Summary

Summary

Almost 600,000 people die every year in México, nearly half of them as a result of chronic illnesses such as heart and lung disease, diabetes, HIV or cancer. Hundreds of thousands more Mexicans battle with earlier stages of these and other chronic illness. Over the course of their illness many of these people experience debilitating symptoms such as pain, breathlessness, anxiety and depression. To ensure proper medical care for many of these individuals, access to palliative care and pain medicines is essential. Without these services, they will suffer needless pain and distress undermining their quality of life and that of their families in their final days of life.

[With the pain] I didn’t have the desire to do anything. It would anger me when people spoke to me… [With palliative care] I have come back to life. Remedios Ramirez Facio, a 73-year-old woman with pancreatic cancer who receives palliative care at Mexico’s National Cancer Institute.

In México, access to palliative care services and to medicines essential for pain treatment is very limited. Human Rights Watch found that currently only a few dozen public healthcare institutions in the country offer palliative care and even fewer provide it in patients’ homes. Most healthcare personnel have received no training in the discipline, and few doctors are licensed to prescribe strong pain medicines that are essential for palliative care.

Where palliative care is available it is often due to the efforts of individual physicians or advocates rather than the result of a deliberate policy of the government, health system or insurer.

Palliative care seeks to control pain and other physical symptoms and address psychosocial and spiritual issues people with life-limiting illnesses and their families face. The World Health Organization (WHO) considers palliative care an essential part of the healthcare system and recommends that countries implement health policies to promote it, ensure adequate training of health professionals, and make essential palliative care medicines, including opioid analgesics, accessible. As palliative care does not require expensive equipment or medications it can generally be provided at a relatively low cost. A wealth of research studies has shown the effectiveness of palliative care and some studies have found that offering palliative care leads to overall cost savings for health systems due to reductions in the use of emergency health services and hospital admissions. The effectiveness of opioid analgesics, essential medicines for treatment of moderate to severe pain that are inexpensive and easy to administer, is equally proven, and in high income countries, they are widely available and used to address pain.

This report identifies challenges people with life-limiting illnesses in México face accessing palliative care, with a special focus on access to pain treatment. The report is based on the research Human Rights Watch conducted in México from 2011 to 2014, interviewing 115 patients, their family members, healthcare workers and government officials in México City and the states of Chiapas, Jalisco, México and Nuevo León. We also reviewed relevant legislation, insurance policies, medicines lists and other policy documents.

Seven of México’s thirty-two states—Coahuila, Guerrero, Hidalgo, Quintana Roo, Sinaloa, Tlaxcala and Zacatecas—do not have any known palliative care services. Another seventeen states have just one palliative care service, in the capital city in each case. For many Mexican residents, at the moment when they are most desperately ill, frail, and in intense pain, care is not available at all or only hours away by public transport. Opioid analgesics for chronic pain such as morphine are also almost completely unavailable outside state capitals.

As a result, many patients end up without access to palliative care, even if their insurance entitles them to such care. We found that in México City and only three states (Durango, Guanajuato, and Jalisco), do patients with insurance from México’s largest three health insurers —Seguro Popular, the Mexican Social Security Institute (IMSS) and State’s Employees’ Social Security and Social Services Institute (ISSSTE)—have hospitals in their states that are both in their networks and offer palliative care and/or have a pain clinic.

In terms of training, only six of México’s 102 medical schools teach courses on palliative care for undergraduate medical students—these courses are mandatory in just two. As a result, many physicians and other healthcare workers do not have even basic skills in the care of patients who require palliative care.

The lack of availability of opioid pain medicines is due in part to insufficient training but also to complex prescription requirements that discourage physicians from obtaining the license needed to prescribe these medicines and pharmacies from stocking them. México’s health law requires physicians to use not just special prescription forms for opioid medicines but also barcoded stickers—an unusual requirement. These barcoded stickers can currently only be obtained in one place in every Mexican state and must be picked up in person, making this requirement highly burdensome to meet. This has resulted in the vast majority of doctors, especially those living outside state capitals, not being authorized to prescribe these medicines. The government has announced it will replace this system to ensure easier access to barcoded stickers for physicians.

Even when patients find a physician able to prescribe these medicines, they face difficulties filling prescriptions. Very few pharmacies, especially outside state capitals, stock these medicines because almost no physicians outside state capitals can prescribe them and because of administrative requirements for licensing and record keeping. Furthermore, current dispensing regulations frequently force pharmacies to refuse to fill prescriptions on technical grounds forcing patients to return to their physicians to pick up new ones.

In January 2009, México added a section on palliative care to its health law, granting people with terminal illness—defined as people with a prognosis of six months or less—the right to palliative care at healthcare institutions and at home. It grants them a right to information about their illness and prognosis and allows them to make decisions about medical care at the end of life, including a right to refuse life-prolonging treatment.

