MEMORANDUM. THE CAMPAIGN TO ERADICATE FISTULA INTERESTED PARTIES Dr. Lewis Wall and Michael Horowitz

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1 MEMORANDUM Re: To: From: THE CAMPAIGN TO ERADICATE FISTULA INTERESTED PARTIES Dr. Lewis Wall and Michael Horowitz I. Authors of the Memorandum Lewis Wall, the founder and president of the Worldwide Fistula Fund, is a physician who holds joint appointments as Professor of Obstetrics and Gynecology in the School of Medicine, and Professor of Anthropology in the College of Arts and Sciences, at Washington University in St. Louis. On an unpaid basis, he has carried out successful surgery on fistula patients in many African countries and has also published extensively on the nature, causation and treatment of fistula. With support from the United States Agency for International Development, Dr. Wall has collaborated in developing a basic, standardized fistula surgery training curriculum and is currently co-authoring a textbook of fistula surgery for the developing world. Through the Worldwide Fistula Fund, he is engaged in the construction of a model fistula surgery and training center in rural Niger which is designed to be replicable throughout Africa in areas where fistulas are prevalent. Michael Horowitz is a Senior Fellow at The Hudson Institute, Washington, DC. He has had wide experience with the Federal Government as a practicing attorney and as General Counsel of the Office of Management and Budget. Mr. Horowitz has been an active leader in many domestic and international human rights initiatives and has played instrumental roles in organizing the progressive-conservative and secular-religious coalitions responsible for the passage of such laws as the International Religious Freedom Act, the Trafficking Victims Protection Act, the Prison Rape Elimination Act, the Sudan Peace Act, the North Korea Human Rights Act, the Advance Democracy Act, and the Internet Freedom Initiative. II. Nature and Extent of the Fistula Problem An obstetric fistula is a catastrophic childbirth injury that now occurs primarily in sub-saharan Africa. The condition is a complication of obstructed labor when the tissues that normally separate a woman s vagina from her bladder or rectum are destroyed by prolonged pressure from the fetal head trapped in the birth canal. The development of a fistula leads to continuous urinary and/or fecal incontinence. The most common form of fistula is a vesico-vaginal fistula, commonly referred to as a VVF. The best available estimate suggests that between 3 and 4 million women (some as young as 12 years of age) are currently afflicted with this condition. As many as

2 2 130,000 new cases are estimated to occur each year, primarily in sub-saharan Africa. Obstetric fistula is thus a scourge of epidemic proportions that afflicts the poorest women in the poorest parts of the world. Although any woman can develop a fistula if obstetric complications arise and competent medical help is not readily available, young teenage girls (who reach reproductive age before their bodies are fully capable of handling the demands of childbirth) are most at risk for fistula formation. The vulnerability of such girls to fistula in Africa is made worse by three factors: o A tradition of child marriage, which dramatically increases the risk of early pregnancy; o Widespread subjection of young girls to female genital cutting practices for deeply-entrenched cultural or allegedly therapeutic reasons; and o The persistent denial to girls and women of basic rights, education, the capacity for self-determination, and adequate health care. The consequences of fistulas (which do not heal by themselves) are devastating. The young afflicted women are drenched in a continuous flow of urine and feces over which they have no control. Their skin becomes excoriated and they develop painful ulcers in their most private and sensitive areas. In spite of their best efforts to keep themselves clean, they emit rank, offensive odors which cause them to become isolated pariahs even in the most impoverished villages. These tragic circumstances which begin with a stillborn child lead to involuntary divorce, isolation from family, ostracism by society, deepening poverty, malnutrition, worsening physical health, and a life of unimaginable despair that sometimes ends in suicide. Because fistulas are not fatal in and of themselves, most of these victims live to an advanced age in this isolated and horrific condition. This is the life now lived by as many as four million African girls and women with their numbers increasing by more than one hundred thousand each year! That obstetric fistula is both widespread and persistent is intolerable, if only because education and outreach programs can radically limit its incidence, and because the vast majority of obstetric fistulas can be successfully treated using low-technology surgery. At a cost of a few hundred dollars per case!

