Program will offer no-cost testing to pemphigus and pemphigoid patients in Southern California
Quest Diagnostics, through the Quest for Health Equity (Q4HE) initiative, has teamed up with Western University of Health Sciences (WesternU) to offer no-cost diagnostic testing services to support Biopsies Save Lives. This multidisciplinary program will offer no-cost testing to patients in Southern California who are low-income, uninsured, and underinsured and who have rare erosive and blistering diseases, to enable more timely diagnosis of these conditions.
Pemphigus and pemphigoid patients must often see multiple health care providers before seeing a specialist and receiving a diagnosis. People of color are more likely to be misdiagnosed or experience delays in diagnosis because differences in pigmentation can affect the appearance of dermatologic diseases.
“The time it takes to get a correct diagnosis can be critical for people who are working-class or living in poverty. Compounding this, people of color are more likely to have delays in diagnosis because pathologic conditions can manifest differently on dark skin and mucosa, and health care professionals are trained mostly to diagnose them on white patients,” said WesternU Health Oral Pathology Laboratory Director Mark Mintline, DDS. “We are grateful for the support from Quest and its Quest for Health Equity initiative, as it will help eliminate a barrier to diagnosis and enable us to expedite the treatment of patients suffering from these diseases.”
The collaboration between Q4HE and WesternU, with additional support from the International Pemphigus and Pemphigoid Foundation (IPPF) and the University of California Irvine (UCI) Health Dermatology Immunobullous Clinic, aims to accelerate diagnosis times and help reduce the number of doctors needed to get a diagnosis. Local health care providers will be able to refer patients for intraoral biopsies and serum testing without worrying about the cost of laboratory tests thanks to no-cost diagnostic testing provided through the Q4HE initiative.
“We believe good health care should be in reach for everyone, and we are proud to support this important program to give access to lab testing that will help provide care to underserved patients in Southern California suffering from these rare autoimmune diseases,” said Michael Floyd, Senior Director and Leader, Q4HE. “We are hopeful that we can help break down some of the barriers to health care access that these patients are experiencing by making diagnostic testing more accessible.”
Biopsies Save Lives also connects patients to the IPPF, which offers peer coaching, patient education webinars, support groups, publications, and a network of doctors who are experienced in treating pemphigus and pemphigoid patients. This includes expert dermatologists from UCI Health Dermatology, which specializes in the diagnosis, treatment, and management of acquired autoimmune blistering diseases. WesternU also provides medical interpreters to facilitate communication between patients, doctors, and staff to ensure high-quality care. Learn more about the Biopsies Save Lives program here.
The IPPF has published a white paper focusing on the urgent needs of pemphigus patients.
March 16, 2021 The IPPF is excited to announce the publication of a white paper, “Elevating Awareness of the Pressing Needs of the Pemphigus Community.” This paper is in response to the results of a Patient Forum held as part of our Virtual Patient Education Conference last October. The Patient Forum was sponsored by Principia Biopharma, a Sanofi Company, and brought together pemphigus patients, caregivers, patient influencers, healthcare professionals, thought leaders, and advocates to discuss the most important disease-related topics affecting the pemphigus community. The white paper discusses the consensus reached by the speakers and panelists related to the most urgent needs of pemphigus patients. It also includes decisive calls to action.
During the Patient Forum, panelists discussed their experiences with delayed diagnoses and the physical, mental, and financial impact of pemphigus. The consequences of a delayed diagnosis to a patient’s health and well-being can be significant, therefore the speed and accuracy of diagnosis must be improved. Speakers discussed the high dosage use of corticosteroids and limited treatment options for pemphigus, which makes it clear that new treatment options are needed. In response to the need for new treatments, scientists in academia and the biopharmaceutical industry are currently working to refine and expand treatment options that are more tolerable and targeted.
Based on the urgent needs discussed during the Patient Forum, the panelists and speakers agreed on the following calls to action:
Elevate awareness of pemphigus and the patient journey and perspective among key audiences, including clinicians, thought leaders, government agencies, and lawmakers, among others.
Increase awareness of ongoing clinical trials of promising investigational candidates to improve participation in trials, with the goal of developing more effective and well tolerated treatments for pemphigus.
Our seventh story in the Patient Journey Series comes from Minatallah, a dental student at Virginia Commonwealth University. She had this to say after attending an IPPF Patient Educator lecture:
When applying to dental school, my initial feelings about dentistry centered on a yearning to help others. Our prerequisite courses required us to be involved within the community and provide for those in need of dental care. This helped open our eyes about what dentistry entails. However, I’ve learned that I can never say, “I’ve seen everything,” no matter how much I see.
