Misfortune's Foe

Author: Dr. Vincent DeGennaro Jr. ’02

Breast cancer had spread through Jean Marie’s 33-year-old body. The cancer had invaded the bones in her left hip and thigh, and she was in excruciating pain. By the time I met her at the Project Medishare hospital in Port-au-Prince, Haiti, she hadn’t been able to walk in weeks; her stoic brother would carry her from the public bus to her appointments.

The tumor in her right breast had grown for two years before she acknowledged it would not go away on its own. While doctors in the United States often require mammograms, ultrasounds and repeated biopsies for diagnosis, doctors in Haiti often diagnose breast cancer before a woman even removes her bra. By the time Jean Marie sought medical care, the tumor in her right breast was larger than the whole healthy left breast, and the doctors she saw needed only a visual examination to diagnose her breast cancer.

Those doctors confirmed Jean Marie’s fears about the cost of surgery to remove the breast and then told her of the additional price of chemotherapy; a total of around $1,000. The surgery and chemotherapy were out of reach for a family that collectively makes only $1,000 per year.

Jean Marie became increasingly short of breath, and the pain in her left hip gnawed at her day and night. When she could barely breathe anymore, she bounced around the Haitian health care system until she finally found her way to the nascent Project Medishare breast cancer treatment program.

Her brittle hair ringing an emaciated face, her palms pale with anemia, Jean Marie slumped in a chair in the clinic. X-rays and ultrasounds confirmed that the cancer had nearly destroyed her pelvis and hip, metastatic tumors had set up shop in her liver, and the cancerous fluid around her lungs caused her to pant rapidly. We admitted her to the hospital, transfused blood and performed a biopsy on the tumor with a small needle. Two days later, she regained some strength and was eating better, but the situation would quickly deteriorate without treatment of the underlying problem: an aggressive, overwhelming cancer.

That same week, the staff placed her in a wheelchair and carried her to the second floor of the building that houses the oncology program. She reminded me of the withered AIDS patients I had cared for a decade ago, and a wave of panic ran through me. Watching the chemotherapy slowly drip into the IV in her left arm, I nervously waited for her to die right there in the oncology ward, the first casualty in a never-ending, uphill battle. Maybe she was too ill to be receiving the chemotherapy, and I should have sent her home to die in peace. Would she gain anything from the chemotherapy or was I treating myself? But Jean Marie finished the chemotherapy without event and went home, cradled in the arms of her brawny brother.

Over the next three weeks, the Project Medishare staff treated a dozen other women with chemotherapy. One had an allergic reaction and had to stop the infusion. Three called me later to complain of severe vomiting after they had run out of anti-nausea medications. Jean Marie’s brother stopped by the hospital twice to update me on her progress and seek succor for additional symptoms she was having. He wore the same navy blue T-shirt with a stretched-out neck hole each time.

I showed up to work in Rwanda with Partners In Health in 2011, fresh out of residency training in New York City. I’d worked off and on in a half-dozen countries over the previous nine years and knew that I needed, absolutely craved, to live and work abroad full time. During the first week, a patient with breast cancer came in for her second session of chemotherapy.

“Chemotherapy?” I asked my Rwandan doctor colleague in astonishment, surveying the ward of this rural hospital in sub-Saharan Africa filled with patients suffering from the traditional scourges of developing countries: infectious diarrhea, end-stage AIDS, tuberculosis.

“Oui. We have a few patients on chemotherapy here. If we can treat a complex disease like HIV, why not cancer, too?” he answered with a smile. We looked up the dosages of the medications and read up on cancer literature; I sent emails to colleagues in oncology enlisting their help. A year later, Partners In Health and the Rwandan government officially opened a national oncology center for the country of Rwanda, the first of its kind in Africa.

Amid all the fanfare and the dignitaries attending the event, I had found my calling. I’d known that I wanted to be a doctor since forever and that I wanted to work abroad since I had had my first taste in college, but I finally saw my place in treating chronic disease and, most importantly, cancer.

“How can you justify treating cancer in a country where children starve to death and mothers still die in childbirth?” I now ask myself on the steamy summer nights in Port-au-Prince when the air hangs too thick to sleep. People are supposed to die of cancer, even in the United States, but I went into global health and first joined Project Medishare in 2004 to address the injustices of the inequitable distribution of health care, where one person dies and another lives simply because of the location of their birth. I think of the words of Father Gustavo Gutierrez, a theology professor at Notre Dame: “The poor are dying before their time because poverty means death — unjust and early death.” Would Jean Marie, at 33 years old, be dying of breast cancer in the United States?

