Activities and actions report 2016 - Psoríase Brasil

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Action and Activity Report 2016

Summary Introduction ............................................................... 4 Activities by Month..................................................... 7 Media Relations........................................................ 30 Social Media.............................................................. 32 Digital Communication........................................... 34 Third-Sector Management and Qualification.......... 34 Final Considerations ................................................. 35 Technical Information.............................................. 37

Introduction The Union of Psoriasis Patients associations in Brazil – Psoríase Brasil – is a nonprofit organization officially recognized as an entity in 2010 with the purpose of bringing together regional associations which act on behalf of psoriasis patients and work nationally and internationally for the cause, representing the interests of local associations and Brazilian citizens who suffer from the disease. At the end of 2016, the organization encompassed seven regional associations and was moving towards affiliating new regional groups working for the cause.

The entity’s role includes strategic actions in advocacy, communication, inter-institutional relations with Brazilian and foreign entities, research development, training, database maintenance, holding the World Psoriasis Day campaign and seminars, national registration of patients, and the constant spreading of information about psoriasis and psoriatic arthritis. Since 2014, Psoríase Brasil has based its actions on the implementation of the World Health Organization (WHO)

resolution which, during its 67th Assembly, recognized psoriasis as “a chronic, noncommunicable, painful, disfiguring and disabling disease for which there is no cure” (Resolution WHA67.9 of the World Health Assembly).

In 2016, the activities held by Psoríase Brasil continued to be guided by the WHO Resolution, which has yet to be implemented in Brazil, and by the information provided and recommendations made by the “Global Report on Psoriasis” issued by the WHO. The document contains a diagnosis of the disease, which affects nearly one hundred million people globally, and regards psoriasis as a case of public health that causes the suffering of millions of people worldwide due to incorrect or late diagnosis, inadequate treatment options and/or the lack of access to them, and the stigma and social exclusion suffered by those who have the disease. The Report was developed by the WHO to provide solutions to policy makers and associations working for the cause, in order to improve the care and social inclusion of psoriasis

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Introduction patients.

To perform its mission, in 2016 Psoríase Brasil took an active role in the dialogue and making of requests regarding the cause to the National Congress, the Ministry of Health, local governments, national and international agencies, as well as other agents. In a bid to fulfill an extensive and varied work schedule, with the support of advisers and properly trained professionals, its directors held a series of activities throughout the year.

Among the advocacy actions held, the organization sought dialogue with the Ministry of Health, demanding answers to the questions raised in 2015 and 2016 to the National Commission of Technology Incorporation of the National Health Service (CONITEC). Psoríase Brasil worked to seek support from CONITEC and parliamentarians for the creation of a working group, due to be formed in June 2015 after the Public Hearing on Psoriasis held in the National Congress, and for the provision of phototherapy treatment for psoriasis patients.

Though included in the Clinical Protocol and Therapeutic Guidelines for the treatment of psoriasis, offered by the Brazilian Single Health System (SUS), there is a lack of equipment and very little offer of phototherapy in various Brazilian states. Psoríase Brasil also worked to seek the inclusion of immunobiological drugs to be

offered by the public health system, among other claims.

The association continued performing face-to-face work with members of the National Congress, which resulted in winning new supporters for the cause and expanding the actions promoted for World Psoriasis Day. In 2016, in addition to awareness-raising and information activities held in the Espaço Mário Covas, a Symposium on Psoriasis was held alongside the Brazilian Dermatology Society (SBD), parliamentarians and medical experts, and several actions for the World Day Campaign were orchestrated with regional associations of psoriasis patients.

As a national entity that seeks to aggregate local associations, Psoríase Brasil helped with the sending of unified informative materials, dissemination via social media and the press and other actions of support.

Another emblematic breakthrough which occurred in September of last year was the formalization of the entity’s Scientific Council during the 71st Congress of the Brazilian Dermatology Society (SBD) in Porto Alegre, in the state of Rio Grande do Sul, when medical experts became part of the association’s Council.

