From Obscurity to Oprah How a Patient Advocacy Movement Put a Little-Known Health Condition on the Map

by Leah Thayer

Less than a decade ago, most women with vulvodynia—chronic vulvar discomfort or pain without the presence of infection or skin disease—could hardly find a doctor who knew how to diagnose the condition, much less treat it. There was no research funding, no discussion in medical schools, no interest from pharmaceutical companies and, other than a smattering of loosely knit local support networks, no organization that advocated on behalf of patients. Today, vulvodynia isn't exactly a household word—at least not yet. But it is the subject of a five-year prevalence study at Harvard Medical School, with preliminary findings suggesting that almost 20 percent of American women have suffered from chronic vulvovaginal pain at some point in their lives. The National Institutes of Health (NIH) spends close to $2 million a year on vulvodynia research and sponsors workshops and conferences on the condition. Major research institutions are studying vulvodynia. There are books on vulvodynia, and articles in popular magazines. Drug companies are showing interest.

And women with vulvodynia have the National Vulvodynia Association (NVA) on their side. With a content-rich website, two newsletters, conferences, research funding and an extensive public- awareness campaign, the NVA is a tiny but influential patient-advocacy movement that has made great strides toward its mission of improving the lives of individuals affected by vulvodynia. NVA's story may be instructive for women with other conditions that are largely unknown or ignored, or for other fledgling women's health organizations. Phyllis Mate, one of NVA's founders, hesitates to call her organization a "model." After all, it operates on a shoestring budget, with just one-and-a-half full-time salaried employees, not counting herself (she is its volunteer board president, newsletter editor and acting executive director—a juggling act she is careful not to endorse). But she acknowledges that NVA did many things right. With hard work and low pay as caveats, here are some of them.

Getting Organized: Join Forces

A precursor to the NVA was a small vulvodynia support group Mate had joined on the recommendation of her neurologist. By 1994 Mate and four other group members decided to form the National Vulvodynia Association. "It was summertime," she recalls, and the group would meet for lunch and share their frustration with how little doctors knew about vulvodynia and the complete absence of research funding it received. The five incorporated the NVA and worked with the IRS to obtain tax-exempt status as a 501(c)(3).

Staffing: Enlist Volunteers

From the very beginning, NVA has relied largely on the work of patient volunteers. An early step was the formation of regional support networks, each run by a knowledgeable volunteer who either coordinates group meetings or "takes and makes phone calls" on behalf of other patients needing referrals or information. There are around 100 of these regional networks today, Mate says. Volunteers perform numerous other jobs for NVA as well, including serving on NVA's medical advisory board, identifying practitioners with an interest in vulvodynia, speaking at conferences, writing articles and corresponding with members (NVA has about 2,500 patient members and about 800 medical professional members).

NVA's paid staff is tiny but efficient. Its half-time employee is Christin Veasley, a "mostly cured" patient whom Mate describes as "phenomenal." She runs NVA's professional programs, monitors research, applies for grants and speaks at conferences, among other duties. The only paid full-time employee is an administrative assistant (not a patient) who handles mailings and other administrative matters. Both work out of their homes, as do Mate and Harriet O'Connor, another NVA founder who also works long hours as a volunteer. (At this writing, NVA is looking for a paid executivedirector.)

Outreach: Use the Internet

NVA took a calculated risk early on and decided to use the Internet as a principle means of disseminating information about vulvodynia to patients, medical professionals and others. "Some board members were skeptical that women with such a personal condition would contact us via the Internet," wrote Mate in NVA's newsletter last year, but the gamble paid off. Its website, www.nva.org, provides a wealth of information and links for patients and medical providers alike, greatly reducing the time and money NVA might otherwise spend on mailings, taking phone calls and other expenses.

Funding: Find a Friendly Legislator—or Two

Just a year after its launch, NVA made inroads on Capitol Hill when a few members arranged to brief congressional staff members on vulvodynia and the need for research. "Find a friendly legislator, and get in touch with the right staff person," Mate advises, "someone who takes an interest in your issue" (most congressional offices have a designated staff person for health issues). One of these legislators was Tom Harkin, a Democrat from Iowa and a "major player" on the Senate subcommittee that deals with health issues. Harkin's support would turn out to be a critical linchpin in securing research funding from the National Institutes of Health, as addressed below.

Voters are fickle, so Mate advises meeting with as many legislators (or their key staffers, as the case may be) as possible. Female legislators may be particularly inclined to take an interest in women's health issues, she adds.