Upon starting dental school at Virginia Commonwealth University (VCU), we were welcomed with an abundance of plastic teeth. We drilled into mannequins some mornings, carved teeth out of wax some afternoons, and figured out ways to learn everything we needed to know about teeth and the human body. Our initial feelings about dentistry were diluted, and most of the information we learned was a memorization race for an upcoming test.
My first year of dental school finished up this year with a summer pathology class. My classmates and I were counting down the days until the end of the year. It felt like the life had been taken out of the field as we had gotten so comfortable with our mannequins and PowerPoints—until Becky Strong stood before our class.
As Becky told her story about her battle with pemphigus vulgaris (PV), students became more alert than their normal, relaxed body language during lectures. I heard a few gasps and saw concerned glances being exchanged between students. It was like watching a thriller movie, but this was so real. It was clear we weren’t expecting to come in contact with anyone that described symptoms from our slides this early on. Moreover, we were under the impression that dentists don’t actually play a role in these stories, we just refer them to a physician, right? Wrong.
As she told her story about the numerous times she went to the dentist, we kept hoping that they decided to take a biopsy of the unusual oral findings—much like a thriller movie audience chanting for a character not to go into a room where the killer is. We were on edge, hoping for a relieving segment of the story. However, when she mentioned that her disease had gotten so severe that her bottom lip came off on her spoon, we sunk in our seats.
Reading through my notes that night felt different. Bullet points floated from my page and formed constant flashbacks to Becky’s PV story, and for the first time in a while, I had the same feelings I did before starting dental school. In the past, I’ve paid extra attention to information about the autoimmune disease lupus because my mother was the face of it. I found myself feeling the same way about PV because now that had a face too. I value the importance of attaching emotion to diseases by reading about people who suffered from them with the hope that in the future it would trigger my memory as a dentist and lead me to take immediate action during my practice. As our class took our final exam, I can guarantee every student that heard Becky’s presentation read the pemphigus questions and knew the correct answers.
Every day, our patient services team hears stories from our community about what it’s like to live with pemphigus and pemphigoid. From getting diagnosed to finding the right doctor to thriving post-treatment, many patients express similar frustrations. And yet, there’s a common hope that runs through many of the stories we hear at the IPPF.
Each week through August and September, we’re featuring a story that highlights a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize they are not alone.
The Sy Syms Foundation has awarded a $100,000 grant to the International Pemphigus & Pemphigoid Foundation (IPPF) in support of the IPPF’s Biopsies Save Lives Campaign. This will be the seventh consecutive year the Sy Syms Foundation has supported the Awareness Program.
Since developing the Awareness Campaign in 2013, the IPPF has reached thousands of dental professionals and students. Due to its continued growth and impact, the Awareness Campaign transitioned into a permanent Awareness Program in 2017. This year the IPPF Awareness Program launched a media and marketing campaign that stresses the importance of a biopsy when diagnosing pemphigus and pemphigoid (P/P).
The new campaign centers on a single take-away for dental professionals: “Biopsies Save Lives— 4 questions to ask your patient to determine if a P/P biopsy should be considered.” A new information card was created to help dental professionals both recognize the symptoms of P/P and emphasize the importance of a biopsy. The campaign’s focus includes spreading awareness by exhibiting at dental conferences, emailing dentists throughout the country, reaching out to local dental societies, presenting at dental schools, increasing visitors to the website, and training Awareness Ambassadors to reach local dentists.
“We are incredibly grateful for the continued support of the Sy Syms Foundation,” said Kate Frantz, IPPF Awareness Program Director. “This is a pivotal year for the Awareness Program. We’ve launched our Biopsies Save Lives campaign, which includes new resources for dentists, an increased focus on marketing and communications, and enhanced methods for getting our messages out faster to even more dentists. We cannot thank the Sy Syms Foundation enough for their support in our efforts to accelerate pemphigus and pemphigoid diagnosis times.”
The Sy Syms Foundation was established in 1985 by retail entrepreneur and humanitarian, Sy Syms. His mission was to support education, and through his generosity the non-profit Foundation has affected the continued growth of many institutions of higher learning, medical research, and civic and cultural bodies. For more information on the Sy Syms Foundation, visit sysymsfoundation.org or call (201) 849-4417.
The Sy Syms Foundation has awarded a $75,000 grant to the International Pemphigus & Pemphigoid Foundation (IPPF) in support of the IPPF’s Early Diagnosis Awareness Program. This will be the sixth consecutive year the Sy Syms Foundation has supported the Program.
Since developing the Awareness Campaign in 2013, the IPPF has reached thousands of dental professionals and students. Due to its continued growth and impact, the Awareness Campaign transitioned into a permanent Awareness Program in 2017. A particularly successful aspect of the Awareness Program is the innovative Patient Educator Program, which sends pemphigus and pemphigoid (P/P) patients to dental schools across the US to share their stories of delayed diagnosis. These emotional stories compliment traditional lectures, encouraging students to remember P/P should they encounter symptoms in future practice. Since March 2014, IPPF Patient Educators have provided over 60 presentations at 20 different dental schools, reaching more than 6,500 students and faculty.