Internationally, it is worth mentioning the invite made by the International Federation of Psoriasis associations (IFPA) to Psoríase Brasil to present its case

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Introduction at the annual meeting that brings together psoriasis associations all around the world, which took place in Geneva, parallel to the official program of the 69th World Health Assembly of the World Health Organization (WHO) in late May. Psoríase Brasil was chosen by the IFPA to present to other global associations as a result of the prestige of the coordinated work of the association in seeking commitment of government to the cause, the fight against prejudice and the dissemination of information, the strengthening of regional associations, research and data collection, and the joint work developed with the support and participation of the Brazilian Dermatology Society (SDB).

Aware of the importance of communication to the organization’s work to disseminate information, against prejudice and for the strengthening of public opinion on the subject, Psoríase Brasil continued to invest heavily in online and offline communication.

The entity’s strategic vision of expanding planning and executing a 360-degree communication project resulted in the strengthening of its social networks, the development of digital material, holding events, investment in press relations, the production of videos and

informational materials, and the use of other tools.

Awareness campaigns were promoted, as well as research with patients, promotion in the press about the cause and about the organization’s work, the holding of local and national events to commemorate World Psoriasis Day 2016, the delivery of letters to the government and the drafting of the first Psoríase Brasil newsletter, which was forwarded to an extensive mailing list in December 2016.

Investment in communication by patient associations is among the recommendations of the Global Report published by the WHO. In this annual report, Psoríase Brasil describes the main activities held in 2016. Highlighted actions are presented by month and illustrated by images. Separate sections were also created for the following areas: Management and Qualification, Digital Communication, and Media Relations. This document, besides being an accountability tool, aims to register the trajectory of the organization in order to preserve its history and contribute socially as an organization of the third sector, allowing it to serve as a benchmark to other similar entities. It also gives transparency to the situation of public policies for patients with psoriasis in Brazil.

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ACTIVITIES BY MONTH January

Psoríase Brasil began 2016 by planning activities and defining the central theme of its work: psoriasis patients’ lack of access to public and private treatment. To this end, the organization listed the requests to be presented to CONITEC and planned to hold surveys on access to treatment in order to map the reality of patients in Brazil. The association also followed up on requests made to the Commission which were still pending from the previous year, such as the formation of the working group.

Psoríase Brasil guided the advocacy work with parliamentarians in the Chamber of Deputies to speed up the progress of Bill No. 3639/2015, of Deputy Rogério Rosso (DF), which aims to establish the National Reference Program in Psoriasis Treatment. The bill was presented to the leadership of the Chamber of Deputies on November 19, 2015. The organization also worked to seek support from parliamentarians to promote World Psoriasis Day 2016 and draw the attention of parliamentarians to public health policies offered

in their states. The constant administration of the national registry and the interconnection of digital media were also part of this annual planning.

Psoríase Brasil published the resolution of the Brazilian National Supplementary Health Agency (ANS) to include new procedures in the List of Health Procedures and Events for the mandatory coverage of health insurance for certain diseases, which included psoriatic arthritis and other comorbidities caused by psoriasis.

The organization’s social media and website informed of the entry into force, on January 2, 2016, of the ANS Resolution with its 21 new procedures, including laboratory tests, medication for cancer and the increase in the number of consultations with determined specialists. The information, which benefited about 50.3 million private health insurance consumers, had an organic reach of more than six thousand people through the association’s fan page. Psoriatic arthritis and Crohn’s disease were added to the new “list” with the expansion of laboratory tests and

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the inclusion of subcutaneous immunobiological therapy.

Other information focused on by the Psoríase Brasil website and social media were the extension of the Public Consultation CONITEC/SCTIE No. 37/2015 until 02/02/2016 on the proposed incorporation of the drug Golimumab to the treatment of psoriatic arthritis and the results of the survey conducted by the organization on the effects of psoriasis on patients’ sex life.

Mapping began on the availability of phototherapy for psoriasis patients on the Single Health System (SUS). The survey was held by the organization’s website and promoted on its social media. Although phototherapy is a recommended treatment for psoriasis, much of the public system does not offer said treatment. The survey aimed to collect information that would serve to benefit the work of Psoríase Brasil with the government.

In late January, promotion began for the Survey organized by CONITEC to update the Clinical Protocols and Therapeutic Guidelines (PCDTs) published in 2012/2013 of some diseases, psoriasis being one of the diseases included. For the first time, the Ministry of Health included psoriasis in a survey directed to the population to provide support, among other factors, for updating the PCDTs. The survey was promoted by way

Digital survey promoted by Psoríase Brasil

Promotion of CONITEC Survey

of social media, the Psoríase Brasil website, through press offices and by the Psoríase Brasil mailing list, encouraging patients to participate in the survey with their contributions.

