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7

Mobilizing for Elimination

The United States has a long history of social mobilization efforts in support of tuberculosis control. Social mobilization provides for the enlistment and coordination of efforts by myriad groups and individuals. Advocacy to influence policy makers and education of patients, health care providers, and the general public are critical activities. A World Health Organization ad hoc committee identified the lack of political will on the part of national governments as a fundamental constraint to developing and sustaining effective tuberculosis control programs. Social mobilization is necessary to build and sustain political will in the United States and can lead similar efforts internationally. This chapter reviews social mobilization efforts related to tuberculosis in the United States and outlines strategies that can be used to support a tuberculosis elimination effort.

RECOMMENDATIONS

Recommendation 7.1 To build public support and sustain public interest and commitment to the elimination of tuberculosis, the committee recommends that the Centers for Disease Control and Prevention (CDC) significantly increase resources for activities to secure and sustain public understanding and support for tuberculosis elimination efforts at the national, state, and local levels, including programs to increase knowledge among targeted groups of the general public.



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Page 159 7 Mobilizing for Elimination The United States has a long history of social mobilization efforts in support of tuberculosis control. Social mobilization provides for the enlistment and coordination of efforts by myriad groups and individuals. Advocacy to influence policy makers and education of patients, health care providers, and the general public are critical activities. A World Health Organization ad hoc committee identified the lack of political will on the part of national governments as a fundamental constraint to developing and sustaining effective tuberculosis control programs. Social mobilization is necessary to build and sustain political will in the United States and can lead similar efforts internationally. This chapter reviews social mobilization efforts related to tuberculosis in the United States and outlines strategies that can be used to support a tuberculosis elimination effort. RECOMMENDATIONS Recommendation 7.1 To build public support and sustain public interest and commitment to the elimination of tuberculosis, the committee recommends that the Centers for Disease Control and Prevention (CDC) significantly increase resources for activities to secure and sustain public understanding and support for tuberculosis elimination efforts at the national, state, and local levels, including programs to increase knowledge among targeted groups of the general public.

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Page 160 Recommendation 7.2 To increase the effectiveness of mobilization efforts the committee recommends that the National Coalition for the Elimination of Tuberculosis continue to provide leadership and oversight and that CDC continue to work in collaboration with the coalition to secure the support and participation of nontraditional public health partners, ensure the development of state and local coalitions, and evaluate public understanding and support for tuberculosis elimination efforts, with the assistance of public opinion research experts. Recommendation 7.3 To assess the impacts of these recommendations and to measure progress toward accomplishing the elimination of tuberculosis, the committee recommends that, 3 years after the publication of this report and periodically thereafter, the Office of the Secretary of Health and Human Services conduct an evaluation of the actions taken in response to the recommendations in this report. Social mobilization has been identified as a vital prerequisite to accelerating the decline of tuberculosis in the United States. In March 1998, the World Health Organization convened an ad hoc committee on tuberculosis to analyze individual countries' abilities to reach year 2000 targets for tuberculosis control. Although the committee's focus was on the 22 so-called high burden countries that account for the majority of the world's burden of tuberculosis, the committee's major findings also apply to low-burden countries such as the United States. The committee found: Intensified technical efforts will not by themselves bring about the acceleration and expansion needed for tuberculosis control programs. This Committee has identified six principal constraints regarding action by health authorities. These are financial shortages, human resource problems, organizational factors, lack of a secure supply of quality anti-TB drugs, and public information gaps about TB's danger. The most fundamental constraint is the lack of political will to develop and sustain effective TB programs. (Emphasis added) (World Health Organization, 1998) The Ad Hoc Committee identified four factors important to creating and sustaining political will: 1. Popular Perception: The public should recognize tuberculosis as a priority problem with an achievable solution. 2. Technical Consensus. The consensus among the technical and scientific communities is thought to be indispensable. Such consensus al

