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 Communication, Conflict, Opinion, Political communication

Political Communication: Facts and Arguments

Like many others, I am finding myself inundated right now with political discourse and outright propaganda. In the midst of this onslaught, it is frustrating to try to distinguish truth from falsehood, and even more frustrating to try to sift through illogical and misleading arguments.

In an article entitled “Facts, Arguments and Politics” in yesterday’s New York Times, Dr. Gary Gutting offered a thoughtful analysis of the interplay of facts and arguments in political discourse. After presenting a couple of examples to illustrate his points, he concluded:

What is the moral? That facts alone are necessary but not sufficient for a good argument. As important as getting the facts right is putting the facts into a comprehensive logical structure that supports your conclusion. This structure must present a plausible account of the various factors relevant to the conclusion. Without it, even an impeccable set of facts does not give us a good argument. The recent journalistic trend toward serious fact-checking holds considerable promise for improving our political debates. But we also need a serious effort at argument-checking.

One way to improve our argument-checking skills is to recognize logical fallacies when we hear them. There are numerous sources available online that define and explain logical fallacies, including:

The Top 20 Logical Fallacies from The Skeptics’ Guide to the Universe

42 Logical Fallacies from the Nizkor Project

Logical Fallacies from the Purdue Online Writing Lab

As I have stated before in this blog, critical thinking is a sound antidote to propaganda.

Posted in Communication, Conflict, Opinion, Political communication, Quotes

“Poetry of Hate”

Author Walter Mosley has published an eloquent piece on in which he examines the “poetry of hate” in our political discourse. He illustrates how language is used to create fear and hatred, and to divide rather than to unite, in the interest of securing political power.  Although it is hard to choose a favorite passage in this compelling essay, this one resonates:

We — Americans of every stripe, gender and race — are brothers and sisters in that great and ever-changing experiment of democracy. We are not enemies. If someone has a better plan he or she should ascend to our presidency. If they have lied we should know it. If they are corrupt it must come out. But we cannot allow our emotions to be ignited by hidden messages of fear and hatred. This election is about us working together to implement our brightest potentials, not our basest natures.

Posted in Conflict, Opinion, Political communication, Quotes

State of the Union Wisdom

My favorite passage….

“Finally, none of these reforms can happen unless we also lower the temperature in this town. We need to end the notion that the two parties must be locked in a perpetual campaign of mutual destruction; that politics is about clinging to rigid ideologies instead of building consensus around common sense ideas.”

– President Barack Obama, 2012 State of the Union Address

Posted in Conflict, Groups, Opinion, Political communication

One Nation, Indivisible

Several times a week, I pass a bus in my neighborhood that is emblazoned with the words, “Take Our Country Back.” It never fails to give me a chill, for its subtle suggestion of civil war, and its implicit message that there are groups in our country who are entitled to political voice and the full benefits of citizenship, and groups who are not. Sometimes I wonder to which group the drivers of the bus would assign me; then I drive a little faster.

Yesterday’s article by David Frum, entitled “Why GOP Leaders Don’t Trust Gingrich,” reminded me of the bus, and of the processes and consequences of group conflict. In the article, Frum discusses how Newt Gingrich uses a strategy of creating group division:

“…to Gingrich, such substantive issues were not the stuff of campaign politics. Campaign politics was about finding ways to define your opponent as alien, hostile and dangerous. The definition need not correspond to any actual real-world problem.”

What is described is a cynical strategy of creating in-groups and out-groups in the quest for power. From my standpoint as a scholar in communication and conflict,  I have long been troubled by the hardening of group identity boundaries that is pervasive in our national discourse, and now I am even more troubled that it is being strategically engineered for political gain.

Group identity boundaries include categories like race, religion, class, gender, age, and sexual orientation. Group identity boundaries serve an important function in generating and maintaining social conflict. In conflict, group members not only define themselves within their own group’s identity boundaries, they also define themselves “against” other groups. That is, the more group members succeed in demonizing the “other,” the stronger the identity within the group becomes.

This process is not just about who gets to wear the team tee-shirt. It is about power: groups define themselves in ways that maximize their own claims to resources and minimize the claims of other groups to those same resources. In other words, underlying any move to harden group identity boundaries by demonizing other groups can be found claims of entitlement to power and resources. If successful, the strategy results in situations where one group has control of significant resources while another group is marginalized. But the conflict does not end there. The inequities become part of the social structure. As power resources get more concentrated in the hands of certain people and groups, these inequities become a source of competition between the groups, and therefore, of continuing conflict between groups.

Maybe this strategy wins campaigns, and secures power for certain groups, at least for a time.  But this strategy also has serious social consequences. History offers countless examples of cynical leaders who pitted group against group in order to secure their own political power.  For the groups involved, the conflict does not end on the day the election results are determined.  The divisiveness permeates society, often with tragic results.  If  “one nation, indivisible” is our ideal and our goal, we should be skeptical of any leader who seeks to win the privilege of leading us by dividing us.