Visibility: Make Connections

Many of NVA's most successful efforts have resulted from making personal connections. In 1996, for instance, the association played a crucial role in convincing NIH to hold its first vulvodynia symposium. A key to that event was Maria Turner, M.D., a dermatologist at the National Cancer Institute, who had previously collaborated with a member of NVA's medical advisory board in treating vulvodynia patients. "Maria was instrumental in getting the first conference launched at NIH," Mate says. Turner then helped NVA gain the support of Dr. Florence Haseltine (a well-known physician and author and director of NIH's Center for Population Research) and Dr. Vivian Finn (director of the NIH's Office of Research on Women's Health). "The conference resulted from the commitment of those three women," Mate says.

That conference, in turn, sufficiently impressed Harkin so that he was willing to hear NVA's pitch for vulvodynia research funding. This pitch led him to include language in the NIH Appropriations Report.

Personal connections furthered NVA's goals in other areas too; a "friend" at a foundation helped them get a small grant, for instance. But what if you don't have those relationships to begin with? Develop them. "Get on the phone and try to make a personal connection with someone," says Mate. The NVA did this with Drs. Laura and Jennifer Berman— the telegenic urologist-and-psychologist duo. After NVA "made contact" with the Bermans, the sisters discussed vulvodynia before one of the biggest audiences imaginable: Oprah. The NVA website received 10,000 hits in the following week. "You make contact with the right people, and sometimes they can help you along, publicity-wise."

Media: Be Choosy but "Juicy"

NVA has no public-relations firm and limits press releases to issues it considers "juicy"—a strategy that is both frugal and smart. In 2001, following an episode of Sex in the City that dealt jokingly with vulvodynia, NVA fired off a press release praising HBO for tackling the subject but criticizing its insensitive portrayal. "We used the Internet to find the 100 newspapers with the highest circulation, and targeted the health editors," Mate recalls. As a result, eight major newspapers published articles about the reality of living with vulvodynia and NVA received hundreds of phone calls and thousands of hits on its website.

Education (1): Get to the Root of the Problem

Educating medical professionals about vulvodynia is a top priority. NVA's most ambitious means to this end is the Vulvodynia Teaching CD, a CD-ROM covering the diagnosis and treatment of chronic vulvar pain disorders. NVA then got a small grant from a medical device company to send copies of the CD to 720 obstetrics/gynecology department heads and resident directors at U.S. and Canadian medical schools. It's now seeking a grant that will expand this audience to 100,000 practitioners. The CD "gets to the root of the problem, which is that many doctors can't diagnose vulvodynia," says Mate.

Other efforts targeting medical professionals include speaking engagements and renting booths at conferences on pain and obstetrics/gynecology. "One of the best things" NVA did was to assemble seminars or symposia for these conferences, an effort that begins with a proposal laying out the issues and speakers. These appearances can yield unexpected dividends. At one conference, Chris Veasley so impressed representatives of Johnson & Johnson that the pharmaceutical giant gave NVA a small, unrestricted educational grant that now helps to support projects directed at the medical community. Johnson & Johnson doesn't market any products for vulvodynfa at this time.

Education (II): Find a Sympathetic Publisher

No book on vulvodynia existed as recently as two years ago. In 2001 Mate received a copy of a book on interstitial cystitis (a painful bladder condition that primarily affects women) from New Harbinger Press, which specializes in books on individual health conditions. A few months earlier, Dr. Howard Glazer, a member of NVA's medical advisory board, had expressed interest in writing a book on vulvodynia for the public. Mate called New Harbinger to assess its interest, and in July of 2002, the Vulvodynia Survival Guide was published. (The book includes a chapter on building a patient advocacy movement.)

Expenses: Ask for Discounts

As the head of a "struggling nonprofit," Mate has no compunction about asking vendors for discounts. "Wherever we go for business services, we explain that we're a small, largely patient-run women's health nonprofit, and most companies will give us a price break. If they want your business, they'll probably say yes. We're steady, reliable; we pay our bills on time." NVA also applies this tactic to conference booth fees, which can be expensive. Some sponsors "won't budge, but most give us a substantial break on the exhibiting fee."

In other financial matters, NVA is both resourceful and conservative. One small revenue source is.Amazon.com, which donates 15 percent of sales of books such as The Vulvodynia Survival Guide. Mate sends just two fundraising letters a year, one specifically for research. "People love to give to research," she says. "It's harder to get money for overhead."

And NVA has an endowment that has actually grown in the bear market, by investing in slow but steady interestbearing stocks such as real estate investment trusts. The endowment has allowed NVA to fund small pilot studies into vulvodynia and will pay for its first salaried executive director—who will have lots of fundraising experience, Mate hopes. Leah Thayer is editor of the Network News. For more information on vulvodynia (and vulvar vestibulitis), visit NVA's website at www.nva.org, call 301-299-0775 or write to NVA, PO Box 4491, Silver Spring, MD 20914.