“The Sy Syms Foundation’s continued support makes our Awareness Program possible,” said Kate Frantz, IPPF Awareness Program Director. “Because of their generous funding, we have been able to increase our Program’s impact, reaching thousands of dentists, dental hygienists, faculty, and students who now have pemphigus and pemphigoid on their radar! We are hopeful that patients will be diagnosed sooner and we have the Sy Syms Foundation to thank for this.”
The Sy Syms Foundation was established in 1985 by retail entrepreneur and humanitarian, Sy Syms. His mission was to support education, and through his generosity the non-profit Foundation has affected the continued growth of many institutions of higher learning, medical research, and civic and cultural bodies. For more information on the Sy Syms Foundation, visit sysymsfoundation.org or call (201) 849-4417.
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.
Rebecca Oling and Dr. Cataldo Leone
It wasn’t easy getting to this meeting. After a four-hour train ride, I decided to walk to my hotel, nearly two miles away. It was rush hour, days after a major snowstorm. Boston was cold, and the streets were crowded with traffic barely visible beyond mounds of blackened snow. The walk was neither refreshing nor picturesque; it ended with a gauntlet of addicts outside the methadone clinic near my hotel. No sooner did I arrive in my hotel room when the phone rang. He was early, and I was spent. Everyone has a story.
There is a saying that one should never be too busy to meet someone new. Most of us are so harried or exhausted that we forget to hold a door, to let someone hop a grocery line, to stop for someone who seems lost. Or, these days, to even look up. Last month, during that post-snow Boston trip, I took a chance to set up a meeting with Cataldo Leone, DMD, the Dean for Academic Affairs and Professor of Periodontology and Molecular and Cell Biology at Boston University (BU).
It was immediately apparent that Dr. Leone was the type of person who takes the time to be kind. He was thoughtful and could not have been more accommodating, offering to pick me up directly at my hotel. From there, we headed to a favorite restaurant where he had much-needed business to conduct: confirming arrangements for his mother Carmella’s birthday brunch the following Sunday.
Students do show up—sometimes out of hunger and looking for free pizza—often with an intense curiosity at the opportunity to meet someone with a rare disease they might someday see in practice.
Dr. Leone was a catch of an interview, not only because he is such a busy person, but also because he has taken some of what the IPPF has provided in patient educator presentations and molded it to his needs at BU. As part of the IPPF Awareness Program, patient educators visit dental schools and talk to students in oral pathology courses about their diagnosis journeys. These presentations are paired with clinical disease information. The aim is to ensure that students recall what they have learned and understand the importance of early diagnosis from both a clinical and emotional perspective. But that isn’t quite how the story went at BU for the IPPF.
The IPPF has presented at BU twice in as many years. We have long asked for these experiences to be part of the curriculum, as a kind of requirement. Dr. Leone has felt that making it a requirement risks students coming with ulterior motives—namely, to get the credit. This past year, Dr. Leone acted on a visceral understanding that offering these “lunchtime learning opportunities” was memorable and effective enough that it was worth seeking out patients with other rare ailments. Students do show up—sometimes out of hunger and looking for free pizza—often with an intense curiosity at the opportunity to meet someone with a rare disease they might someday see in practice.
With this approach, Dr. Leone has created a kind of community of practice. It was not what we expected when the IPPF began the Patient Educator Program, but that’s the beauty of what Boston has done. Rather than turning away from the opportunity altogether, Dr. Leone worked closely with Kate Frantz, IPPF Awareness Program Manager, to ensure that BU’s participation aligned with the program’s guidelines. The IPPF’s Awareness Program can typically pay for the speakers’ travel and expenses if the school can meet an attendance requirement of 100 people. Because BU so valued the program, they offered to sponsor the IPPF’s visit. With approximately 80 students routinely attending the lunchtime presentations, it is clear from comments that students are actively learning lessons they will remember for years to come.
“We know each school is unique,” Frantz said. “Ultimately, what is most important is raising awareness of pemphigus and pemphigoid. Boston University is a terrific example of a school with a unique vision that is willing to work with us to make that vision a reality.”
About 10 to 15 percent of the BU School of Dental Medicine student body chooses this enrichment without enticements, according to Dr. Leone, further justifying the investment. Students take the time to show up. His eyes gleam as he admits he’d like to do more actual assessment of these programs. He’s also quick to point out that assessment is a tool to measure impact and that you can already feel that the “ball is rolling.” The patient educator approach is impactful precisely because it’s personal “when you interact with people. As people to people it is always better than one dimensional.”