The public call to the survey began on January 26, 2016 with a scheduled end date of February 29 – which was later extended to March 11. Thirty-five protocols published by the Ministry of Health between 2012 and 2013 were included in the survey. At the end of the survey, it

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was found psoriasis was the disease that obtained the highest number of contributions, registering 342 in total.

Besides promoting the call to the survey through its press office, PsorĂ­ase Brasil sought to inform the population of the drugs which were not included in the last PCDT. Among them were: a topical medication (calcipotriol + betamethasone dipropionate) and biological drugs (adalimumab, efalizumab, etanercept, infliximab, and ustekinumab), already available on the public health service at the time for the treatment of psoriatic arthritis. It is worth drawing attention to the fact that updating the PCDT for psoriasis was a request made to the Ministry of Health by PsorĂ­ase Brasil,

Result of CONITEC Survey

experts and patients over the last three years. Ordinance No. 1.229, published in the Federal Official Journal of November 5, 2013, regulates SUS guidelines when treating psoriasis. The information circulated in the national press.

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Press clipping of news story about CONITEC Survey

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February

Focusing on the WHO Resolution regarding the impact of psoriasis on the lives of patients, Psoríase Brasil promoted a campaign through its Facebook page by calling upon people to come forward and show what it means to them to have psoriasis. The post reached over 12,000 people and received dozens of shares and comments. The result of the participation of patients in completing the sentence “Having Psoriasis means...” yielded a video which Psoríase Brasil displayed on large screens at its stand during the events of the World Psoriasis Day Campaign, held in Brasilia (in October), and also in the space provided by the Brazilian Dermatology Society (SBD) at the 71st Congress of the Brazilian Dermatology Society (SBD), which took place in September in Porto Alegre.

The association also announced the extension of the CONITEC Survey about updating the PCDTs.

March

With data collected from surveys, research and the Psoríase Brasil database, an infographic about the disease was produced. The material was developed by a designer to serve as information to be shared and distributed to the public, parliamentarians and the media. In April, the infographic was delivered to federal deputies

Survey post “Having Psoriasis means...”

Post used on social media to inform about the Survey extension

and senators in a Psoríase Brasil advocacy action in the National Congress. Subsequently, the material was used to produce a video which was widely promoted at events, on social media and delivered to the World Psoriasis Day Campaign 2016.

The extension of the deadline for the CONITEC Survey about updating PCDTs, which closed on March 11, was once again made public.

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Infographic produced by Psoríase Brasil

Post about the new end date of the CONITEC Survey

April

On April 6, the president and vice president of Psoríase Brasil, Gládis Lima and José Célio Silveira Peixoto, were in Brasilia to meet with parliamentarians and seek support for the cause of psoriasis patients and the implementation of the WHO Resolution. The organization’s leaders approached deputies from states which did not offer phototherapy treatment to patients and asked them to find a way to

insert this request into their legislative agendas. The president and vice president were accompanied by communications adviser Ana Paula Dixon and by the national coordinator of Psoríase Brasil, Jonas Flores.

During a meeting with deputies, the association defined the focus point as being the complaint about the SUS’ scant offering of phototherapy treatment to psoriasis patients, which constitutes non-

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compliance with the Clinical Protocol and Therapeutic Guidelines (PCDT). Meetings were held with deputies from the states in which data from DATASUS (IT Department of the Single Health System) pointed out there is no provision for said treatment, according to data provided by the system: According to DATASUS data, a total of 32,170 phototherapy sessions were held and registered for use by the ICD 10 for psoriasis, representing 36.5% of all phototherapy sessions held in 2012.

Analyzing the distribution of phototherapy sessions across Brazil, we observed that some states do not have any record of phototherapy treatment sessions taking place. The figure below shows these results.

In 2012, 92% of phototherapy sessions were concentrated in five Brazilian states (SP, DF,

Post created for PsorĂ­ase Brasil social media

RJ, MG, RS). The remaining Brazilian states showed no record of phototherapy sessions taking place in 2012 (PE, CE, RN, RO, AC, AM, RR, PA, AP, TO, MA, PI, PB, AL, ES, MS). In 2013, the same states continued to perform phototherapy sessions, with the addition of the states PE, EC and RN, which represented 1.5% of sessions held that year.

