Posted in Advocacy, Health Communication, Political communication, Uncategorized

NORD Press Release on AHCA

NORD Issues Statement on Today’s Passage of the American Health Care Act

Washington, D.C., May 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the passage of the American Health Care Act:

“Today the House of Representatives passed American Health Care Act (AHCA). We are very disappointed the House pursued and passed this legislation, and we will continue to do everything we can to prevent this legislation as it is currently written from being enacted.

The AHCA jeopardizes the health and wellbeing of rare disease patients across the country. The bill allows states to opt-out of critical pre-existing conditions protections, including the prohibition on annual and lifetime caps and community rating.

Community rating prohibits insurers from charging individuals higher premiums based on health status. Without a community rating, pre-existing conditions protections are rendered moot, as insurance companies will once again be capable of charging higher premiums to those with pre-existing health conditions. Community rating is essential to maintaining access to quality and affordable healthcare coverage for rare disease patients.

In addition, the bill allows states to set their own Essential Health Benefits (EHB) categories rather than complying with the ten Federal EHB categories. Both the prohibition on annual and lifetime caps as well as the maximum out-of-pocket caps apply only to the EHB categories. If the EHBs are turned over to states, states could choose to allow insurers to once again set annual and lifetime caps on medically necessary services for rare disease patients by only mandating coverage of certain EHBs. States could also allow insurers to set prohibitive cost-sharing amounts without any out of pocket cap. We strongly oppose this measure as it is unacceptable to once again expose rare disease patients to these draconian caps and cost-sharing requirements.

Under the AHCA, federal funding of Medicaid would be substantially weakened by per capita caps and block grants, resulting in states potentially delaying or outright refusing coverage for necessary care under Medicaid. Rare disease patients seeking expanded Medicaid coverage would be turned away after 2019, and additional Federal assistance for the 1915(k) Community First Choice program would be removed. Many rare diseases are financially catastrophic with families often having no choice but to become single-income households because either an adult is sick, or a parent must stop working in order to become a sick child’s primary caregiver.

We remain unconvinced that the continuous coverage proposal will adequately incentivize healthy individuals to enter the market to stabilize premiums, or that the tax credit structure will provide enough assistance to low-income individuals with rare diseases seeking coverage.

We have said throughout this process that we are committed to assisting Congress and the Administration as they navigate ACA repeal and replace. We remain committed today to ensuring that Congress enacts legislation that improves the health and wellbeing of rare disease patients across the country. With continued dialogue and collaboration, we hope to be able to support legislation that improves the lives and wellbeing of rare disease patients.”

Retrieved from https://rarediseases.org/nord-issues-statement-house-passes-american-health-care-act/?utm_source=policystatement_05042017&utm_medium=email

Posted in Uncategorized

Merry Christmas, Friends!

Merry Christmas and a happy holiday season to all! (Sorry for the ad in the beginning of the video – apparently, this video is more popular this year!)

 

 

Someday at Christmas men won’t be boys
Playing with bombs like kids play with toys
One warm December our hearts will see
A world where men are free

Someday at Christmas there’ll be no wars
When we have learned what Christmas is for
When we have found what life’s really worth
There’ll be peace on earth

Someday all our dreams will come to be
Someday in a world where men are free
Maybe not in time for you and me
But someday at Christmastime

Someday at Christmas we’ll see a land
With no hungry children, no empty hands
One happy morning people will share
A world where people care

Someday at Christmas there’ll be no tears
When all men are equal and no man has fears
One shining moment, one prayer away
From our world today

Someday all our dreams will come to be
Someday in a world where men are free
Maybe not in time for you and me
But someday at Christmastime

Someday at Christmas man will not fail
Hate would be gone and love will prevail
Someday a new world that we can start
With hope in every heart

Someday all our dreams will come to be
Someday in a world where men are free
Maybe not in time for you and me
But someday at Christmastime
Someday at Christmastime

Posted in Communicating for Social Change, Communication, Groups, Political communication, Uncategorized

Countering Dangerous Speech: Inoculation and Injection

The U.S. and international media are alight with reports of Donald Trump’s latest fear-mongering, divisive, racist, bigoted, and xenophobic shenanigans. It seems that we cannot escape Trump and his bully pulpit until the election. Trump’s latest blast, in the aftermath of the San Bernardino attack, asserts that all Muslims should be banned from entering the U.S. (not to overshadow his other equally vile suggestions such as requiring all Muslims to register in a database and instituting surveillance of mosques). His suggestions are not just offensive, however; they are potentially dangerous to a free and civil society and to the safety of individual members of his most recent target group, Muslims, especially as he gathers followers. Thus, it is important that we recognize that there are ways to counter dangerous speech and that we recognize, support, and join the efforts of those who are already doing so.

