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Groups increase roles in advocacy and research

In an era of dwindling resources, advocacy groups for patients with dermatologic diseases are reaching beyond their traditional mission of providing support and information to patients and families. Now, in partnership with dermatologists, they’re stepping up their efforts to fund research, influence legislation, advocate for insurance coverage, and participate in the development of treatment guidelines. Some groups are also increasing their outreach to dermatologists in an effort to bridge the gap between the treatment and information the physician can provide in an office visit and the needs of the patient in the day-to-day management of the disorder. 

“Dermatologists should understand that the patient advocacy groups can enhance patient outcome for them because we have resources and information for patients that they can’t relate in the short span of time that they have with the patient,” said Vicki Kalabokes, president and CEO of the National Alopecia Areata Foundation (NAAF). “If doctors are wondering, Why should I even care about these groups?,’ we say it’s because they will help you with your patient in ways that you can’t, and the patient will be more satisfied.” [pagebreak]

The patient lobby

In the legislative arena, testimony from patients carries an emotional impact that may do as much or more to advance an issue than the comments of physicians and scientists. Henry W. Lim, MD, chairman and C.S. Livingood chair of the department of dermatology at Henry Ford Hospital in Detroit, organized the participation of dermatology groups in the U.S. Food and Drug Administration’s March 2010 hearing to consider modifying the classification of tanning beds. In addition to representatives from the AAD and other physician organizations, “we also invited patient advocacy groups, including the melanoma support groups,” Dr. Lim said. “Patients themselves and loved ones of patients who had died were very powerful and compelling in describing how the use of tanning beds had altered their lives. To me, the patients were a very important part of the hearing.”

Alopecia areata was among 39 diseases placed on a preliminary list for public comment at an FDA meeting, held in late October 2012, on the patient-focused drug development initiative that is part of the Prescription Drug User Fee Act (PDUFA). Melanoma was the only other skin disease on the list, which will eventually include only 20 disease areas. The inclusion of alopecia areata is a direct result of a July visit to Capitol Hill by 600 patients, Kalabokes said. “Each patient saw his or her own representative, and there were 220 visits made to representatives. Patients said they were very warmly received, and we had several representatives sign on to the MODDERN Cures Act.” The Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network Cures Act of 2011 is an effort to update the nation’s drug and diagnostics evaluation and regulatory network by encouraging the discovery and development of new treatments for diseases with few or no treatment options. “There are no FDA-approved treatments for alopecia areata. We really need this because we feel there are a lot of drugs out there that pharma might develop” if current patent laws were updated, Kalabokes said. On another front, Kalabokes said she met privately with FDA officials to review protocols and endpoints for clinical trials of alopecia areata treatments “so that if we do find something therapeutic from a company, we won’t have to go through all those hurdles.” A patient who accompanied her to those meetings was subsequently invited by the FDA to serve on one of its advisory councils, she added. [pagebreak]

The NAAF is joined by the National Psoriasis Foundation (NPF) and the National Eczema Association (NEA) in educating members of Congress, individually and as part of the Coalition of Skin Diseases (CSD), an organization comprised of 16 patient advocacy groups (see sidebar). “The CSD advocates annually on the Hill for NIH funding, and we’re able to share with members of Congress and their staff the real impact of research funding on skin diseases,” said Julie Block, president and CEO of the NEA and president of the CSD for 2012. “The NEA is also participating in some of the newer efforts, like PDUFA’s patient-focused drug development initiative. For the FDA, we need to highlight the number of people affected by eczema and explain its impact on work, sleep, performance — the quality of life issues.” The NPF is also advocating for passage of a bill introduced in 2011, the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act, said Catie Coman, vice president of marketing and communications. The bill would authorize the Centers for Disease Control and Prevention to undertake a broad data collection effort relating to psoriasis and psoriatic arthritis.

