STORY INLINE POST
Q: What is the main purpose of AMECAT and what is the association’s role in the lives of thyroid cancer patients?
A: AMECAT began as a patient support group in 2008 after I was diagnosed with thyroid cancer. I started to research the disease because I had never heard of it before. 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. Moreover, I was aware that some diseases had patient associations to which other patients suffering from that disease could reach out but for this type of cancer there was nothing of that sort. As a result, I took on the task of connecting with other patients to share our experiences and try to share more information about the disease with other people. We started almost as a group of friends that would meet at a coffee shop. “Café Tiroides” is the name we gave to that monthly activity, which is now paused due to COVID-19.
The group started to grow and each time we had someone new we would share with them information that I could not find before: treatments, surgery, follow-up, life quality and life expectancy. This cancer has a positive survival rate and a fairly good quality of life but it is important to know about the symptoms and have recommendations from doctors and hospitals to go to. To date, we have more than 2,300 members across the country and around 300 in Mexico City. The organization was founded as nonprofit organization and it was formalized as such in 2015 as AMECAT A.C.
Q: How is the country addressing this disease and how is AMECAT collaborating in these efforts?
A: Most AMECAT members go to IMSS, ISSSTE, INCan, INCMNSZ and Hospital General de México. AMECAT will recommend other options if patients do not have access to these institutions or if they wish to know which one provides the best attention according to the patient’s condition. Twice a year, AMECAT organizes medical days, one on the world’s Thyroid Cancer Awareness Day on Sept. 24 and the other on May 25, which is the International day of the thyroid gland diseases.
Thyroid cancer is the No. 3 cause of cancer for women in Mexico. While its death rate is low, prevalence has increased. As a result, we have worked hard to make this disease visible so women can get a timely diagnosis and attention before it is too late. Because it is not a very aggressive cancer, doctors tend to be calm in their approach to this disease, although they never neglect its seriousness. Patients, however, are anxious to act as soon as possible due to a general lack of in-depth understanding of the cancer. AMECAT has approached hospitals that treat this cancer to communicate how we feel about the calm approach to the disease and they have improved their communication with patients as a result. One of the symptoms of losing the thyroid is that we suffer from emotional distress, anxiety and depression, which is why it was very important for us to address this.
Q: What concrete actions between the public, private and social sectors could benefit patients suffering from this disease?
A: Last year, 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. This medicine is not prescribed very often after surgery to remove the gland; nonetheless, we would like to have it available at all public institutions. The drug was created to treat thyroid cancer patients after surgery and is called Thyrotropin Alfa. These are recombinant hormones which is type of man-made protein used to diagnose any remaining thyroid cancer after treatment, and is also used to help treat thyroid cancer. However, IMSS treats around 60 percent of our registered patients so its inclusion in IMSS’ medicine basket is key. When we presented this initiative, many patients testified to raise awareness and gain support for the development of a better environment for thyroid cancer patients.
Q: What are AMECAT’s efforts regarding preventive healthcare?
A: This cancer cannot be prevented. However, early detection is key, although its presence might be hard to detect due to the tricky zone where it forms. Around 50 percent of the patients exhibit undetectable changes or doctors confuse them with hyperthyroidism, which may lead to detection of the cancer at advanced stages, when it is visible through the person’s neck because it forms a lump. Even if the person detects the lump, they might not experience any symptoms, delaying a diagnosis. If the lump develops and grows, removal is harder. Radiation can destroy the thyroid gland and any other thyroid cells, including cancer cells, that take up radioactive iodine (RAI I-131).
At AMECAT, we ty to share information about the common anomalies a person might experience when suffering from thyroid cancer so people can be aware of this disease and how it works. We participate in government health promotions to reach as many people as we can.
Q: Why are patient associations key to creating patient-centric solutions?
A: 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, such as our efforts within the Chamber of Deputies. These efforts can also reach private institutions, such as pharmaceutical companies or medical devices companies. Luckily, hospitals are very open to receiving these types of associations, so more patients can take advantage of this and start enjoying a better quality of life.
AMECAT has received training from the authorities so we are able to give other patients the right information about the general attention they can receive and the emotional support that might benefit them. This type of communication has been very useful for our patients.
Q: How will COVID-19 impact cancer approaches and treatments?
A: We have experienced a delay in our treatments. However, this disease does not require a constant follow-up due to its mild aggressiveness. However, patients who were about to have their removal surgery are concerned even though the wait time for these procedures is not critical.
A thyroid patient requires yearly follow-ups. We are never discharged from medical appointments because there is always a risk of the cancer coming back years later. Patients attending private facilities have had the chance to receive telemedicine consultations. However, people depending on the public sector will just have to wait. Cities like Mexico City, Monterrey and Guadalajara and states such as Puebla, Oaxaca, San Luis Potosi and Aguascalientes are the places with the greatest prevalence of the disease and our patients there are among the most affected regarding their checkups.
The Mexican Association of Thyroid Cancer Patients (AMECAT) is a non-profit civil association created by and for patients to share information with the support and advice from some of the best doctors specialized in the subject