3 3 II. The Incidence and Prevalence of Fistula The scourge of fistula exists in epidemic proportions and continues to grow for three principal reasons: o In parts of the world where fistula is commonplace, almost no facilities exist to provide adequate treatment. Few doctors have adequate training or sufficient motivation to deal with this condition.; o Few outreach programs exist to educate local communities and national governments about the grave and avoidable risks created by child marriages, female genital mutilation, and prolonged labor ; and, most critically, o Previous efforts to eradicate fistula have been ineffective because they have been: local in character; uncoordinated; caught up in intractable debates over U.N. competencies; without an overall, integrated, Africa-wide strategy; and, most of all, undertaken without a strategic effort to create a broad, bipartisan political consensus in the United States to tackle the issue. III. Basis of the Campaign to Eradicate Fistula A Campaign to Eradicate Fistula can be launched, and can succeed, for the following reasons: o Obstetric fistula is both curable and preventable; o In the context of existing public health initiatives and general budgetary constraints, the resources required to eradicate fistula are relatively modest and clearly available; and o A carefully thought-out, effectively organized plan of action can generate sufficient political will and public support to secure the required support. The Campaign to Eradicate Fistula proposed in this Memorandum has extraordinary cost-benefit ratios. In addition to its direct effect of eliminating one of the world s most horrific, treatable, and preventable medical conditions, the Campaign has the potential to advance the emancipation and empowerment of women in ways deeply

4 4 rooted in American values and in a manner that can gain long term, 21 st Century credibility for the United States, both in Africa and throughout the world. IV. Critical Elements of the Campaign: An Overview They are: o A twelve year program, with the first two years dedicated to planning and development and the final ten years dedicated to full scale operations; o A cumulative, total budget cost of $1.5-$1.6 billion over the twelve years of the program; o A major, university-based medical center, designated as the International Fistula Institute [ the Institute ], responsible for the coordination of the Campaign, including its operation and research functions and the development of relationships with African medical schools, surgeons, and government officials; o A U.S. Advisory Committee [ the Advisory Committee ] of fistula eradication activists and major national leaders of America s African- American, women s and religious communities many of whom have already expressed an enthusiastic willingness to serve, and to convene a Fistula Eradication Summit Meeting as soon as a potentially interested university center can be identified; o The construction of 40 Centers of Clinical Excellence [the Centers ] each with 40 beds -- at a cost of $2.5 million per center, based on a standard, replicable design developed by the Worldwide Fistula Fund. At least one Center will be built in each African country where fistula is a problem and each Center will be the locus of medical/surgical care for fistula patients and the training of fistula surgeons and community outreach staff. o Staffing consisting of: An Institute staff headed by a Campaign Director and three Deputy Directors the Campaign Medical Director, the Campaign Education and Outreach Director, and the Campaign Director of Administration, supported by a professional and administrative staff of persons, responsible for the administration, coordination and ultimate performance of the Campaign;

5 5 Five full time, senior surgeons, based at the Institute, responsible for the medical supervision and training of the U.S. and African surgeons assigned to the Centers and for the medical research, data collection and medical performance of the Campaign -- with one senior surgeon designated as the Campaign Medical Director; Three to five full time education and outreach coordinators, headed by a Campaign Education and Outreach Director, responsible for the program s outreach and education functions and the supervision and training of the outreach staff assigned to the Centers; A panel of senior surgeons from the United States, Africa or Europe, serving as medical liaisons with the Centers; Eighty full time post-residency U.S. surgeons (obstetrics & gynecology, urology, general surgery), each serving on a full time, twenty-eight month commitment basis at the Centers; and One hundred twenty African outreach and education staff persons, with at least two assigned to each Center. V. Critical Elements of the Campaign: Key Details A. The International Fistula Institute Administration and direction of the international campaign against fistula will be carried out at a centralized International Fistula Institute located within a major American medical center. As noted, a key responsibility of the Institute, and its Medical Director will necessarily be oversight over the training and clinical activities of the physicians and educators serving at the Centers. The Institute will also be responsible for ensuring that the Campaign is a scientific as well as a humanitarian initiative and that the progress of humanitarian medical practices at the Centers and elsewhere will be firmly grounded in scientific evidence. For this reason, the Institute will be responsible for promoting the utilization of standard clinical protocols, coordinating research efforts, facilitating data collection, overseeing multi-center randomized surgical trials, and providing the administrative hub for the overall program. Of particular note, the Institute and its