At the state level, the NPF is focused on access to care, Coman said, because patients have cited that issue as a primary problem in treating and managing their disease. In concert with groups representing patients with arthritis, multiple sclerosis, lupus, and Crohn’s disease, “we’re working on the issue of drug tiering,” she noted. “We’re concerned about drug tiering because the drugs that work really well are biologics, and those are expensive.” The NPF battles insurance companies blocking access to treatment “both as a group, against the whole insurance company, and on a case-by-case basis,” said Mark G. Lebwohl, MD, professor and chair of dermatology at the Mount Sinai Hospital and chair of the medical board of the NPF. In the years he has spent advocating for psoriasis patients, he’s learned that “insurance companies and the government really don’t care when doctors complain; they view everything we do as self-serving,” he said. “But when a patient organization that represents 7 million people with psoriasis writes a letter, the government cares a lot and the insurance company cares a lot.” [pagebreak]

Research priorities

The NEA seeks to fund research on the topics that matter most to the 30 million-plus patients with eczema in the U.S.: “itch, itch, and itch,” Block said. (For the record, the NEA website also lists eczema prevention and alternative therapies as research priorities.) The group provides seed funding for studies that have led to “multi-million-dollar funding through the NIH. That’s an excellent return on our donors’ investment,” she said. In addition, the NEA and other CSD member organizations with an “itch component” to their disease are seeking funding for a collaborative research project on pruritus which could gather valuable data for investigators.

For 13 years, the NAAF has provided funding to a researcher who has achieved breakthroughs in her investigation of the genes associated with alopecia areata, said Kalabokes (see “Battling Alopecia Areata”). Angela M. Christiano, PhD, a professor in the departments of dermatology and genetics at Columbia University, has focused her research on the NKG2D ligand, and found a key association with IL-15. “She finally received a NIAMS/NIH grant, and that’s when Dr. Christiano made her discovery,” Kalabokes said.

In her role as CSD president, Block participated in the AAD’s 2012 Research Agenda Consensus Conference (see “Conference identifies research priorities in dermatology” on p. 15 of print edition of the September 2012 issue of Dermatology World). Pruritis was identified as one of dermatology’s three most pressing research needs, which Block called a “victory for many skin diseases.” She commended the AAD for bringing a broad range of stakeholders together to tackle the issue of prioritizing research efforts, adding that “the learning, networking, and sharing for each attendee was important to make progress and bridge some of the gaps to benefit practitioners and patients.’” Dr. Lim, the chair of the Research Agenda Committee, which organized the conference, said the patient advocacy groups made key contributions to a “very active, very engaged” meeting, and credited patient group input with elevating pruritis to its position among the top three research priorities, noting that “this is something that is very uncomfortable for patients, and for which there’s a large gap in terms of the research and knowledge base.” [pagebreak]

Advancing treatment

Block is representing eczema patients as a member of the AAD committee that is now in the process of developing treatment guidelines for atopic dermatitis. This is a first for the Academy, said Craig A. Elmets, MD, professor and chair of the department of dermatology at the University of Alabama School of Medicine and chair of the AAD’s Clinical Guidelines and Research Committee. “In the past, the committee was comprised of dermatologists, and there was little input from patient advocacy groups,” he remarked. “But now we’re following the recommendation of the Institute of Medicine, which has suggested that patients should have a role, since they are the ones most affected by the guidelines.” Block, who has now attended three in-person meetings, said “the biggest takeaways for me are, one, these are the most committed, dedicated, patient-centric physicians I’ve ever met. We have champions out there. Second, there’s a gap between what will go in the clinical guidelines and the information that may be helpful to a patient, but is not ready to be a bona fide guideline because the evidence isn’t conclusive. Either the studies haven’t been done, or they’ve been inconclusive, or they’ve not been done well, so you can’t include them in the guidelines without comment.” She said she will remain involved “all the way through to the end, and when the clinical guidelines final review is done, I have the opportunity to comment on every single recommendation in the guideline.”

Filling the gap between evidence-based treatment and treatments based on patient experience is one of the most critical roles the NEA plays in support of eczema patients, Block said. “There are many over-the-counter options, products, and practices that we know help improve the patient’s quality of life, but they may never find their way into the guidelines,” she said. “For eczema in particular, patients may learn a lot about prescription treatment during their 10-minute office visit, but they don’t learn too much about the essential bathing and moisturizing regimens that will make the treatment successful.” Block cited compliance with a corticosteroid regimen as another key issue for eczema patients, noting that they’re “often confused, frustrated, or scared about some of their treatments. We have a myths and facts’ brochure that explains to them that if you use your topical steroid properly, you’re going to be fine, and if you don’t, you most likely won’t be fine.” [pagebreak]

Ensuring that young physicians are up to speed on the most advanced treatments for psoriasis is the goal of a 14-year-old program sponsored by the NPF. The intensive two-day program, which this year brought 130 residents together with experts, covers psychosocial issues as well as medical treatments, Coman said. “At the end of three years, you find that some residents learn very little about how to treat psoriasis,” Dr. Lebwohl said. “But we give an exam at the beginning and end of the weekend, and find that they can go from a C-minus or even an F to a B-plus. There’s a big change in the learning curve.”

