Activities and actions report 2017 - Psoríase Brasil by psoriasebrasiloficial

Activities and Actions Report 2017

Introduction __03 Month-to-Month __05 January __06 February __08 March __10 April __12 May __14 June __16 July __20 August __22 September __24 October __26 November __32 December __34 Media Relations __36 Events __39 Press Office __39 Digital Communication __40 Final Considerations __41

Working since 2002 and formalized as a non-profit organization in 2010, the Union of Associations of Psoriasis Patients of Brazil - Psoríase Brasil - is dedicated to working in favor of psoriasis and psoriatic arthritis patients. Above all, the organization seeks to achieve its purpose by way of advocacy work carried out with public decisionmakers and the dissemination of information about the disease and in defense of the quality of life and respect of patients. In 2017, Psoríase Brasil achieved a historic feat by creating the Joint Parliamentary Front for the Cause of Psoriasis and Psoriatic Arthritis. This parliamentary instrument was implemented in the National Congress during the annual World Psoriasis Day Campaign, which was held by the organization in October. Thus, in its third consecutive year of campaigning in Brasilia, Psoríase Brasil managed to progress and was able to achieve the institutional involvement of federal deputies and senators. This was made possible thanks to the institution’s years of tireless work and the fortune of meeting members of parliament who were aware of health-related causes. After meetings in the offices of several members of parliament, the institution gained allies and went after the instruments necessary for the creation of the Front. The launch ceremony of the Joint Parliamentary Front was held on October 19, in the presence of deputies Mr. Sinval Malheiros (President), Mr. Jorge Silva (Secretary General) and Ms. Carmen Zanotto, and senator Álvaro Dias (Vice President). Advocacy work also progressed in Porto Alegre, Rio Grande do Sul, with the approval of a bill to create a Psoriasis Care Network, which faced several setbacks from the government itself, but these were overcome, and the law was enacted. The Association also worked side by side with city councilor José Freitas, who joined the psoriasis cause and became its spokesperson in the City Council.

The search for progress in the access to treatment led the Association to head a strong campaign against the refusal of the National Health Agency to incorporate immunobiological drugs into the treatment of psoriasis for specific cases. Since then, Psoríase Brasil has sought answers and a channel of dialogue with the Agency and the Ministry of Health. In a seminar held by the newspaper Folha de S.Paulo at the end of the year, President of the Association Gládis Lima had the opportunity to show representatives of the entities the need for them to review their position on the subject. The debate caused significant repercussions in the national press and an apparent opening for dialogue. Since 2014, the Association has sought to advance the implementation of the Resolution of the World Health Organization (WHO), which in its 67th Assembly, in 2014, put psoriasis on the global agenda as a public health issue. This year, Psoríase Brasil asked the WHO for the translation and printing of the Global Report on Psoriasis, in order to give the Portuguese-speaking audience access to the important document, which is a valuable source of information and a guide for actions aimed at providing breakthroughs to patients. The entity also held the Second Wave of the National Psoriasis Survey, where it presented new indicators. The data presented was worked on throughout the year in information campaigns and communication materials. After a year of hard work, Psoríase Brasil launched a new pilot project in December: the training of health agents in the municipality of Esteio, Rio Grande do Sul, near the state capital of Porto Alegre. This and other challenges will be worked on over the next few years, always with a view to advancing the cause of psoriasis and psoriatic arthritis in Brazil. Since the beginning of the year, the leadership of the creation of the Parliamentary Front in the Chamber of Deputies and in the Federal Senate was one of the objectives drawn up. Upon delivering this 2017 Activities and Actions Report, Psoríase Brasil is proud to be able to show society how it achieved such a feat, among other actions.

Month-to-Month

January The year began with the production of the 2016 PsorĂase Brasil Activities and Actions Report and the planning of activities for 2017. Projects to be presented to the Associationâ&#x20AC;&#x2122;s sponsors were developed, among the most notable being the 2017 National Advocacy Project. Based on the 2014 Resolution of the World Health Organization about the disease, the central work proposal by which the Association proposed to act between January and December had the following focal points:

Hosting the World Psoriasis Day 2017 Campaign in the National Congress;

The creation of a Parliamentary Front in the Chamber of Deputies and the Federal Senate;

January

Advocacy work in the National Congress with the aim of spreading awareness among deputies and senators, in order to have better public policies aimed at patients with psoriasis and psoriatic arthritis;

6/ Approval of a city ordinance, in Porto Alegre, for the creation of a Psoriasis Patients Care Network;

Information campaigns and raising awareness of public agents for the incorporation of new drugs by CONITEC and ANS;

Participation in the Brazilian Dermatology Congress - which did not take place due to a lack of financial resources;

General topics that appeared during the year in accordance with the demands presented in the period. The official Psoríase Brasil Community was also created on the Association’s Facebook page on January 25. The aim of the community is to bring patients together in order to have important discussions about the disease. During January, Psoríase Brasil emailed the World Health Organization (WHO) to request the institution receive the go-ahead for the

Portuguese

translation,

desktop

publishing and printing of the Global Report on Psoriasis, which was granted and carried out throughout the year.