6 6 Medical Directors will be responsible for scrupulously enforcing high standards of clinical practice and ethical behavior, as set forth in the recently published code of ethics for fistula surgeons. 1 The Institute will also be responsible for an equally critical element of the Campaign: Ensuring that its Education and Outreach programs are fully monitored and that their programmatic efforts are sensitive to country and cultural variances and based on proven field results. An effective and motivated Education and Outreach program will be able to leverage and gain credibility from the successes of the Campaign s medical/surgical component. A critical mandate for the International Fistula Institute will be to develop protocols for the detection of prolonged labor so that local communities will know when obstetric difficulties are beginning and to transport laboring women to centers of higher levels of obstetric care so that fistula formation can be averted. Such protocols will need to take into account such variables as available transportation and medical facility competence, yet will also need to be simple enough to be easily promotable by the Campaign s Education and Outreach staff and fit for widespread adoption throughout Africa. It is critical to note that such a lifesaving system can be devised, and implemented, by a well organized, scientifically based and culturally sophisticated Campaign. B. Construction of the Centers of Clinical Excellence The project is designed to enlarge the capacity to repair obstetric fistulas and related childbirth injuries by developing at least one Center of Clinical Excellence in each African country where obstetric fistulas are a problem. Countries with larger populations may require more than one center. The projected goal is the creation of 40 centers distributed throughout sub-saharan Africa. The projected construction cost of such a center---a dedicated specialist facility with approximately 40 beds---is roughly $2.5 million per center. The creation of such Centers is critical for expanding patient access to fistula repair because without dedicated facilities for fistula surgery, these operations will never get done. At general hospitals, elective cases such as fistula repair are chronically bumped from the surgical schedule by a continuous string of emergencies. Thus, the case for dedicated specialist facilities is compelling. 1 Wall LL, Wilkinson J, Arrowsmith SD, Ojengbede D, Mabeya H. A Code of Ethics for the Fistula Surgeon. International Journal of Gynecology and Obstetrics 2007;101: DOI information: /j.ijgo

7 7 The process of constructing focused Centers can be streamlined by developing a standard basic design and replicating it in various countries. Based on its experience working in several African countries, The Worldwide Fistula Fund is currently constructing a model center of this kind in rural Niger. The concept of a center with a specific focus on fistula providing surgical operations using technology appropriate for Africa and designed in a modular fashion that is easily adaptable to multiple geographic locations, will allow the rapid replication of this model elsewhere. It is not necessary to construct all 40 Centers simultaneously; rather it is anticipated that this can be done in several waves of building activity spread out over the first few years of this project. The assumption is that each Center will take 2 years to move from groundbreaking to the regular provision of clinical services. Funding the on-going operation of the Centers will cost approximately $2 million per center per year. This figure includes staff salaries based on local economic considerations, as well as the costs of disposable surgical items (suture material, catheters, intravenous lines, etc) and direct patient care. C. Function of the Centers Within each participating country, the specialist fistula Centers will function as centers of training and clinical excellence. They will also function as the hub of a developing network of medical facilities within each affected country. As African surgeons are trained at these Centers, they will be integrated into local healthcare systems at which they can repair simple, uncomplicated fistulas at the local/regional level. Complicated fistula cases will be referred to the Centers. Making an integrated system of this kind work will require the buy-in and support of the Ministry of Health in each participating country and provision of an appropriate funding stream for fistula repair at the local level, which the Medical Directors and Institute leadership will, and should be able to negotiate. Structured in this way, each Center will function as a surgical multiplier to enhance the capacity of country and regional medical centers for general surgical competence and fistula care. D. Recruitment and Function of the Senior Surgeons In addition to the core group of 5 surgeon-administrators who will run the project, a board of surgical consultants consisting of academic surgeons at American medical schools will be recruited, trained, and linked to the Centers. Each designated consultant surgeon will have to make a commitment to spend a substantial portion of clinical time overseas (roughly 25% effort), working in partnership with specific Centers. These surgeons will provide academic and programmatic continuity alongside the medical director of each Center and will therefore act as stabilizing influences. These surgeons will be compensated for their efforts according to current NIH salary guidelines.

