How to Be a Patient Advocate

By Barby Ingle, Columnist

People in the pain often get ideas about what they can do to help advocate for the pain community, such as a petition drive or letter writing campaign. Some of these ideas are great, but when they try to implement them or get others to, things don’t work out -- there’s little participation, they get discouraged, and that is the end of that.

Over the past 10 years as a patient advocate who is very vocal and seen many ideas come and go, I have learned not to spend too much time doing what I know doesn’t work.

Is this fair to others in the pain community? I think so.

About 7 years ago I wanted to make a difference in the disease community of Reflex Sympathetic Dystrophy (RSD). I wanted to get bills passed to require mandatory education in RSD for providers. It would have to be a state-by-state process, which would take time, money and dedication, with no guaranteed results.

I started in Virginia by reaching out to a state legislator. He met with me through Skype, and then had me come to his office. I learned that anytime you want to mandate anything, it is very difficult to get passed into law. The legislator suggested I work with the Virginia health department. I had multiple meetings with state health officials and managed to get RSD information up on the health department's website, as well as over 10,000 RSD pamphlets printed and spread throughout Virginia. It was amazing. I then set my sights on other states.

We needed to raise funding for the printing of pamphlets for other states. A woman called and said that she saw our request for donations, but before she donated she wanted to make sure that this was not another fly-by-night idea. She was right to ask, although I was slightly offended that my hard work, volunteer time and dedication would be called into question.

In the end, we couldn’t raise the funding needed to get this accomplished. I was very sad, but had to admit my great intentions could not come to fruition because I was not able to raise the support or funding it would take. People loved the idea, but didn’t want to help physically or financially.

I have grown very leery of petition drives for similar reasons. The chances of a petition changing something major is almost zero. Even when over 80 pain groups came together this past year to help guide and make changes to the CDC opioid prescribing guidelines, it was not enough.

We did get one pain patient representative added to an advisory "stakeholder" group, which gave recommendations to the CDC's "Core Expert Group" committee. But that committee already had in mind what they were going to do, and unless we got someone on the Core Expert Group, we were not going to change their minds or the guidelines. Thousands of people in the pain community also wrote letters and signed petitions to the CDC. It didn’t make a difference.

What can we do to change this?

There has to be a way to harness the energy and passion in the pain community that is effective, efficient, and useful. Otherwise the pain community will continually be run over and ignored.

I believe we have to get into legislative offices. Today, this week, or this month, make an appointment with your state or local representative -- especially if they are on a legislative health committee. Go see them in person. Tell them your story. Tell them why proper and timely access to pain care is badly needed. How you are counting on them to support future legislation that is supportive of pain patients.

Tell them that you are paying attention, not just when there is a bill up for a vote, but every day -- because you are in pain and have special needs every day. Paint your story for your legislator so they will remember you when they are in the backrooms making deals before committee hearings.  Make them remember your face, your name and your story when they are deciding what bill to pass and how it will affect you.

Put a face to your disease and a face to chronic pain. As a 501 (c) (3) non-profit leader, I cannot say you should vote for this legislator or against that one. I approach legislative needs with each legislator not caring what aisle or political party they belong to. All legislators can help us because they are all in a position to pass laws.

Realize that everyone has an agenda. Which is most noble? The pain patient trying to do something for themselves so they can have more productive lives; insurance companies that lower the cost of healthcare; drug and medical device makers that are investing their time and money into treatments; or the providers we rely on to gain access to those treatments?

Become a person that the legislator knows, become the face in their thoughts when pain care comes up for legislation. Put a human in the process, so that the legislator sees that this affects people they know.

Patient advocacy groups have formed coalitions, such as the Consumer Pain Advocacy Task Force. These coalitions are planning and implementing strategies, and working together to make change as well. Professionalism and diplomacy are keys to their work and they need to be done by all in the pain community, whether you belong to an advocacy group or if you are working on your own.

Advocating with aggressive anger to our legislators, pharmacy boards, CDC, DEA, FDA, etc. allows our emotions take over and it is setting us all back. Flooding an office with angry letters, emails and phone calls with non-sustainable facts does not work.

We need to have in-person visits before the legislation even comes up. This is the "off season" for most legislators. Reaching out now, before the legislative sessions start again, for a face-to-face meeting has a time -- and it is now. 

We also need to target our own representatives. Having people from New Mexico calling legislators in West Virginia is probably not going to change any minds in West Virginia. In addition, making comments that are unsupported by facts, such as claiming that more patients are overdosing or turning to the streets for relief, are not yet proven. They can be debunked and then we are seen as catastrophizers.

Please know actual facts and be able to site statistics with solid sources when you advocate.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation (iPain). She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.