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Page 161 lows for consistent information to reach policy makers across all levels of government 3. External Concern. External concern relies on the use of community leaders to communicate need to policy makers. 4. Media Interest. The Committee found the use of the media to create a climate of public interest and concern critical to sustaining policy maker and government interest. All four factors represent challenges in social mobilization in the United States. Public opinion research clearly shows that the popular perception of tuberculosis is that it is not a problem in the United States (CDC, unpublished data). In part this is due to the demographics of the disease, the majority of those afflicted with tuberculosis are at the margins of society, and to the fact that the disease is once again in decline. There is a technical consensus around tuberculosis as represented by the guidelines jointly endorsed by the American Thoracic Society, the Centers for Disease Control and Prevention, the American Academy of Pediatrics, and the Infectious Diseases Society. However, there has been difficulty communicating this consensus while maintaining media interest. News coverage naturally gravitates to unusual and exciting situations. For example, although there is technical consensus that the risk for tuberculosis infection aboard airplanes is low, news coverage has made some people afraid to fly. In another example, although multidrug resistant tuberculosis is a very serious problem, with a potential to worsen in the future, it represents a small and decreasing number of cases in the United States. Still the news media devotes a large part of its coverage to this type of tuberculosis, which generates a frenzied call for tuberculin skin testing in suburban schools. Media interest has to be maintained while communicating information accurately. Finally, external concern is very weak at the national level. Since the American Tuberculosis Association became the American Lung Association, the Christmas Seal Campaign and the selection of the national chairman has focused on other issues other than tuberculosis. External concern has generally tended to come from local groupings and ad hoc alliances. The funding increase for tuberculosis in the 1990s is in large part attributable to the interaction between tuberculosis and HIV. Because of this interaction, AIDS activists provided support for the TB community in obtaining more resources. On a local level, a number of state and city lung associations are active advocates and supporters of the tuberculosis program. In South Carolina, the Lung Association has provided resources for the incentives and enablers program that has served as a model to much of the rest of the nation. In California, as described in the site visit notes, the San Diego Lung Association has been a key supporter in the housing program and in developing community

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Page 162 support for the tuberculosis program. Finally, a recently formed coalition in Washington State has been an effective advocate for the tuberculosis program. The Impact of Social Mobilization Please refer to the page image for an unflawed representation of this content. In 1944, the U.S. Congress passed the Public Health Service Act, which in part, authorized the establishment of a federal Tuberculosis Control Program. The program provided grants to state health departments for tuberculosis control activities. In 1961, Congress approved legislation providing additional funds through categorical grants. At the height of the “project grant” era in 1969, the annual rate of reduction of new cases was 8.2 percent. The Program was phased out with no monies available after 1972. By 1980, the impact of the phase-out was apparent—the annual rate of reduction of new cases had slowed to 5.1 percent and new cases actually increased 2% for African Americans. The American Lung Association (ALA) made the re-creation of a separate funding authority for tuberculosis a priority throughout the 1970s. The momentum of the program was lost, however, and the rate reduction slowed even further and by 1982 was only 3.2 percent. ALA increased its social mobilization and advocacy efforts in late 1980 with the opening of a full-time office in Washington, D.C. It first priority was tuberculosis funding. In April 1981 ALA sponsored its first Advocacy Leadership Conference for its state and local associations. Plans were made to approach the tuberculosis funding issue using all available legislative vehicles. Representative Henry Waxman of California, Chair of the House Subcommittee on Health, sponsored legislation to authorize Tuberculosis Project Grants, and ALA's nationwide volunteer core was mobilized. Unfortunately, the 96th U.S. Congress failed to act. At the beginning of the 97th U.S. Congress Mr. Waxman again introduced legislation. But this time, ALA volunteers in Utah secured an agreement from Senator Orrin Hatch (Chair of the Senate Committee on Labor and Human Resources) to sponsor similar legislation in the Senate. ALA also mobilized other organizations, including the American Public Health Association as well as the ALA's own medical section, the American Thoracic Society. The media was enlisted to educate the public and policy makers about the problem of tuberculosis in key communities as well as nationwide. Much of the mobilization effort centered on explaining the problems of tuberculosis in refugee populations. In August 1981, 250 congressional conferees agreed to the conference report for H.R. 3982 just prior to the summer recess. The Program for Tuberculosis Project Grants was authorized at $9 million in fiscal year 1982, $10 million in fiscal year 1983, and $11 million in fiscal year 1984. However, no funds were included in any of the appropriations bills going forward. In March 1982, at a conference marking the 100th anniversary of the date that Robert Koch presented his now famous paper on the etiology of tuberculosis, ALA launched plans to secure an appropriation for the new program. A presidential veto of the final fiscal year 1982 Supplemental Appropriations bill allowed ALA to mobilize one last time. The effort succeeded with the signing, in September 1982, of the final fiscal year 1982 Supplemental Appropriations bill which provided $1 million for tuberculosis control efforts. Following shortly thereafter was an appropriation for fiscal year 1983 of $5 million. ALA's mobilization campaign resulted in a clear awareness by Congress of the tuberculosis problem and the national commitment needed for its control. The House Report for the fiscal year 1982 Supplemental Appropriations bill noted: The additional funds are to be used for tuberculosis control activities. The Committee is concerned about the incidence of Tuberculosis in this country. Over the past three year, there has been a leveling off of the slow but steady decline in tuberculosis cases which had been evident in the country for decades. The disease continues to be a major health problem despite the fact that medical research has provided us with effective methods for its prevention and control. Our failure to prevent and control Tuberculosis is measure by the 27,412 new cases reported in 1981. The Senate Report for the FY 82 Supplemental bill noted: Each year nearly 30,000 people develop tuberculosis and require long-term treatment. For nearly three decades the number of cases in the United States has been decreasing, but this trend has stopped and essentially leveled off since 1979. Also, of concern to the Committee is that people living in our cities are at nearly twice the risk of the general population. The problem is further complicated by drug resistance, new sources of infection, and most disturbing, the transmission of the disease to children. To sustain adequate political will, social mobilization becomes a critical component in any effort to eliminate tuberculosis (see the box The Impact of Social Mobilization). The purpose of such mobilization is to help build and sustain adequate political and financial support by key leaders and policy makers as well as to engage the active participation and cooperation of health care providers, members of high-risk groups, and patients themselves in a combined assault on the disease.