Part of the multidimensional success of the BU School of Dental Medicine enrichment opportunities must be credited to Dr. Yoshiyuki Mochida. When he began to work at BU in 2009, Dr. Mochida’s interests were in rare diseases affecting craniofacial tissues. Mostly, he had been working on Dentinogenesis Imperfecta (a rare, inherited disorder in which the teeth are discolored, often translucent, and break easily). He was contacted by the boyfriend of a woman with the disease who must have seen his name associated with the research on the subject. The woman’s daughter also suffered with the same disease. Dr. Mochida helped by setting them up as patients in BU’s clinic. In 2015, a second family contacted him. This time, it was to get help advocating with an insurance company (Dentinogenesis Imperfecta is not covered in Massachusetts because it is considered a congenital dental issue. It is only covered in one state—New York). The problems patients faced became Dr. Mochida’s problems, and this led him from research to action. In that same year, the IPPF sent Becky Strong to BU as a patient educator, and the pair met.
Awareness is situational. It is about context. It is about the scene and the story.
“It struck me that this could be a series,” Dr. Mochida said. It could only benefit dental students to understand these complex awareness and advocacy issues as they embark on their professional careers. Perhaps P/P, like Dentinogenesis Imperfecta, are inherited, impacting the patient’s concerns about having a child. Maybe pemphigus and pemphigoid are not daily encounters in clinical practice, but clinicians will see these or similar diseases—with all their symptoms and accompanying complications. Dr. Mochida felt it was imperative to make this clear to his students. “I was already sparked on the rare disease path and the patient needs,” he explained, “but students might not be thinking about all those factors that affect a patient’s ultimate success.”
Dr. Mochida approached Dr. Leone with the idea about an enrichment series. He then contacted the National Organization for Rare Disorders (NORD) to find more patient speakers. NORD referred Dr. Mochida to the IPPF. Though clinicians have often used actual patients as models of one issue or another, the idea of partnering with patients as educators—true experts in their own experiences and diagnostic pathways—is an exciting and new development. According to Mary Dunkle, Vice President for Educational Initiatives at NORD, the IPPF’s program is an “excellent service” that is “absolutely innovative.”
In fact, NORD began to see the value of such a service three years ago when it sent a contingent of patients to the annual American Medical Student Association conference. Dunkle was hooked. “I was struck by the number of students who told us there, or who wrote to me afterwards, that they would ‘remember this for the rest of my life.’” It’s an effective way to train the whole clinician: remind them that patients are people, each with a unique disease story.
For the IPPF, partners like NORD can help to get patient stories across to a wider audience, while also paving the way for other patients to share their experiences. Though NORD’s program is newer than the IPPF’s, the “demand is there,” Dunkle affirms. “We often get requests for various community events—not necessarily in the classroom.” This is an important distinction from the IPPF’s focus on curricular ties. However it happens, the stories “go with these students the rest of their lives.”
There are myriad ways of communicating patient stories, especially when shared opportunities make sense for an organization and its patients. As a patient and former board director, what matters most to me is that there are passionate people who aren’t afraid to tell their stories with a clear goal in mind, even if it doesn’t begin the way we envisioned. Awareness is situational. It is about context. It is about the scene and the story. And while we can never be “too busy to meet someone new,” we should also never be so myopic as to ignore the opportunities that life presents when our stories come together. What is your story? How might being open to it, learning to tell it, and understanding how it intersects with others change the status quo?
Patient Educator Hannah Heinzig at UMKC
The end of the year is a great time to look back at our programs and assess the progress we’ve made toward reducing diagnostic delays of pemphigus and pemphigoid. Our patient educators continued to reach more and more dental students at schools across the country.
This infographic illustrates the work our IPPF patient educators have done since 2014:
Hello all! Working for the IPPF has been something I have been interested in doing for about five years, since my pemphigus vulgaris finally got under control. I knew from my first contact with the Foundation that this is an amazing group of people. I am proud of the way our community pulls together and rallies for each other; it’s amazing how we sincerely care about one another.
The position of Outreach Manager is new to me, as well as to the IPPF. This position was created to be a link between Patient Support and the Awareness Campaign. While these programs have different focuses, they are united by the common goals of education, early diagnosis, and promoting the best treatments for P/P patients.
As a result, half of my time will be spent supporting patients. If anybody touched by our diseases has a question, comment, or concern, I am their first point of contact. It is my responsibility to provide all who contact me with clear, precise information and resources. I will also be creating and revising material for print and online, as well as helping to facilitate local support groups, meetings, and patient education calls.