February The Second Wave of the National Psoriasis Survey was also completed and launched (the first was held in 2015). The Second Wave, entitled “The Psoriasis Situation in Brazil: A Necessary Review”, presented comparative data to the 2015 survey and included new indicators. The methodology made use of Psoríase Brasil’s database, which contains 5,777 questionnaires, and the probabilistic and exploratory sample was worked upon. The survey, supported by the laboratory Janssen-Cilag Farmacêutica Ltda., was widely used throughout the year for the World Day Campaign and for the production of informative materials, such as videos and infographics. Attentive to initiatives that may help psoriasis patients, Psoríase Brasil became aware of the beginning of the use of the DermatoNET app by the Government of the State of Rio Grande do Sul. The app is a new tool developed by TelesaúdeRS, a project of the Federal University of Rio Grande do Sul and the Government of the State of Rio Grande do Sul that offers support to primary health care professionals and other care levels of the Single Health System (SUS) by way of online consultations, education and diagnoses. The leadership of Psoríase Brasil got in touch with the project coordinators in order to form a relationship and learn more about the tool. On February 16, ordinance 219/16, authored by city councilor José Freitas, regarding the creation of a Psoriasis Care Network in the city of Porto Alegre, was approved unanimously among the city councilors. The document was forwarded to the Mayor’s Office for its consideration. In December 2016, the president of Psoríase Brasil had visited the City Council of Porto Alegre with the city councilor, where both spoke in the plenary room about the disease and the bill drafted by José Freitas.

February

City councilor José Freitas and Gládis Lima, president of Psoríase Brasil.

The ordinance aims to: strengthen comprehensive care for people with psoriasis at all points of the health system, with the implantation of a multi-professional care model which is user-centered and based on their health needs; promote, through activities, the acquisition of knowledge and development of skills and abilities of health care teams, expanding the network of trained professionals for the comprehensive care of people with psoriasis, and disseminate information about psoriasis to the public, such as its symptoms, treatment and care facilities, among others. In February, the 2016 Psoríase Brasil Annual Activities Report was completed and translated into English. Thus, the Association showed its accountability.

March In a meeting at the Health Secretariat of Porto Alegre, together with city councilor José Freitas, author of the ordinance for the creation of the Psoriasis Care Network, the leadership of Psoríase Brasil was welcomed by Primary Care General Coordinator, Dr. Thiago Frank. The meeting’s agenda included a request for the Secretariat’s support within the Mayor’s Office to approve the bill drafted by the city councilor, the offer of a partnership with the Association for the implementation of the Psoriasis Support Network in Porto Alegre and the rapprochement of Psoríase Brasil with the work done by TeleSaúdeRS and DermatoNET, so that the entity could contribute to the initiative. Focusing on the activities established for 2017, the Association was in Brasilia on March 21 for a meeting with federal deputy Mr. Sinval Malheiros to proceed with the proposal to create the Parliamentary Front of Psoriasis and Psoriatic Arthritis. Psoríase Brasil began discussing the creation of the Front at the end of 2016. The initiative aims, among other things, to seek support for the topic within the National Congress and to advance the implementation of the WHO Resolution. At the meeting in Brasilia, the date of the World Psoriasis Day 2017 Campaign was established, which took place on October 18 and 19. Gládis Lima, Jonas Flores, the executive coordinator of Psoríase Brasil, and Ana Paula Dixon, the entity’s communication advisor, also held a meeting with the National Health Foundation (Funasa) after the intermediation of Deputy Sinval Malheiros, who also participated in the meeting. The meeting with the director of Funasa’s Department of Environmental Health, Rodrigo Sérgio Dias, and the coordinator of International Technical Cooperation, Michelle Rodrigues, aimed at the rapprochement with Brazil’s representation in the Pan American Health Organization (PAHO) and the Ministry of Health as a way of seeking

