Excerpts from the Q&A

In April 2018, the RLS Foundation hosted the webinar “Legislative Update and Opportunities for Congressional Outreach,” presented by Dane Christiansen, MBA, vice president of the Health and Medicine Counsel of Washington. Mr. Christiansen has worked in government relations since 2004, and specializes in advancing medical research, treatment development, and patient access related policy goals for communities impacted by rare, chronic, and life-threatening medical conditions.

The following questions and answers are based on the webinar. Visit the online Member Portal or the Advocacy page of the Foundation's website to view the full presentation. To see a listing of all of the Foundation's upcoming webinars, visit www.rls.org.

Q: How can I monitor what legislation is being considered in Florida (and other states) and with the federal government?

A: That’s a very good question. If you are looking at what the federal government is doing, there is something called the Congressional Record that you can Google and sign up for that will tell you whenever a bill is introduced or whenever Congress is making a statement on something. But you might feel like that’s drinking from a firehose in terms of how much information you’re getting. There’s also a website called congress.gov which lists all of the bills that get introduced.

Every state is different, and every state has a different process. But the same way that we said that there is a house.gov and there is a senate.gov, where you can find your members of Congress, I know for a fact that that the Florida legislator has a floridasenate.gov and a floridahouse.gov. So, there is a Florida version of that on the local level, and you can similarly use that to identify your local members of Congress. I would encourage anybody to think about approaching their local members of Congress the same way that they would approach their national members of Congress. If the Florida legislator is considering approaching anything, rather than analyzing every bill that comes out, why not take time to write them a letter or send the local office or local state senator an email and say, “I just wanted you to know about RLS and how RLS patients use opioid-based mediations.” The same thing that you do for your members of Congress and your senators, would definitely similarly apply to your state senator and state representative no matter what state you’re in.

Q: What is the most effective form of communication with legislators? A mailed letter, a meeting, a phone call, or an email?

A: Some of you may recall if you did a letter in the past that HMCW helped with, we asked folks to mail those letters to us, and then we would hand-deliver them to Capitol Hill. The reason we asked you to send your letters to us is because you can’t send mail directly to Capitol Hill. Ever since there was the anthrax scare over a decade ago, mail goes to a processing facility in Ohio where it is radiated for a month. If you send your member of Congress a letter, it’s going to show up six weeks later and it’s going to be falling apart. So, if you send it to us, we can hand-deliver it directly to them. Of course, how things go nowadays, calling the office and also emailing the office is by far the easiest way to communicate with these folks. They don’t tend to hand out a lot of staff emails, but if you have that first meeting with the office in the spring or summer, you’re going to get a business card from that person. I would encourage you to occasionally email them to follow up. If you ever wanted to get information to them, or if you ever wanted to send them a letter, an email would be the easiest way to get a hold of them.

Q: To what extent can federal legislation override state laws, or is there a need to also be monitoring state efforts?

A: This is something that interestingly comes up more often these days. Federal law supersedes state law. The states can do as they see fit, but if the federal government passes something, it supersedes anything the state has done. The federal law is the primary law of the land.

Just to give an example, if the states said, “We’re not going to prescribe opioids to anyone,” and the federal government said, “You must prescribe to whomever the doctor thinks the right person to get it,” then the state would have no ability to not prescribe opioids or to advance that rule. The area where this becomes a little more murky is that the states do have latitude to do things wherever the federal government is not clear. So, if the government says, “This is our criteria for regulating prescribing,” there is nothing that would stop a state from adding additional rules on top of that, provided that they didn’t contravene or contradict what the federal government laid out. Anywhere the government is not specifically doing something, the state is allowed to take some form of action.

It is important to stay vigilant and to monitor what your states are doing, but right now a lot of the eyes are on the federal government in terms of what is going to take place with opioid coverage and access policy.

Q: How do you go about scheduling an appointment with a legislator? Do I organize it myself for the meeting and is it best to go as a group?

A: It’s better to go as a group. If you want to personally go into an office, that’s great. We definitely want the office to see somebody from the community. If you have an online support group that you work with, if there are others that the Foundation can connect you with that are local, it is very much in your interest to do this together. There might be a case, where they are four of you and you are from a particular area, like Philadelphia, but each of you may have a different congressperson even though you live near each other. Why don’t all four of you go and visit each those four offices together? That would be the ideal way to do it.

Q: Do you need to have specific proposed regulations to reference when you when you visit your legislator?

A: No, and this is why I would refer you back to the Statement of Principles document. The key thing would be to say, “Hey, we know that there are a lot of competing proposals right now. We know that Congress is taking a very broad look at this. There are many different ideas about how to move forward. We just want you to have facts from the RLS community. This is our Statement of Principles, and we ask you that anything that is moving through the legislative process aligns with these principles so it does not harm the RLS community.” That’s the value of having the North Star of the Statement of Principles document.

Q: Do you really think a carve-out for RLS in opioid legislation is possible?

A: Yes, but it’s very likely that the language will a little bit broader than mentioning a specific condition. For example, we already know that there is a potential carve out now for chronic pain, but they don’t list different conditions that might cause chronic pain. They just say “chronic pain.” Similarly, they will probably have a broader phrase, something like “neurological disorders,” that will capture RLS and also potentially other communities that use opioids in the same way – low-dose, chronic use to disrupt signals coming from within the brain itself. So, definitely yes on a carve out, but probably with the caveat that they might not mention the condition specifically, but instead an overall class of disorders that will capture our community.

Q: Is opioid treatment of RLS becoming more or less accepted by treatment providers?

A: I would say definitely more accepted. The scientific literature is pretty clear on this. One of the reasons that we talk about the importance of funding medical research is that we want a cure, we want better treatment options. But for right now, there is a growing awareness of what the proper treatment protocols are. Part of that is that these scientists read these medical journals and they get continuing education. There have been many journal publications recently and much research put out about how this is the proper care for RLS patients.

Just as an example, when we were doing meetings for Hilde, there was an office that said, “Is this true? Do they really give RLS patients methadone? I don’t know about this.” They said they were going to look at our information. The next day the American Academy of Neurology came to visit them, and Hilde asked, “Is it true that RLS patients take methadone? Is this the right way to do it?” And all of the doctors that were there with the American Academy of Neurology said, “Oh, absolutely. That is the clinical judgment, and that is the way it is currently done.”

So, while there is more scrutiny on opioid prescribing these days because of the tremendous amount of sensitivity to what is going on in the country, in terms of healthcare professionals, there is a growing awareness that this is a proper standard of care.

Q: Do you foresee that additional opioid lobbying in FY 2019 will be necessary to keep opioids as a treatment options for severe cases of RLS?

A: Yes, and I would go back to the “at the table or on the menu” phrase. If we aren’t advocating and we aren’t speaking out, I do believe that there is a real chance that Congress could do something that’s arbitrary or restrictive or harmful. They did already take a step and carve out chronic pain. They have not taken a similar step for RLS, but they need to. And we should have every expectation that they will if we make our voices heard, educate them, and tell them what is needed.