Example 2: Development of a Patient Network to fight TB in Peru
Project Type: Advocacy
Peruvian Network for Patients and Users (PROSA, Program for the Self-Help and Support of Seropositive Persons)
Lima, PeruE-mail: email@example.com
The Peruvian Patient Network (PPN) formed in 2007 after several months of intense mobilization by patient organizations, human rights groups, and civil society organizations in Peru. PPN has a small staff and an annual budged under USD $1,000, but it is supported by the Ombudsman of Peru, the Ombudsman at the Ministry of Health, the Peruvian Medical Association and the Pan American Health Organization.
Peru has long struggled with tuberculosis (TB). In the 1960s, Peru was estimated to have the highest case rates of TB in Latin America. Incidence and mortality rates fell in the early 1990s, largely due to Peru’s implementation of directly observed treatment short (DOTS), the internationally recommended strategy for TB control. But these gains were ephemeral. According to a 2009 report by USAID, “[i]n the past few years, Peru’s National TB Program (NTP) has been hindered by serious administrative and funding problems in the Ministry of Health (MOH). These problems led to deterioration of the TB situation . . . . “
With ongoing threats to health and human rights in Peru, PPN believes in vigilance, advocacy and the training of advocates:
Vigilance. Helping to guarantee constant access to medicine and to ensure the regulation of patents.
Advocacy. Lobbying the government to promote policies that promote health and prevent illness; seeking additional resources for the first level of health care and leading a declaration of a state of emergency in the health system for non-contagious diseases.
Capacity building and training. Training activists to engage—at the community level—in the decentralization of the health care system, assist in health promotion and access to medicines.
PPN works with other patient organizations, including the National Coalition of Cancer Patients, Mental health Patients and Patients Living with HIV/AIDS. Importantly, PPN also integrates groups of patients with TB and others who have suffered adverse consequences from the health care system. Working together with the government, patients and patient organizations, PPN advocates for human rights within the context of health care.
Results & Lessons Learned
In 2004, a reorganization of the MOH created the National Sanitary Strategy for the Prevention and Control of Tuberculosis (ESNTBC) to replace the failed NTP. Universal access to multi-drug resistant tuberculosis (MDR TB) diagnosis and treatment is now a reality in Peru.
PPN faced a range of challenges in their interactions with stakeholders and government leaders. Among those challenges were a lack of time and resources. In addition, PPN often found it difficult to compete for the attention of and then convince influential administrators and government leaders who sometimes had conflicting interests. To overcome these challenges, PPN learned that it is important to build and encourage development of regional, national and international networks of patients. Doing so develops information and knowledge, builds capacity, lets voices be heard and increases the status of the organization. A network promotes quality health care services that respect human rights.