Under the law, all healthcare providers must develop treatment plans that address the individual needs of terminal patients and their families. Care must be provided by multidisciplinary teams that include not just physicians but also nurses, psychologists and other healthcare workers. The law obliges healthcare institutions to ensure that their personnel is adequately trained and that they have an adequate supply of medicines to treat pain and other symptoms.

These provisions of the health law were passed in recognition of the changing demographics and health burdens facing México. While México is still a relatively young nation, a rapid demographic shift is expected to occur in the next few decades. In 2010, only 7.1 million Mexicans were 65-years-old or older. By 2020, that number will reach 9.8 million, and by 2050, 23.1 million. Meanwhile the prevalence of chronic illnesses, such as cancer, heart disease and diabetes is on the rise and will continue to increase as a result of, among others, the aging process. By developing palliative care services now, México’s healthcare system can prepare itself for the wave of patients with chronic illnesses that will seek health services in years to come.

The palliative care provisions in the law are ambitious as they seek the full integration of palliative care into health services, but build upon México’s success in achieving near universal health coverage for its population through a combination of public, employer-based and private health insurance. Unfortunately, five years after the 2009 changes to the law, the intended results have yet to materialize.

The law requires a radical shift of the status quo. What is now ad hoc must become an integral part of the health system. This will require the development of the infrastructure within the health system capable of delivering palliative care; assigning and training sufficient numbers of healthcare workers; and the integration of palliative care into financing structures and insurance packages. It will also require changes in drug regulations and medicine policies to ensure the adequate availability and accessibility of opioid pain medicines. None of this can happen without the active stewardship of the Mexican government based on a step-by-step integration plan that identifies effective delivery models, puts into place the necessary regulatory framework to facilitate the process and holds institutions accountable for meeting requirements. Until recently, the government had not undertaken any of these steps.

However, in 2013, the situation began to change as both Mexican civil society and the government took up palliative care as a priority. A number of key meetings and an international seminar, organized by the Mexican Health Foundation (Fundación Mexicana para la Salud), the breast cancer organization Tómatelo a Pecho, and the National Autonomous University of México served as catalysts for a number of important policy initiatives. Civil society has been able to work closely with high-level policy makers and leading legislators.

In November 2013, México’s president Enrique Peña Nieto signed a regulation that clarifies the content of a number of palliative care provisions in the health law. In March 2014, Health Minister Mercedes Juan López instructed her ministry to develop a national palliative care strategy. In March 2014, the ministry of health and the Federal Commission for the Protection against Health Risks (Comisión Federal para la Protección contra Riesgos Sanitarios, COFEPRIS), México’s regulatory agency for medicines, announced critical reforms to the system for prescribing and dispensing strong pain medicines, as well as record keeping. That same month, the National Commission for Social Protection in Health, which runs Seguro Popular, one of México’s largest health insurance programs, added a number of key palliative care interventions to its package. It had previously not covered palliative care for most patients. Following an internal review, the Mexican Social Security Institute recently announced its intention to strengthen availability of palliative care within its system.

Finally, the health ministry is finalizing implementing norms for the 2009 amendments to the health law, which are expected to be released in October 2014, and the Public Health Council (Consejo Nacional de Salubridad) is preparing an agreement between different government agencies on the development of palliative care.

If these steps are properly implemented, México seems poised for change. Its roll-out of universal health coverage provides a healthcare system into which palliative care can be integrated. Moreover, a number of successful models for the delivery of palliative care already exist. For example, under Governor Enrique Peña Nieto, México’s current president, México State launched a state palliative care program in 2009 focused on developing decentralized services throughout the state and training healthcare workers, which resulted in the creation of palliative care units in nine hospitals around the state. Another key model was developed by a hospital of the Mexican Social Security Institute (IMSS), México’s largest health insurer, in Monterrey, Nuevo León, and allows patients to receive palliative care close to their homes through involvement of primary care providers.

These steps are in line with México’s obligations under international human rights law, which require it to take action to remove barriers facing patients who need access to palliative care. Both the International Covenant on Economic, Social and Cultural Rights, which México ratified in 1981, and the prohibition of torture, cruel, inhuman and degrading treatment in the International Covenant on Civil and Political Rights, also ratified in 1981, can be understood as obligating the government of México to act expeditiously to ensure access to palliative care and pain medicines. The well-being of hundreds of thousands of people in México, who seek dignity and peace in their final days, depends upon the government accelerating action on the implementation of the 2009 health law reforms and realizing the goal of an integrated system of palliative care nationwide.




Recommendations
Methodology
I. Background
II. The Experiences of People in Need of Palliative Care
III. Exploring the Causes for the Palliative Care Gap
IV. México’s Legal Protections for Patients in Need of Palliative Care
V. Making the Palliative Care Law Work
Acknowledgements
Appendix I: Public Hospitals with Known Palliative Care Services in México
Appendix II: Comparison of WHO Essential Medicines List with Mexican Lists