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Page 163 Mobilization involves the enlistment and coordination of efforts by myriad groups and persons, including nontraditional partners outside of the public and private health sectors. It includes advocacy to influence policy makers as well as education of patients, high-risk groups, health care providers and the general public. To build the level of political will that is required, all relevant sectors of society are needed to help and must be convinced that it is in their interest to achieve this worthwhile goal. The United States has a long history of social mobilization efforts tied to tuberculosis control. The National Association for the Study and Prevention of Tuberculosis (NASPT) used social mobilization techniques to

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Page 164 promote the establishment of public health departments and tuberculosis control programs in every community in the country at the beginning of the 20th century. The NASPT also urged the use of taxes to make tuberculosis care free to all patients. An important undertaking of NASPT was surveys documenting the morbidity and mortality from tuberculosis (see Chapter 2). These surveys served many purposes. First, they provided much needed information to the public about tuberculosis and the difficulties that its control presented. More important, however, the surveys formed the basis for the first social mobilization efforts, sponsored by NASPT, to increase public funding for tuberculosis control. In 1916, NASPT passed a resolution calling for federal government participation in tuberculosis control, indicating that it is “desirable and necessary” and that “the proper federal agency for the purpose is the U.S. Public Health Service” (Shyrock, 1957). That year, a bill providing that a division of tuberculosis control be set up in the U.S. Public Health Service was introduced in the U.S. House of Representatives. It was not until 1944, however, that such a division was created. Federal funding of state tuberculosis efforts began in 1961. However, after a decade of support, funding was phased out when all state categorical public health funding was consolidated into block grants. Organizations sponsoring the majority of the early social mobilization efforts turned to other public health priorities, and policy makers grew complacent as a result of the steady 5–6% annual decline in case rates. By the late 1970s, little federal or state funding was dedicated to tuberculosis control (see Chapter 2). In 1982, the U.S. Congress authorized once again a dedicated source of funding for tuberculosis control programs, Project Grants for Tuberculosis Preventive Health Projects (Public Health Service Act 42 section 317 E). Without the social mobilization efforts and political will of earlier in the century, funding for fiscal year 1982 was set at $1 million. The continued lack of social mobilization efforts would result in the continued low level of funding as the resurgence of tuberculosis appeared. In 1984, James Mason, who was then director of the Centers for Disease Control, called upon the public health community to develop a plan for the elimination of tuberculosis in the United States. The resulting report A Strategic Plan for the Elimination of Tuberculosis in the United States (Centers for Disease Control, 1989), was published in April 1989. The plan provided a detailed road map for the re-creation of the public health infrastructure critical to the control of tuberculosis. More importantly, the plan recognized the integral relationship between appropriate social mobilization and the sustainability of political will key to effective tuberculosis control (Centers for Disease Control, 1989).

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Page 165 Although identified as a methodology for technology assessment and transfer, the voluntary sector was challenged to revitalize social mobilization efforts, including education and advocacy activities. This sector was also called upon to form coalitions in support of increased resources for tuberculosis control programs. The media was also called upon to provide appropriate coverage on the advances in the diagnosis, treatment, and prevention of tuberculosis to increase support for tuberculosis programs (Centers for Disease Control, 1989). The National Coalition for the Elimination of Tuberculosis (NCET) was established by the American Lung Association with support from the Robert Wood Johnson Foundation to reengineer the social mobilization effort. The mobilization efforts of NCET combined with the blueprint for program design in the strategic plan are, in large part, responsible for the significant increase in tuberculosis control resources described in Chapter 2 (see the box National Coalition to Eliminate Tuberculosis). The need for social mobilization is again recognized in the revision of the strategic plan, Tuberculosis Elimination Revisited: Obstacles, Opportunities and a Renewed Commitment (Centers for Disease Control, 1999). NCET is challenged to continue to advocate for resources for effective tuberculosis control and is called upon to expand partnerships not only at the state and local levels, but also with nontraditional partners (Centers for Disease Control, 1999). To reinvigorate social mobilization efforts for tuberculosis control, specific strategies must be devised for reaching each of the groups in the public and private sectors. The national goal for eliminating tuberculosis and its rationale must be articulated clearly and publicized widely so that the goal is understood and sufficiently supported. Progress toward achieving the goal must also be communicated to these groups. A set of no more than three or four simple indicators of progress toward tuberculosis elimination (as described in Chapter 3) should be developed and widely published so that progress or its absence are clear to all. Also, a review of progress toward accomplishing the goals set forth in this report, conducted through the Office of the Secretary of Health and Human Services, should be conducted 3 years from the publication of this report. Again, the progress or lack thereof should be widely published. Specific target audiences and objectives for mobilization include: 1. members of the U.S. Congress, governors, state legislators, and mayors (increased political and financial support); 2. the Centers for Disease Control and Prevention, National Institutes of Health, and other federal government agencies (awareness and increased efforts);

