Challenges to development of cervical and breast cancer program development in post conflict Liberia: Presentation prepared for African First Ladies' Conference, 10th SCCA Conference, Addis Ababa, Ethiopia 2016.

•Integrating cancer care in post-conflict settings.•Building health worker and infrastructure for cancer care in low resource setting.•Foreword by Her Excellency President Sirleaf, Republic of Liberia.

Foreword

Solidarity Message By Her Excellency, President Ellen Johnson Sirleaf.

To African First Ladies' “10th Stop Cervical, Breast and Prostate Cancer in Africa Conference” Addis Ababa, Ethiopia, from July 24–27, 2016.

Excellencies,

As you gather for the tenth Stop Cervical, Breast and Prostate Cancer in Africa conference, I commend your commitment to the fight against these diseases, which disproportionately affect African women and men.

I note with great inspiration the theme of this year's conference: A DECADE OF ACCOMPLISHMENTS AND THE CHALLENGES AHEAD. I congratulate you all on the great achievements you have made in controlling cancer in your respective countries and on the fortitude you display in confronting the remaining obstacles. In Liberia, we have accomplished much to restore public health services in the past decade as our country rebuilds after many years of war, and now looks to establish a resilient health system in the wake of the Ebola epidemic. Your support and our collective courage will embolden us all to confront the ongoing challenges we face as we work to turn the tables on this set of devastating yet preventable and treatable diseases.

For many years, women in Liberia who developed breast or cervical cancers - the two most common cancers - were destined to die. At present, the Liberian government is jump-starting its new National Cancer Control Program to effectively prevent, diagnose, and treat these diseases and save the lives of our mothers, daughters, and sisters. Our cancer care program is in its infant stages, but our commitment to its success is unwavering.

We have planned an incremental response to cancer management, beginning with active screening for breast and cervical cancer, resource-appropriate treatment of these cancers, and simultaneous collection of data regarding other cancers that affect Liberian citizens. We will build our infrastructure around breast and cervical cancers then expand to provide quality care to all Liberians affected by cancer over the course of the next five years.

Liberia stands with you in your commitment to stopping cervical, breast, and prostate cancer in Africa, and we look forward to your support and guidance as we implement our own cancer control strategy for the people of Liberia.

H.E. President Ellen Johnson Sirleaf

In late 2003 when the sounds of gunfire were mostly silenced, and the slashing of limbs and evisceration of organs ended, when over two hundred and fifty thousand of its citizens were slaughtered (www.insightonconflict.org/conflicts/liberia/conflict-profile/conflict-timeline/) and another 2 million were internally displaced, or fled the country to neighboring refugee camps (www.forcedmigraton.org/research-resources/expert-guides/liberia/causes-and-consequences), the country of Liberia was left in physical and economic devastation. The second of a duo of civil wars, one of the most brutal in modern history that rocked Liberia for over 14 years, had ended but the toll it took on the health care sector still plagues the country, even today, some thirteen years later. Liberia's health workforce was decimated; fifty doctors were left in Liberia to serve the population that survived the massacre. When President Johnson Sirleaf became the first post-war, democratically-elected leader of the country in 2005, she inherited a country with no economy, no running water or electricity, government buildings that were bullet-ridden and ransacked, a population that was severely traumatized and a national hospital, the John F. Kennedy Medical Center, devoid of technology, services, and a productive health workforce.

For her first 5 years in office President Sirleaf worked to recall ex-patriots who had been part of the large migration exodus, to return and help rebuild the county as well as the health sector. Foreign agencies were called in to help with the myriad of health-related problems that existed: infectious disease, infant mortality, maternal mortality, dismembered and disfigured citizens, child soldiers in mental anguish and addicted to drugs, and women and children still reeling from the aftermath of rape. In 2008 when Mount Sinai Medical Center, on invitation by Her Excellency, joined the call to help in the health sector, ours was the only institution that focused on cervical cancer, a cancer that was slowly percolating and invading its women throughout the war, and a cancer that was then surfacing with dire consequences. Liberia was not equipped in 2008 to handle the wrath of cervical cancer in the midst of its deadly infectious diseases that were claiming the lives of not only its women, but also its men, its elderly and its children.

