Bonus Post: Melecio´s Life Story
Because we didn´t talk at all about ASPAT in Saturday´s post, and because we were late with the Friday blog, we´ve decided to offer you all a special bonus post! In this post, we will return to the life and times of Melecio, filling in the promised teasers from the Thursday blog. To refresh your memory, here are the topics we promised to cover:
(1) How one can use the lessons one learns in professional life to run a non-profit
(2) How a system of responsibility (society to patient and patient to society) is necessary to teach people to take control of their lives
(3) How to target a seemingly-narrow message to various interest groups
(4) How to increase visibility of a non-profit and of an issue
MELECIO´S LIFE STORY
Most GlobeMed members have been told Melecio´s story many times before, but for the sake of our non-GlobeMed readers, and our newer initiates, here it is in all its glory.
Melecio was born in Puno, a Peruvian city near Lake Titicaca, where he attended primary and secondary schools. He moved to Lima to go to high school, and graduated in 1999 at the age of 19. He had always dreamed of becoming a pilot, but shortly after his high school graduation, he was diagnosed with TB for the first time. Although he was put on medicine immediately, the drug courses were so debillitating that he was not able to attend university or hold down a job for the six months that he was on them. Once he finished his treatment course, he returned to school and began working part-time as a mechanic for a popular airplane company in Peru. In 2003, he once again became mysteriously ill, and would cough blood when exerting himself. Although he returned to his doctors, they were very puzzled. Coughing blood is usually a symptom of TB, but Melecio lacked any of the other telltale signs, and the X-rays they performed on him regularly turned up negative. In 2004, he was scheduled for massive surgery on his lungs that could potentially save his life. While operating, the doctors discovered the TB bacillus, and put him back on the medicine. This time, the treatment stuck, but thanks to the surgery, Melecio´s dream of eventually becoming a pilot was over. Instead, he decided to dedicate his life to helping others suffering from TB. Thus, ASPAT was born.
Melecio´s life story highlights a number of simple lessons that GlobeMed members will undoubtedly find helpful both in while in GlobeMed and when planning for the future.
Lesson 1. How one can use the lessons one learns in professional life to run a non-profit
Melecio´s model for ASPAT was heavily influenced by his time in the airplane industry. Working in a professional setting taught him two things¨: (1) Every problem has a solution, it´s just a matter of finding it and (2) To find the solution, everyone involved has to take a certain amount of responsibility for the situation.
This leads us pretty directly into lesson 2.
Lesson 2. How a system of responsibility (society to patient and patient to society) is necessary to teach people to take control of their lives
The model of responsibility is a really major part of ASPAT´s philosophy. Melecio teaches that if a solution to the problem of TB is to be found, society must realize it has a responsibility towards TB patients, and likewise, that the patients have responsbilities towards society.
SOCIETY –> PATIENTS
1. Educate members of society as to the symptoms of TB, the most successful preventative measures, and how it is most commonly caught
2. Provide decent healthcare to the affected populations, including nutritional supplements
3. Treat patients with respect – don’t discriminate against them because of their TB status
PATIENTS –> SOCIETY
1. Complete a full course of treatment
2. Comply with all doctor’s instructions as far as they are capable
3. Be open with their families (esp. their children) regarding their TB diagnosis
4. Do their utmost to secure access to preventative prophylactics for their families
5. Protect their families and the rest of society by undergoing quarantine if this proves necessary
But while having a strategy for countering the disease is all well and good, how does ASPAT secure the funding necessary to make a difference in a country that is trying to deny the impact of TB?
Lesson 3. How to target a seemingly-narrow message to various interest groups
Melecio shared with us one of the techniques that he has used to try to gallvanize the Peruvian government.
Because TB is considered a mark of poverty, many Latin American governments (Peru among them) are trying to deny that their populations are being stricken with the disease. Chile, for example, is particularly eager to distance itself from TB, because it’s considered a wealthier nation. Now, everyone knows that there is TB in Chile, it’s just off the record. This poses a risk to Peru when Chileans try to immigrate. The very poor immigrate illegally – and naturally, they are the population that is most likely to be carrying TB (due to the poor healthcare they’ve received throughout their lives). The Peruvian government doesn’t know when these immigrants cross the border, so it can’t keep track of their cases of TB. The wealthy Chileans enter the country legally, but they have generally managed their TB by self-medicating, in which case their cases aren’t documented either. The more global the world gets, and the more people cross borders (not just between Peru and Chile, but between Peru and the U.S.) the more likely it is that TB will spread, which is a huge issue with extremely-drug resistant TB on the rise, because there is no treatment. Right now, it’s confined but with so much contact between countries, it’s inevitable that if the situation doesn’t change, XDR-TB will threaten more and more people. Ultimately, the issue is not just one of internal health (which the government might not see as its responsibility), but rather is a matter of national security. We got to see this strategy in action at our meeting with the various doctors, regional heads, and government officials on Friday – TB as a threat to security is a recurring theme to get the government in motion.
And finally, here is the lesson that is perhaps most relevant to our GlobeMed chapter:
Lesson 4. How to increase visibility of a non-profit and of an issue
Right now, Melecio supplements his work with ASPAT by designing charitable projects and selling them to large companies who are seeking to better their image by appearing generous and socially aware. He is hoping to encourage more of these large companies to make TB their cause-de-jour, ideally because having large corporate names behind the cause will alleviate someo of the stigma currently faced by TB patients. Once these corporations have begun to shift the idea that TB is only a disease that the very poor get, Melecio hopes to contact actors and artists who have had TB, so that they can become the face of TB (mimicking the way in which HIV/AIDS became more accepted as a disease that could potentially affect everyone after it was championed by actors and artist in the U.S.). With more famous people lending their support, the stigma should eventually dissipate, and in the meantime, TB eradication should at least become a more visible campaign.
So, that’s the end of life lessons from Melecio. We hope you’ve enjoyed hearing about his experiences with ASPAT, and that you feel like you learned something useful!