dental - IPPF

Last month, the National Organization for Rare Disorders (NORD) hosted a webinar featuring IPPF Medical Advisory Council Member, Dr. Yoshiyuki Mochida, and IPPF Outreach Director, Becky Strong. The webinar, “Oral Health and Rare Disorders,” focused on dental conditions associated with rare disorders and the challenges that people face socially and financially. The discussion included approaches for obtaining insurance coverage for necessary dental procedures and perspectives from two patients and a dentist. Access the recording on YouTube here.

In February 2017, the IPPF joined the Friends of the National Institute of Dental and Craniofacial Research (FNIDCR) Patient Advocacy Council (PAC). This group is made up of patient advocacy organizations whose patient members’ conditions and diseases include an oral component and have a stake in research supported by the NIDCR. The group is supported by the American Association for Dental Research (AADR).

The AADR and FNIDCR will hold an Advocacy Day on Capitol Hill on Tuesday, February 27. Members and patient advocates will meet with members of Congress and Hill staff to advocate for dental, oral, and craniofacial research. They will emphasize how important investments in biomedical research and oral health programs are in impacting the people in their home states and beyond.

The IPPF had the pleasure of interviewing Lindsey Horan, AADR’s Assistant Director of Government Affairs about their 2018 Advocacy Day and important legislative issues.

IPPF: What is your goal for your advocacy day? What do you hope to achieve?
Lindsey Horan (LH): Our overarching goal for Advocacy Day is to educate on and raise awareness for dental, oral, and craniofacial research with members of Congress and congressional staff.

As oral research advocates and stakeholders, we know that oral health is integral to overall health, but it’s critical to stress that to the policymakers who are weighing competing priorities and are responsible for divvying up federal funds across government agencies and programs. The Hill visits our members conduct on Advocacy Day have the opportunity to demonstrate the far-reaching nature of oral health research and, most importantly, to share their personal stories—whether it is the story of a patient whose life has been impacted by an oral disease or condition, or a researcher whose work is positively shaping the trajectory of dental and oral care we provide in this country.

IPPF: Which legislative issues are of priority for the AADR/FNIDCR this year? Why are they important?
LH: Our legislative priorities for AADR and the Friends of NIDCR will be consistent with the priorities from 2017, and they largely relate to securing the highest possible federal funding for oral research and oral health programs. While this certainly includes the National Institutes of Health and the National Institute of Dental and Craniofacial Research (NIDCR), we also champion agencies whose work touches oral research in some capacity, such as the Centers for Disease Control and Prevention and its National Center for Health Statistics and the Agency for Healthcare Research and Quality.

Heavily focusing our legislative portfolio on appropriations is reflective of the fiscal and political environment in which we’re operating. Congress has to make difficult decisions about how to tackle a mounting federal debt and deficit, and we want to ensure that shortsighted cuts aren’t made in the name of savings. In the absence of our community speaking out—loudly—about these federal agencies and programs, lawmakers will see a win-win scenario: being able to cut funding with little to no pushback.

IPPF: What can those who are unable to attend Advocacy Day in DC do to advocate locally?
LH: There is so much that can be done locally—even from home—to champion oral research throughout the year.

First, it’s important to remember that members of Congress are not in Washington, DC, year round. They regularly return home to meet with their constituents, and these visits are great opportunities for people to voice their priorities or concerns. Sign up for your elected officials’ email listservs to learn about upcoming town halls or other events where you might have an opportunity to speak with them. At the end of the day, constituents are the people members of Congress want to hear from most!

Additionally, don’t underestimate the power of social media. Virtually all Senators and Representatives are active on Twitter, Facebook, and other social media platforms—and they pay attention to them. While seemingly inconsequential, research has shown that it doesn’t take many Tweets on a given topic for staff to pay attention, especially if the Tweets come from constituents (and constituents should identify themselves as such in their Tweets).

IPPF: Do you have advocacy alerts or ways to stay updated throughout the year on important legislative issues?
LH: Absolutely. We want to make sure our community knows how developments at the federal level may impact our field and the research enterprise more broadly.

The first resource I would recommend is our Government Affairs & Science Policy Blog (http://ga.dentalresearchblog.org), which is regularly updated with advocacy and policy news. And to make it easy for readers, there is an option to subscribe to the blog, so new posts will come directly to your email. We also post information to our Twitter account (@DentalResearch). These are great places to learn about any new action alerts or opportunities for engagement.

There are also a number of opportunities available through AADR membership (http://www.iadr.org/AADR/Join-Renew/Join-Us) for those who want to further engage, such as the potential opportunity to serve on committees like our Government Affairs Committee and joining us on Capitol Hill for Advocacy Day.

IPPF: Is there anything else you’d like to share?
LH: I know people often shy away from advocacy for a variety of reasons—they worry about bringing politics into the workplace, they are put off by the term, or they don’t see the point. To this I would say:

As an American citizen, you have a right to petition your government as outlined in the Constitution. It’s correct that many employers do have rules related to advocacy, but they do not prohibit you as an individual citizen from being able to advocate. To clarify what is and is not allowed, talk to the government or public affairs staff at your organization or institution.
For those who don’t quite understand or are put off by the term “advocacy,” think of it as education. When you reach out to members of Congress, you are sharing your story, explaining your work, or demonstrating how a program is making a difference in your community. Members of Congress and congressional staff are grappling with information overload. Meeting with them provides an opportunity to share what you know so that they might better understand the issue and how it fits into their legislative priorities.
Finally, advocacy does make a difference. While a phone call, a Tweet, or an email seem too small to be significant, they add up—and we have seen this demonstrated time and again. Just recently, a provision in the House’s first version of the tax bill calling to tax graduate students’ tuition waivers as income received so much pushback from the community that it was removed in the final legislation. Speaking up and speaking out matter!

