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Testimony on Efforts to Reduce Infant Mortality by Ciro V. Sumaya, M.D., M.P.H.T.M.
Administrator, Health Resources and Services Administration
U.S. Department of Health and Human Services

Before the Senate Committee on Labor and Human Resources
May 16, 1996

Mr. Chairman and Members of the Committee:

I am Dr. Ciro Sumaya, Administrator of the Health Resources and Services Administration (HRSA). I am accompanied this morning by Dr. Audrey Nora, Director of HRSA's Maternal and Child Health Bureau (MCHB) and Dr. Thurma McCann, Director of MCHB's Division of Healthy Start. The Division of Healthy Start provides leadership and administration of the Healthy Start Initiative.

I am pleased to have this opportunity to share with you our efforts to reduce infant mortality in the United States through a demonstration program called the Healthy Start Initiative. In my testimony today, I will summarize the progress Healthy Start has made toward improving maternal and infant health in 22 communities across the country and describe the Department's plan to benefit from what we have learned.

Infant mortality--the death of babies before their first birthday--has been a tragic public health problem during the past 100 years that continues to be among the highest National priorities. It is addressed through both research and activities that seek to reduce the numbers.

During this past century, progress has been made through public and private studies and grant programs. Nevertheless, the United States continues to have one of the highest infant mortality rates among industrialized nations: the United States infant mortality rate ranks 23rd compared to other industrialized nations, with countries such as Northern Ireland, Belgium, Japan, and Singapore having lower infant mortality rates than we do. And there is a large disparity between the infant mortality rates for some minority populations and the general population. For example, the infant mortality rate of African-Americans is more than twice that of whites.

In 1989, a White House Task Force on Infant Mortality recommended that actions be taken to address persistently high infant mortality rates in this Nation. A HRSA-convened Interagency Committee on Want Mortality more specifically recommended targeting the reduction of high infant death rates associated with ethnic and racial populations. Healthy Start emerged as a demonstration program in 1991, with funds appropriated initially under P. L. 102-27, "The Dire Emergency Supplemental Appropriations Act for FY 1991," and renewed in annual Labor-HHS appropriations bills ever since.

The Healthy Start program was based on the premise that new community-based strategies were needed and should come from communities in order to attack the causes of infant mortality and it major precursor, low birthweight, especially among high-risk- populations. The five principles underlying Healthy Start's strategies are: innovation; community commitment and involvement; increased access to health care; service integration; and personal responsibility. The program was designed as a unique attempt to pull together the working commitment of local families, volunteers, nonprofit organizations, and private companies, in addition to the relevant health care and social service providers.

Applicants for Healthy Start grants were sought among urban and rural communities with infant mortality rates at least 1.5 times the national average. In the fall of 1991, 15 applicants (13 urban and 2 rural) were awarded grants with the goal of reducing infant mortality in their project areas by 50 percent over a 5-year period. FY 1991 funds supported year-long comprehensive planning activities the projects began serving clients 'in FY 1993.

Based on strong bipartisan support for Healthy Start and a firm commitment by the Clinton Administration to reduce infant mortality, in late 1994, 7 additional communities (5 urban and 2 rural) were awarded Healthy Start Special Projects grants. These communities had infant mortality rates as high as the original 15 projects, and already had operational community consortia and infant mortality reduction programs in place. The goal of these Special Project grants is to significantly reduce infant mortality rates in their target areas over a two-year period. Because these 7 additional communities had a stable infrastructure and plan of action, federal funds reinforced their ability to be more targeted in their efforts to reduce infant mortality.

The 22 current Healthy Start projects serve communities from Florida to California, Boston to Birmingham, the Northern Plains to the Mississippi Delta. Over the 3 operational years of FY 1993- 1995, the projects have translated the concept of community-based service integration into a wide variety of infant mortality reduction strategies, each tailored to address unique community needs and to overcome barriers to care. These programs and activities have addressed the following objectives:

To significantly reduce infant mortality and increase the number of women receiving early prenatal care. The 1993-1994 provisional vital statistics, as reported by the 15 original Healthy Start projects, indicate some success in reduction of infant mortality rates across the sites, as compared to the 1984-1988 baseline, although the precise contribution of Healthy Start funding cannot yet be measured. Many projects also recorded fewer low birthweight infants; more women abstaining from smoking, alcohol and drugs during pregnancy; and substantial increases in the number of women receiving adequate prenatal care.

To build and strengthen community-based systems of care. Healthy Start challenges communities to actively address the medical, behavioral and psychosocial needs of women and infants. Each project has developed a strong coalition of local and State governments, providers, corporations and businesses, schools, religious groups, and neighborhood organizations. These coalitions help guide the local projects, offer resources to support programs and provide contacts to support efforts to sustain the programs after Federal funding ends.

