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Advocating to agencies is not only just as important as advocating to a legislature, but it can oftentimes be a more direct route to achieving real change. While laws must be passed by a majority of a legislature through a long process, changing a regulation must be approved only by the agency with oversight. Therefore achieving advocacy goals can often be done more readily using the regulatory avenue rather than the legislative one. The main challenge that discourages most advocates from advocating to agencies is navigating when to advocate, which agency to engage with, and how to effectively do so. IDF is here to help you maneuver these challenges and be successful in your agency advocacy.  

Deciding when it is appropriate to advocate to an agency can be simple. When you see a law has passed and is being referred to an agency to develop rules and regulations, ask yourself the following questions:  

  • Will this new law affect me or others in the PI community?  
  • Does the enforcement of this law affect my care or the care of others with PI?  
  • Did I advocate for the support or opposition of this law in the state or federal legislature?  

If the answer to any of these questions is yes, you should consider advocating to the agency and educating the officials on the possible effects of their regulations. A general guideline is if the rule or regulation created is of interest to you or the PI community, it is a good opportunity to partner with IDF and advocate to the agency.  

The next step to agency advocacy is deciphering which agency is the appropriate recipient of your efforts. The simplest way to narrow down which agency to advocate to is to recognize whether the regulation or rule is a local, statewide, or federal issue. Oftentimes, issues can overlap across local, state, and federal agencies. Collaborating with IDF is an excellent way to distinguish at what level you should engage on an issue.  

Local issue?

Engage with your city/county Department of Health/Human services

Regulations regarding:

  • The city/county’s public health: includes the immunization of local residents, the screening and prevention of diseases city/county-wide, and maintaining standards for the environment throughout the city/county.
  • The financing and delivery of personal health services: includes providing medical care to low-income/disabled city/county residents, funding and maintaining public hospitals and treatment centers, and ensuring a proper standard of care.
  • The providers of medical care: includes providing coverage for care and deciding who can provide that care to citizens in the county/city. 

Statewide issue?

Engage with your State Department of Health/Human services, State Pharmacy and Therapeutics Committee, or State Health Insurance Commissioner

Regulations regarding: 
 
  • The state’s public health: includes the immunization of state residents, the screening and prevention of diseases statewide, and maintaining standards for the environment throughout the state.
  • The financing and delivery of personal health services: includes providing medical care to low-income/disabled state residents, funding and maintaining public hospitals and treatment centers, and ensuring a proper standard of care.
  • The providers of medical care: includes providing coverage for care and deciding who can provide that care to citizens in the state. 

Federal issue?

Engage with the one of the administrations of the Department of Health and Human Services (HHS) including, the Food and Drug Administration (FDA), the Centers for Medicare & Medicaid Service (CMS), the Centers for Disease Control and Prevention (CDC) the Health Resources & Services Administration (HRSA) and the National Institutes of Health (NIH).

  • Regulations that involve the health of individuals across America, typically regarding:
     
    • Research: includes protecting the wellbeing of research participants and ensuring the integrity and credibility of research findings.
    • Public health: includes surveying the nation’s health status and health-related needs, providing health assistance and resources to states, and protecting the U.S. against international health threats.
    • Drug and device safety: includes allowing new medical treatments to reach the public quickly while also ensuring that new treatments are both safe and effective. 

To take a more in-depth look at local, state, and federal agencies and what they do, read our quick guide to regulatory agencies below. IDF will keep advocates updated on local, state, and federal issues that may require action.  

Click here to download the "Agencies and What they Do" document

 

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