The other half of my job will be spent raising awareness of P/P in the medical community with the goal of reducing patient suffering and diagnostic delays. Currently, the Awareness Campaign focuses on dental outreach. I will be coordinating patient presentations at universities and looking to recruit, train, and supervise other patient speakers and volunteers. I will also take over coordinating exhibit booths at conferences for dentists and medical professionals. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.” It sounds like a lot of work — and it is — but I am up for the challenge! Because of my status as a PV patient and my past work in the healthcare field, I feel that I am qualified to work with both communities simultaneously. I promise to work tirelessly to promote quality of life for the members of our community, as well as in the dental, medical, and nursing communities.
I know I would not be where I am today if it weren’t for the IPPF community. So many of you provided me with support, compassion, and encouragement during one of the lowest periods of my life. I was young when I was diagnosed. I was scared and felt isolated. But my IPPF friends changed all of that. I want to do that for others. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.
Please know you can contact me by email at firstname.lastname@example.org or by phone at (916) 992-1298 x105. I will work to get you the answers you need. I am here for you.
The biggest problem with dental implants in pemphigus and pemphigoid (P/P) patients is that P/P are often treated with corticosteroids or other immune suppressants for prolonged periods of time. This makes these patient poor candidates for dental implants because the implants will usually not integrate into the bone.
Failures can also occur if the patient already has implants before they have P/P. They may also be more susceptible to periodontal disease because of their altered immune responses and altered bone metabolism.
It is at least theoretically possible that steroids could facilitate the loss of some or all of the teeth, especially if the patient has severe P/P requiring a lot of treatment. However, I doubt insurance companies would be willing to reimburse for implants because of the extremely guarded prognosis. They might consider reimbursing for conventional dentures, though.
We consider prolonged steroid therapy as a contraindication for dental implants. There are a couple older case reports (1990, 1991) describing successful implant placement in these patients, but the papers are quite old and probably did not really confirm success.
A recent 2013 case report* described success in a patient who had only oral pemphigus vulgaris (PV) and who had steroid therapy for a relatively short time. In this report the patient had two implants placed under a full denture, and the case was followed for 32 months. The authors described very gentle but conventional implant placement and denture management but nothing out of the ordinary.
If an oral PV patient is interested in dental implants, it might be of value to have their doctor review this paper. However, I am not convinced that this small case report indicates that implant placement is highly predictable and cost effective in PV patients, and we have not elected to place implants in anyone on long-term steroid therapy regardless of the disease or disorder being treated.
*Altin, N., Ergun, S., Katz, J., Sancakli, E., Koray, M. and Tanyeri, H. (2013), Implant-Supported Oral Rehabilitation of a Patient with Pemphigus Vulgaris: A Clinical Report. Journal of Prosthodontics, 22: 581–586. doi: 10.1111/jopr.12050
Monday, February 29, 2016, was “Leap Day,” the rarest day of the year. But for the rare disease community, it was much, much more: it was International Rare Disease Day.
The IPPF is proud to join with others in the community to raise awareness of rare diseases. Our board, staff, advisors, and volunteers are motivated every day by a passion to support awareness, advocacy and the development of treatments that can have a meaningful impact for P/P and all rare diseases.
Millions of people took this year’s motto, “The Patient Voice,” to heart and spoke out to the general public and elected officials in more than 80 countries. In the United States, all 50 states passed resolutions recognizing the day as Rare Disease Day. Here in California, Noelle Madsen and I were joined by dozens of rare diseases advocates at the CA State Capitol. Noelle and I were also guests on the State Assembly floor as California Senate Concurrent Resolution 108, Rare Disease Day was unanimously passed (and later we were in the gallery as the State Senate unanimously passed the CSR).
Meanwhile, in the Nation’s Capitol, Marc Yale and fellow P/P patients spoke to their elected officials on the importance of funding rare disease research and legislation. On Wednesday, March 2, our patients joined more than two hundred advocates educating aides, senators, and congress members on the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures & Treatments) that could double the number of treatments available to rare disease patients. The OPEN ACT has the potential to be a game changer for pemphigus and pemphigoid patients and the entire rare disease community.
That evening, NORD and the IPPF educated more than 15,000 people on rare diseases and P/P in 120 seconds. Just before tip-off at the Sacramento Kings/Oklahoma City Thunder NBA game here in Sacramento, I was interviewed by Kings’ emcee Scott Freshour on Rare Disease Day and pemphigus and pemphigoid shown over the court’s jumbotron to the entire stadium. Immediately after that, this video created by our own Patrick Dunn was shown (and played again at halftime).
I encourage everyone to be a self-advocate for P/P and rare diseases in general. A little effort by each of us can have a tremendous impact on patient quality of life. For more information on advocating, contact Marc Yale at email@example.com.
