Lymphedemaville

Elda Cruce Railey
Contact the author through sask...@lymphnet.org.

Note. This article originally was published in LymphLink, volume 13, issue 3. Copyright 2002 by the National Lymphedema Network. Reprinted with permission.

When someone says "patient advocate," what comes to mind? For many, an advocate is portrayed as a confrontational or adversarial sort who watch-dogs the system. For others, it would be someone who cares enough about their situation to defend and uphold their rights.

Currently those perceptions are correct and there are many other
nuances along the paradigm of advocacy. The definition of advocate is stated as: "1. one that pleads the cause of another 2. one that defends or maintains a cause or proposal."

Background and History of Advocacy

Healthcare advocacy plays an important role in today's medical system.

Historically, patient viewpoints have been represented by doctors,
nurses or other healthcare professionals. While those professions
still have their patient advocates, more and more patients are
involving themselves in the system to advocate for healthcare access, research and patient's rights.

For years, the American Cancer Society was the sole voice of the
cancer patient. In the '80s, AIDS activists began to speak out to
bring attention to the AIDS epidemic in our country. Breast cancer
survivors began organizing, as well, through organizations such as the Y-Me National Breast Cancer Organization and the Susan G. Komen Breast Cancer Foundation.

The National Cancer Act of 1971 made many changes and established the President's Cancer Panel which includes an advocate as a member. Many individual advocates have been important contributors to advances in legislation and involvement at the federal level. Rose Kushner, a breast cancer patients' rights activist, helped achieve the recommendation of the 1979 Consensus Conference of the NCI that biopsy and treatment should be separate, allowing women who are newly
diagnosed to get second opinions, to consider treatment alternatives and to participate in the decision-making process.

Bella Abzug, who graces a page of the NLN's organizational brochure, was a legislator who was very outspoken for the rights of breast cancer and lymphedema patients. She was the first to wear the LYMPHEDEMA ALERT bracelet.

In 1993, the National Breast Cancer Coalition (NBCC) was instrumental in orchestrating a petition drive that delivered over a million signatures to Congress to increase funding for breast cancer research.

By the year 2000, groups addressing most types of cancers--and many other diseases--had formed, designed to facilitate education of their members and motivation for advocacy.

Types of Advocacy

Traditionally, advocates are thought of when addressing legislative
issues. These advocates may focus their energies on policy and
legislative issues, and may be called on to testify at the state or
federal level to educate about access, reimbursement, research funding or policy issues.

Another type of involvement in which advocates have been very
effective is research and healthcare consumer advocacy. These
advocates are usually patients or caregivers who provide an
experiential viewpoint in the clinical or research process, often
discussing and promoting a high standard of care through treatment guidelines, research protocols and studies. In a world where medical decisions are often guided by insurance companies and liability reduction strategists, the advocate plays an important role in keeping a human focus on medical treatment and research priorities. Advocates participate in dialogues addressing the formation of research study ideas to keep scientists focused on studies that will result in improvements in treatment or that will address health concerns often overlooked and misunderstood--like lymphedema.

Issues

Current issues in research make patient representative involvement very important. With strict limitations in available resources, it is no longer acceptable to do research only for the sake of science.

Advocates provide a human focus and defend the human perspective when they are incorporated into scientific dialogue. Issues such as privacy, use of genetic information, use of tissue, treatment guidelines (because lymphedema is a condition that has no pharmaceutical treatment), and the big money machine of the
pharmaceutical companies, do not help us drive our agenda.

Therefore, we must rely on our passion and commitment to address the issues surrounding lymphedema and related disorders.

Opportunities for Lymphedema Advocates to Collaborate With Related Groups

By becoming involved with related groups, lymphedema advocates can keep the issues faced by lymphedema patients at the forefront. These organizations offer a number of programs to involve advocates:

