How to Get Involved
While each state’s process is a little bit different, here are some of the ways to make your voice heard in the DUR process.
Attend the DUR Board meeting
All of these meetings are open to the public, whether they are occurring in person or virtually. Some states require you to register in advance to attend the meeting. For others, you can just show up! See Section 7 of this toolkit to find links to the DUR Board/P&T Committee sites, meeting schedules, and other information for each state.
Many states include instructions on their DUR Board site on how to register or attend the meeting. However, if that information isn’t readily apparent, no problem! There is usually a secretary or other administrative person’s contact information listed on the site. Don’t hesitate to call or email this person and ask for more information or help getting registered.
Speak at the meeting
Visit the DUR Board site to see if there are instructions or requirements to speak. If you don’t see the information on the site, call the administrative person and ask for help.
Each state has a different process for allowing people to speak at the actual meeting, but assume that you’ll have to register in advance. Some states use a “first come, first served” approach, and others use a random lottery system to determine who will get to speak. Keep in mind that there is likely to be a deadline to register to speak that could be weeks ahead of the meeting itself, so if you want to have a chance to speak, start the process early!
Assume you will have to fill out some kind of paperwork to speak. The most common requirement is some kind of disclosure about your interest in the proceedings. This might include who you are representing, whether you are being compensated to participate, whether you own stock or have other financial interests in the product, and/or other information showing whether you stand to gain financially from the decision. These disclosure requirements are for transparency purposes, and are often required by state law or some other regulation. They don’t make your input matter more or less.
If you get the chance to speak, there are likely strict limits on how much time you have. Usually speakers are limited to five minutes at most, and more likely far less than that, so plan accordingly! Practice your remarks and time yourself so you have a good sense of how much you’ll be able to say.
See Section 3 of this toolkit for some tips on making your statement as compelling as possible, and Section 4 for a template to help you get started.
Submit a statement in advance or after the fact
If you are not selected to speak or aren’t comfortable speaking, that’s ok – you can still weigh in. Most states have a process in place to submit statements or testimony in advance of the meeting, and/or even after the fact. The window varies by state, but best to assume you have to submit your statement before the meeting occurs, or within a very short time period afterward. Visit the DUR Board site to see if there are instructions, and if you don’t see the information on the site, call the administrative person and ask for help.
There may be limits on the length, format, file size, and file type for written submissions, so make sure you know what those limits are and stick to them! There may also be some kind of disclosure required about who you represent and what you stand to gain, so make sure you have an understanding of the disclosure requirements as well.
The same tips apply whether your remarks will be delivered live or in a written submission, so use the same tips in Section 3 and template in Section 4 to help you get started.
Other ways to amplify your voice
Regardless of whether you attend the meeting, speak at the meeting, and/or submit a statement, you can help bring attention and focus on just what’s at stake for you, your loved one, or your organization. Here are some ways to amplify your voice.
- Invite others to participate. Activate your network! Get as many other patient-focused organizations and individuals involved as you can. Establishing a steady drum beat of support for patients can make a huge difference.
- Outreach to state legislators. Remember, DUR Boards are run at the state level, so reaching out to your state legislators to let them know of your interest in the proceedings – whether it’s frustration about the process, disappointment regarding a DUR Board decision, or other feedback – is valuable. Call, email, send letters, or use whatever other means are available to contact these people. A draft template to get your letter to your legislator started is available in Section 6 of this toolkit.
- Write an op-ed, letter to the editor, or make other local media outreach. If you have relationships with local media, this is a great time to put them to use. Consider teaming up with other advocates on an op-ed or letter to the editor, for example. You may also want to give a local reporter a heads up you’re attending or speaking at a DUR Board meeting, and explain what’s at stake for you or your loved one. A template for a letter to the editor is in Section 5 of this toolkit. Keep the letter short – under 200 words – and get right to the point. Make sure to proofread it, and after you submit it, follow up with the publication to ensure they received it and have all the information needed to publish it.
Use social media. Whether you’re capturing your experience with photos, spreading awareness about an upcoming meeting, or drawing attention to some other aspect of the process, social media is a great tool to spread the word quickly. Make sure you tag the relevant people and/or organizations, and use the relevant hashtags (if there are any).