At the California State Capitol. (l-r) Kristen Angell, NORD; Noelle Madsen, IPPF Patient Services Manager; Greg Benton, The Myelin Project; Monique Rivera, IPPF Admin; Debbie Fuentes, IPPF Intern; Will Zrnchik IPPF Executive Director.
At the National Institutes of Health in Washington, D.C. Kate Frantz, IPPF Awareness Program Manager, displays the Awareness Campaign poster to raise awareness for pemphigus and pemphigoid.
At the Sacramento Kings vs Oklahoma City Thunder game in Sacramento, CA. Debbie and Niko, IPPF Student Interns from Cristo Rey High School, help raise awareness for P/P and other rare diseases.
It has been a busy few months for the Awareness Campaign. With outreach to dental students in full swing, it was time to expand our reach to dental practitioners. And where do we find large groups of dentists, dental hygienists, specialists, and assistants? Dental conferences! We rent a booth on the exhibitor floor and talk with dental practitioners as they walk through the exhibit hall. So far, we’ve reached nearly 2,000 dental professionals.
In November, we attended the American Dental Association’s Annual Meeting in Washington, DC. December found us at the Greater New York Dental Meeting in New York City, and in January we kicked off the new year at the Yankee Dental Congress in Boston.
Our current plans call for us to have a booth in Atlanta at the Hinman Dental Meeting in March, followed in April by the Oklahoma Dental Association Meeting in Oklahoma City.
Many of the larger meetings have 20,000+ people attending. There are rows and rows of exhibits and the halls often seem endless! We usually meet with around 600 people per conference, which is pretty good for a small non-profit. We don’t have large hanging signs, bright lights, or fancy electronic displays. But we do have many free resources and great educational materials!
These conferences are usually three or four days long, and we spend eight or more hours each day at the booth. We couldn’t do what we do without the great help of local volunteers, many of whom are pemphigus or pemphigoid (P/P) patients or friends and family of patients. Patients are encouraged to share their diagnosis stories and reinforce the unique role dental professionals play in getting patients diagnosed sooner.
How do we encourage dentists to stop by our booth? We stand near our booth table, smile, and ask, “Have you heard of pemphigus?” or “Is pemphigoid on your radar?” It is that simple! Many people look at us like, “Pemphi-WHAT?” almost as if we are speaking a foreign language. Once we hand them Awareness Postcards, brochures on the campaign with scientific information, and our Quarterly newsletters and they see the names in print, some recognize them because they remember them from school, saw them in a textbook, or have previously diagnosed a patient. For others, it’s the first time they’ve ever heard or seen the words “pemphigus” and “pemphigoid.” It is truly rewarding to be the person who educates someone about these rare diseases.
“Pemphi-WHAT?” In addition to sharing stories and passing out materials, we also ask dental professionals to take a short survey describing their experience and confidence in diagnosing P/P. We asked, “On a scale from 1 to 5, how confident are you in your ability to recognize the clinical presentation of pemphigus and pemphigoid?” About a third (27/85) of dentists and half of hygienists (14/28) reported low levels of confidence in their ability to recognize P/P. We also asked 141 people if they had heard of the IPPF before they stopped by our exhibitor booth; 81% had not.*
These figures support the need for the Awareness Campaign and increased outreach to the dental community. Since such a large percentage of dental professionals had never heard of the IPPF, we also recognized the need to spread awareness of our Foundation in general. We encourage dental practitioners with P/P patients to inform their patients about the IPPF and all of our patient support services.
These conferences are an excellent way for us to meet dental professionals and spread awareness of P/P and the IPPF. Because of the connections we’ve made at these gatherings, we’ve received requests for Continuing Education presentations and dental student lectures; learned about some great media opportunities; had an article written about us; and have secured some awesome product donations for our Annual Conference goodie bags!
Our goal is that one day dental practitioners will pass by our booth and say, “Yes, I already know about your Foundation.” Until then, we will continue setting up our booth and repeating over and over, as many times as it takes, “Have you heard of pemphigus and pemphigoid?”
*2015 data collected by the IPPF at two dental conferences
February 29 is the rarest day on the calendar. This year, I invite you to do something meaningful to mark the day.
On the last day of February, millions of people from around the world will observe Rare Disease Day® by organizing events and activities that raise awareness for patients, families, and caregivers affected by rare diseases.
Because you, and we as your advocates, are directly connected to a rare disease, this is a perfect opportunity for us to raise awareness for pemphigus and pemphigoid which affect roughy 1 in 1,000,000 people. Pemphigus and pemphigoid are just two of the 7,000 known rare diseases that in total affect 30 million – or 1 in 10 – Americans, making them not so rare after all.
We know first-hand the difficulties families have getting access to life-saving, life-improving medical treatment or other services due to insurance obstacles or to a lack of knowledge about pemphigus and pemphigoid by the medical community. This challenge is common to all rare diseases.