March

Jonas Flores and Gládis Lima, executive coordinator and president of Psoríase Brasil, deputy Dr. Sinval Malheiros, coordinator of International Technical Cooperation of FUNASA, Michelle Rodrigues, director of Funasa’s Department of Environmental Health, Rodrigo Sérgio Dias, and the communication advisor of Psoríase Brasil, Ana Paula Dixon.

support for the cause. In addition to this meeting, Psoríase Brasil sat down with a government relations consulting firm with a view to its potential hiring in order to advise on the creation of the Parliamentary Front for Psoriasis and Psoriatic Arthritis. After the contact made in January, with the support of its press office, Psoríase Brasil signed the Agreement for the Granting of Rights to Translation, Printing and Publication of the “Global Report of Psoriasis,” of the WHO, in Portuguese.

April The national mailing list of the Psoríase Brasil Database was reviewed, which in April totaled around 12 thousand active emails from the registration database, made up of around 25 thousand patients. On April 18 and 19, the IFPA (International Federation of Psoriasis Associations) hosted the Twelfth Meeting of Latin American Regional Associations, with members of Latinapso (the Latin American Psoriasis Network), in Buenos Aires. On the first day, a proposal was presented to bring the Latin American countries together to form the “Global Psoriasis Coalition” for the implementation of the WHO Resolution. Brazil was included in the Steering Committee to assist and propose the organization of a global project for the implementation of the Resolution. It was decided that the IFPA’s project was to be presented at the organization’s annual meeting in Brussels in June. Jonas Flores, executive coordinator of Psoríase Brasil, in the Annual Meeting of Latinapso.

On the second day, the agenda was dedicated to the meeting between Latin American psoriasis associations. The Latinapso Annual Meeting was also held during the event, which saw the presentation of a new management team for the 2017-2020 term, which included the president of Psoríase Brasil, Gládis Lima.

April

Meeting at TeleSaúdeRS.

The executive coordinator of Psoríase Brasil, Jonas Flores, represented the Association by presenting an overview of the disease in Brazil, the work developed by Psoríase Brasil in the country and its Advocacy Project for 2017. On April 19, the subject of TeleSaúdeRS and DermatoNET was furthered with a visit by the Psoríase Brasil president to the service’s headquarters. In a meeting with the project coordinator, Dr. Marcelo Gonçalves, with coordinators of the service and with the Psoríase Brasil press office, Gládis Lima showcased the work done by the organization and put the know-how and the Scientific Council of the Association at their disposal to assist in the training of Primary Health Care/Basic Care professionals in matters related to psoriasis. The management of TeleSaúdeRS emphasized that the advocacy work carried out by Psoríase Brasil could be of great value to the project for maintaining the service in the state and potentially expanding it on a national level.

May

City councilor José Freitas and Gládis Lima, president of Psoríase Brasil, in meeting with the executive coordinator and the communication advisor of Psoríase Brasil, Jonas Torres and Ana Paula Dixon.

With vast support from the Porto Alegre city councilors, bill 219/16, submitted by José Freitas at the end of 2016 for the creation of a Psoriasis Care Network, was enacted into ordinance 12.247 on May 17, 2017. Mayor Nelson Marchezan Jr.’s veto of the bill was overridden by the City Council. Faced with the city government’s disregard for the issue, illustrated by the veto of the bill, the

May president of Psoríase Brasil had a meeting with councilor José Freitas to propose the creation of a Municipal Parliamentary Front in order to accelerate and contribute to the creation of the Network. The bill to create the Psoriasis Care Network in the city of Porto Alegre served as inspiration for councilor Suzana Alves to take the initiative to propose the creation of a Network in the city of Uruguaiana, also in the state of Rio Grande do Sul. The member of parliament based her proposal on that of her party colleague, councilor José Freitas, who had the initiative in Porto Alegre, and replicated the same attention for the disease in her city. Also in May, Psoríase Brasil attended the “Biological Drugs” workshop in São Paulo.

June Psoríase Brasil took part in the annual meeting of IFPA member countries in Brussels, Belgium. More than 50 national and regional associations took part in the event, as well as the IFPA board and secretariat and its partners. During the meeting, workshops were held on the subject of advocacy, as well as presentations of the activities and actions of various world associations in 2016. Jonas Flores, executive coordinator of Psoríase Brasil, represented the Association and presented the campaign Brazil had been organizing for World Day 2017, which had as its motto: “The simplest things in life that I cannot do because of psoriasis.” At the meeting, IFPA members presented the theme and the activities planned by the Federation for World Psoriasis Day 2017.

Jonas Flores, executive coordinator of Psoríase Brasil, representing the Association in Brussels.

