Unity to Better Understand, Treat DiseasesBy Miriam Bello | Wed, 09/02/2020 - 12:31
Pfizer describes patient associations or organizations as a grouping of people united due to suffering from a pathology and who seek, by grouping together, mutual support, better knowledge of the disease and to provide information to other citizens about its prevention and treatments.
Their importance can rely on the many pillar activities they tackle when seeking for a better panorama of their disease within the various sectors of the healthcare spectrum. Among their most important activities, patient associations are a great source of support and advice as they are conformed by people living with that same disease and that have gone through a similar experience. Sharing information is also a key activity for patient associations and this is especially valuable for patient that struggle to find basic information on rare diseases, such as thyroid cancer in Mexico.
“Unlike other types of cancer that are more common, thyroid cancer is rather rare. I wanted to know about life quality, treatments and life expectancy but information about it in Mexico was very hard to find,” said Claudia Figueroa, President of the Mexican Association of Thyroid Cancer Patients (AMECAT), to MBN. From this experience, Figueroa took the task of connecting with other patients to share her experiences and try to share more information about the disease with other people.
In countries like the UK, patients associations have grown to the point of playing a key role in research funding, facilitating more research and having a say on where money is spent. In this way, patients can have a better understanding of the treatments and procedures and can provide their opinion on those projects to help develop better solutions for their disease. Patient associations can also create a favorable environment for doctors, creating a relationship based on trust and respect. In many cases, these associations can recommend facilities and medical professionals from whom they have received the best treatment from.
Another key activity of patient associations is to ensure a better, more equal distribution of treatments. “We addressed the Chamber of Deputies during an event where we presented an initiative focused on thyroid cancer attention, mostly promoting a drug that ISSSTE administrates but not IMSS and the other institutes. This drug contributes significantly to our quality of life, mostly at early stages because it provides the appropriate iodine doses,” said Figueroa.
In Mexico, associations’ importance is strengthening depending on the disease. “Mexico has patient associations that are active in the country’s decision-making and their importance strengthens every day. In fact, at the beginning of the year, we were able to see how they brought attention to the HIV medicine shortages in Mexico City,” said Louise Batchelder, Executive President at Synelog Mexico during an interview with MBN, referring to the protests of HIV patients in Mexico City.
“Having an organized association is a very helpful support tool for those who have the disease. We seek alliances that can build a better environment for patients and these efforts can also reach private institutions, such as pharmaceutical companies or medical devices companies,” said Figueroa.