So as aid flowed in to rebuild the health infrastructure and as volunteers focused on the other important lethal diseases, our group silently worked to bring awareness of this equally devastating disease, to educate health workers, to educate women and to offer some hope for a disease that they had no knowledge of, other than it being some “evil” manifestation or “punishment.” Over 60% of the women who presented during the early years of 2008 did so with very advanced stages of cancer, (Beddoe, n.d.) the likes of which I had not seen since my residency in the 1970s immigrant population in Brooklyn, New York. Women presented with bulky cervical cancers, with large fungating cervical lesions, with vesico-vaginal and recto-vaginal fistulae and undoubtedly with widely disseminated disease that we could not document because of the lack of any type of medical imaging in the entire country.

With very little private donations but with eager volunteers, and with very engaged local staff, the first chemotherapy center was started at John F. Kennedy Memorial Hospital in 2009. The center offered one drug, Cisplatin, but that was not the importance of the center. The center brought together women who were confused by the symptoms they were having, who were hiding these symptoms from their families until the stench became so great that they were brought into the hospital to die, until they bled so profusely that their lifeless bodies were strapped to motorcycles to drop them off at the hospital because there were no ambulances to be called, until their constant soiling of beddings with urine and feces became too much for the families to tolerate and they needed to be removed from their villages; the patients and the families finally had a place where they could meet so many other women and families who were going through the same “shame and humiliation.” They could finally share their stories; the center offered some comfort, some awareness, but mostly it offered hope. That was what the first post-war chemotherapy center accomplished in Liberia.

The main objective of this center was never to obtain a cure, there was no false hope propagated. The message was clear, the disease existed in Liberia, there were limited resources to mange this disease, but being aware could result in women coming forward early when surgery could be offered and for a very few, chemotherapy could possibly make their disease manageable enough to be surgically removed, or give temporary palliation from symptoms. The Center at JFK Hospital drew women from multiple counties in Liberia. Referrals poured in from primary health centers throughout the country and all patients were seen free of charge. Private donations and volunteer services were the heart and soul of this endeavor.

Two years after the service was started, the governing body of the hospital wanted to disengage from treating cancer, fearing that the large influx of patients would put undue strain on their already limited resources. But the patients kept coming. Volunteers rented a clinic across the street from the hospital that opened on weekends. Mount Sinai stayed committed to providing drugs, services and education during this temporary phase of the program. In 2012 the clinic was moved to a private facility and a free pilot-screening program using VIA, HPV and Pap smears was conducted. The results obtained gave the first preliminary data on the burden of disease in Liberia. At about the same time, the clinic continued the program on a fee-for-service model, limiting access to treatment and care to only those patients with financial resources.

During the latter part of 2011–2012 talks began with the then Deputy Minister of Health and Chief Medical Officer of Liberia, Dr. Bernice Dahn, regarding the urgent need to address both the breast and cervical cancer crises in Liberia. A pilot HPV vaccine program was applied for and granted by GAVI in 2013, but all preliminary activities surrounding cancer prevention, awareness and screening were suspended by the next big crisis that hit Liberia, the Ebola virus epidemic.

With the Ebola epidemic under control, Liberia has recommitted itself to the management of non-communicable diseases (NCDs) including cancer. An ambitious program led by the current Minister of Health Dr. Dahn with the full support of Her Excellency President Sirleaf is currently underway. A National Cancer Committee has been established to address Liberia's infrastructural and health workforce needs. There was a recent visit by the International Atomic Energy Agency (IAEA) and the World Health Organization's (WHO's) imPACT program that has helped to guide this process that will allow Liberia to build a strong foundation for cancer care.

Cancer control planning: The MoH has pledged to strengthen its capacity to implement and coordinate NCD and caner programs by increasing staffing and financial support to ensure viability of the program, and to begin the implementation the National Cancer Control Program Policy that was presented to committee members. The National Cancer Control Committee is currently inviting a broad range of stakeholders to expand its governing body that would be instrumental in advocating for a budget and realistic milestones, activities, indicators and timelines.

Cancer registry: A budget needs to be established for supporting the Liberia National Cancer Registry (LINCAR) that was founded following a 2013 site visit by the African Caribbean Cancer Consortium (AC3) and the African Cancer Registry Network (AFCRN). With support and guidance from the International Agency for Cancer Research (IARC), Liberia will work towards establishing a formal agreement with AFCRN for the development of a population based cancer registry adapting the AFCRN data collection and for implementing the CanReg5 electronic cancer registry system. The MoH has pledged ongoing support for the hiring and training of registry staff and purchasing of necessary equipment.