8 8 E. Recruitment, Training and Function of Post-Residency Surgeons for the Centers In addition to the board of surgical consultants mentioned in the last section, a program similar to the Peace Corps will be developed to recruit recent surgical graduates from American residency programs in obstetrics & gynecology, general surgery, urology, and other relevant surgical specialties. The individuals in this Fistula Corps will be expected to make a 28-month long commitment to this program, to include 3 months of specialized training in fistula surgery followed by 24 months of service at a designated Center, a process similar to the current Peace Corps model. These individuals will undergo a one month training program conducted at the Institute, followed by 3 months of intensive surgical training in fistula repair at a specially designated Center, after which they will be sent to the Centers where they will work for their terms of service. In countries where the Peace Corps is operational, support services and administration for this program could potentially be included within the Peace Corps organizational structure. Because of the high costs of medical education in the United States, many residents finishing surgical training who might otherwise be interested in humanitarian service overseas simply cannot afford even to consider an opportunity of this kind. This program could be made very attractive to such individuals by providing a reasonable salary (higher than they received during residency, but lower than what they would make in private practice or in an academic surgical position) combined with a program that would partially pay off accumulated student loans at a relatively generous rate. A suggested starting place would be a salary of $75,000 per year for surgeons committed to this program, plus a loan repayment program that would reduce their debt-loads by $25,000 per year for two years. If possible, the loan repayments will be treated as tax free; otherwise, the loan reduction payments will be increased to a level that will permit effective loan reductions of $25,000 per year. F. The Education and Outreach Program For the practical reasons outlined previously, the strategy to eliminate obstetric fistulas is predicated initially on the development of enhanced capacity for surgical repair in countries where fistula is commonplace. This will not only achieve the worthwhile humanitarian goal of eliminating a cause of profound suffering for women, but will build capacity from which other maternal health initiatives can be launched. The elimination of obstetric fistulas will ultimately occur by preventing their development in the first place. This process requires the identification of women who have been in labor too long, transporting them to centers where more advanced obstetric care is available, and then intervening in a timely fashion to prevent the devastating consequences of prolonged obstructed labor. It is clearly feasible to incorporate programs for education, advocacy, and prevention into the overall fistula repair initiative. Programs to prevent obstetric fistulas will need to incorporate both immediate and long-term strategies for fistula prevention. The long-term components of fistula prevention include: advocacy for programs to improve the health and nutrition of girls

9 9 and adolescents so that they enter their childbearing years as healthy as possible; campaigns to increase the educational level attained by girls, thereby raising the age at which first pregnancy occurs (thereby avoiding adolescent pregnancy) and developing more knowledgeable mothers; campaigns to end harmful traditional practices such as female genital cutting and the additional risk factors for fistula formation that result; and accessible and effective family planning programs. Programs intended to prevent fistulas from developing in current pregnancies must focus on the prompt detection of prolonged labor and immediate intervention in obstructed labor by improving access to emergency obstetric services. Such programs will need two components, varying on whether skilled trained birth attendants are available to pregnant women or whether they must rely on traditional local midwives (sometimes called traditional birth attendants ). In settings where trained birth attendants are available, fistula prevention programs must emphasize the careful monitoring of labor by application of the partograph (a simple graphic representation of the course of labor) to promote the early detection of prolonged labor and to make appropriate referrals to higher levels of obstetric care. Where traditional birth attendants are the primary caregivers for laboring women, the use of the graphic analysis of labor will be more difficult to teach due to the high prevalence of illiteracy and lack of graphic skills among this population. In this setting monitoring will also need to be taught on the basis of the old obstetric adage that The sun should not set twice on a laboring woman; that is, when a woman has been in labor for 24 hours without delivery, urgent intervention must take place. At the rural village level women in prolonged labor must be transported to medical facilities with relatively advanced obstetric capabilities. This can be facilitated by developing networks of labor monitors in each village community who are tasked with knowing which women are pregnant, when they go into labor, and who are empowered to activate an obstetrical transport network to move women in prolonged labor to the next level of obstetric care where they can be evaluated and an appropriate intervention initiated. This will require setting up community-based pregnancy surveillance systems and developing plans of action in advance of the emergency through which women in prolonged labor can be moved to centers of more advanced obstetric care. These programs will help maximize the efficiency and efficacy of the existing maternal healthcare infrastructure by combining operations research, community awareness programs, and health advocacy programs. Each of the 40 Centers will have an annual budget of $1,000,000 to implement model programs of this kind, and each will have from 2 to 4 full time staff Education and Outreach staff members. Their efforts, and the Campaign s overall education and outreach function, will also be intended to act as a catalyst to improve the overall quality of maternal health in each country where the Campaign operates.

