NVA Year-End Review
NVA gained more ground this past year than ever before in its mission to fund research, educate the medical community and promote public awareness of vulvodynia. We thank everyone who made a donation for contributing to the following accomplishments.
NVA’s Success on Capitol Hill
In spring 2007, NVA successfully launched its third consecutive national advocacy campaign. NVA supporters met with a majority of the Senators serving on the Health Appropriations Subcommittee and Representative Nancy Pelosi (D-CA), the first female Speaker of the House. In addition, thousands of advocates sent letters and e-mails describing how vulvodynia impacts their lives to more than 400 Congressional representatives.
NVA staff targeted key members of Congress serving on health-related committees that oversee NIH appropriations. As a result of this effort, strong language on vulvodynia was included in both the House and Senate 2008 NIH Appropriations reports. After NVA’s meeting with Rep. Lois Capps (D-CA), co-chair of the women’s issues caucus, and Rep. Tammy Baldwin (D-WI), co-chair of the task force on women’s health, Capps and Baldwin appealed to Rep. Steve Israel (D-NY), co-chair of the cancer caucus, to include vulvodynia in an upcoming gynecological cancer briefing. Rep. Israel agreed and NVA became an active participant in the planning of the September 25th gynecological disorders briefing (see NVA Joins Forces with Gynecologic Cancer Activists below). Rep. Patrick Kennedy (D-RI), from Ms. Veasley’s home state, attended the briefing to show his support for women’s health; Rep. Kennedy and Ms. Veasley are now discussing the possibility of a Rhode Island women’s health forum in 2008. NVA also took the lead in encouraging joint meetings with the Interstitial Cystitis Association and Senator Barbara Boxer (D-CA), to discuss the inclusion of urogynecological disorders in a women’s health bill that Sen. Boxer and other female Senators plan to introduce in 2008.
NVA has been lobbying for vulvodynia research funding and a national vulvodynia public awareness campaign for many years. Two years ago, Congress included language in the NIH Appropriations report directing the NIH to develop a National Vulvodynia Awareness Campaign, in coordination with the NVA. On October 24th, after more than a year of planning, the NIH Office of Research on Women’s Health (ORWH) launched the campaign at the National Press Club in Washington, DC (see NIH Launches Vulvodynia Awareness Campaign below).
Online Tutorial for Healthcare Professionals
As a result of generous support from The Patty Brisben Foundation, NVA was able to revise and update its online tutorial for healthcare professionals (http://learn.nva.org) and add CME/CE accreditation to the program. It is the first online vulvodynia course to offer continuing education credits.
Medical Research Grants
As a result of successful fund-raising appeals, NVA has awarded more medical research grants this year than ever before. Until 2004, NVA was only able to fund one study per year, but since then, we’ve doubled the number of grants awarded each year. In 2007 alone, NVA awarded nine new grants. Several of NVA’s prior grant recipients have used their pilot data to obtain multi-million dollar NIH funding. Detailed summaries of all these studies can be viewed on NVA’s web site.
Dr. Stanley C. Marinoff Career Development Award
In 2006, NVA created the Dr. Stanley C. Marinoff Vulvodynia Career Development Award to encourage interested faculty to pursue a clinical and/or academic interest in vulvodynia. The award provides seed money to conduct medical research, write a publication, or develop a vulvar pain clinic. The ultimate goal of this program is to increase the number of knowledgeable and qualified clinicians and scientists in the vulvodynia field. For the second consecutive year, NVA solicited applications from the medical/scientific community and received several excellent proposals. NVA will announce an award recipient in early 2008.
Other Outreach Activities
The NVA exhibited at the 2007 national healthcare conferences of the American Pain Society and the American Academy of Nurse Practitioners. NVA staff and volunteers disseminated hundreds of educational packets and answered health care providers’ questions.
In November, NVA began working on an economic impact, or cost of illness, survey with a social worker from the Walter Reed Army Medical Center. The survey will estimate both the direct and indirect costs of vulvodynia, including costs associated with medical appointments, prescription medications, over-the-counter remedies and time lost to work. Information gathered in this survey will aid NVA in its future Capitol Hill efforts.
Because of the many exciting developments in 2007, vulvodynia and the NVA were featured in a variety of media venues,including Redbook, Health and Prevention magazines, Canada‘s Globe & Mail Newspaper, CNN Headline News, ABC’s hit television series, Private Practice, and multiple health websites (see Media Coverage on the Rise below).
In addition to the initiatives described above, NVA maintains several ongoing programs and activities including, but not limited to, the following.
NVA has published 41 issues of its printed newsletter, NVA News, containing detailed articles by medical experts on the diagnosis and treatment of vulvodynia; the newsletter also features other articles relevant to women with vulvodynia, such as maintaining sexual intimacy, managing pregnancy and childbirth, and coping with chronic pain. Our newsletter is distributed to patients and health care providers, as well as other important contacts, including members of Congress and NIH administrators.
First published in 2004, the demand for NVA’s self-help guide, I Have Vulvodynia. What Do I Need to Know?, continues to grow. This educational guide provides detailed information on vulvovaginal self-care, diagnosis and treatment of vulvodynia, and coping strategies. It is available to women who contact us directly and to health care providers who order copies for their patients.
NVA has disseminated 26 issues of its electronic newsletter, NVA Research Update, to the medical and scientific community. This quarterly newsletter summarizes recent medical journal publications and includes periodic updates on upcoming conferences and research funding opportunities.
In an effort to keep members informed about recent advances in research, publicity and Capitol Hill efforts, NVA sends its electronic newsletter, NVA Update, to patients, their family and friends, and other interested parties. These updates include ‘action alerts,” which notify NVA contacts that their participation is needed at a certain time.
Since its inception, NVA has developed and maintained an international support network as a resource for patients in need. Our network provides phone and e-mail support in many areas, and monthly support group meetings in some locations. Currently, we have about 100 support leaders in place in the United States, Canada and several other countries.