Example: In Philadelphia, 65 community-based organizations actively participate.in the Philadelphia Healthy Start Provider Council, which facilitates collaboration and communication among all coalition members.

Example: In Cleveland local residents act as "Neighborhood Consortia Builders" to motivate members of the community and area businesses to play an active financial role in their Healthy Start project.

To increase access to and utilization of quality primary care and support services. Healthy Start projects have enhanced service delivery systems by integrating existing programs, including the services of State/local maternal and child health agencies and community health centers. In many of these communities, Healthy Start projects also expanded provider capacity with the services of obstetricians/gynecologists, perinatologists, pediatricians, advanced practice nurses and other professionals. Clinics' and providers' visiting hours have been expanded. To encourage women to take advantage of these health care and support services, each Healthy, Start project has developed extensive outreach and case management programs.

Some projects employ and train community residents as outreach workers to seek out pregnant women and families and oversee their experiences as Healthy Start clients. Since these outreach workers are also residents of the target neighborhoods, the), speak the language of the community and know first-hand how to reach those who most need the help.

Example: Pittsburgh Healthy Start workers go to local banks on paydays to do prenatal care registration and to Laundromats, where outreach workers have an opportunity to talk with women.

Example: At the Northern Plains site-- which provides services to 19 Native American tribal communities in Iowa, North Dakota, South Dakota and Nebraska--case managers help women through pregnancy, childbirth and the challenge of new parenthood. me program has yielded fewer pre-term births; increased involvement by males and other community members; and increased immunization rates.

To create enabling services and coordinate existing programs that overcome barriers to health care. Healthy Start projects offer their clients a range of support services, including onsite Medicaid/WIC eligibility certification, transportation, child care, parenting information nutrition education, peer support for young parents, adolescent empowerment and self-esteem activities, home visiting, male involvement programs, substance abuse treatment and counseling, housing and employment assistance.

Example: Northwest Indiana Healthy Start transports clients to prenatal care and pediatric appointments in mobile "MOM" vans.

Example: The Baltimore City Healthy Start encourages men to be involved in their partners' pregnancies and their children's lives through its Men's Services Program, which has served as a model for the Nation. The program requires fathers to attend prenatal care appointments and parenting classes, while offering them a therapeutic support group in which to share their feelings, successes and frustrations about fatherhood.

To address the differences in the health and infant mortality rates between minorities and the general population. The lack of cultural sensitivity and the ability to reach out to minority population groups often have impeded die delivery of prenatal services. The projects have developed culturally sensitive "one-stop" service centers within the community to ensure that services are provided in a manner that is comfortable to culturally diverse populations.

Example: The Chicago project, which has the highest concentration of Hispanics, has established Esperanza Hope, a "one-stop" shop with comprehensive bilingual staff. This center has already reached capacity and has a waiting list for prenatal care. These centers sponsor ethnic ceremonies, activities and festivals and produce educational materials in languages appropriate for their clientele.

Example: In New Orleans, with its unique cultural heritage, Nanans (godmothers) and Parrains (godfathers) identify residents who are pregnant facilitate their entry into services, often transport the clients to care; and provide counseling and health education.

In 1993, HRSA entered into a contract with Mathematica Policy Research, Inc. to conduct cross-site evaluation of the 15 original Healthy Start projects This national evaluation consists of both a process and outcome analysis. The basic questions to be addressed are: Did the Healthy Start program succeed? If so, why? If not, why not? And what would be required for a similar intervention to succeed in another setting?

The process evaluation of Healthy Start will detail the individual characteristics of the original fifteen Healthy Start projects, their health and social service infrastructure, organizational characteristics, and descriptive information about die type and scope of local interventions.

The outcome evaluation entails a quantitative analysis of the overall success of the Healthy Start program through assessments of multiple program outcomes such as infant mortality, low birthweight incidence, and improved maternal and infant health, using client- specific data as well as secondary data sources. The national evaluation is a 5-year effort, with a final report due in 1998. To date, the following national evaluation tasks have been completed:

  • Site visits in 1994 and 1996, with telephone follow-ups in 1995,

  • Focus groups of providers and consumers at all project sites,

  • Postpartum survey of approximately 2,800 women,

  • Selection of comparison sites,

  • Collection of client level data,

  • Meetings of Technical Advisory Group in 1994, 1995, and 1996, to advise on details of the study,

  • Compilation of services available in each Healthy Start project site,

  • Preparation of first and second year annual reports highlighting the implementation and operational phases of the Healthy Start program, and

  • Initial assessments of the sustainability efforts at each project site.

In addition to the national evaluation, the 15 original Healthy Start projects have the administrative option of conducting local evaluations. Each of the Special Projects is required to conduct local evaluation. These evaluations are designed to monitor the implementation of project interventions and/or assess more site- specific intervention strategies. A local Fetal and Infant Mortality Review process is also being conducted utilizing both community and professional committees to provide timely feedback on project interventions.