Prevention strategies for cervical and breast cancer: The MoH is tasked with developing a comprehensive national policy to promote healthier lifestyles and nutrition through encouraging increased physical activity, education and awareness. A demonstration HPV vaccination program is currently in progress in Liberia with the hope of introducing a national vaccination program at the end of the demonstration. A cost analysis for the demonstration program will offer the Ministry valuable information as they propose a national HPV prevention effort that is sustainable.

Early detection of breast and cervical cancer: Advocacy groups are tasked with increasing awareness not only for the general population but also for health professionals and community health workers.

Diagnosis and treatment: help is being sought from the American Society of Clinical Pathology who have just completed a successful training program in pathology in Rwanda to aid Liberia since there is only one pathologist in the entire country, and no pathology infrastructure at the national hospital, JFK Hospital. Liberia will begin with a Fine Needle Aspiration (FNA) program until training and infrastructure needs are met. An imaging center is currently being developed at JFK that would include a CT scan, MRI unit and nuclear resource capacities for development of a nuclear medicine department.

Because Liberia lacks infrastructure and trained personnel to administer radiation therapy, a short term plan to deploy personnel for training as physicists and technologists and physicians for training in radiation oncology has been planned; it is anticipated that training of local personnel would take a minimum of five years. An old Cobalt machine that was in use prior to the civil war remains in a bunker at JFK Hospital and will be eventually replaced by a Linear accelerator despite the debate as to which type of radiation therapy units are best suited for low and middle income country use.

Drug Procurement: For Liberia, as with other LMICs, continuous access to cancer-related drugs is a major challenge. Since 1994 the Treaty on Trade related Aspects of Intellectual Property (TRIPS) set rules for protecting intellectual property rights of pharmaceutical companies ('tHoen, 2002). However, despite several declarations that focus on access to drugs being a fundamental right of all nations, affordability of cancer-related drugs remains a deterrent. Liberia currently has a short-term drug donation program, but is working towards a long-term and sustainable solution to drug procurement.

Palliative Care: The focus of the Palliative care program in Liberia will be the establishment of train-the-trainer programs for all health workers and procuring of morphine for pain relief and improving quality of life. In keeping with the WHO approach to palliative care, Liberia's goal is to not only attend to pain relief, but also to address the physical, emotional and spiritual needs of patients and their families (Sepulveda et al., 2001).

Undoubtedly, for cancer care to be integrated into the health system of Liberia strong government buy-in is necessary and careful policy making and strategy planning are essential. The current government of Liberia is committed to this project and we all look forward to the next decade in Liberia's history when living with or dying from cancer is not determined by where you live. “Let us be the ones to say we are not satisfied that your place of birth determines your right for life…” (Pitt, n.d.).

Historical background/context: Liberia

Liberia, the first republic in the continent is located in West Africa, surrounded by Sierra Leonie to the West, Guinea to the North and Ivory Coast to the East. Its southern boundary is the Atlantic Ocean shoreline. It was established as a colony in 1821 for the repatriation of former US slaves and their freed dependents to Africa. The current population of Liberia is approximately 4.6Million with almost 1.3M of its population residing in the capital Monrovia (http://data.un.org/CountryProfile.aspx?crName = liberia).

In 1961 the President of Liberia, William Tubman visited US President John F. Kennedy. From this visit came $9.2M to fund the construction of the JFK Medical Center in Liberia, which was completed in 1971. This center was fully staffed and equipped and set the standard of care for the region.

The civil wars that raged in Liberia between 1990 and 2003 saw the complete destruction of the entire health care infrastructure and the complete destruction of the JFK Medical Center. All the equipment was destroyed or looted, all medical records were burnt and medical supplies were discarded. Emerging from this, Liberia faced a health care crisis. Immediately post conflict, no health data was recovered and no birth or death certificates were issued. As of 2013 < 25% of all births and < 5% of deaths were registered in Liberia (http://data.un.org/CountryProfile.aspx?crName=liberia, n.d, Toivanen et al., 2011).

As improvements were slowly being implemented and health care was being reorganized, the Ebola crisis hit Liberia in 2013. This saw the loss of not only physicians but all cadres of the health workforce. Today Liberia is again in a recovery phase and its current efforts are once more geared towards improving health infrastructure, health workforce and health systems management.