Patient Associations’ Commitment Toward Improvement

Suffering from a disease affects diverse aspects of a patient’s life. Aside from the physical and mental impact it has on a person, a disease also brings financial pressure. It affects patients and their relatives, which often leads people to seek for support among others who can understand their situation. According to WHO, patients seek for advice from their doctors. However, due to the complications they might face, approaching a network specialized on their process creates more integral support, as many of these networks are solid patient associations that offer a variety of services, including educational materials, consultations, group therapy, team building activities and other resources to teach individuals how to cope and adapt to the lifestyle that is often dictated by their illnesses.

Patient associations or organizations have strengthened their presence as actors of the healthcare sector and are currently a pivotal part of treatment development. In fact, PAHO has included them in the creation of health strategies for drug development, treatment creation and policy formulation. Scientifically, patient associations have been able to provide an insight into the true experience of a group targeted for a development. According to the European Lung White Book, their work with science also contributes to research, as their input helps to best determine priorities, develop better criteria for research policies and define future pipelines.

At the Forefront of Participation

Roche is one of the companies integrating patient associations into research. The company invites patient groups mainly to clinical trials to offer information and promote transparency. In Mexico Roche mainly works with cancer associations, to which they offer awareness campaigns and monetary support to promote their activities. 

Bayer is another company allying with patient associations. According to Laura Olivas, Women’s Health Innovation Marketing Manager of Bayer Mexico, the company is joining the Mexican Association for the Fight Against Cancer (AMLCC) to combat breast cancer. Together, they have strengthened the altruistic actions of the association, focusing on education, prevention and support for women who today fight against cancer. Furthermore, during July and August, Bayer's main women's health products changed their packaging to pink. The company also contributed MX$1.5 million (US$73,605) so AMLCC can strengthen its programs in favor of the health and well-being of the female population.

In Mexico, patient associations for cancer are the most common. Associations for this and other common ailments in the country, such as diabetes and cardiovascular diseases, have had the most impact on the political spectrum, including Deputy or Senate initiatives.

The Make a Wish Oganization, which is dedicated to promoting the interest of lysosomal patients, has enlisted the main achievements it has had in Mexico, including:

• Modifying the General Health Law. Art. 224 bis and 224 bis 1 were added, expanding possibilities, paths and certainties in favor of patients with rare diseases. This milestone was achieved after 50 years without modifications in this area.
• The provision of enzyme replacement treatment at ISSSTE and IMSS for patients with lysosomal disorder.

The Mexican Diabetes Association (AMD) has led many initiatives to actively battle and change diabetes risk scenarios in Mexico. As a result, it has supported an initiative to the Senate for children to have access to full treatment for this disease at public institutions. Some hospitals are already providing treatment but they do not cover auto-monitoring, which is expensive since parents have to measure their children’s glucose eight to 10 times per day. “Achieving this in the public system is not easy,” said Gabriela Allard, President of AMD, to MBN.

For cancer patients, AMLCC is one of the largest patient associations in Mexico. Among its most notable achievements are:

• More than 54 mammographs and nine Mobile Units and specialized equipment have been donated to the Ministry of Health over the past 15 years to help in the timely detection of cancer throughout the country.
• More than 30 thematic forums have been held with Congress
• Having constant communication and direct links with key authorities to convey the real needs of patients.

For cardiovascular diseases, the main death cause in Mexico, the Mexican Association of Cardiology has significantly contributed to one of the largest problems for surgeries on cardiovascular patients, which was to raise awareness on cardiovascular anesthesiologist with knowledge of clinical cardiology for the anesthetic act in the cardiac patient, acquiring knowledge of the different diagnostic methods during the evaluation and perioperative management of patients.

Aside from political achievements, many associations have focused on being a bridge to bring better care options to their members. In Nuevo Leon, the patient association United Through Art Against Childhood Cancer (UNAC) has a list of innovative support tools for patients, which include bone marrow transplants, partially or fully funded; prevention and education through an interactive video game called ReMission, whose objective is for children to understand through a playful experience the stages and effects of the treatment they receive to fight cancer; a scholarship program for medical professionals abroad and research on ​​bone marrow transplants and leukemia treatment.

Patient Care Amid the Pandemic

The Mexican Society of Oncology (SMEO) is one of the best-known associations in Mexico. MBN spoke to its President, Héctor Martínez-Said, to have a clearer sense of what a large group of the population has faced during the COVID-19 pandemic. Martínez-Said explained that both the public and private sectors have had to reassess priorities, so SMEO had to find a way to treat cancer, which cannot wait, and protect patients against COVID-19. “We have had to prioritize patients at the National Institute of Cancerology according to their diagnosis, addressing the challenges this involves. In many cases, we could not halt treatment and we used all precautions, including isolation, to continue the cancer treatment.”

Martínez-Said also talked about hospital reconversion, which forced patient displacement to other care centers. He told MBN that in Mexico City, patients were moved from one referenced hospital to another, from instance from Hospital Juárez, Hospital General de México or INER to the National Institute for Cancerology (INCAN). A similar process of displacement took place in other large cities like Guadalajara and Monterrey. However, in many other hospitals around the country, cancer patient treatment was postponed as the option of moving them to other COVID-19-free hospitals did not exist. “The result is that people were not diagnosed and assisted at an early stage, which means they will have more advanced cancers by the time they are treated. Mexico’s cancer-related deaths currently stand at 85,000 a year,” said Martínez-Said.

To understand the virus’ impact on care provision, MBN also spoke with Claudia Figueroa, President of The Mexican Association of Thyroid Cancer Patients (AMECAT). “We have experienced a delay in our treatments,” said Figueroa. Even though this disease does not require a constant follow-up due to its mild aggressiveness, 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,” she added.

Moreover, Figueroa portrayed a similar scenario to what Martínez-Said explained. “Patients attending private facilities have had the chance to receive telemedicine consultations. However, people depending on the public sector will just have to wait.” Martínez-Said warns that the negative impact that COVID-19 has had on treatments for cancer and other chronic diseases will manifest during 2021. He calls for public-private collaboration to create accessible coverage and reduce waiting times.

As COVID-9 vaccination approaches, patient associations are mobilizing to have informed, equal access to these developments. One example are cancer patients in the US. Patients have made their voice heard through an article published in Nature, where they ask for clear evidence on all effects that COVID-19 vaccines can have on their condition depending on their cancer stage or treatment. In Spain, the Rheumatoid Spanish Society has joined with other three associations to be prioritized to receive the COVID-19 vaccine, as their disease makes them more vulnerable to the virus.

Creating a Better Outcome for Patients

During the ongoing pandemic, patient organizations have raised their voices to address the current scenario and create better attention conditions for a situation that seems far from over. According to Kidney News, a US patient association, patients have sent an open letter to America’s hospitals and health systems saying they “are deeply troubled by news reports that some health systems and state governments are considering crisis-management policies that would deprive certain patients, including patients with end-stage renal disease, of life-saving interventions for COVID-19, including ventilation.” The letter notes that kidney failure “is not a ‘terminal’ condition and should not be treated as such. “We call on all health systems to recognize that kidney failure patients have the same inherent worth as any other patient and should be afforded the same level of care.”

As a result of the COVID-19 pandemic, countries like Spain already have patient associations for people who have suffered from the virus. Heraldo reported the first association of this type in Aragon and its president, Mar Martín, said the association is gathering different COVID-19 experiences to build a better understanding of the virus and its effects. Martín explains that they aim to collect enough information to improve the current care situation to begin compiling evidence and developing treatment for those who have long-term sequels.