Alianza Contra El Asma Pediátrica en Puerto Rico

Laying the Groundwork

“Before Alianza, there was little experience with collaborative work in San Juan. Allies support enabled the formation of the community-based coalition and the development of a comprehensive plan to address asthma,” says project director Marielena Lara. The plan was much needed. Puerto Rican children bear a much higher burden of asthma than other children in the United States, and children in Luis Llorén Torres—the largest housing project in the Caribbean—suffer from even higher asthma rates: a staggering 40% have been diagnosed with the chronic disease.

While it is not yet clear why Puerto Rico’s asthma burden is so significant, it is clear that an integrated, community-wide approach to control and prevention is necessary. With support from the Robert Wood Johnson Foundation, Allies Against Asthma Puerto Rico led the way. In the project’s first phase, a coalition lead by RAND, University of Puerto Rico, and Luis Lloréns Torres Community Council worked together to lay the groundwork for reduced asthma-related hospitalizations, emergency department visits and school absences; increased quality of life for children with asthma and their families; and control of symptoms. The group described four goals:

• Empower children with asthma and their families or caregivers;
• Increase community awareness and knowledge about asthma;
• Improve access, quality and financing of asthma health care services; and
• Improve collaboration between health care systems, schools, child-care centers and other private and public community agencies.

Gaining Trust

From the beginning, Lara and her colleagues understood that outreach at Luis Lloréns Torres must come from within. The coalition recruited and trained community health workers from within the housing project, and gradually gained trust through community-friendly health fairs and educational activities that featured entertainment and other incentives for community-wide attendance.

“Providing services within the community was key,” says Lara. “By linking with the schools, combining entertainment with education and emphasizing ‘real world’ outreach, Alianza was able to connect with people. It’s what we would call an ‘encuentro familiar.’”

On-site children’s activities raise asthma awareness.

At the same time, the coalition achieved an agreement with a local insurer to pilot enhanced asthma services and health care coverage for the intervention community. Medical Card Systems (MCS) provided medications and equipment to all Alianza families. Other local groups made in-kind and cash contributions in support of Alianza activities. In the end, the coalition reached a large percentage of Luis Lloréns Torres residents.

During the period of support:

• 226 children received an asthma evaluation and education session from a nurse clinical coordinator.
• 1,300 families received a community-designed newsletter with information about parents’ rights and responsibilities and resources for asthma control.
• 117 families participated in a daylong event of recreational and educational activities centered on asthma.
• 323 children with asthma participated in a community-based asthma prevalence survey, which measured pre- and post-intervention morbidity, health care use and barriers in the community as compared to those of a controlled community (234 children participated in the control group).

Growing Stronger

The foundation built by Alianza helped spawn other support for children with asthma in Puerto Rico. Says one steering committee member, “We have been successful in establishing a sense of mission. The members of Alianza understand the importance of fighting pediatric asthma through joint efforts and a collaborative will.” El Red de Asma Infantil, a program that grew out of Alianza, recently gained funding from the Merck Childhood Asthma Network. The program will focus on two low-income communities on the island, and is designed to improve access to quality care; to make homes, schools and communities more asthma friendly; and to reduce disparities in childhood asthma outcomes. Alianza is the lead agency, working with RAND Health and the FILIUS Institute of the University of Puerto Rico.

Summary

Organizations in the coalition included: Puerto Rico Department of Health; San Juan Head Start; Medical Card System; San Jorge Children’s Hospital; Puerto Rico American Lung Association; Americorps Vista; Puerto Rico Office of Patients’ Rights; Luis Lloréns Torres Police Department; Diagnostic Center, Luis Lloréns Torres Community; Environmental Protection Agency; Universidad de Puerto Rico (UPR) Media Sciences Campus; FILIUS Institute-CIReC, UPR; Martinal Properties, Luis Lloréns Torres Community; Banco Popular de Puerto Rico; and APNI, Inc.

Strategies and Programs

• Asthma education for children and families through support groups; health fairs; summer camps; Herramientas de Salud, a community-designed bulletin about asthma; and an Open Airways curriculum for teachers and students in fourth to sixth grade
• Community health worker program
• Improved access to care, medications and equipment through partnership with Medical Card Systems (MCS), the local managed care organization. MCS provided medications and equipment to all Alianza families.
• Clinical care coordination for participating families
• PACE training for local health care providers

Children and Families Served

Of the 8,807 people in Luis Lloréns Torres community in San Juan, more than 3,500 are children. Of those 3,500, more than 1,400 (40%) have asthma.

Results

• Reduced emergency department visits during the time the program was implemented.
• Developed stronger relationships among coalition members.
• Influenced the passage of Puerto Rico Law 56, which legislates a child’s right to take asthma medication in school.

Lessons Learned

• Respect all parties and address their concerns, needs and suggestions.
• Structure the coalition so that all parties gain from it.
• Use neutral professional mediators when conflicts arise.
• Develop a common mission.
• Find ways to engage families and break down barriers, such as hosting health fairs and using community health workers to visit families in their homes.
• Hire from within the community and provide training to community members if they lack certain skills or backgrounds for working with the program.