How did you become a patient advocate?
Because my sister died from cancer so I wanted to help others. It was very hard to have someone close to you die and to have no information available and no support at the psychological level. I started informing people about their rights and empowering others to understand the system. I looked for information around the world, using my background as a researcher. I compared different contexts and worked hard to try and achieve the same level of access to healthcare. I started Esperantra in 2005 to inform, educate and empower people with cancer and to advocate for equality in access to treatment.
Over the years what has been your biggest challenge as a patient advocate?
Putting more ideas on the table and achieving positive outcomes, working on patientsí rights, patient safety and access, while trying to balance priorities. The challenge is to be in the right place when the decisions are made and to be able to gain recognition and make a contribution. Many donít recognise the involvement of NGOs in healthcare policymaking.
How did you learn about and then become involved in IAPO?
In 2008 PAHO [Pan American Health Organization] invited me to a meeting in Geneva on patient safety and I met a World Health Organization (WHO) representative that introduced me to IAPO. I then applied and became a member. I was happy to find an international alliance, this is what I was looking for; an organization working to empower patients.
What has your involvement in IAPO brought you? When IAPO started working at the official level with WHO this provided credibility for my work. I was working with PAHO already and being able to bridge this with international connections was very useful. It gave me more power in my country to influence the health system. Representing IAPO at the UN high level meeting on NCDS in 2011 was a great moment. Being part of this important global meeting, seeing the situation for patients around the world and discussing patient positions was of great value.
How did you go from member representative to a Governing Board Member?
I thought it would be a good opportunity to join the Board and contribute more to IAPO, as well as a challenge. I sent my application and was then elected in 2010 in Istanbul. I was so happy to be involved, working with you has brought me a lot.
What do you see as the biggest challenge and the greatest opportunity, in building an alliance of patientsí organizations?
Limited resources can make it difficult to work together and to continue fighting for access and trying to shape the system in our own context. As humans we have rights and sometimes people donít have the same access to healthcare. We have more impact, when we advocate together, because our voices are stronger, this is the value of IAPO and other networks. Your voice is seen as more important and this also supports your members. We need to have organizations empowering others and then networks become stronger.
Can it be hard to separate the emotional pull of so many aspects of patient representation with the bigger picture of improving healthcare systems?
Itís very difficult to gain change and resources are limited. Psychological support is needed and it is not easy to work with this responsibility, giving individual support while also working on system change. When people die itís very difficult, patients come for treatment and we arenít always able to help. This is the challenge as we are so close to the patient, while trying to help people by working with the authorities.
Are you involved in national healthcare decision-making?
I worked at the Ministry of Health in Peru which was very interesting. I now understand how it works and itís easier to engage. But itís always a challenge: now the Ministry is aiming for universal healthcare coverage however, there is no budget to cover what is needed. I now know the reality of the system and this has changed my position and made me review what we ask for in terms of what I know is possible. We are working hard to have more coverage however, I now understand the budget difficulties and advocate differently. For example, I advocate to other departments such as finance and not just health. My perspective is different now after years of experience.
Are you involved in research?
Iím working with a University in Peru and different groups, on research into the development of cancer patient groups and associations. Iím proud of the patient movement around the world, which is making a very big difference to the lives of people. We need more research and evidence to show the difference that this is making.
What keeps you busiest as a patient advocate?
Finding information about the health situation in Lima, in Peru, in the region and around the world. Itís a challenge to improve our system and achieve the same coverage as other countries that provide healthcare. We are now seeing big change. Iím most often working on advocacy, I never stop my advocacy; I always see something to work for. If you donít do that there will be no change.
If you could give a word of advice to other IAPO members what would it be?
Continue fighting for your beliefs, we have two kinds of responsibilities; to people that donít have the same information and to empower. We have a very big responsibility and we need to continue fighting.
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