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 Communicating for Social Change, Compassion, Conflict, Political communication

50 Years Ago: MLK Riverside Speech

Fifty years ago today, April 4, 1967, Dr. Martin Luther King delivered a powerful speech in which he connected the U.S. civil rights movement to opposition to the Vietnam War.

MLK-quote-riverside 779x400

His words about nonviolent action, compassion, and social change remain meaningful today – especially today.

Here is the true meaning and value of compassion and nonviolence, when it helps us to see the enemy’s point of view, to hear his questions, to know his assessment of ourselves. For from his view we may indeed see the basic weaknesses of our own condition, and if we are mature, we may learn and grow and profit from the wisdom of the brothers who are called the opposition.

Audio: https://www.youtube.com/watch?v=3Qf6x9_MLD0

Transcript: http://kingencyclopedia.stanford.edu/encyclopedia/documentsentry/doc_beyond_vietnam/

 

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.