“Advocacy is key to the effective functioning of a democratic society and a free market economy.”1
Listening to Understand
One of our core values at Patient Advocacy Strategies is listening to understand. We believe that truly listening to other perspectives with the intent to understand is where solutions are found, and it’s a critical part of our work. Listening matters, especially in health policy.
Until this week, listening was also a critical component of decisions made in the Department of Health and Human Services (HHS).
Policy Reversal
On Monday, a notice was published in the Federal Register announcing the agency’s reversal of the longstanding Richardson Waiver. This waiver was put into place in 1971 to ensure that the public had input.
This waiver has been used by courts to reverse changes made by HHS – it is more than just a collection of words. It was a powerful tool for people to use for meaningful engagement, and now it has been rescinded. It is now easier for the government to ignore public and patient input.
In an interview with CBS News, Matt Owens said, “For decades HHS policies affecting public health and research institutions have benefitted from public stakeholder participation in the policy process. Public input is an essential element of the policy process that reflects our nation’s democratic principles.”
Two-Way Communication is Unique
An historical strength of our government has been the ability of the public to provide input on matters. This often prevents policy issues in the long run. This isn’t the case in many countries, and it highlights how our government has historically believed that listening matters.
Two-way communication is an essential element of strategic communication, and it’s simply good governance. If a public believes that they have been heard, they are more inclined to act in support.
As public opinion is a collection of individual opinions, it is imperative that all voices be heard whenever possible.
Two-way communication in government through advisory committees and public comment:
- Increases public awareness of decisions being made
- Allows for stakeholders to participate in the process and not simply be told what is going to happen
- Improves policymaking by listening to community needs and concerns before issuing a policy that would need to be amended later
- Increases public trust because citizens feel heard by their government
Patient Stories Matter
In rare disease, the ability to share stories of personal impact is critical and is often the catalyst for change. On many occasions, decision-makers are leaning one way; yet, when presented with new information (whether scientific or anecdotal) from the public, they change their minds.
“Public sentiment is everything.
– Abraham Lincoln
With public sentiment, nothing can fail;
without it, nothing can succeed.”
Advisory committees with public comment periods emphasize the government’s commitment to being powered by the consent of the governed. This also allows the public to participate in and navigate the often complex systems of government.
That to secure these rights,
The Declaration of Independence
Governments are instituted among Men,
deriving their just powers
from the consent of the governed.
Public Comments Bring Transparency and Accountability
Currently, public comments are allowed for many health decision-making bodies including the FDA, CDC, HRSA (ACHDNC). As this article highlights, it’s an essential part of the process. Interestingly, according to The Hill, this comes after HHS postponed an important meeting to allow for a public comment period.
Not allowing for public comment is the opposite of transparency because it allows the agency to make decisions in secret. It also allows decisions to be made quickly instead of deliberately. It also undermines the scientific process of making educated decisions. Public trust is in the government is already fragile, so removing the opportunity for two-way communication is not wise. Listening matters, and it is vital for the government to listen to patients.
You simply cannot know what it is like to live with a condition, or be negatively impacted by a policy, unless you hear directly from those who have. And, as parent and patient advocates, we don’t want anyone else to experience what we have in order to care about it – we want our stories to matter, our grief to have value, our child’s life and death to have a purpose. We advocate to save others from pain.
Advisory Committees Disbanded by Executive Order
This policy reversal comes just days after Trump signed an Executive Order to disband two key health-related advisory committees. Most of these health advisory committees are comprised of unpaid volunteers who are experts in their field. Advisory Committees allow the administration to receive expert advice for little to no cost (committees are overseen by HHS employees, so there is cost there) and ensure transparency as well as public input on decisions that matter to them.
In the case of the Long COVID committee, it had taken years to get to the point where the members were sworn in, only to have the president disband this unpaid committee a month later.
In an age where rare disease is finally beginning to make progress, these actions are disheartening.
Patients Deserve to Be Heard
Decision-makers cannot be experts in everything, which is why they rely on peer-reviewed data and research, public comments, etc. And, these opportunities for public comment help increase government accountability and trust. When it comes to patient stories and lived experiences, listening matters.
Take Action
This is a great opportunity to reach out to your elected officials; let them know that public comment periods are essential in health policy and ask them to correct this via legislation. The 5Calls App is a great tool to easily contact those who are supposed to represent you.
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