What is Rare Disease Day®?
Rare Disease Day® began in Europe in 2008, and is now in its eighth year in the U.S. under the sponsorship of NORD. In 2015, all five continents and 80+ countries participated. Through social media, there has been even greater awareness and participation.
This year’s theme “Patient Voice” recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caregivers. The 2016 slogan “Join us in making the voice of rare diseases heard” appeals to a broader audience who may not be living with or directly affected by a rare disease, and to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.
Some rare diseases (such as most types of cancer and Lou Gehrig’s disease, or ALS) are well known to the public. Many others, like pemphigus and pemphigoid, are not. I am sure many of you can empathize with millions of others who have a disease most people have never heard of, for which there is treatment, or one even being studied in clinical researchers. Thankfully, pemphigus and pemphigoid are being actively researched with new treatments being added to the list of clinical trials each year. But for others this is not always the case.
How Can You Raise Awareness?
Raising public awareness truly makes a difference. It gives families hope and can lead to new, life-saving treatments. You can help by participating in any of the following ways:
Social Media. Join the conversation on social media and use the official, global hashtag for 2016, #RareDiseaseDay.
I encourage everyone in our closeknit community to get involved by visiting the U.S. (www.rarediseaseday.us) or global (www.rarediseaseday.org) Rare Disease Day website before February 29 to learn about events in your area and what you can do.
Many individuals with pemphigus and pemphigoid (P/P) present with chronic mouth sores, often well before lesions appear on the skin or other parts of the body. These painful mouth sores tend to be persistent and present as red, ulcerated areas. In some cases — especially those with mucous membrane pemphigoid — lesions may predominantly involve the gum tissue. However, most people with P/P suffer lesions in multiple areas of the mouth, including the tongue, cheeks (buccal mucosa), wet surface of the lips, floor of the mouth, hard and soft palate, and throat.
Oral lesions are often subtle, especially in early stages of P/P. As a result, P/P are often misdiagnosed by both medical and dental practitioners as thrush, food or toothpaste “allergies,” poor oral hygiene, viral infections, or erosive lichen planus. Many patients with P/P are first treated on an empirical basis (treatment based on observation and experience without a definitive diagnosis), often with multiple medications, until one approach offers some relief. The relative rarity of these conditions mean they are often not on a medical or dental practitioner’s “radar” when assessing a patient’s oral lesions.
So if you suffer oral lesions, how can you partner with your dental health care provider to come up with a definitive diagnosis? A thorough review of your symptoms is critical. Make sure your dentist or dental hygienist listens carefully and asks detailed questions about your concerns, such as:
How long have you had lesions?
What areas are involved?
Do you have any skin, eye, vaginal, or rectal involvement
What do the lesions look and feel like?
Do the lesions move?
Does your pain level and disease activity vary over time?
Do you currently have any active lesions?
Biopsy confirmed early gingival and mucosal lesions of mucous membrane pemphigoid. These lesions were managed as “non-specific gingival irritation, suspect allergy” for several months prior to a diagnostic biopsy being obtained.
The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions.”
While early disease symptoms can be subtle, most of the conditions for which P/P are misdiagnosed are not typically chronic (with the possible exception of erosive oral lichen planus or chronic ulcerative stomatitis). Moreover, at least to a clinician with experience diagnosing and managing these conditions, the clinical appearance is quite distinct — toothpaste allergies and poor oral hygiene do not lead to widespread, chronic oral ulcers!
The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions. Therefore, the best advice I can offer is threefold:
Your dentist or physician needs to take your complaint seriously and needs to thoroughly investigate your symptoms.
A diagnostic tissue biopsy is essential before your dentist or physician treats you empirically with antifungal, anti-viral, or corticosteroid medication.
If the clinician assessing you does not insist on performing a diagnostic biopsy, insist on being referred to a clinician with extensive experience in the diagnosis and management of oral lesions (e.g an oral and maxillofacial pathologist, periodontist, oral and maxillofacial surgeon, or dermatologist).
Kate Frantz (left), Awareness Campaign Manager, with Marcy Syms (center) and Mindy Unger (right) at the Greater New York Dental Meeting. The Awareness Campaign is generously funded by the Sy Syms Foundation and the Unger family.
The IPPF Awareness Campaign seeks to reduce pemphigus and pemphigoid (P/P) diagnosis times by increasing symptom recognition among dental professionals. It’s important for the Awareness Campaign to connect with dental communities, and one effective way to do this is by exhibiting at major dental conferences.
Recently, the Awareness Campaign was an exhibitor at the American Dental Association’s (ADA) Annual Meeting in Washington, DC from 11/5-11/10 and the Greater New York Dental Meeting (GNYDM) from 11/29-12/2. Campaign staff and volunteers connected with over 600 dental professionals at each meeting, handing out brochures and post cards specifically designed to help these dental professionals recognize P/P symptoms.