10 10 G. The Advisory Committee There can be little doubt of the potential breath and strength of support available to initiate, support and sustain the Campaign. Major feminist leaders will join the effort on a priority basis if persuaded that the Campaign can successfully deal with what they know to be one of the most poignant, destructive and remediable conditions now suffered by girls and women. African-American leaders can be likewise engaged to deal with a remediable scourge that besets the poorest of the poor in Africa. Religious leaders of right and left have shown by their efforts on behalf of the PEPFAR Initiative that they can be engaged in an initiative to save millions of vulnerable and afflicted victims from a condition easier and far less costly to treat and eliminate than AIDS. The unspeakable lives of fistula victims tell a story that is certain, if reasonable effort is made, to engage broad national media and Congressional attention. The above factors, combined with the Campaign s ability to show the United States as a champion of women s emancipation and empowerment the development likely to be the 21 st Century s most notable achievement will make it difficult for any President not to join, support, lead and claim significant credit for it. For this to happen, the Campaign must establish and should have little trouble establishing an Advisory Committee comprised of blue ribbon, nationally prominent leaders who will support the Campaign and both guide and evaluate its performance. While formal responsibility for the Campaign s management will, as with all universitybased enterprises, be vested in the university s Board of Trustees, the Advisory Committee will play a significant role in the overall Campaign. The Committee will consist of 12 to 15 members, largely drawn from the leadership of America s women s, African-American and religious communities, but it should also have a carefully chosen group of leaders of existing anti-fistula initiatives. The Committee will meet no more than two times per year, and its members will be expected to make occasional trips to the Centers and other African operations of the Campaign. It is anticipated that the budget for the Advisory Committee will be $100,000 per year.

11 11 VI. Budget Estimated Budget for the 12 Year Pan-African Fistula Initiative Item Annual Costs Total Program Costs Initial construction costs for 40 centers 100,000,000 2 Annual surgical budget for 40 fistula centers Annual education and community outreach budget for 40 fistula centers 80,000, ,000, ,000, ,000,000 Annual central administrative cost 5,000,000 70,000,000 5 Annual support cost for the cadre of academic fistula surgeons 1,350,000 25,000,000 6 Annual Fistula Corps costs 12,000, ,000,000 7 Annual Advisory Committee costs 100,000 1,000,000 Program cost $140,000,000 $1,520,000,000 2 A one-time cost of construction for 40 centers at $2.5 million per center. Estimated time for the construction of each center and getting it operationally ready is 2 years per center. 3 Estimated operating costs (including staff salaries) at $2 million per year for 40 centers, or $80 million per year. 4 The total program is planned for 13 years. This assumes one year of administrative preparation time, two years of construction time per center, and a budgeted 10-year funding commitment for each center thereafter. 5 The administrative center would need to be in place to oversee the program before it would become fully operational. This would probably require one year of administrative startup and an additional 12 years of funding. At $5million per year for 13 years, this would work out to $65 million. An additional $5 million is included for construction of an administrative center on the university campus where the center will be located for conferences, administration, research, and teaching. 6 This assumes the costs will run over 10 years. Costs are based on NIH salary levels of $180,000 per year for full-time effort. The costs include 20 surgeons per year at 25% effort, plus benefit costs of 30%, plus NIH indirect costs of 55% on each salary line as well as a travel costs. 7 This assumes the costs will run over 10 years. Costs are projected at $100,000 per year in salary and loan remission costs, plus 40% allowance for health insurance, etc, for 80 surgeons