Crafting Your Statement
Whether you’re speaking during the meeting or submitting a written statement, your real-life experience as a patient or with a patient helps give the DUR Board members really critical context for the decisions they will be making. See Section 4 of this toolkit for a template to help get your statement started.
To help you make the most effective and compelling case possible, here are some DOs and DON’Ts to consider when you are crafting your statement.
- Introduce yourself and explain your connection to the disease state. This can be brief, but explain who you are and why you are there. This gives the Board members context and helps them understand how you got your insight.
- Share your personal experience. How would your life be enhanced or improved with a therapy that helps treat your condition? Or how has it already been improved or enhanced by that treatment? What are the consequences of NOT having access to the treatment? Include clinical benefits, but also consider including other factors, such days of work missed.
- Discuss the treatment itself. What experience do you have with the treatment in question? What are the other options available to treat the disease? How does this treatment differ? What personal data can you share to help the DUR Board understand the treatment’s value to the patient?
- Ask the board to support coverage for the treatment. State clearly and directly your request that the Board supports coverage for this treatment, without any unnecessary restrictions, such as “fail first,” step therapy, or invasive testing.
- Give context. Approximately how many people in the state could benefit from this therapy? Reach out to other organizations if you need data to come up with a reasonable estimate. Especially in cases of costly treatments, it is important for the DUR Board to understand that there is a limited number of patients in their state who would even be eligible for the treatment in question.
- Familiarize yourself with the Board members. Know your audience and speak to them in terms that they’ll understand and be familiar with.
- Use facts and information you can verify. Whenever possible, use independently verifiable facts rather than generalizations or guesses. Cite your sources. This includes your personal experience and observations!
- Make sure you understand any requirements for the statement. This includes time or page limits, format, file size, file type, and any other style requirements. Also make sure you know the deadline by which the statement must be submitted, and how to submit it.
- Assume the Board members know about your disease state. Assume the DUR Board members are not familiar with your specific disease state – they are not experts. What is the typical disease progression? How does the treatment impact that progression? What else is important to understand about the disease state to make an informed decision about this treatment?
- Be combative or disrespectful. No matter how compelling your case may be, if your tone is combative or disrespectful, it takes the focus away from your message.
- Make your statement overly emotional. While this is a deeply personal issue for you, being overly emotional in your remarks can backfire. The Board members are more likely to respond to an earnest request based on relevant information – including your personal experience – and other data rather than an emotional appeal devoid of any evidence that the treatment merits coverage.
Try to tackle every single argument in your statement. With any treatment, there are many points to argue – sometimes dozens! If you have a time or page limit for your statement, don’t try to tackle every single point. Choose the points that you are the most expert on, and focus on making a compelling case for those points. For example, if you are a parent of a child who was part of a clinical trial for the treatment being considered, you can discuss your first-hand experience with how effective it has been for your child, and how that tracks other clinical data.