June In June, ANS denied the incorporation of immunobiological drugs into the treatment of severe psoriasis or in situations where traditional therapies no longer produced results for the treatment of the disease. Dismayed by the Agency’s decision, Psoríase Brasil led a digital campaign to seek answers for what it considers to be a disregard and an unfounded decision. As its justification, ANS argued that there is insufficient evidence of efficacy for the incorporation of highcost medication such as immunobiological drugs. However, the Agency itself, as well as other entities which regulate treatments, provide immunobiological drugs to patients with psoriatic arthritis, which is a comorbidity of psoriasis itself. In other words, in order to have the right to access these therapies, Brazilian patients must develop a more advanced degree of their disease which further impairs their health, as occurs with the progression of psoriasis to psoriatic arthritis. During the 6th Cosaúde Meeting, held in January to appraise the proposals forwarded via electronic forms to update the List of Health Procedures and Events 2018, the representative of the Brazilian Dermatology Society (SBD) and member of the Scientific Committee of Psoríase Brasil, Paulo Oldani Felix, presented arguments based on numerous national and international studies and decades of experience in treating patients with psoriasis, which proved that, in fact, there is scientific evidence and approval by renowned international health agencies.

Dr. Paulo Oldani Felix had presented arguments to update the List of Health Procedures and Events 2018.

June

Faced with this situation, PsorĂase Brasil mobilized patients and the community with a strong digital campaign in order to create popular participation and put pressure on ANS to include psoriasis in the Public Consultation for the update to the List of Health Procedures and Events 2018. The Association also sought support from senator Ana AmĂŠlia Lemos and deputies Sinval Malheiros and Carmen Zanotto with a view to ANS reviewing its decision, as the arguments presented by the member of the SBD included scientific evidence validated by the international medical community.

June Dozens of cards, two videos and an online petition were produced as part of the digital campaign. Adding up the Facebook pages of PsorĂase Brasil and Psorisul, a total of 92 posts were published, reaching 320,453 people with 29,790 interactions (likes, shares or views). The press office also promoted the topic via unpaid media coverage and produced a digital newsletter focused primarily on this topic. Also in June, PsorĂase Brasil was invited to participate in FLAB 2017 and

attended

the

Leadership

Workshop and Biogenerics Forum in Brasilia.

July Focusing on the creation of the Parliamentary Front, Psoríase Brasil hired a company for the development of a logo, as determined by the rules for creating Parliamentary Fronts. Work also began on the production of communication materials for the World Day 2017 Campaign. Psoríase Brasil met with events companies to carry out the actions in Brasilia, however, for financial reasons, the organization opted for the president to hold the event along with the media relations team. With support from the offices of deputies Sinval Malheiros and Carmen Zanotto, the dates for the World Day Campaign were reserved at the Espaço Mário Covas and in the Senac Restaurant in Annex IV of the Chamber of Deputies for the launch ceremony of the Joint Parliamentary Front for Psoriasis and Psoriatic Arthritis, to take place during the World Day Campaign. Together with the Federation of Associations of Municipalities of Rio Grande do Sul (FAMURS), Psoríase Brasil organized the “Psoriasis in Rio Grande do Sul” seminar. The contact was made by the Coordinator of the Health Area of the Federation, Paulo Azeredo. The event aimed at presenting health department coordinators from cities in the state of Rio Grande do Sul with data on the disease, the perspectives of experts and members of the Scientific Committee of Psoríase Brasil, Paulo Oldani Felix and André E. de Carvalho, the work and potential support of Psoríase Brasil to these departments, and the possibilities of using TelessaúdeRS and DermatoNet for psoriasis diagnoses and treatments. In a meeting held in June at FAMURS, it was agreed that Psoríase Brasil would be tasked with bringing the experts and TelessaúdeRS and DermatoNet, hiring a company to host a coffee break, producing the art and all communication material, while the Federation, in return, would cede the space and invite the municipal health coordinators. However, there was a problem with the invitations made by FAMURS,

July

Coordinator of the Health Area of FAMURS, Paulo Azeredo, and Gládis Lima.

which left the event empty, causing Psoríase Brasil much frustration

Headquarters of TelessaúdeRS.

and losses. In order not to waste Paulo Oldani Felix’s trip from Rio de Janeiro to Porto Alegre, the president of Psoríase Brasil, along with communications adviser Ana Paula Dixon, took the dermatologist to visit the headquarters of TelessaúdeRS. On site, they were greeted by the staff who then presented their service. This took place on July 25.