Dr. Susan Benesch (2014) coined the term dangerous speech to refer to speech that has “the capacity to catalyze collective violence” (Countering dangerous speech, 2014, p. 1). The concept applies well to the kind of anti-Muslim rhetoric offered by Trump and others like him. History tells us that violence is a logical and foreseeable outcome of the group-based demonization that characterizes this kind of speech, whether the speaker explicitly calls for violence or not. For a recent example, consider the suggestion by Liberty University President Jerry Falwell, Jr., that students should get concealed carry gun permits so “we could end those Muslims before they walked in…” (Bailey, 2015). Although Falwell later walked back the reference to Muslims in general and clarified that he meant Islamic terrorists, the identification and demonization of a target group, and the call to arms against members of the group, was clear (especially in light of the fact that gun violence and terrorist attacks have also been visited on Americans by members of Falwell’s own identity group, Christians, including an attack on a Colorado Springs Planned Parenthood center just days before the San Bernardino attack). To loosen the nexus between dangerous speech and potential violence, Dr. Benesch (2014) suggested that (1) we must be able to identify dangerous speech, and (2) we must be able to counter it while still respecting the right to freedom of speech.

Dangerous speech can be identified through its content, speaker, audience, context, and means of dissemination (Benesch, 2014). Dangerous speech portrays a target group as “alien and dangerous” (Countering dangerous speech, 2014, p. 1). The target group is presented as a threat to the survival of the audience to the extent that violence is justified as a form of self-defense. The audience is susceptible to appeals to their identity and their fears. The appeals are typically made by a powerful speaker who tends to be respected by, popular with, and trusted by the audience, and who wields influence over its members (Benesch, 2014; Countering dangerous speech, 2014). Dangerous speech is likely to be disseminated in a setting where the audience is united around some cause and dissenting views are either not represented or are suppressed.

Benesch (2014) noted that dangerous speech can be countered by means that focus on the speaker, the content, or the audience. Because regulating speakers and content is usually a matter for the legal or legislative process, what I am focusing on here is audience, specifically, how to help members of the audience understand, evaluate, and reject dangerous speech. Audience action does not threaten freedom of speech; in fact, it is an exercise of free speech. The recommended approaches are to inoculate the audience against efforts to make dangerous speech seem acceptable and to inject counterspeech (Benesch, 2014; Countering dangerous speech, 2014). Leaders, the media, and the public can all take a proactive role in countering dangerous speech through inoculation and injection strategies.

Leaders. Influential leaders can speak out against hate and divisiveness and inject positive, inclusive messages about members of the target group. We have recent examples of leaders doing this. President Obama said, in his speech to the nation following the San Bernardino attacks:

Here’s what else we cannot do. We cannot turn against one another by letting this fight be defined as a war between America and Islam. That, too, is what groups like ISIL want. ISIL does not speak for Islam. They are thugs and killers, part of a cult of death, and they account for a tiny fraction of more than a billion Muslims around the world — including millions of patriotic Muslim Americans who reject their hateful ideology. Moreover, the vast majority of terrorist victims around the world are Muslim. If we’re to succeed in defeating terrorism we must enlist Muslim communities as some of our strongest allies, rather than push them away through suspicion and hate.

But just as it is the responsibility of Muslims around the world to root out misguided ideas that lead to radicalization, it is the responsibility of all Americans — of every faith — to reject discrimination. It is our responsibility to reject religious tests on who we admit into this country. It’s our responsibility to reject proposals that Muslim Americans should somehow be treated differently. Because when we travel down that road, we lose. That kind of divisiveness, that betrayal of our values plays into the hands of groups like ISIL. Muslim Americans are our friends and our neighbors, our co-workers, our sports heroes — and, yes, they are our men and women in uniform who are willing to die in defense of our country. We have to remember that. (Transcript, 2015)

Another example comes from Senator Bernie Sanders in an appearance on “The Tonight Show Starring Jimmy Fallon:”

A minute into the 10-minute interview, Mr. Fallon asked Mr. Sanders to respond to Mr. Trump’s recent proposal to bar all Muslims from entering the United States.

“Throughout history, you’ve had demagogues trying to divert attention away from the real issues,” Mr. Sanders said. “And what someone like Trump is trying to do is divide us up. A few months ago, we were supposed to hate Mexicans that he thinks are all criminals and rapists. Now, we are supposed to hate Muslims. And that kind of crap is not going to work in the United States of America.”

The crowd responded with loud applause that lasted several seconds. Mr. Sanders used the moment, with the crowd still clapping, to press issues at the core of his campaign. He said the United States faced enormous problems including a disappearing middle class and a corrupt campaign finance system.

“I think what the American people understand is that given the problems that we face, we’ve got to stand together, come together, and create a decent life for all of our people and stop this scapegoating of one group or another,” Mr. Sanders said. (Alcindor, 2015)

It is even more powerful when a leader from within the speaker’s own identity group condemns the dangerous speech, as Republican Speaker of the House Paul Ryan and other GOP leaders did (Caldwell & Rafferty, 2015). This undermines the legitimacy of the speaker as a member, let alone a representative, of the identity group.

