MELQUIADES HUAUYA ORE
Stopping Tuberculosis and Antimicrobial Resistance
“At 17, I was in love with life, wanting to achieve my goals of studying and helping my family by working. But I had multi-drug resistant tuberculosis (MDR-TB) that robbed me of the next five years of my life. I couldn’t think about my future. I couldn’t make plans. I could only lie in bed, take pill after pill and bear my own suffering. I had to fight every day. To get my medicine, my family had to carry me up and down the steep hills where I live. When we thought we couldn’t go on any longer, something amazing happened. We got the support of a community health worker (CHW). She was my strength in those moments. She not only brought me my medicines to my house. She brought into my life hope, strength, and another way of seeing things. No one should be alone in this fight. Every person deserves the appropriate treatment and support that they need to get better, overcome drug-resistance, and have the opportunity to reach their goals and fulfill their dreams.” -Melquiades “Con 17 años estaba aferrado a la vida, queriendo lograr mis metas de estudiar y ayudar a mi familia por trabajar. Pero tenía la tuberculosis multi-droga resistente (MDR-TB) que me robó de los próximos cinco años de mi vida. No podía pensar en mi futuro. No podía hacer planes. Solamente podía estar acostado en la cama, tomar pastilla tras pastilla y aguantar mi propio sufrimiento. Tenía que luchar cada día. Para conseguir mis medicinas, mi familia me tenía que llevar encima una manta subiendo y bajando las largas escaleras en los cerros donde vivo. Cuando pensábamos que no podíamos continuar, algo increíble pasó. Recibimos el apoyo de una agente de salud comunitaria. Ella era mi fortaleza en esos momentos. No solamente trajo mis medicinas a mi casa. Trajo a mi vida esperanza, fortaleza, y otra manera de ver las cosas. Nadíe debería estar solo en esta lucha. Cada persona merece el tratamiento y apoyo que se necesita para recuperarse, salir adelante de la droga-resistencia, y tener la oportunidad de lograr sus metas y realizar sus sueños.” -Melquiades
Tuberculosis (TB) is a health crisis and is now the world’s number one infectious disease killer, even though it is both preventable and curable. Alarmingly, it is becoming increasingly drug-resistant, rendering medicines ineffective and the disease difficult to treat or wholly untreatable. A person can become infected with drug-resistant TB with inferior treatment quality, when treatment is interrupted, or through direct transmission from someone who already has the disease.* Multi-drug resistant TB (MDR-TB), which personally affected Melquiades, is driving the spread of antimicrobial resistance (AMR) globally and currently still often necessitates a long and painful treatment involving many different kinds of drugs with strong side effects that can cause damage and even permanent disability. Although some advancements to TB treatment have been made in recent years, still, just over half of people who receive MDR-TB treatment globally are treated successfully.** Unless we take immediate action to find and support people fighting against this disease, MDR-TB is projected to cost the global economy $16.7 trillion and kill approximately 75 million people globally over the next 35 years.* However, there is hope because TB and its drug resistant forms are preventable and curable, and with access to appropriate diagnostics, treatment, and support, it is possible for a person to recover, reach cure, and return to their goals and dreams. *The Price of a Pandemic: Counting the Cost of MDR-TB, All-Party Parliamentary Group on Global Tuberculosis ** WHO Global TB Report 2018
Melquiades Huauya Ore spent years as a teenager confined to a bed battling multi-drug resistant tuberculosis (MDR-TB) in Lima, Peru. He overcame this brutal disease with access to medicines, a committed medical team, the caring support of his family, and a dedicated community health worker. Part of Melquiades’ story was captured in the award-winning documentary Bending the Arc, produced by Strongheart’s co-founder Cori Shepherd Stern. Following its premiere in 2017, Melquiades joined forces with Strongheart, jumping from the big screen into the TB advocacy space to raise his voice to end TB and stop the spread of drug resistance.
OUR WORK TOGETHER:
Since the beginning of 2017, Melquiades trained in Strongheart’s Change Agent Program, diving deep into issue-area learning on TB, AMR, health service delivery, and the global landscape of these issues, studying a vast number of reports, articles, and other learning materials including a USAID short course on AMR. He has become a strong, informed, and articulate speaker who can combine his personal experience with expertise on the issue to deliver powerful messages to audiences and in one-on-one conversations with global leaders. Melquiades’ story and voice shine a light on how every person affected by TB can and should have the treatment and support they need to reach cure. His advocacy on the global stage as well as in his home country of Peru brings hope and an illuminated possibility of ending the disease and stopping AMR.
Melquiades’ voice is needed now more than ever to put a spotlight on the human experience of drug-resistant tuberculosis and to highlight solutions to tackle the disease and AMR at large through efforts to find and support people affected by the disease. 2018 is a landmark year for tuberculosis. In an unprecedented effort to raise the political priority of tuberculosis, world leaders will gather for the first-ever High Level Meeting (HLM) on TB in September at the United Nations General Assembly. At this meeting, Heads of State will sign a political declaration that will shape the global response to tuberculosis, direct large scale funding priorities, and guide governments in protocol for their national action plans. Melquiades has been actively engaged in the declaration drafting process, advocating for the kind of comprehensive care that he personally knows is essential for people to be able to adhere to treatment and reach cure such as community-based psychosocial, nutritional, and socioeconomic support, as well as access to drugs with less debilitating and painful side effects. He has also been advocating for language recognizing MDR-TB as a crisis and a priority concern for containing AMR. The human experience of TB can often be sidelined in high-level, academic, and political conversations. Indeed, many specific points around community-based solutions were not in the original drafts of the UN Political Declaration, a document of unprecedented political importance. Working closely with Strongheart across many rounds of negotiations and under tight turnaround deadlines, Melquiades has been able to leverage his powerful personal experience and strong voice as an advocate to influence UN Missions, carry forward recommendations to prioritize his key points, and help shape each draft of the declaration. Many of Melquiades’ inputs, including some of his specific language, are in the final UN Political Declaration that will be signed by Heads of State in the end of September. His words and vision, now reflected in the declaration, will help to advance community-based solutions, such as the community health worker model, on the global health agenda and also help signal to governments, organizations and donors that this model should be a priority for funding and implementation at the country-level to end TB. Melquiades’ advocacy has included meeting with key influencers and direct participation in high-level events. These include engagements at: the Skoll World Forum, Congressional meetings and events on Capitol Hill, the World Bank Group and International Monetary Fund Spring Meetings, G20 Parliamentary Working Sessions at the United Nations, the Congress of the Republic of Peru, the National Academy of Medicine, the Civil Society Hearing for the UN High-Level Meeting on TB at the UN Headquarters, and with Missions to the United Nations in New York City. Melquiades’ advocacy has been recognized and highlighted by leaders, including the President of the United Nations General Assembly: “…We heard not just about the data and the facts but also the impact of this disease on people. And I have to say, a lot of it was not easy to listen to. It involved stories of real pain and of real suffering. For example […] We heard from Melquiades, a young man from Peru. His parents were forced to choose between educating his siblings or paying for his treatment. And for a while, a lack of infrastructure meant his family had to carry him to the hospital on a blanket…” – H.E. Mr. Miroslav Lajčák at the Civil Society Hearing for the UN High-Level Meeting on Tuberculosis, June 2018
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