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current Pancreas disease issues

Advocating for Chronic Pain
Patients with Chronic Pancreatitis are facing an ever increasing threat to their quality of life as a result of the Opioid Epidemic with laws being enacted restricting and/or prohibiting access to narcotic pain medication. While the Opioid Epidemic must be addressed there needs to be a balance to ensure patients with serious conditions are protected and afforded access to narcotic pain medication they rely on to simply get through the day and to remain active participants in the workplace as well as to maintain quality of life. We must advocate for this on a local and national level to ensure the rights of those with chronic illnesses are taken into account with any new Opioid related legislation.

Write Your Legislator

As patients, and/or patient advocates, you may often be asked to write letters, or send emails, or make phone calls to your legislators.  Sometimes this may be to ask your legislator to support a particular bill, or maybe to raise awareness about diseases of the pancreas and how these diseases impact lives.

If this is not something you have ever done before it can be really daunting, so we have put together some guidelines or hints to help you.  But remember two important facts:

  1. When it comes to your story about pancreas disease, you are the expert, and if you learn to tell your story clearly and concisely it becomes a powerful tool.
  2. Legislators want to hear about meaningful work they can champion that will really benefit their constituents.

Some basic tips:

  1. Tell your story clearly in everyday language. Don’t use medical jargon.
  2. Speak from the heart. People remember stories better than statistics alone.  Appeal to common values.
  3. Give accurate and relevant statistics BUT don’t rely only on stats.
  4. Personalize your story. Where appropriate use real names.  If you change names for reasons of privacy, please indicate that the names have been changed.
  5. Keep it brief.  Legislators hear from many of their constituents so make sure your letter is concise and clear.
  6. Identify yourself.  Provide not only your contact information, but explain how pancreatic disease impacts your life – are you a patient, the parent of a patient, a caregiver, a medical professional?
  7. Provide background as needed.  The legislator may not know as much about diseases of the pancreas as you do.
  8. Keep it positive and polite. You are unlikely to achieve anything if you are rude and insulting.
  9. Close with a friendly appeal and ask the legislator to take a certain positive action.
  10. Allow for follow up.  Provide contact information and tell them that you will follow up within a certain timeframe.

So now you know what to do, how do you do it?

  1. Use the correct name and address of your legislator.  You can access this information from the following links:
    1. United States House of Representatives
    2. United States Senate
  2. Follow etiquette.  There is a specific way to address representatives and senators. All legislators are referred to as “Honorable”. So on the envelope and the inside address you would say, The Honorable (insert last name), followed by their address.  For the salutation in the letter you would say for
    1. For US Representatives – “Dear Representative ______________”
    2. For the US Senate – “Dear Senator ________________”
  3. During the legislative session, send letters to their Washington office.  When not in session send correspondence to their home office.
  4. Include your name and return address on the envelope and in the letter.
  5. If you are writing about a specify bill, please use the bill name and number and give this information in the first paragraph of the letter.
  6. Make sure your letter is legible and if possible typed.
  7. End the letter cordially and respectfully.
  8. Don’t give up.  Change often takes a long time and lots of patience and perseverance.

If your legislator does take the action you suggested or requested, remember to write them to thank them.

The same guidelines are applicable to email and phone calls with your legislator.

One person can make a difference, and that person may be YOU!