Women’s Cancer Collective in Guatemala Demands Allocation of $3M

GuatemalaThe private cancer institute, El Instituto Nacional de Cancerología (National Cancer Institute/INCAN) in Guatemala City received nearly Q21 million (the equivalent of $3 million) two years ago to provide no-cost cancer care for low-income and indigent patients who receive primary care from two public hospitals: Hospital General San Juan de Dios and Hospital Roosevelt and all the hospitals in the national public health network. This award was granted after three decades of intensive lobbying effort by La Liga Nacional Contra el Cáncer (The National League to Combat Cancer). Last week they issued a demand in the form of a press release to INCAN for appropriate allocation of the funds.

The initial agreement was issued jointly by the Guatemala Ministry of Health and La Liga Nacional Contra el Cáncer. The award was granted to INCAN because as a private cancer institute, they have the capacity to treatment patients at lower cost than at public hospitals. Therefore, public health hospitals have been issued a mandate to refer those patients who have been diagnosed with cancer, to receive treatment at INCAN. The difficulty arose because INCAN had insufficient operating expenses to cover their budget.

The private cancer institute, El Instituto Nacional de Cancerología (National Cancer Institute/INCAN) in Guatemala City

Financial support was granted to INCAN through the Guatemala Ministry of Health by the Congress of the Republic of Guatemala. However, these funds were misappropriated by INCAN and used instead for operating expenses, such as paying employees, and not for the care of the poor cancer patients for which they had been earmarked. In fact, despite the Q21M ($3M) agreement, INCAN has been charging poor patients for their cancer care (essentially a duplicate payment). If the patients cannot pay the fees, they are not given treatment. Without complete treatment, they cannot survive.

La Colectiva Reconstruyendo Vida (The Rebuilding Life Collective) cites the U.N. Universal Declaration of Human Rights, which names each country’s obligation to ensure public health care for its citizens. In the recent demand for proper allocation of the $3M by INCAN, the Collective notes that women are particularly vulnerable to cancer, especially of the reproductive system.

The Collective fought for the past nine months to have the poor patients’ needs recognized. This violates patients’ rights to health and life, as guaranteed in the Constitution of the Republic of Guatemala.

Due to low funds, La Colectiva is seeking only one thing: a budget for hospitals from the Guatemala Public Health Department for chemotherapy and radiation therapy, which for indigent patients is only available at INCAN. The doctors at the hospitals, who make meager salaries, feel helpless to do much more than treat patients out of pocket or without remuneration or, if unable to do so, watch their patients die.

This is a landmark and pivotal moment, as it is the first time in 20 years that the Guatemala Ministry of Health has looked at the issue of cancer care for the poor. Also, this is the first agreement of its kind to be signed whereby cancer hospitals are required to ensure that cancer patients receive appropriate and accurate treatment.

The Guatemala Ministry of Health has agreed that poor cancer patients have not received sufficient treatment for the Q21 million. However, they are now in a legal battle to ensure that INCAN will complete the entirety of its agreement. In other words, INCAN has to provide care equivalent to the money that it was awarded and that was misused for its operating expenses.

Despite this fact, the Ministry told INCAN to sign the same agreement again, and without the Collective’s knowledge, they did so. In response, La Colectiva urges that, at this point, the agreement must be revised in order to be valid. The Collective wants the public to know that INCAN has not fulfilled its agreement and that they keep delaying meetings, indicating their lack of support or awareness of the criticalness of the situation.

The mission of La Colectiva Reconstruyendo Vida is to fight for the lives of poor women in Guatemala who are breast cancer patients at Hospital General San Juan de Dios. They assert that these women have the right to complete oncology treatment: chemotherapy and radiation therapy. To speed dedication of funds, La Colectiva is working in alliance with the Guatemala Office of Human Rights and the National Hospitals Health Commission of Congress, among other groups. Their statement urges efficient allocation of funds for expeditious care against this deadly disease.

By issuing the demand, La Colectiva hopes to make public the needs of cancer patients. Specifically, partial treatment is tantamount to a death sentence because cancer can recur. La Colectiva feels that, while INCAN may not be operating in a corrupt manner, their cash flow problems are not the problem of the poor cancer patients. Since the money was given to INCAN for the purpose of cancer care for the poor, it needs to be used as it was designated.

If INCAN does not comply with the request, La Colectiva will appeal to the Ministry of Health to shift the remainder of the 21 million Guatemalan quetzales to another provider within the private hospital network that delivers radiation therapy service. This would be similar to the way that the health system of el Instituto Guatemalteco de Seguridad Social /IGSS (the Guatemalan Social Security Institute) began some years ago. These programs are accountable in that their budgets can be more closely monitored. In the current structure, the IGSS health system is only designated for employees and for spouses of employees during pregnancy, labor and delivery, or cancer care. IGSS is not a provider of public health, however.

La Colectiva Reconstruyendo Vida is a grassroots advocacy group comprised of 20 breast cancer survivors in Guatemala. The founding members are Carmen Odilia Reina Aragon, Vivi Estrada, Dra. Lisette Aguilar, Tracy Salazar, and Marta Quiñones. Marta said that currently there are 36 poor people needing radiation therapy. Eighty more are in chemotherapy, and upon completion, will also need radiation therapy. One radiation therapy treatment costs Q15,000 (nearly $2,000). Because the poor can’t pay out of pocket, people die because they can’t complete therapy.

Vivi told her story as a survivor, getting her treatment at Hospital San Juan de Dios eight years ago. She got assistance from a breast surgeon, Dr. Sergio Ralon, who is a staff member of the hospital. He took personal responsibility in helping women to get their treatment, even sponsoring their chemotherapy and radiation therapy. However, the primary treatment at INCAN is Cobalt therapy, which is extremely outdated and not used in modern society. So the doctor sent the women to get better care with new radiation therapy equipment (linear accelerators). They got better results with fewer significant side effects. That is the heart of the fight for patient care: cancer patients should not receive Cobalt treatment, but instead the excellent care available through linear accelerator radiation treatment.

The April 3rd consent for 21 million quetzals (nearly $3 million) ensures free care for cancer patients referred by the public national hospital, and in particular, Hospital General San Juan de Dios, for treatment at the INCAN cancer institute of Guatemala. The agreement specifies the number of treatments that will be provided, and exacts that not only must the type of treatment be upgraded from obsolete modalities, but also the wait list of 1,500 must be significantly reduced to avoid early and preventable cancer deaths. To save lives, the Collective demands correct allocation of funds.

By Fern Remedi-Brown

Frente al Reciente Convenio Firmado Entre el Ministerio de Salud y la Liga Contra el Cancer (INCAN) por 21 Millones de Quetzales para la Atención del Cancer, se Manifiesta
Guatemala Cancer Injustice Fight for Poor Women
Personal communication with Carmen Odilia Reina Aragon, Vivi Estrada, Dra. Lisette Aguilar, Marta Quiñones of La Colectiva Reconstruyendo Vida, Guatemala
Personal communication with Sergio Ralon, MD, Cirugía de Cáncer, Cirugía General Digestiva y Laparoscopica,
Enfermedades del Seno Femenino, Hospital San Juan de Dios, Guatemala, Guatemala
Colectiva “Reconstruyendo Vidas” Facebook page
The United Nations