The Healthy Start Initiative also features an aggressive national and local public information and education component that raises awareness of the problem of infant mortality and promotes prenatal care and other healthy behaviors. The highlight is a national public service campaign, developed with the assistance of the Advertising Council. A recently developed set of public service advertisements, which will be released this summer, urges women to avoid putting their baby's health "on the line" by seeking early and regular prenatal care. The campaign will feature two new toll-free numbers - one for English-speaking callers and one for Spanish-speaking callers. These national prenatal care hotlines will connect callers to the Healthy Start project or State maternal and child health office closest to where they live.

When we look at Healthy Start, we see an Initiative that has been instrumental in reforming systems of care in 22 communities. Those benefitting from Healthy SW services range from women of childbearing age and infants to community members throughout the Nation. Consider the sheer number of people served in 1995 alone:

  • 114,000 women of childbearing age received Healthy Start services.

  • 18,000 teens participated in school-based health and/or teen pregnancy prevention programs.

  • 48,000 adolescents participated in various other risk prevention programs.

  • Over 20,000 babies were born to Healthy Start clients.

  • 212,000 prenatal care encounters and 85,000 pediatric contacts were provided.

  • 32,000 families received transportation assistance to access needed services.

  • 16,000 families took advantage of Healthy Start-funded child care services.

  • Community outreach activities reached over 188,000 residents.

  • Public education and media activities reached over 12 million residents.

As the initial Healthy Start demonstrations conclude, we in HRSA are providing technical assistance to the projects in a number of ways designed to sustain and replicate effective program models to decrease infant mortality, including:

  • Assistance in making the Healthy Start program a permanent part of a community's infrastructure. This includes skillfully packaging effective infant mortality reduction strategies and marketing them to managed ;are providers.

  • Assistance in transitioning Healthy Start projects to serve as mentors for States or communities interested in establishing similar infant mortality reduction programs.

  • Assistance in developing linkages with corporations, foundations and other business entities, thereby forming enduring public and private sector partnerships.

The support of the private sector has always been a main ingredient of Healthy Start. In 1992, eleven private sector organizations including, among others, March of Dimes, Kiwanis International, The Urban League and the Washington Business Group On Health, formed a Healthy Start Steering Group to provide advice to communities in leveraging the resources of local companies and foundations. Johnson & Johnson chairs the Private Sector Steering Group. The company has not only given tangible assistance in raising public awareness of the tragic problem of infant mortality, but also sponsored a paid advertising campaign with the message "It s never too early to give your baby a Healthy Start." This public service campaign generated nationwide primetime coverage for Healthy Start and helped the local projects reach people in need. Today Johnson & Johnson is at the forefront of a new private sector effort-- to organize a national summit of community and corporate leaders. This summit will allow the Healthy Start program to showcase results and further enhance private sector involvement in the national efforts to reduce infant mortality.

It has taken several years for the Healthy Start projects to identify the unique contributing factors behind the high infant mortality rates in their target populations and to find manageable solutions for their communities. With a national investment of $460 million, the Healthy Start program has had valuable impact in addressing health, social and economic issues beyond infant mortality reduction. The Healthy Start experience with involving communities in public health programs ought to be used as a learning lab for both urban and rural communities across the country, especially for programs targeting low income and underserved populations. I can say that we have indeed broadened our knowledge base. It would be a tragedy to our Nation to halt our advances now.

Commencing with FY 1997, we plan to take the lessons learned to date and build on these successful experiences through a two-pronged approach that will maximize the use of financial resources, as well as knowledge and experience. Many of the current projects will be continued with an additional role - - that is, these projects will become "teachers", sharing the "how to" of their successes and the "what" and how "not to" from their experiences and knowledge. Their "students"will be other communities and States, suffering from the ravages of high infant mortality and low birthweight infants, desirous of putting in place the mechanisms to address their particular situation. We will call these "teachers" Healthy Start Resource Centers, mentoring to those seeking knowledge,while also continuing their effective strategies within their own communities. The second prong of our approach will be the funding of new communities to operationalize successful models applicable to their respective communities, building coalitions, and the mechanisms for sustainability - - eventually themselves becoming Resource Centers. This approach will further expand integration of State/local Title V programs and other existing maternal and child health services. We believe this plan will maximize the efficient use of resources and their impact on infant mortality, reduction.

In closing my prepared testimony, I would like to emphasize that Healthy Start is a driving force for empowering individuals and communities to take charge, promoting healthy mothers, infants and families, building stronger communities, States, and a Nation, to take on tomorrow's challenges, while conserving future resources.

This concludes my testimony. We will be happy to answer any question you may have.

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