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Page 166 3. state and local health departments (awareness and increased efforts); 4. professional societies (awareness and political support); 5. nongovernmental organizations (awareness and political support); 6. schools of medicine and schools of public health (awareness and increased efforts); 7. members of the media (awareness and political support); 8. members of high-risk populations (awareness); and 9. the general public (awareness and political support). NATIONAL COALITION TO ELIMINATE TUBERCULOSIS 1991 to Present Please refer to the page image for an unflawed representation of this content. In 1991, in response to the resurgence of tuberculosis, the National Coalition to Eliminate Tuberculosis (NCET) was formed. Coalition members come from all segments of civil society including national, state, and local public health, medical professional, health care, and service organizations. The Washington Office of the American Lung Association and the American Thoracic Society serve as the coalition's current secretariat. The original objectives of the National Coalition to Eliminate Tuberculosis included: ensure that health care providers, especially those who practice in communities heavily affected by tuberculosis are knowledgeable about the diagnosis, treatment and prevention of tuberculosis; increase public awareness, especially in heavily affected communities, of the magnitude of the tuberculosis problem in the United States; advocate for adequate public and private response to achieve tuberculosis elimination; and encourage nongovernmental organizations, especially those working at the grassroots level, to commit to the elimination of tuberculosis, and support their efforts in this endeavor. In 1997 the NCET membership was surveyed to ascertain support for the coalition's mission and continuing membership interest in the coalition. The majority of the members continue to support the mission of the coalition. However, the majority also believed that the Coalition's objectives needed to change given the changing circumstances of tuberculosis control in the United States. For example, the majority of members ranked the first objective low, citing the fact that the Model Centers for Tuberculosis Control that had been formed would provide education and training opportunities. Members ranked advocacy and coalition building as the highest activity for the coalition, especially at the state level. Members point to the need for information with consistent messages to explain tuberculosis as a “hometown” issue to community leaders and policy makers. This can also build upon successes in states and localities in supporting tuberculosis program activities in South Carolina, California, and Washington State. The NCET is developing training and advocacy guides for use by the local members at the statehouse level. These guides are scheduled for release at the American Lung Association/American Thoracic Society International Conference in May, 2000.

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Page 167 Key messages from this report are that even though tuberculosis is in decline, pressure to eliminate the disease needs to be increased or there will be a resurgence as there has been in the past. Issues to be addressed by the policy makers, as abstracted from the recommendations include: Adequate funding needs to be maintained (categorical at the federal level) and adjusted for inflation. State regulations mandating the completion of treatment need to be kept current. Regionalizing activities and using contracts with the private sector where this will enhance delivery of services. Providing educational resources to maintain excellence in tuberculosis services. Increasing resources for the prevention of tuberculosis through programs of targeted screening and treatment of latent infection, including enhanced programs focused on contacts to infectious cases, newly arriving immigrants from countries with high rates of tuberculosis, and residents of correctional facilities and other congregate settings. Increasing resources for research especially for the development of new diagnostic tools and treatments for latent infection and the development of a vaccine to prevent infection. Increasing involvement in support of global tuberculosis control through multilateral and bilateral agreements. As has been demonstrated in the past century of control efforts, social mobilization is critical to sustaining tuberculosis control programs. Moreover, the tuberculosis control community must pay as much attention to social mobilization efforts it pays to the technical, medical, and scientific issues. REFERENCES Centers for Disease Control and Prevention . 1989 . A strategic plan for the elimination of tuberculosis in the United States . Morbid Mortal Weekly Rep 38(S-3) : 1–25 . Centers for Disease Control and Prevention . 1999 . Tuberculosis elimination revisited: Obstacles, opportunities and a renewed commitment . Morbid Mortal Weekly Rep 48(RR-9) : 1–13 . Shyrock, R.H. 1957 . National Tuberculosis Association: 1904–1954 . New York : National Tuberculosis Association . World Health Organization Global Tuberculosis Program . 1998 . Report of the ad hoc committee on the tuberculosis epidemic, 17–19 March, 1998, London .

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