August Psoríase Brasil focused its work on the development of the World Psoriasis Day 2017 Campaign and the creation of the Joint Parliamentary Front for Psoriasis and Psoriatic Arthritis. The president of the Association worked intensively with the communication team to develop the campaign, meeting several times with the video producer, the designer and the advertising professional, who developed the pieces and the campaign, and with the organization’s communication adviser. Efforts were also made to create the Parliamentary Front in the National Congress. To this end, a meeting in Brasília was scheduled for the month of September. Due to the high rates being charged, Psoríase Brasil chose not to hire a government relations consulting firm

for

the

creation

the

Parliamentary Front for Psoriasis and Psoriatic Arthritis, instead taking it upon itself to take the actions necessary for the creation of the Front. To do so, the Association needed to mobilize the president of the Parliamentary Front, Sinval Malheiros, and other members, as well as untangle the red tape established by law, such

collecting

signatures

Deputy Dr. Sinval Malheiros.

August from members of parliament to join the Front, among other requirements. The president of Psoríase Brasil had the support of her team and the office of deputy Sinval Malheiros for the preparation of the Parliamentary Front’s bylaws, which had its first draft completed in this month, before undergoing further refinements. In addition, President Gládis Lima participated in the Regional Meeting of the Global Alliance for Patient Access (GAFPA) in Rio de Janeiro on August 25 and 26.

Continuing its work to create the Parliamentary Front for Psoriasis and Psoriatic Arthritis, the president of Psoríase Brasil traveled to Brasília on September 13 and 15. Gládis Lima was accompanied by communications adviser Ana Paula Dixon. Together, they held meetings with deputies Sinval Malheiros, Jorge Silva, and Carmen Zanotto, as well as with senator Álvaro Dias. Together with the Sinval Malheiros’s staff, it was established that these would be the members to compose the Parliamentary Front for the interest of all in the area of health. There were also visits and pleas of support for the cause made at the offices of deputies Ságuas Moraes, Evair Vieira de Melo, Espiridião Amin, Gorete Pereira, Jean Wyllys, Augusto Carvalho, Tiririca, Mara Gabrilli, and senator Ana Amélia Lemos. Gládis Lima presented psoriasis issues in the Chamber of Deputies.

Deputy Dr. Jorge Silva and Gládis Lima.

September

Gládis Lima met with the consultants and political scientists Bruno Sadeck and Leandro Gabiati.

Gládis Lima presented psoriasis issues in the Chamber of Deputies.

From the meetings with the deputies that would comprise the Parliamentary Front, Psoríase Brasil acquired the necessary knowledge on how to collect the signatures from a minimum of 205 deputies and 15 senators and untangle the red tape required to make the Front official. Thus, it hired specialized local professionals for this action. In the Chamber of Deputies, topics related to the World Day Campaign were also discussed, such as the hiring of suppliers and the verification of the scheduled dates for the breakfast of the Parliamentary Front launch ceremony. In Brasilia, Gládis Lima and Ana Paula Dixon also met with the consultants and political scientists Bruno Sadeck and Leandro Gabiati with a view to their possible hiring for the advocacy work to be carried out after the implantation of the Parliamentary Front. Upon returning to Porto Alegre, both worked on the development of the materials and procedures for the World Day Campaign and the installation of the Parliamentary Front.

October

The doctors of SBD Caio Castro, ClĂĄudia Maia, Paulo Oldani Felix, Sineida Berbert Ferreir, whith Gladis Lima and the deputy Dr. Sinval Malheiros.

Activities were focused on World Psoriasis Day, for which several activities and trips were held in October. The World Psoriasis Day 2017 Campaign was focused on the advocacy work developed primarily in 2016, when the organization decided to create a Joint Parliamentary Front in the National Congress. Thus, in addition to the campaign to raise public awareness and seek support of members of parliament for the cause, held on October 18 and 19, PsorĂase Brasil led the implementation of the Joint Parliamentary Front for the Cause of Psoriasis and Psoriatic Arthritis with the support of Brazilian Dermatology Society. The Parliamentary Front launch ceremony took place on October 19, from 8:00 am to 10:00 am, at the Senac Gastronomy School Restaurant in Annex IV of

October the Chamber of Deputies, in Brasilia. The general purpose of the Parliamentary Front is to improve legislation and implement national public policies aimed at improving health care and the access to diagnosis and treatment through SUS and private health insurance providers, among other actions. The Parliamentary Front is presided over by deputy Sinval Malheiros; deputy Carmen Zanotto and senator Álvaro Dias are the vice presidents, and the secretary general is deputy Jorge Silva.

