Nanotte is a 43-year-old mother in Haiti who heard about the free cervical cancer screening services offered at Klinik Manitane and came in for screening. Health workers found that Nanotte had an undiagnosed lesion that had already progressed to cervical cancer.
This diagnosis can be a death sentence for women like Nanotte who have limited means and live in a country where access to screening is severely limited and treatment options are few.
To ensure that Nanotte did not become another national statistic for cervical cancer mortality, multiple nonprofits launched a massive collaborative effort to save her life. Told with her permission, Nanotte’s story follows below.
A Worrisome Diagnosis
Nanotte learned of her condition in August 2013, during one of the cervical cancer training delegations led by Dr. Rachel Masch of Basic Health International (BHI), when her pelvic exam revealed that she had a lesion that was suspicious for advanced cervical cancer. The biopsy subsequently confirmed the diagnosis of squamous cervical cancer.
Just eight months prior to screening Nanotte, Direct Relief, in partnership with BHI and St. Luc Fondation, launched the cervical cancer training and screening program at St. Luc’s clinic for maternal and prenatal health, Klinik Manitane, located in Haiti’s Artibonite Valley.
Through the program, Haitian health providers were trained to screen for cervical cancer using visual inspection with acetic acid (VIA), a low-cost and effective alternative in countries like Haiti where large-scale Pap screening cannot be adequately implemented due to lack of resources and infrastructure. Providers also learned to treat pre-cancerous lesions that are seen during the screening visit with a freezing technique called cryotherapy.
Although the program signaled increased access to services in a country with few options for basic preventive gynecological care, cryotherapy was no longer a treatment option for Nanotte. She was the first patient screened through the program whose condition was more advanced than the treatment the health workers were trained to provide.
Surgery Reveals Need for Radiation in a Country with None
To help Nanotte get the level of care she needed, Dr. Masch returned to Haiti in February 2014 to perform a pro bono radical hysterectomy (full removal of the uterus, cervix, and part of the vagina) with friend and colleague, Dr. Jill Whyte, a gynecologist oncologist at North Shore University Hospital in New York.
The surgery was performed at St. Luc’s sister facility, St. Damien’s Hospital, which generously donated their surgical suite and hospital services. Pathology from the surgery revealed a three centimeter tumor and radiation therapy and chemotherapy were indicated for treatment.
Providing the chemotherapy was not an issue, but the radiation therapy was problematic, as there are no radiotherapy facilities in Haiti. If Nanotte was to receive the treatment she needed, she would have to leave the country.
Search Begins for a Treatment Facility
In order to send her to a facility outside of Haiti, the Medical Director of St. Luc Fondation, Dr. Marc Edson Augustin, began the laborious administrative process of securing a passport for Nanotte.
Meanwhile, Direct Relief, BHI, and St. Luc simultaneously reached out to professional contacts to research countries where it might be possible to send Nanotte to receive treatment (at a price that Direct Relief’s programmatic budget could absorb). Various options were considered, including several hospitals in the United States, El Salvador, Cuba, and the Dominican Republic.
The logistics were complicated. Nanotte would need to stay for a prolonged period in a foreign country where she did not know the language, translation services would be needed for medical visits, and lodging, food and all the basic necessities of life would need to be arranged. Also, Nanotte’s daughter would need to be taken care of in her absence, and someone would need to accompany Nanotte to help navigate travel and care. It was a daunting endeavor.
A Match is Found
After many false starts, we connected with Partners In Health (PIH), a longtime Direct Relief nonprofit partner committed to improving the health of poor and marginalized people. With well-established operations in Haiti, PIH had recently opened a new hospital in the Haitian central plateau, Hôpital Universitaire de Mirebalais.
Moreover, PIH had also been screening women with VIA in that region of the country and had established oncology services for women at Hôpital Universitaire. Although radiotherapy is not available at the hospital, PIH had established referral services and a partnership with an oncology institute in the Dominican Republic.
Nanotte was referred by Dr. Augustin to Hôpital Universitaire’s oncology department, which in turn set up the necessary referrals to transfer Nanotte to the Instituto Oncológico Del Cibao in the Dominican Republic. Dr. Augustin went to work securing the necessary visas for Nanotte and her husband to make the journey.