Doubtful. Still, I’ve been asked: “Isn’t the money you’re spending on cancer care better spent on other illnesses that are cheaper and easier to treat?”

I remember hearing a similar argument in the late 1990s, when I was attending Notre Dame. Some said HIV/AIDS was too complicated to treat in developing countries, the cost of medications too high, and other simpler diseases should be addressed first. So AIDS reversed decades of development in high-burden countries, and the global community was resigned to watch millions die.

In the waning days of his administration, President Bill Clinton reluctantly agreed not to enforce patents on AIDS medications in poor countries. The price of treatment plummeted and, in 2003, President George W. Bush proposed an ambitious plan to treat and prevent HIV/AIDS around the world. In 2005, while attending medical school, I worked for an AIDS advocacy organization, pressuring drug companies, national governments and nonprofits to increase their prevention of mother-to-child transmission of HIV and treatment of HIV-positive children. With nearly 3 million people on HIV treatment at that point, the full treatment of all 8 million of those then in need was nearing reality. By the end of 2012, 10 million people were on treatment for HIV/AIDS and more than a million lives had been saved.

Because of the similarities between the AIDS epidemic in the early 2000s and cancer care today, the global health community looks to the success in containing HIV for the management of the complex array of diseases known collectively as cancer. The first treatment for HIV came out in 1987, and the virus ceased to be a fatal disease in wealthy countries as of 1996 with the advent of triple-drug cocktails. Addressing HIV no longer centered on finding a cure but focused on equitable distribution of existing treatments.

Likewise, the cancers that claim the lives of the people of Haiti or Rwanda are preventable and treatable with simple tools available now. In fact, most of the chemotherapy being used in developing countries has been around for a quarter century. Much like the AIDS epidemic, cancer concentrates in the countries that can least afford to handle it: Two-thirds of all cancer cases occur in low- and middle-income countries.

Breast cancer is the leading cause of cancer death in women worldwide. While women in developed countries present with cancer after age 50 or 60, more than half the patients in the Project Medishare program in Haiti are younger than 40. Without access to treatment, breast cancer is universally fatal, usually in less than three years. According to the World Health Organization, more than 13 million people will die of cancer every year by 2030 if we do nothing. The question I now ask myself when the visions of patients dying of treatable diseases keep me awake is not “Why should we treat cancer in Haiti?” but “What has taken us so long to even try?”

Antoinette has a long, slender figure, but she carries herself a foot taller than her stature. Her clothes are always clean and pressed, her middle-class status apparent in the quality of the fabric and the relative newness of her clothing. An educated woman, she works in an office, and none of her co-workers knows she has breast cancer — she fills out the deficit in the left side of her bra with balled-up clothing.

At 45 years old, she’s on the older end of the patients in the treatment program but was fortunate to be among the half of our patients who are completely curable. She had had a mastectomy three months ago and had been saving and scrounging the money for the chemotherapy. She didn’t want to start the therapy without having the money needed to follow through with all six sessions. Antoinette figured that it would take her six months to gather the necessary funds, but she had solicited money from most of her relatives to pay for the surgery three months ago and knew they might not be able to help her this time.

While she recounted her accounting to me, I ran a different set of calculations in my head. She had waited a year after finding a round mass in her breast to see the doctor, three months before having the mastectomy and another three months had passed since then. If she were to wait another few months to start chemotherapy, her treatable, curable cancer could become something different — widespread disease more similar to Jean Marie’s — the incurable type. I told her not to worry about the money, that Project Medishare treats all women regardless of their financial situation, and she looked at me skeptically as I escorted her to an infusion chair. She took off her plaid jacket so the nurse could place an IV, and she turned her head to see the woman in the chair next to her — a pale, young woman slumped over, breathing rapidly. Later in the day, when the chemotherapy was almost finished, the young woman perked up, and she and Antoinette conversed briefly about their individual journeys with cancer.

Project Medishare, founded in 1994, is slowly proving that cancer care is possible in low-resource settings and at reasonable costs. In Haiti, the full cost per patient, including diagnosis, surgery and chemotherapy, is $1,500, compared to an average of $25,000 in the United States. As more programs join the fight against cancer, prices will drop until we reach a point when the volume should accelerate the decline in prices, much like what occurred with HIV medications over the last 10 years. In 2005, former President Bill Clinton played a significant role in the price drops for HIV medications by guaranteeing a set volume of sales to generic manufacturers, and now he’s throwing his weight behind the global chemotherapy supply.