Among the materials handed out, PsorĂ­ase Brasil gave parliamentarians the infographic and the letter from the SDB supporting the organization and criticizing the lack of progress in the creation of the working group for the discussion and approval of immunobiological drugs to the SUS list for the treatment of psoriasis.

The supposed creation of the working group was meant to be a result of the public hearing held

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on June 3, 2015, by the Committee on Social Affairs (CAS) of the Senate, when it was established that the group was to be created within a maximum of 60 days. The yet non-existent working group was to comprise representatives of CONITEC, members of the SBD, medical professionals from the Hospital das Clínicas in São Paulo and representatives of Psoríase Brasil. Though the issue of the working group was directed at senators Waldemir Moka (MS) and Ana Amélia Lemos (RS) - since both participated in the public hearing - other parliamentarians also received the letter. The senators and deputies who were contacted showed support for Psoríase Brasil when the entity was at the National Congress in

October 2015, for events related to World Psoriasis Day. The president, Gládis Lima, gave interviews to radio stations EBC and Agência Rádio Web about their agenda in Brasilia and the work of the organization.

MATERIAL GIVEN TO PARLIAMENTARIANS

13 MEETINGS AT THE NATIONAL CONGRESS There was a meeting with the following parliamentarians: Deputy Carlos Manato (ES), Deputy Carmen Zanotto (SC), Deputy André Abdon (AP), Deputy Marcos Rotta (AM), Deputy Ed-

milson Rodrigues (PA), Deputy João Henrique Dias (AL), Deputy Efraim Filho (PB), Átila Lira (PI), Deputy Tiririca (SP), Senator Ana Amélia Lemos (RS) and Senator Waldemir Moka (MS).

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Between April 13 and 15, the 2nd National Meeting with associations of Psoriasis Patients was held in São Paulo. During the event, two General Assemblies were held, in which, as well as actions of accountability, entities presented reports on the actions taken and projected tasks for the remainder of the year. Another important event was the association’s participation in the III Workshop on Biological Drugs “The Focus is on the Patient”.

May

Psoríase Brasil was invited to Geneva by the IFPA (International Federation of Psoriasis associations) to present their work done in favor of psoriasis patients and the implementation of the WHO Resolution. The theme of the IFPA meeting was “A strong wind of change” and it took place parallel to the 69th World Health Assembly, between May 23 and 28. The IFPA event focused on the WHO Resolution and the Global Report on Psoriasis, which at the time had been recently published by the WHO. The president of the association prepared a presentation entitled “A real-world example of change in action”, giving information about actions put into place in recent years, especially from 2014 onward, and illustrating the presentation with videos, graphs and images. The presentation took place on May 26, 2016, at the Inter-

Psoríase Brasil meeting with parliamentarians

Gládis Lima presenting Psoríase Brasil at the IFPA meeting in Geneva

continental Hotel.

The invitation from the IFPA came as a result of the prestige given to

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the coordinated work of the association in seeking governmental commitment to the cause, the fight against prejudice, the strengthening of regional associations, research, data collection and the joint work developed with the SDB. Psoríase Brasil was the only international entity associated with the IFPA invited to present its case.

June

Psoríase Brasil participated in the election of the new secretary general of the IFPA, with Mrs. Silvia Barrio, from Argentina, being elected. Psoríase Brasil was presented at the event held in Portugal as a worldwide success case for its advocacy work for the implementation of the WHO Resolution. The motto of the IFPA meeting was “Breaking barriers for people with psoriasis”, which is one of the goals of Psoríase Brasil’s campaigns.

Psoríase Brasil was represented by its vice president Célio Silveira, who took the opportunity to promote the rapprochement between the association and other IFPA affiliates.

In June, Psoríase Brasil revamped its website, giving the platform a more modern look. The association also organized their participation in the 71st Congress of the Brazilian Dermatology Society (SBD) held in September in Porto Alegre. The institution

developed the establishment of its Scientific Committee, which was officially established at the aforementioned Congress. Also in June, Deputy Raquel Muniz (MG) was designated by the Committee on Social Security and Family as the rapporteur of Bill No. 3.639/2015, presented by Deputy Rogerio Rosso (DF) on November 19, 2015, to establish the National Reference Program in Psoriasis Treatment. Psoríase Brasil was in contact with Deputy Muniz after her appointment, making itself available to help with any information the Deputy may require.