Another Partner Steps Up
PIH staff on the ground would be assisting with the medical visits and the radiation therapy, but the chemotherapy, lodging, and transport still needed to be arranged. Direct Relief reached out to our long-term partner in the Dominican Republic, Fundación Solidaria del Divino Niño Jesús (FSDNJ).
Headed by Father Eduardo, FSDNJ has been helping to support a network of 175 medical facilities with essential medical supplies donated by Direct Relief. Once we explained Nanotte’s situation, Father Eduardo and his staff immediately mobilized to secure lodging, transportation, food, and all the basic necessities in preparation for her arrival.
Starting Chemotherapy in the Dominican Republic
On August 7, 2014 – a year after Nanotte was first seen at Klinik Manitane – she arrived in Santiago. At the Instituto Oncológico Regional Del Cibao she met oncology radiologist, Dr. Naly Cruz, who was to oversee her care.
Because of the length of time that had elapsed since the initial diagnosis, all scans and lab work were repeated, and a seven-week course of radiation and chemotherapy was prescribed. Coincidentally, the week that Nanotte started chemotherapy, a Direct Relief container of donated medicines arrived for FSDNJ that included one of the chemotherapy drugs prescribed by Dr. Cruz!
Nanotte started her treatment with a full network of support composed of FSDNJ staff, who provided for all her basic needs and introduced her to the Haitian community living in Santiago. Haitian PIH staff, working in conjunction with the oncology institute and Dr. Cruz, ensured that she was accompanied on all medical visits and that procedures were explained and translated into creole. All the teams kept in constant touch with Dr. Augustin in Haiti, Dr. Masch in New York, and Direct Relief in California.
Headed Home After 16 Weeks
Seven weeks turned into 16 weeks as Nanotte suffered terrible adverse events associated with the treatment.
Nanotte’s husband, who had accompanied her on the initial two weeks of her journey, had returned to Haiti to go back to work and care for their daughter, but he was called back to the Dominican Republic because Nanotte needed 24/7 care to help her manage the debilitating effects of the treatment.
Despite these challenges, during the week of Thanksgiving 2014, we received the best possible news: Nanotte was finally on her way home!
A Cancer of Poverty
The majority of you reading this likely don’t know of anyone who has been diagnosed with cervical cancer, let alone died from it. That’s because with regular screening, cervical cancer is a completely preventable disease.
Most women in the United States are familiar with Pap screening tests because we have had them regularly since young adulthood and have come to expect them as part of our standard care during routine medical visits.
Yet, more than a quarter of a million women die each year from cervical cancer, almost all of them in developing countries. Haiti is one such country, where the disease burden from cervical cancer is the highest in the Western Hemisphere and there are few places where women can access cervical cancer screening services.
Increasing Access to Screening & Treatment in Haiti
Because of the collaborative program between BHI, St. Luc, and Direct Relief, access to cervical cancer services is slowly increasing. Eight trained midwives now regularly screen 40-50 patients a week for cervical cancer at the twice-weekly screening clinics held at Klinik Manitane.
To date, over 2,600 women have been screened for cervical cancer and almost 400 cryotherapies have been performed. Although the screening clinics will undoubtedly save many Haitian women’s lives, Nanotte’s story proves that for some the screening comes too late.
Thanks to the indefatigable efforts of staff from St. Luc, PIH, BHI, FSDNJ, and the Insitituto Oncológico Del Cibao, she has a favorable prognosis of surviving her cancer. She will return to the Dominican Republic in January 2015 for a final treatment and follow-up tests.
Seeking a Solution
As of this writing, a second woman has been diagnosed with advanced cervical cancer through the screening services at Klinik Manitane. Because of Nanotte’s journey, we now have an established network where we can hopefully take her from diagnosis to treatment in a more timely and efficient manner.
However, it also highlights the fact that although we are grateful to be able to help Nanotte and patients like her, this journey does not provide a solution to the problems faced by women of Haiti.
Comprehensive and early screening for all women is needed to prevent cervical cancer, and if cancer is diagnosed, radiotherapy services in country are needed. It is my sincerest hope that one day this will become a reality for Haiti.
How You Can Help
To help women like Nanotte, consider supporting Direct Relief’s maternal and child health programs by making a donation here.