Media. Media outlets can counter dangerous speech by sharing positive stories about members of the target group, avoiding the use of inflammatory language, and challenging or calling out false claims (Benesch, 2014). Media programming can provide stories that encourage between-group empathy and that model how to evaluate and respond to dangerous speech. Media reports can also encourage critical thinking. In particular, the media can highlight when and how the speaker is manipulating the audience in order to serve his own quest for power rather than serving the interests of the audience (Benesch, 2014, p. 12). For example, Healy and Barbaro (2015) did this when they reported in The New York Times:

Mr. Trump has a track record of making surprising and even extreme comments whenever he is overtaken in opinion polls by other Republican candidates – as happened on Monday just hours before he issued his statement about Muslims.

The Public. Members of the public can also counter dangerous speech, individually and collectively. This is especially important because, as Benesch pointed out, “…extremist views gain purchase in a society when dissenters remain quiet” (p. 16). Benesch (2014) called a collective response to dangerous speech counterspeech in unison. Dissenters could attend speeches and rallies where the dangerous speech is likely and make their opposition voices heard. Social media also provide venues for members of the public to express their opposition to dangerous speech. In addition to stating their own opinions, members of the public could use social media to share and amplify positive messages from leaders and media outlets.

In sum, speech that demonizes a target group and calls for discrimination against members of that group is potentially dangerous speech. To counter such speech, leaders, the media, and members of the public can use strategies of inoculation and injection. We do not have to sit back and accept it or treat it as normal. In fact, it is critical that we do not.

References

Alcindor, Y. (2015, Dec. 9). For Bernie Sanders, policy and levity on ‘Tonight Show.’ The New York Times. Retrieved from http://www.nytimes.com/politics/first-draft/2015/12/09/for-bernie-sanders-policy-and-levity-on-tonight-show/

Bailey, S. P. (2015, Dec. 5). Jerry Falwell Jr.: ‘If more good people had concealed-carry permits, then we could end those’ Islamist terrorists. The Washington Post. Retrieved from https://www.washingtonpost.com/news/acts-of-faith/wp/2015/12/05/liberty-university-president-if-more-good-people-had-concealed-guns-we-could-end-those-muslims/

Benesch, S. (2014, Feb. 11). Countering dangerous speech: New ideas for genocide prevention. Working Paper for U.S. Holocaust Memorial Museum. Retrieved from http://dangerousspeech.org/resources/2014/countering-dangerous-speech-new-ideas-for-genocide-prevention

Caldwell, L. A., & Rafferty, A. (2015, Dec. 8). GOP leaders denounce Trump’s plan as Anti-American. NBC News. Retrieved from http://www.nbcnews.com/politics/2016-election/paul-ryan-denounces-donald-trumps-anti-muslim-plan-n476201

Countering dangerous speech, protecting free speech: Practical strategies to prevent genocide. (2014). Report of the 2014 Sudikoff Annual Interdisciplinary Seminar. Washington, DC: United States Holocaust Memorial Museum. Retrieved from http://www.ushmm.org/m/pdfs/20150512-sudikoff-report.pdf

Healy, P., & Barbaro, M. (2015, Dec. 7). Donald Trump calls for barring Muslims from entering U.S. The New York Times. Retrieved from http://www.nytimes.com/politics/first-draft/2015/12/07/donald-trump-calls-for-banning-muslims-from-entering-u-s/

Transcript: President Obama’s address to the nation on the San Bernardino terror attack and the war on ISIS. (2015, Dec. 6). CNN. Retrieved from http://www.cnn.com/2015/12/06/politics/transcript-obama-san-bernardino-isis-address/

Posted in Communicating for Social Change, Political communication, Uncategorized

Bernie Sanders: Compassion, Strength, and Working Across Differences

Within about 5 minutes of perusing the news sites this morning, I was in a glum mood.  The headlines indicated that we are approaching the climate change tipping point, that some bacteria no longer respond to our best antibiotics, and that, oh yes, we need to be terribly afraid of all Muslim/brown/immigrant/refugee people (take your pick, it seems).  Coupling this with my own struggles with my health lately, I felt assaulted from all sides, sad for the current state of the human race, and not very hopeful for the future. Really, that is not like me at all. So, I am grateful that I had the chance to watch Bernie Sanders speak at Georgetown University this afternoon.

While the main theme of his speech was about the meaning of Democratic Socialism, he took on all of the tough issues facing the U.S. and the world today, including economic inequality, access to health care, climate change, racism, xenophobia, terrorism, and national and international security.  He shared a coherent vision, one that is grounded in a deep sense of human compassion, a firm grasp of history and policy, and a lifetime of public service. That vision was supported by concrete plans, including plans for how to work effectively across differences in a divided Washington and how to build international coalitions across religious and ideological differences.  The ideological label attached to that vision is almost beside the point.

If this is Democratic Socialism, sign me up.  Senator Sander’s words resonated with my own commitment to issues of economic and social justice — for everyone, not just the privileged few.  It is difficult to explain how much my heart welled with pride and happiness to hear the Senator speak boldly, bluntly, and fearlessly about these issues. He truly does speak truth to power. I have to say, it was one of the best policy speeches I have ever seen, and I spent quite a few years teaching public speaking. Suddenly, I feel a bit more spring in my step.