On June 18, Psoríase Brasil, at the invitation of Novartis, participated in the Clear IL17 Launch Meeting.

During the event, Psoríase Brasil coordinator Jonas Leandro Flores was given two opportunities to present the work of Psoríase Brasil.

In the presentation to the sponsors, he showed patient research carried out using databases and the national register of patients.

In the presentation to around 500 dermatologists, he showed a summary of the work carried out by the entity and informed the medical professionals about important points of the WHO Resolution.

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July

Focusing on the WHO Resolution, the president of Psoríase Brasil,

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along with the Porto Alegre city councilor José Freitas and his parliamentary aide, met with the Porto Alegre’s Municipal Health Secretary, Fátima Ali, to discuss the creation of a Health Program for psoriasis patients, elaborated by the city councilor. After extensive discussions, the secretary proposed the formation of a working group to further the proposal.

In July, results were released of the survey promoted by CONITEC to update the Clinical Protocols and Therapeutic Guidelines. Psoriasis was the disease that obtained the highest number of contributions: 387 of 1,024 contributions.

August

On August 24, the association’s executive board traveled to Brasilia accompanied by coordinator Jonas Flores and communication adviser Paula Dixon to meet with the re-

Meeting at the Municipal Health Department of Porto Alegre, in the state of Rio Grande do Sul

presentative of the Pan American Health Organization (PAHO), Dr. Lenildo de Moura, and carry out an advocacy action at the National Congress.

The meeting with the PAHO was to seek support for the implementation of the WHO Resolution. During the meeting, Psoríase Brasil delivered a letter to Dr. Lenildo de Moura explai-

Letter delivered to PAHO representative Lenildo de Moura

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ning the work carried out by the entity since its inception and, above all, the importance of PAHO’s collaboration to the advocacy work of Psoríase Brasil for the implementation of the WHO Resolution in Brazil.

The association also met with parliamentarians to discuss the bill to establish the National Reference Program in Psoriasis Treatment and the preparations for the actions to be held on World Psoriasis Day 2016, which at the time already had the support of Senator Ana Amélia Lemos (RS) and federal with deputy Carmen Zanotto (SC).

The president of the organization, Gládis Lima, talked with Ana Amélia Lemos and said that activity at the National Congress for World Psoriasis Day 2016 would be broader and more extensive. There was also a meeting with Deputy Raquel Muniz (MG), named as the rapporteur of the bill for the implementation of the National Reference Program in Psoriasis Treatment.

In addition to the parliamentarians already known to them, the association sought out federal deputy Sinval Malheiros (SP), with whom they forged close relations. The parliamentarian, who had been contacted during the World Day Campaign in 2015, has become a strong ally of Psoríase Brasil, lending his support to, among other requests, the Symposium on Psoriasis for the World Day Campaign in October.

The trip to Brasilia also included giving an interview to the radio station

Gládis Lima and Senator Ana Amélia Lemos

Deputy Raquel Muniz with Jonas Flores and Gládis Lima

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Deputy Sinval Malheiros meeting with Psoríase Brasil

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Band News FM from Rio Grande do Sul. On their return, on August 27, the organization’s president spoke with the journalist André Machado, anchor of the radio show No Meio do Dia, for almost 16 minutes, which resulted in great visibility to the cause and the association.

Psoríase Brasil began organizing World Psoriasis Day 2016 at both a federal and regional level. In Brasilia, the organization’s president and her aides met with suppliers who were later hired to meet the demands of the campaign action in the National Congress. On that occasion, the organization contacted the parliamentarians who guaranteed access to the Espaço Mário Covas in the Chamber of Deputies.

Gládis Lima during an interview with Band News RS

Also in August, the association sent an appeal to the National Supplementary Health Agency (ANS) about the update to the list of procedures for the treatment of psoriasis.

The association also sent a request

Documents sent to the ANS

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for support to the Brazilian Medical association concerning the aforementioned appeal sent to the ANS.