The HIV/AIDS epidemic taught the global health community a lot about implementing health programs in developing countries. The networks of clinics and hospitals that were built with the money and political will to defeat HIV/AIDS have had tremendous impact on the general health of poor people everywhere, reducing maternal and infant mortality, increasing vaccination rates, and increasing coverage of insecticide-treated bed nets for the prevention of malaria. Similarly, the global health community hopes that rolling out treatment of chronic diseases will serve as the impetus to provide access to basic primary care. Regular interaction with the medical community will help spread the message about the evils of tobacco, fried foods and mass quantities of sugar — a kind of public health education from the ground up.

As part of the fight against cancer, the Project Medishare program is focusing on three areas: collaborating with the local health system; research; public awareness campaigns. We’re working with the oncology program of Haiti’s University Hospital as well as with the Haitian Oncology Society, hoping to construct a large-scale, sustainable, national cancer treatment program. We’re researching the causes of aggressive breast cancers at young ages in Haitian women, hoping to find a genetic reason that might also lead to targeted treatments. Most important for the women of Haiti, we’re getting out the message in the media that women should do monthly breast self-exams and seek treatment as soon as possible if they find a lump. After two generations of pink ribbon campaigns in the United States, we may find it difficult to imagine a population where the vast majority of women think they have an infection when they feel a lump in their breast.

Jean Marie’s disease is incurable, but the chemotherapy will significantly prolong her life and reduce her symptoms, improving the quality of her life. More important, she has the same right to basic treatment as any woman anywhere in the world. She’s not receiving expensive monoclonal antibody therapy or targeted genetic treatment tailored to her individual disease. The medication she’s receiving is 40 years old but is still a mainstay of therapy in the United States because of its potency and favorable side-effect profile. She’s not dying of breast cancer, she is dying of poverty.

At $5 per vial, doesn’t she deserve the medication that offers relief from her shortness of breath? Is three hours of a nurse’s time every three weeks too much to spend to help a 33-year-old mother live another 12 months? Should I look into Jean Marie’s round, dark eyes and tell her she isn’t worth treating? How would that absurd conversation go?

“Well, we have the medications to treat your advanced disease. We’ve actually had them since before you or I were born. But, and this is where it gets complicated so pay close attention, there are children in Haiti starving to death or dying of diarrhea. The chemotherapy to alleviate your symptoms and help you to live longer to continue to provide for your family is expensive. How much? Well, slightly more than I paid for my laptop here, but less expensive than my flight to Istanbul last fall. But that’s not important now. What I want you to focus on is that your disease has been deemed too difficult and too expensive to treat here. Yes, well, we do treat your disease every day in the United States. Yes, we use medications that cost literally ten thousand times as much as the ones we’re giving you. Yes, your children may starve if you die. Maybe I’m not explaining myself well enough. You see, you were born in Haiti to a poor family and there’s a certain order to things. Have you ever heard the expression, ‘That’s the way the cookie crumbles’? Cookie? It’s like a sweet, hard dessert that you eat with your hands, sometimes with chocolate chips.”

The idea that giving a woman with cancer the chance at a cure is somehow sucking up money which could be spent elsewhere assumes we’ve reached the limit of what should be spent on healthcare. However, Haiti spends only $58 dollars per person per year on healthcare, according to the World Health Organization. This amount barely allows for even the most basic health needs. The constitution of the World Health Organization, of which the United States is a signatory, states that everyone has the right to “the highest attainable standard of health.” We don’t control how the cookie crumbles — complications of childbirth, infectious diseases or cancer — but we have an obligation to address each crumb, however it falls.

Jean Marie gingerly walks up the stairs to the oncology ward, her hip pain all but resolved. She is dressed in a white silk shirt, and her hair is washed and neatly combed in small braids. She sits erect in the infusion chair, and I breathe with her from afar, counting her respirations as normal now. Her mother smiles at me as I listen to Jean Marie’s lungs, her brother dutifully by her side. Jean Marie casts a glance at the slender woman in the plaid skirt in the chair next to her, the same woman who was her chemotherapy buddy three weeks ago. They resume chatting about the weather, the process of chemotherapy and the side effects they had.

One probably will be cured entirely of her cancer and the other will live significantly longer and have a much improved quality of life. The philosophizing and pontificating about how much of the pie we should spend on each disease can be left to those who lack the vision to imagine a larger pie. For both Jean Marie and Antoinette, the future of global health — treating all chronic diseases as you would in any country on earth — is here today.

Vincent DeGennaro is an internal medicine doctor and a global public health specialist at the University of Florida’s Division of Infectious Diseases and Global Medicine. He works half time in Haiti with the nonprofit Project Medishare. Visit tinyurl.com/breastcancerinhaiti for information on its breast cancer treatment program. Also see his Global Doc blogs at magazine.nd.edu.