An important feature of the IPPF exhibitor booth was the “Meet a Patient” area, where conference attendees were encouraged to ask a volunteer with P/P about their diagnosis story. This kind of personal appeal goes a long way toward helping dental professionals remember to “Put It On Your Radar.”
Another result of attending these conferences is the opportunity to network with others in the dental community who can help spread the word about P/P. At GNYDM, Awareness Campaign Manager Kate Frantz was interviewed for an article in Dentistry Today. The article was published the day after the conference ended, and it featured both an overview of the Awareness Campaign and key information about P/P.
With the success of the ADA and GNYDM exhibitions, the Awareness Campaign will continue to pursue these valuable opportunities to educate dental communities about P/P in 2016. The next event is the Yankee Dental Congress in Boston, MA from 1/28-1/30.
Dr. David Sirois and Becky Strong presenting at NYU.
By sharing their stories with students at dental schools across the United States, the IPPF Awareness Campaign’s Patient Educators aim to increase retention of pemphigus vulgaris (PV) and mucous membrane pemphigoid (MMP) curriculum. Each lecture consists of a short clinical video on PV/MMP followed by a Patient Educator presentation and Q&A session, combining clinical information with the emotional appeal of a real patient’s struggle with delayed diagnosis.
Since Becky Strong gave the first IPPF Patient Educator presentation at the University of Michigan in March of 2014, she and Hannah Heinzig have presented to a combined 1,705 students, faculty, and staff at 12 schools. Steady requests for future presentations put the Awareness Campaign on track to surpass its goal of visiting at least 19 dental schools by the end of 2016.
We have a day for giving thanks. We have two for getting deals (Black Friday and Cyber Monday). Now, there’s #GivingTuesday, a global day for giving back. On Tuesday, December 1, 2015, nonprofits, families, businesses, and everyday people around the world will come together for one common purpose: to celebrate generosity and to give. #GivingTuesday leverages the power of social media and the generosity of human nature to bring about real change by encouraging and amplifying small acts of kindness.
You donate, share on your social media outlets, someone else donates, and the cycle repeats all day long.
It’s a simple idea and it’s easy to join in. Here’s how #GivingTuesday works:
On December 1, tell your story on Facebook, Instagram, and Twitter about why you contribute to the IPPF and how your friends and followers can too. You donate, share on your social media outlets, someone else donates, and the cycle repeats all day long. It’s important that day to use the hashtags #GivingTuesday #healourskin and #putitonyourradar so that we generate a groundswell of support and awareness for the IPPF.
Why is the IPPF participating this year? Because we’re ready to make this one-day event a success. The IPPF’s social media presence has skyrocketed thanks to: the hard work of Noelle Madsen (IPPF Patient Services Coordinator); the regular Facebook and Twitter activity of our Peer Health Coaches (March Yale, Mei Ling Moore, and Jack Sherman); the growing footprint of our Awareness Campaign; and last, but certainly not least, the participation of our P/P Community.
Last year, #GivingTuesday raised more than $53 million for nonprofits around the world. That proves the explosive power of social media sharing (liking, sharing, retweeting, etc.).
I ask you to remember the IPPF on December 1, 2015, and be a part of #GivingTuesday. Remember to use the hashtags #GivingTuesday #healourskin #putitonyourradar to help us keep track of our community’s efforts.
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!
The IPPF has maintained a “News and Information” section for many years. The launch of PemPress signals a new era in how we share information with our community. Our overarching goal is to increase public knowledge of the IPPF and our programs and services while providing P/P patients with information that improves their quality of life.
Our PemPress operational goals are to build and strengthen the IPPF brand by increasing visitors to our website; convert those visitors into donors, volunteers, ambassadors, and advocates; and increase the IPPF presence on social media channels. Each week, a new article will be posted in one of four categories: advocacy, awareness, education, or foundation. This monthly rotation will ensure we are keeping our community up to date on ways to help the IPPF and themselves.
Week 1: Foundation
Week 2: Patient Support
Week 3: Awareness
Week 4: Advocacy
Week 5 (if there is one): To be determined.
This is no small task and takes many people behind the scenes to research, write, and edit content. It would not be possible without the support of the IPPF staff and volunteer section editors. To provide even more informational, educational, and rich content, we have guest contributors who will focus on specific areas of interest to our community. These folks are with specialty pharmacies, P/P treating physicians, global P/P experts, our staff, volunteers, and patients, caregivers, and family members.
If you would like to be featured as a guest contributor, have a suggestion on PemPress, or a future story, contact the PemPress team at firstname.lastname@example.org.