The Parliamentary Front launch ceremony.

The official board of the installation of the members of the Parliamentary Front was made up of the members of parliament who comprise it (with the exception of senator Álvaro Dias), the president of Psoríase Brasil, Gládis Lima, the vice president of the Association, José Célio Silveira, the Psoriasis Coordinator of the Brazilian Dermatology Society, Caio Castro, and the member of the Scientific Council of Psoríase Brasil, dermatologist Paulo Oldani. Members of the SBD and Psoríase Brasil presented data on psoriasis in the country, the existing and nonexistent public policies, the work of the Association and the condition of patients. The members of parliament, in turn, commented on the importance of the creation of the Parliamentary Front and volunteered to work in favor of the cause.

October The event was attended by around 60 people, among them members of civil society, members of parliament, supporters of the cause of psoriasis, the press, Porto Alegre city councilor José Freitas and representatives of laboratories, among others. The ceremony was held by the Association, which coordinated the hosting of a breakfast at the venue, with the necessary infrastructure for the size of the event. The event also included a master of ceremonies, a photographer, a videographer, journalistic coverage, a live broadcast on the Psoríase Brasil fan page, receptionists and the distribution of informative materials. For the World Psoriasis Day Campaign, held on October 18 and 19 in the Espaço Mário Covas in the Chamber of Deputies in Brasília, ten promoters were hired to speak to the public, collect signatures and distribute materials under the supervision of Psoríase Brasil. There were also photographic records of the two-day-long activity in which 5,000 brochures, 500 copies of the Global Report of the World Health Organization (in Portuguese) and 3,000 infographics were distributed. In total, the campaign activity reached 183 deputies/senators who signed a document pledging support to the cause. It is estimated that the number of people reached was close to the number of brochures that were

October handed out, i.e., five thousand. As well as the impact made on the people who visited the venue, the event was awarded a large amount of space in the press, with at least 24 unpaid pieces of media coverage as a result of media releases made by the press office. On social media, primarily Facebook, the campaign reached 265,650 people, with a total of 11,134 interactions (likes, shares or views). The slogan used by the Communications team for the World Psoriasis Day 2017 Campaign was “What people stop doing because of psoriasis”. The proposal aimed to raise public awareness by showing how much psoriasis impacts the daily lives of patients, resulting in, at the very least, a lower quality of life. To do this, the advertising campaign developed 10 cards and cover images on Facebook and Instagram, videos for both social media platforms, t-shirts, brochures, banners and an infographic. A longer video was also produced, which presented data regarding the impact on the lives of patients and was displayed on a 5-meter LED screen rented by Psoríase Brasil and set up in the Espaço Mario Covas.

October Also during the World Day Campaign, Psoríase Brasil took part in an event hired by the SBD to be hosted by Folha de S.Paulo. The “1st Forum on Skin Health,” was promoted by the newspaper and took place in São Paulo on October 26. The president of the Association took part in the debate and went to the event accompanied by the Psoríase Brasil press office. Gládis Lima discussed the issue of medication and existing public policies in Brazil with the General Manager of Care Regulation of the Brazilian National Health System (ANS), Raquel Medeiros Lisbôa, the Coordinator of the Care Network for Patients with Chronic Diseases of the Ministry of Health, Sandro Martins, and Claudia Maia, a dermatologist and member of the SBD Ethics & Professional Defense Committee. Once again, the seminar was broadcast live on the Psoríase Brasil Facebook page, as well as being broadcast simultaneously by Folha de S.Paulo. The production of a special section entitled “Skin Comes Out of the Shade”, published on October 28 in Folha de S.Paulo – one of the most influential newspapers in Brazil, with high circulation figures – had the strong backing of Psoríase Brasil and

its

communications

team.

The Association contributed by sharing information, intermediating interviews,

sending

materials

and suggesting sources to be interviewed. The pullout gave public exposure to the debate surrounding the

incorporation

biological

drugs by the Ministry of Health, strengthening

Psoríase

Brasil’s

October cause. The special section comprised eight pages, and while it also dealt with other diseases, it put great emphasis on psoriasis. On October 31, the debate about psoriasis and the World Day Campaign was extended to Porto Alegre and its City Council. The Committee on Health and the Environment (Cosmam) held a meeting to discuss and evaluate the Municipal Psoriasis Care Network. The meeting was led by councilor José Freitas in partnership with Psoríase Brasil and brought together directors of hospitals, city councilors and health workers. It gained coverage in the local press and on the media channels of the Porto Alegre City Council.