September

Psoríase Brasil had a stand at the 71st Congress of the Brazilian Dermatology Society (SBD) held in Porto Alegre between September 7 and 10. The association formalized the creation of the entity’s Scientific Council on September 8, with the document being signed during a public ceremony. Doctors specializing in dermatology, Dr. André Esteves de Carvalho, Dr. Cláudia Pires Amaral Maia, Dr. Paulo Antônio Oldani Felix and Dr. Marcelo Arnone signed the document along with the president of the association, Gládis Lima, and vice president Célio Silveira. The ceremony took place at Psoríase Brasil’s stand at the Congress, a space kindly provided by the SBD for the entity’s participation in the event.

During the congress, the association met with representatives of the SBD to organize joint actions scheduled between both entities for the 2016 World Day Campaign. It was established that the institutions would jointly promote a symposium at the National Congress as part of the activities planned for the World Day Campaign. Psoríase Brasil was tasked with seeking the support of parliamentarians to

Formalizing the Scientific Committee of Psoríase Brasil

reserve an appropriate venue for holding the symposium and other communication and advocacy activities.

The formalization of the Psoríase Brasil Scientific Council was given attention by the regional press, being awarded space in the Jornal do Comércio, the online edition of Jornal O Sul and Rede Record.

During the congress, the president and vice president of Psoríase Brasil met with dermatologist and university professor Dr. Fábio Andrade. This meeting resulted in the rapprochement between Dr. Andrade and the entity, which

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Clipping

culminated in an event about psoriasis held in the city of Rio Grande, state of Rio Grande do Sul, where Dr. Andrade works.

The event was held on October 29, 2016, precisely the official date established by the WHO to commemorate the cause.

September was the month in which Psoríase Brasil stepped up their efforts to organize actions for World Psoriasis Day 2016. The association and the SBD organized joint actions on digital media and media relations. The press offices of both entities came into contact to implement a joint action by creating sponsored posts for social media and elaborating media relations strategies, among other actions.

Psoríase Brasil hired the following suppliers in Brasilia for the World Day Campaign: a company to supply a 10 meter LED panel

and a totem to be assembled in the Espaço Mário Covas in the Chamber of Deputies, a promotions coordination company for the delivery of informative materials during the three days of the campaign and a professional photographer to record the event.

The association began work on creating a 30-second animated video to be published on social media and another video to be

Dr. Fábio Andrade (center) with Gládis Lima and Celio Silveira

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shown in the Espaço Mário Covas in the Chamber of Deputies. The entity also hired a designer to create posts for use on their Facebook and Instagram pages, t-shirts for the World Day 2016 campaign and leaflets and posters to be handed out in Brasilia and by regional associations of psoriasis patients.

With help from its press office, the association established a strategy of national promotion and joint work with the SBD, as well as social media actions, which were assisted in management and content production by Dixon Comunicação during the World Day Campaign. In addition, it requested the creation of art work for photographic posters with supporters of the cause, as well as the creation of new social media posts and digital invites.

Psoríase Brasil also assisted regional associations for the World Day 2016 Campaign, supplying them with t-shirts and printed and digital materials. A print shop was hired to carry out the printing, and materials were sent by mail to the four regional associations who took part in the campaign. Each entity received 2,000 printed leaflets, 1,000 infographics, 300 posters and 30 t-shirts.

Coordinator Jonas Flores worked alongside the president of Psoríase Brasil, Gládis Lima, on

Materials created to World Psoriasis Day 2016 Campaign

Material created by the press office

the organization of the World Day actions in Brasilia and in supporting regional associations who held acts in favor of the World Day. Both put together the symposium on the disease to be held during World Psoriasis Day 2016 and remained in constant contact with parliamentarians.

Deputy Sinval Malheiros was the parliamentarian responsible for ensuring the reservation of the space in the Chamber of Deputies to host the symposium.

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October

The work of Psoríase Brasil was focused on holding actions for World Psoriasis Day on October 29. The association’s activities were intended to draw the attention of parliamentarians, policy makers and civil society to the cause, to the promotion of World Psoriasis Day 2016, as well as the requests and meetings to be held in Brasilia over the period in which the leadership of the entity was in the federal capital. In 2016, the central theme of World Psoriasis Day was the difficulties in accessing treatment offered by Brazil’s national health service. Psoríase Brasil was at the National Congress between October 25 and 27.