NCI Directors Consumer Liaison Group (DCLG)
NCI Consumer Advocates in Research and Related Activities (CARRA)
NCI Office of Survivorship
National Heart, Lung, Blood Institute (NHLBI)--patient advocacy in
improving design and conduct of clinical trials
Department of Defense (DOD)--reviewers for the breast and prostate
cancer research
Food and Drug Administration Patient Consultant Program
Office for Human Research Protections (OHRP)
Centers for Disease Control (CDC)--patient participation and patient/ advocacy sponsorship in lymphedema awareness event
The American Cancer Society (ACS)--involves advocates in the scientific review for funding grants
Susan G. Komen Breast Cancer Foundation--incorporates advocates in the review of grants and their scientific programs
Pharmaceutical companies often ask advocates to provide feedback through a committee structure focusing on one therapy
Cooperative Groups/Clinical Trials--advocates participate in working groups to review informed consent documents, study ideas and protocols National medical meetings and societies are involving advocates on committees and boards. The American Association of Cancer Research (AACR) provides a public forum at their annual meeting and also a scientific mentor program for patient advocates. The American Society of Clinical Oncology (ASCO) involves advocates and patient advocate organizations on committees and in presentations at their annual meeting.

Accomplishments by Lymphedema Advocates

Education and awareness is a large component of advocacy and
lymphedema advocates have been very successful in organizing awareness events in hospitals and universities and, since 1994, in organizing many successful Lymphedema D-Day events to create awareness on a local level. Lymphedema patient advocates have also participated and presented at the Tumor Board and Grand Rounds. Lymphedema advocates in California claimed a major victory when approval for reimbursement for two sets of garments per year was granted by Kaiser Permanente. It is hoped that this legislation can be a model for other states.

Training Programs

Since patient advocates are becoming more accepted in research arenas and in the development of guidelines and processes for evidence-based medicine, training programs for these specific needs are being developed. NLN currently is developing a pilot program for science education for patient advocates. An instructional session in the basic science of the lymphatic system will be held during the Patient Summit at this year's Conference.

Project LEAD prepares breast cancer advocates for participation in scientific grant reviews, and the American Association for Cancer
Research (AACR) Survivor-Scientist Program provides training for
advocates in basic science and cancer therapies. The Coalition of
National Cancer Cooperative Groups (CNCCG) has developed a program to provide patient advocates who serve on clinical trial committees with the basic knowledge needed to improve their effectiveness and increase confidence in scientific communications. Academic institutions also are seeing the value of trained patient advocates who make a career of health care advocacy. Sarah Lawrence College offers a Masters degree
program in health advocacy and many other universities prepare
students for careers in public policy and health administration.

Legislative Advocacy and Lymphedema

While there are a number of groups that focus on general patient
concerns, such as patient bill of rights and access issues, the issue of lymphedema is sadly overlooked on the legislative agenda. Recently, however, there has been some success. And as we focus more attention on the issues through NLN programs, we hope to see many more. Keep your eyes on the progress of these bills:

House Bill HB 383.VA. offered January 9, 2002, patron-Wardrup.
Legislation for Lymphedema Therapy in progress with influence and support from patients and caregivers.

Event Proposal for Lymphedema Act by Senator Susan Fargo at the State Capitol in Boston, Mass.

Visit the following websites for more information on how to write to
your congressional representative: www.house.gov/writerep 
or netlobby.com/mainpage.htm and click on Capitol Hill Basics.

What Can You Do?

As you can see, advocacy takes many forms and has many faces.

The common denominator between all types of advocacy--be it research, legislative or patient access and issues--is ACTION. Be well informed, be passionate, communicate and let others know what the issues are and how they can help. Advocacy does not have to be a large scale endeavor; you can be very effective just by making your next door neighbor aware, by organizing awareness events, by working with a local doctor or researcher to provide a human focus for their work, or by testifying at state and national legislative events. To successfully address the issues surrounding lymphedema and lymphatic disorders, we should be armed with knowledge, passion, and a commitment to share our stories and struggles in order to learn from past experiences.

Elda Railey is a patient advocate and independent consultant for
patient advocacy organizations, following 12 years of service with the Susan G. Komen Breast Cancer Foundation as Director of Grants, where she led one of the nation's largest programs for private funding of breast cancer research. She specializes in collaborations and training advocates for effective integration in medical research and patient advocacy. She is currently working with the NLN.

http://onsopcontent.ons.org/Publications/SIGNewsletters/lym/lym17.2.html

See also:

How To Plan a Local Lymphedema Event

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_plan_a_local_lymphedema_event

How To Start a Lymphedema Support Group

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_start_a_lymphedema_support_group

Lymphedema Advocacy

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