Gládis Lima talking with the Porto Alegre City Council press.

At the invitation of BioRed Brasil, the Association attended the Multidisciplinary Biotechnology Forum on October 20 in Brasília.

November President Gládis Lima was in São Paulo at the invitation of the laboratory Eli Lilly do Brasil to participate in the discussion panel “Treatment for Psoriasis: Access to Medicine.” The purpose of the debate was to analyze access criteria and unmet needs in the treatment of psoriasis from the perspectives of the patients, the doctors and the payers. Gládis Lima was invited to speak alongside Marcelo Arnone, a SBD dermatologist, professor of the Dermatology Department at the University of São Paulo and scientific advisor of Psoríase Brasil, and Dr. Goldete Priszkulnik, a Supplementary Health Management Executive. During the meeting, Psoríase Brasil presented actions and activities aimed at providing a better quality of life to psoriasis patients, as well as universal access to treatment. Media repercussion of the World Psoriasis Day Campaign remained strong throughout November and Psoríase Brasil took part in a television program and gave an interview to the magazine Primeira Região em Revista (First Region in Review), published by the Regional Federal Appellate Court of the First Region. The president of Psoríase Brasil held a meeting in the city of Porto Alegre to gather the main sponsors of the entity in order to showcase the results achieved during the World Day Campaign, the projects put in place for 2018 and also to deal with the issue of sponsorship and the timing of their entry. Under recommendation, the president of Psoríase Brasil met with consultant Roberta Reis, who works in the Arthritis Patients Group in Porto Alegre, for potential professional consultancy. The proposal is that Ms. Reis will take care of a Training Project designed to be carried out in the city of Esteio, Rio Grande do Sul, as well as leading fundraising project development.

November GlĂĄdis Lima and Roberta Reis contacted councilor Fernanda Fernandes, from Esteio, and, through her, the Municipal Health Department of the municipality.

PsorĂase Brasil took part in a television program Fortunati.com .

December Gládis Lima maintained contact with city councilor José Freitas for the creation of the Parliamentary Front for Psoriasis and Psoriatic Arthritis in the Porto Alegre City Council. José Freitas also submitted two amendments – one from his office and another from the Committee on Health and the Environment – to the 2018 budget bill, with the request for a budget item for the purchase of drugs for psoriasis patients, seeking the implementation of the law which created the Psoriasis Care Network.

City councilor José Freitas talking with the Porto Alegre City Council press.

December On December 20, there was a meeting to plan the first training program of healthcare professionals on the subjects of psoriasis and psoriatic arthritis in the city of Esteio, Rio Grande do Sul. Gládis Lima, along with advisors Roberta Reis and Ana Paula Dixon, met with nurse Gilson Abreu de Menezes, the coordinator of the Basic Health Units, and nurse Flávia Vecelli, of the Esteio Health Department, both responsible for the area of Primary Management and Strategy in Family Health. Councilor Fernanda Fernandes was responsible for facilitating the meeting and said that she plans to lead the creation of the Parliamentary Front for Psoriasis and Psoriatic Arthritis in the municipality. At Pfizer’s invitation, the Association attended the meeting “Pfizer Dialogues with Associations of Patients with Inflammatory Diseases” in São Paulo.

Media Relations

One of Psoríase Brasil’s areas of investment is media relations. Since 2016, the Association has maintained contracts with third-party companies Dixon Comunicação, designer and advertiser Lourival Machado and video production company Motion Animações, as well as hiring Emotive, which specializes in digital communication, for sporadic demands. In 2017, Emotive was not hired for social media management due to a lack of funds, and the company only produced the final report on social media reach, with management being left to president Gládis Lima with support from Dixon Comunicação and the Association’s executive coordinator Jonas Flores. Dixon Comunicação works continuously with Psoríase Brasil and advises the president Gládis Lima on all matters related to this field, assisting and coordinating the demands presented to other suppliers. The team accompanies the Association on trips and at meetings, produces necessary materials such as reports, letters, newsletters, speeches, ceremonials, various texts, press releases, production of events and issues related to advocacy actions and institutional relations. Aware of the importance of communication, in 2017 Psoríase Brasil began work on the activities and actions for World Psoriasis Day in January, when the president decided on the campaign motto, seeking to show society and public decisionmakers the difficulties faced by patients. The consultancy also accompanied and assisted the Association in the creation of the Joint Parliamentary Front for Psoriasis and Psoriatic Arthritis, in monitoring the progress of the bill approved in the Porto Alegre City Council, and in contacting regional and national public decision-makers, being more present and involved in the daily work of Psoríase Brasil than in 2016.