A huge thank you to Lindsey Horan for taking the time to answer our questions!

IPPF Awareness Ambassador Coordinator, Bryon Scott, will attend Advocacy Day on Capitol Hill this year. We look forward to updating you on his experience and the outcome of his advocacy.

As a Patient Educator for the IPPF, I have the fantastic opportunity to travel around the country to different dental schools and give lectures on my journey with pemphigus vulgaris (PV). It’s an empowering experience to have a hundred people listen to my story at once. But it’s also important that the audience relates to me. I’m a person, not just a patient. I have to be open and honest about my journey. The audience must relate to the pain, suffering, sense of humor, and all the ups and downs of having PV in order to form a powerful memory. But how does this happen? How do I find unique ways to raise awareness not only in the classroom, but also on the trip to and from the university?

Appearance matters – We’ve all heard our mothers tell us to put on clean underwear before leaving the house, right? This is no different. Looking tidy helps provide credibility. It also helps you to look engaging. Plus, the more you enjoy life, the more others will want to be around you.
Don’t forget the Orange Sunglasses – The orange #healourskin sunglasses are a huge attention grabber. I wear mine EVERYWHERE! I keep them in the car, hang them from my collar, and wear them on top of my head. I wear them on vacation and around town. Many people have stopped me and asked, “What’s with the orange glasses?” It’s important to have a brief, but open answer to this question. Mine is, “You know the pink ribbons for breast cancer? Well, I have a rare autoimmune disease, and these are part of the campaign to raise awareness.” People usually follow up with, “What’s it called?” The conversation takes off from there. I also travel with a couple of extra pairs to give to people I meet along the way, and this leads to others inquiring about the glasses and PV.
HI! – It’s the single, most important thing an advocate can say. It’s the door that opens communication with another person, group, or audience. It’s not intimidating for the listener, and most everybody smiles when they say it. Don’t forget to make eye contact, too.
Be engaging – It’s important to not only talk, but also to listen. I don’t usually start off by talking about PV. Rather, I talk about the long line, the beautiful weather, or even a great piece of jewelry that somebody is wearing. Be aware of how people respond to you. While you may want to tell your life story, it can be overwhelming for some. Listen to their questions, and answer them honestly without over-sharing.
Be Brave – This tactic works the same in the grocery store or at the park as it does on an airplane or at a university. Tell somebody about the glasses and ask if you can take their picture to use as part of the Awareness Campaign. When I fly, I usually ask the flight attendants to take a picture with the glasses. I explain that I’m traveling to lecture at a university and the glasses are part of the Awareness Campaign. What’s the worst that will happen? They’ll say no. In that case, I’ll smile, thank them kindly, and take my seat. I’ll probably never see them again anyway. But if they say yes, it opens a whole dialog. Sometimes, they even ask the pilots if I can take their picture once we’ve landed. I ask the same thing of the professors who invite me into their class. The Profs know I’m part of the Awareness Campaign and are usually happy to oblige. Once one person does it, others inquire about what’s going on. Each inquiry is an opportunity to spread awareness.
Selfie-sticks – Ok, so maybe approaching others isn’t your thing. But I bet you’ve taken a selfie. Take your picture wearing the orange sunglasses while reading The Quarterly, petting the dog, holding a new baby, or with your best friend. Just don’t forget to post the pic with #healourskin!

There are opportunities to spread awareness everywhere. It just takes a moment to recognize and act on them.

There are also hundreds of other ways to be an advocate that I haven’t even thought of yet. That’s where you come in. Take my suggestions and run. I hope I’ve given you ideas of what you can do to help the IPPF spread the word. Put your unique spin on the Awareness Campaign. Please don’t forget to share your pictures – tag the IPPF and use the hash tag #healourskin. I can’t wait to see what you come up with!

When you experience disease activity in your mouth it can be quite uncomfortable. Patients may experience blisters anywhere inside the oral area: inside of cheeks, upper and underside of tongue, roof of mouth, and as far back as where the uvula is. The gums can peel as well.

Swallowing can be difficult. If this occurs for you, having anything soft is advised. For example, smoothies, yogurt, mashed potatoes, cream of wheat, etc. Avoiding citrus fruits is recommended, as that can agitate your oral lesions.

If your gums are peeling, ask your dermatologist if he/she can prescribe to you a topical corticosteroid. A ‘Magic Mouthwash’ can also be prescribed.

Try not to use alcohol-based mouthwashes as it can be uncomfortable to your lesions. Gentle toothpastes such as Sensodyne or Toms of Main can still be too harsh. If those products are irritating your lesions try going the old-fashioned route of using a paste of baking soda and water.

The use of straws is not recommended if you have flare-ups in the mouth as this can irritate them.

The IPPF suggests that you keep a food journal, so that if a flare-up occurs you can look at the list of foods you have consumed prior to the flare-up and determine which food or spice could be the culprit.

Keep your gums as healthy as possible by using a waterpik on a low speed, and use a very soft toothbrush. Regular dental checkups should be continued as normal, and if you’re going to have any dental work done advise your dermatologist. Depending on the level of activity you have and the medications you are taking, your dosage may be increased a few days prior and a few days after the procedure. Advise your dentist of this, as well.

Remember, when you need us we are in your corner!

Mei Ling Moore – Peer Health Coach

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