RESOLVE and Access to Care

The Patient Response to Anti-Family Policies

Barbara Collura; Lee Rubin Collins

Disclosures

Semin Reprod Med. 2013;31(3):219-225. 

In This Article

Abstract and Introduction

Abstract

RESOLVE: The National Infertility Association was founded in 1974 to provide support and information for women and men living with infertility. RESOLVE has worked to increase access to care beginning with insurance coverage for infertility and more recently in fighting anti-family legislation in many state legislatures. Beginning with the Personhood ballot initiative in Colorado in 2008, RESOLVE and its grassroots advocates have been called into action to fight legislative attempts to restrict access to all family-building options, specifically in vitro fertilization. Personhood bills and ballot initiatives would severely restrict access to infertility medical treatments and prevent physicians from practicing medicine to the standard of care patients deserve. Personhood defines a fertilized egg as a person and grants full rights of "personhood" to a microscopic embryo. In addition to a growth in Personhood bills and ballot initiatives since 2008, RESOLVE has also had to fight other anti-family bills that would impose state government oversight and burdensome regulations on the practice of medicine for people with infertility. The most successful medical treatments available for people with infertility are under attack.

Introduction

RESOLVE: The National Infertility Association was founded in 1974 by Barbara Eck, RN, in Belmont, Massachusetts. Eck struggled with infertility herself, and together with a small group of women who gathered around her kitchen table, they formed the first patient support organization in the United States for people with infertility. Eck was determined to offer services more widely to women experiencing a diagnosis of infertility. In 1976, guidelines were created to allow RESOLVE chapters to form anywhere in the country with the first in Minneapolis, Minnesota. A 1978 grant from the U.S. Department of Health, Education and Welfare in conjunction with the Boston Family Planning Project helped to integrate infertility services into existing federally funded family planning settings. The first Physician Referral List from RESOLVE was introduced in 1978 and included 130 physicians specializing in infertility care. This became a valuable service that RESOLVE offered for many years before the advent of the Internet, allowing patients the ease of finding a specialist. The name of the organization was trademarked in 1983 following the hiring of a full-time mental health counselor and the establishment of a toll-free Helpline for call-in counseling and referrals.

The chapter network grew with nearly 40 chapters operating throughout the country. Most chapters were run by volunteers and provided local support services including peer and professionally led support groups, educational programming, professional outreach, a printed newsletter, and eventually chapter Web sites. Demonstrating its leadership in infertility education and support, RESOLVE staff wrote a comprehensive text on all aspects of infertility, Resolving Infertility. The first edition was published by HarperCollins in 1999 and the second edition in 2000. The RESOLVE of 2012 is a nationwide health advocacy organization that improves the lives of women and men living with infertility. The mission is focused on providing education and support to people struggling to build their families, advocating for public policies to promote full access to all family-building methods for all persons, and raising public awareness of infertility and its impact.

Among its many services, RESOLVE's peer-led support groups continue to be the most recognized direct service provided by RESOLVE. Meeting monthly in 42 states, volunteer-run support groups provide much needed "high-touch" connections to people in the midst of their family-building journey. Despite the growth of the Internet, online bulletin boards, chat rooms, and social media, face-to-face connections are still a valued resource in the infertility patient community. RESOLVE continues to offer toll-free helplines nationwide as well as live education events. In the past decade, RESOLVE has capitalized on new technologies to provide free and accessible resources online through a robust Web site and social media presence.

Along with its recognition of the importance of emotional support, RESOLVE always realized it needed to focus on public policy as well. Early on RESOLVE recognized there were barriers to access to care, most significantly the financial barriers that prevented women and men from being able to afford infertility medical treatments. Most employer-provided insurance plans do not include coverage for the diagnosis and treatment of infertility. Even most insurance plans for federal and state employees exclude coverage for infertility. RESOLVE focused on the state legislatures because they had the power to mandate that certain benefits be included in all contracts of insurance. By mandating coverage for infertility, the legislatures could lessen the financial burden on patients and ensure that more patients get the right medical treatment for their infertility diagnosis. In 1987, the first major advocacy success occurred with the passage of a comprehensive insurance mandate in Massachusetts,[1] requiring insurers to cover both the diagnosis and treatment of infertility including in vitro fertilization (IVF). Over the next 5 years, RESOLVE helped secure mandated insurance laws with varying degrees of coverage in eight more states. RESOLVE's local chapters were successful in obtaining state insurance mandates in more recent years in New Jersey (2001),[2] New York (2002),[3] and Connecticut (2005).[4]

Following on the heels of the organization's state legislative activity, RESOLVE held its first Advocacy Day in Washington, D.C., in 1994. This marked a turning point for RESOLVE in terms of serving as the patient voice in advocating for not only state but federal legislation that impacts the infertility community. For many years beginning in 1999, it advocated for the Family Building Act, a federal bill that would mandate insurance coverage for infertility for all citizens.

This exposure to national policy issues proved to be beneficial. By the late 1990s, with the passage of the Dickey-Wicker amendment,[5] there were hints that the policy atmosphere regarding reproductive medicine was changing. In 2003, this shift became undeniable when President George W. Bush's Council on Bioethics (the "Council") announced that one of its first orders of business would be to target reproductive medicine.

The council, led by Dr. Leon Kass, took testimony and in the fall of 2003 issued its initial report recommending extensive regulation of reproductive medicine. The antipathy toward reproductive medicine in that first report was unmistakable. For example, the council expressed skepticism that infertility patients could make sound decisions about their embryos; referred to those newly formed embryos as the "baby to be" and "nascent human life"; and recommended far-reaching onerous new regulations including that the federal government track all embryos created in the course of IVF.

RESOLVE believed that infertility patients were not being accorded the respect they deserved and answered this report with a forceful opposition. It was so forceful, in fact, that the council immediately asked RESOLVE to come to Washington, D.C., for a meeting. It was at this time that RESOLVE developed the advocacy strategy that serves it to this day: Others can seek compromise, but RESOLVE will fight for what is right and fair for infertility patients. After two more rounds of reports from the council and strong critiques from RESOLVE and others, the President's Council on Bioethics issued its final report in 2004 with all of the recommendations that had offended infertility patients stripped away.[6]

From this experience with the President's Council on Bioethics, RESOLVE saw that infertility patients needed a strong spokesperson to stand up for their interests. Neither RESOLVE nor probably anyone foresaw the magnitude of the threats that lay ahead, but in a prescient move, RESOLVE decided to relocate its headquarters from Massachusetts to the Washington, D.C., area. In 2004, RESOLVE opened its headquarters office just outside the offices of the National Institutes of Health in Bethesda, Maryland.

RESOLVE had launched National Infertility Awareness Week in 1989 as the first and only national public education and awareness effort focused on the disease of infertility. In 2010, the launch of Project IF brought RESOLVE's public education work to center stage. Project IF, with "IF" serving as the online abbreviation for infertility, is a campaign to educate the public about infertility. RESOLVE has collaborated with major women's magazines on feature stories about infertility and family building including Good Housekeeping, Redbook, and SELF Magazine. RESOLVE staff and board members have served as experts to national news outlets such as the Today Show, Fox and Friends, MSNBC, the Wall Street Journal, and USA Today.[7] When key national stories break, the media contacts RESOLVE for thoughtful insight, comments, and patient perspectives.

On many occasions, RESOLVE's public policy work intersects with its public awareness work because a legislative battle produces a spate of news stories both local and national. Occasionally, however, the reverse happens: It is the news story that prompts the legislative battle. Nowhere was this more evident than when Nadya Suleman gave birth to octuplets in January 2009.

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