Events The Association believes in the importance of participating in and promoting events. In 2017, as well as attending or presenting its work in meetings and seminars organized by other institutions, Psoríase Brasil held two events of its own. In Porto Alegre in July, it held the “Psoriasis in Rio Grande do Sul Seminar” and in Brasilia, the World Day Campaign involved the launch ceremony of the Joint Parliamentary Front for Psoriasis and Psoriatic Arthritis. Both events required plenty of communications efforts, such as creating artwork (invitations, banners, save the date, schedules, etc.), hiring services (photographer, receptionists, master of ceremonies, etc.), preparing presentations, writing scripts, posting on social media, and press relations, among others.

Press Office The Association’s press office had three moments of important work in 2017: during the deliberation and approval of the municipal ordinance for the creation of the Psoriasis Care Network in Porto Alegre, during the awareness campaign concerning ANS’s refusal to include immunobiological drugs into the treatment of severe psoriasis and in situations where traditional therapies no longer produce results, and during the World Day Campaign. The total reach through unpaid media coverage was 35 entries, including national and regional media (newspapers, magazines, radio and television stations). The repercussions of this gain in unpaid media coverage (which would have cost over BRL 180,000.00 had the space been purchased as advertising) has an immeasurable value, with the fact the coverage appeared as news in editorial space giving it more credibility. The period and the topic that gained most attention was the World Day Campaign, including the implementation of the Parliamentary Front.

Digital Communication PsorĂase Brasil focuses heavily on social media, particularly its Facebook page which gained a further 4,184 followers between January 1 and December 15, 2017, an increase of 19.5%. 447 posts were made during this period, receiving 109,005 interactions (likes, comments or shares), an increase of 8.1% compared to 2016. The Facebook page goes far beyond the numbers reached, as judging by the comments and interaction it receives, it is clear that the page operates as a space for patients to network, both with regard to opening up about their suffering or serving as a means of information for patients about the disease, existing treatments, public policies, actions taken, among other information shared. The fan page facebook.com/psoriasebrasil was also the basis for the creation of the Psoriasis Community, which as of December 15, 2017 has 1,278 members. The Association had to create a new Instagram account this year due to problems accessing the previous account. During the World Psoriasis Day Campaign, the profile instagram.com/psoriasebrasil_oficial was created, but it is not used regularly. The YouTube channel received some updates with videos produced for the campaign. The PsorĂase Brasil website (http://www.psoriase.org.br/) recorded 61,681 visits in 2017 and 1,579 registrations made in the database and through the website.

Final Considerations Psoríase Brasil ended 2017 even more confident in its advocacy work after leading the implementation of the Parliamentary Front for Psoriasis and Psoriatic Arthritis in Congress. Next year’s challenges will be to advance its projects and seek legal support, in the Legislature, for the incorporation of new and effective public policies. Among its objectives are the expansion of the offer of phototherapy for psoriasis treatment, through the national health service, and the incorporation of immunobiological drugs into the treatment of severe psoriasis and in situations where traditional therapies no longer produce results. Another public meeting is being scheduled in Brasília on “The need to update the PDCT of Psoriasis and to include immunobiological treatment for moderate and severe psoriasis,” as well as continuous meetings with members of parliament to raise awareness for the cause. Another key project that will be presented to be developed in the coming year is the training of public health agents. The city of Esteio, Rio Grande do Sul, is expected to host the pilot project and is seeking to create a Parliamentary Front for Psoriasis and Psoriatic Arthritis in its City Council. Porto Alegre’s City Legislature also foresees the implementation of a Parliamentary Front for the cause in order to expand and accelerate the implementation of the Psoriasis Care Network, which was passed in February 2017. In addition to these activities, Psoríase Brasil ends the year already planning its campaign for the next World Psoriasis Day. The institution’s agenda for 2018 is full of activities and projects to be carried out.

União das Associações de Portadores de Psoríase do Brasil President: Gládis Lima Vice-President: José Célio Silveira Manager: Jonas Leandro Flores - Impacto Social Communication Consultancy: Dixon Comunicação Address: Cristóvão Pereira, 50 sala 301, Porto Alegre - RS - CEP 91.030-420 Telephone: +55 51 9 8501.8401 E-mail: psoriase@psoriase.org.br Site: www.psoriase.org.br Facebook: facebook.com/psoriasebrasil

Report produced by Dixon Communication, graphic design and layout by Lourival Machado. Translation portuguese to english: De Letras Traduções.