Patient support

Dermatologists may be well aware of the psychological and emotional toll a skin disease takes on their patients, but may not have the time or expertise to help. For many conditions, a patient advocacy group can connect patients with local support groups, individual patients, experts, or online forums. The NPF offers a peer mentoring program, Psoriasis One-to-One, that matches individual patients with volunteer mentors who can provide emotional support as well as treatment information and advice for coping with the disease. Roughly 1,000 patients have found mentors through the two-year-old program, Coman said. For patients with alopecia areata, because there is no approved treatment and because the disease is so visible, finding support among fellow patients is critical, Kalabokes said. “Because our society is so cosmetic, patients are terribly traumatized when they lose their eyebrows and eyelashes — especially men,” she said. “They pretty much know that nothing is medically available right now — that’s the bond.” More than 1,000 patients came to the grpruroup’s conference last year, including 300 children who attended a special camp, she said. 

Patient advocacy groups, eager to reach patients through their dermatologists, employ a variety of physician outreach techniques. The NAAF, the NPF, and the NEA, along with many other CSD groups, send patient education brochures to dermatologists in the hope that they will be distributed to patients. “We also encourage dermatologists to become involved in our organization at the local level, which could range from doing advocacy work with the state to participating in our walks to serving as a medical chairperson,” said the NPF’s Coman. The NEA exhibits at the AAD Annual Meeting and is currently piloting three different methods of offering their information kit to dermatologists. (The CSD exhibits at the meeting, too.) The message, as articulated by Block, could likely apply to many other patient advocacy groups in dermatology: “We’re here to help, we have trustworthy, vetted information, and we’re guided by a scientific advisory committee that’s a who’s-who of eczema. We can help dermatologists, we can help their patients.” [pagebreak]

Get the app (includes online-only slideshow)

Shadi Kourosh, MD, a third-year resident in dermatology at the University of Texas Southwestern Medical Center, said she developed a passion for patient advocacy through her work with her mentors, Paul Bergstresser, MD, and Amit Pandya, MD, both professors of dermatology at UT Southwestern. As she worked with various patient advocacy groups that are members of the Coalition of Skin Diseases, she heard a common refrain: many physicians, especially those in residencies or just entering practice, are not aware of the groups’ existence or the resources they can offer to patients. “I knew that if you want to reach people my age, you have to use an app,” she said. “I pitched it to the Society of Investigative Dermatology [of which Dr. Bergstresser is incoming president], and they loved it.” SID supported the app’s development.

The free Skin Advocate app, launched for the iPhone in September 2011, provides contact information for the 16 member organizations of the CSD. A “share” button allows users to share a group’s contact information with others via email (the email appears from a “do not reply” address so that the email address of the sender is protected). “Our hope is that connecting patients with these advocacy groups will help minimize emotional stress due to fear and the lack of education about their conditions,” Dr. Kourosh said.

The app can be located by typing either “skin advocate” or “dermatology” in the App Store.

For an online-exclusive demonstration of the app, click here.

Coalition of Skin Diseases

The Coalition of Skin Diseases includes groups that help patients with a variety of skin conditions. Member groups include:

Basal Cell Carcinoma Nevus Syndrome/Gorlin Syndrome

Cicatricial Alopecia Research Foundation

Cutaneous Lymphoma Foundation

Foundation for Ichthyosis and Related Skin Types

International Pemphigus Pemphigoid Foundation

National Alopecia Areata Foundation

National Eczema Association

National Foundation for Ectodermal Dysplasias

National Psoriasis Foundation

Nevus Outreach

Pachyonychia Congenita Project

The Sturge-Weber Foundation

Vitiligo Support International

Xeroderma Pigmentosum Family Support Group



Get the app (includes online-only slideshow)
Coalition of Skin Diseases