Patient Advocacy in SIMRIO 2019

On April 11th and 12th we were at the International Mastology Symposium (SIMRIO), in a room with Patient Advocacy, organized by the Brazilian Clinical Oncology Society (SBOC).

In international medical congresses, it is common that patients' representatives and patients are in the same room as doctors. Sadly, it does not happen in Brazil, because it is not permitted.

So that the patients could be inserted in the context, we from Laço Rosa, joined by SBOC, organized a Patient Advocacy room, to talk about important topics to breast cancer patients. Throughout this article, we will show you a bit of the content exposed at SIMRIO.

Schedule April, 11th

Biosimilars: Dr. Cinthya Sternberg, Executive Directress of SBOC, presented biosimilars medication. During the lecture, she Explained the differences between generics, biologicals, and biosimilars. Also showed the importance of these medications on cancer treatment.

A list of ANS' medicaments and procedures: To talk about this topic, we invited Dr. Teófilo Rodrigues, ANS' Health Assistant Manager. He showed how new medicines and procedures are added to the ANS list, which makes it mandatory its coverage by health insurance.

Testimony: Priscilla Torres, rheumatoid arthritis' patient, and Biored's representative talked about her history with the disease and your fight to support other patients with the same diagnosis.

PDP: Rosane Cuber, Bio-Manguinhos/Fiocruz's Vice-Directress of Quality, presented us public-private partnerships politics for medicine production and how Bio-Manguinhos produces it.

GoALL search: Leoni Margarida, AMUCC's President, showed us a search about how people deal with cancer. Very important data was presented like 88,73% are afraid of being fired if he/she receives a cancer diagnosis.

Patients' Rights: Debora Brazil, lawyer, gave us a lecture about the patients' rights.

Hired: We presented to our guests the first employment and entrepreneurship platform dedicated to breast cancer patients. Its objective is to lessen barriers and facilitate their return to the job market. To know more, click here.

Follow-up with specialists: Dra. Sandra Gioia, Dr. Francisco Pimentel, Dr. Felipe Zerwes and Dr. Fabricio Brenelli showed us a brief of what was presented at the SIMRIO's main room, exclusive for medical workers.

Schedule April, 12th

Patients Navigation: Dr. Sandra Gioia introduced us the Patients Navigation Program, which aims to lessen the barriers between the patients and the public health system. The pilot study was made by Laço Rosa in conjunction with Dr. Sandra and sponsored by Avon Institute, at Andaraí. From this experience, we got interesting data. According to the patients attended, the main barriers for breast care are social support, fear, communication worries with the medical community, financial problems and problems with the health care program system.

Why talk about humanization: Dr. Sabrina Chagas, clinical oncology's specialist, showed a new way to treat oncologic patients. According to her, it is necessary to humanize the relationship between doctor-patient and to think about health holistically, which constitutes mental and body balance.

Changing the nutritionist view: on this lecture, Patricia Arraes, nutritionist, taught us how eating is important for all.  According to her, it is important to lessen the consumption of processed food and raise the consumption of natural products. It is also necessary to rethink the use of sugar in our eating habits.

How to help the patient deal with fear:  Glauce Correa, psychologist, answered the 10 most frequently asked questions for cancer patients. And the main one is how to deal with fear. According to Glauce it is important to free yourself from guilt and fear.

Family view: Marcello Lobo, Luciana Lobo's husband, breast cancer patient, told us the experience the couple went through with the disease and how the family suffers together with the patient the disease, that is why the union is very important. He showed how he supported his wife during the treatment to overcome it together.

#50shadesofpink: Dr. Gilberto Amorim, oncologist doctor and Laço Rosa's scientific adviser, and Fernanda Muniz, patient and sexual therapist, talked about the importance of the sexuality for cancer patients. Sexuality represents health and well-being and has to be practiced without any tabu. We also had the participation of Dr. Maria Julia Callas, a gynecologist.

Follow-up with specialists: to end the day, Dr. Sandra Gioia, Dr. Gilberto Amorim, Dr. Alexandre Boukai, Dr. Rosemar Rahal and Dr. Carlos Ruiz briefed what was discussed in the main room of SIMRIO. Lymphedema, Sentinel lymph node, axillary treatment, and premature dection were some of the topics debated.

For Laço Rosa, it was an honor to participate in such an important medical event like SIMRIO 2019. One of the main gains was the opportunity to lessen the information gap between doctors and patients and to transmit knowledge to the patients.