk again. I’ve seen our doctors and volunteers rebuild after earthquakes and stop pandemics in their tracks. I’ve seen the youngest of children remind us of our obligations to care for refugees, to work in peace, and above all to look out for each other.

That faith I placed all those years ago, not far from here, in the power of ordinary Americans to bring about change – that faith has been rewarded in ways I couldn’t possibly have imagined. I hope yours has, too. Some of you here tonight or watching at home were there with us in 2004, in 2008, in 2012 – and maybe you still can’t believe we pulled this whole thing off.

You’re not the only ones. Michelle – for the past twenty-five years, you’ve been not only my wife and mother of my children, but my best friend. You took on a role you didn’t ask for and made it your own with grace and grit and style and good humor. You made the White House a place that belongs to everybody. And a new generation sets its sights higher because it has you as a role model. You’ve made me proud. You’ve made the country proud.

Malia and Sasha, under the strangest of circumstances, you have become two amazing young women, smart and beautiful, but more importantly, kind and thoughtful and full of passion. You wore the burden of years in the spotlight so easily. Of all that I’ve done in my life, I’m most proud to be your dad.

To Joe Biden, the scrappy kid from Scranton who became Delaware’s favorite son: you were the first choice I made as a nominee, and the best. Not just because you have been a great Vice President, but because in the bargain, I gained a brother. We love you and Jill like family, and your friendship has been one of the great joys of our life.

To my remarkable staff: For eight years – and for some of you, a whole lot more – I’ve drawn from your energy, and tried to reflect back what you displayed every day: heart, and character, and idealism. I’ve watched you grow up, get married, have kids, and start incredible new journeys of your own. Even when times got tough and frustrating, you never let Washington get the better of you. The only thing that makes me prouder than all the good we’ve done is the thought of all the remarkable things you’ll achieve from here.

And to all of you out there – every organizer who moved to an unfamiliar town and kind family who welcomed them in, every volunteer who knocked on doors, every young person who cast a ballot for the first time, every American who lived and breathed the hard work of change – you are the best supporters and organizers anyone could hope for, and I will forever be grateful. Because yes, you changed the world.

That’s why I leave this stage tonight even more optimistic about this country than I was when we started. Because I know our work has not only helped so many Americans; it has inspired so many Americans – especially so many young people out there – to believe you can make a difference; to hitch your wagon to something bigger than yourselves. This generation coming up – unselfish, altruistic, creative, patriotic – I’ve seen you in every corner of the country. You believe in a fair, just, inclusive America; you know that constant change has been America’s hallmark, something not to fear but to embrace, and you are willing to carry this hard work of democracy forward. You’ll soon outnumber any of us, and I believe as a result that the future is in good hands.

My fellow Americans, it has been the honor of my life to serve you. I won’t stop; in fact, I will be right there with you, as a citizen, for all my days that remain. For now, whether you’re young or young at heart, I do have one final ask of you as your President – the same thing I asked when you took a chance on me eight years ago.

I am asking you to believe. Not in my ability to bring about change – but in yours.

I am asking you to hold fast to that faith written into our founding documents; that idea whispered by slaves and abolitionists; that spirit sung by immigrants and homesteaders and those who marched for justice; that creed reaffirmed by those who planted flags from foreign battlefields to the surface of the moon; a creed at the core of every American whose story is not yet written:

Yes We Can.

Yes We Did.

Yes We Can.

Thank you. God bless you. And may God continue to bless the United States of America.

‘Believe,’ Obama tells nation in farewell. ‘Not in my ability to bring about change – But in yours.’ (2017, January 10). Common Dreams. Retrieved from http://www.commondreams.org/news/2017/01/10/believe-obama-tells-nation-farewell-not-my-ability-bring-about-change-yours