The campaign in Brasilia reached an audience of 40,000 people.

This was the first year in which the entity had the formal support of the SBD for World Psoriasis Day. Together, they hosted a symposium entitled: “Understanding psoriasis, demystifying concepts, new perspectives of treatment of the disease, and how to leverage the quality of life of these patients”, which was held in the Chamber of Deputies on October 27. Gládis Lima, president of Psoríase Brasil, took part alongside two members of the Scientific Council of Psoríase Brasil: Dr. Paulo Oldani Felix, a dermatologist and representative of the SDB, and Dr. Marcelo Arnone, a dermatologist who is an expert

World Psoriasis Day 2016 Campaign

Symposium on psoriasis held for World Psoriasis Day

World Psoriasis Day 2016 Campaign

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on psoriasis. Célio Silveira, vice president of Psoríase Brasil and person with psoriasis, also spoke, as did federal deputy Dr. Sinval Malheiros, host and official supporter of the symposium.

During the event held in Espaço Mário Covas, in Brasilia, the association distributed 10,000 informational brochures and 10,000 infographics, talked with parliamentarians and members of civil society, and installed a 10-meter high LED panel and a totem to project videos produced for the World Psoriasis Day 2016 Campaign. The association took hundreds of photos with parliamentarians and members of civil society holding signs indicating support for the cause.

On October 26, on the request of the association, Psoríase Brasil met with Dr. Maria Inez Pordeus Gadelha, Director of the Department of Specialized and Thematic Care of CONITEC/Ministry of Health in order to seek support from the department to create a continuous channel of dialogue with the Ministry of Health by forming a multifunctional group, in which representatives of civil society, such as Psoríase Brasil and the Brazilian Dermatology Society, could share their knowledge about the disease with different areas of the ministry, as well as its economic impact and effects on the quality of life of patients, the different forms of tre-

atment, among other topics. The goal is to jointly develop a national plan for the treatment of psoriasis.

The action in Congress sought to support the advocacy work that Psoríase Brasil has carried out for years. To this end, the letter filed at CONITEC and delivered to 41 legislators involved with the issue of health requested responses to demands which are awaiting a stance from the government.

Among them are: - The implementation of the World Health Organization (WHO) Resolution of May 2014, which recognizes psoriasis as a serious, incapacitating, non-transferable, painful, disfiguring and incurable disease; - The universal offer of treatment determined by the Clinical Protocol of Therapeutic Guidelines (PCDTs); - The indication of CONITEC to form a working group, agreed in a Public Hearing in June 2015 and still unanswered; - The acceleration of CONITEC in relation to the public survey conducted by the Commission between February and March 2016, directed at the population to provide support, among other factors, for the updating of the Clinical Protocols and Therapeutic Guide-

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Letter delivered to CONITEC

lines (PCDTs) published in 2012/2013 for some diseases, with psoriasis being the disease that received most popular participation in the survey. This instrument should result in a Public Consultation for the inclusion of new drugs and procedures for the treatment of psoriasis. Despite incessant pressure and demand, the Commission has yet to take a public stance on the issue.

The impact of World Psoriasis Day actions in Brasilia surpassed those of 2015. The total number of parliamentarians reached in 2016 was 141. Of the 26 political

Parliamentarians reached in 2016

parties present in the Chamber of Deputies, the association contacted 23.

While PsorĂ­ase Brasil was in Brasilia, regional associations promoted their own acts of aware-

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Materials developed by Psoríase Brasil communications team for regional campaigns

ness connected to World Psoriasis Day 2016. There was mobilization in Amazonas, Rio Grande do Sul, Paraná and Paraíba. Psoríase Brasil provided materials to each association. Psoríase Brasil also produced digital fliers for the activities in each region.

The Association of Psoriasis Patients of Paraná (PSORIPAR), with the support of the group Grape SBD Psoríase, promoted a commemorative event in the city of Maringá on October 22. The event included the participation of health professionals such as dermatologists, rheumatologists, psychologists, nutritionists and pharmacists, along with civil servants of the Maringá Municipal Health Department. Also present was a team of lawyers from the University of Maringá who have collaborated on the lawsuits filed by psoriasis patients to demand free access to drugs not provided by the national health service.

The Amazonas Psoriasis Association (APAM) held a lecture with dermatologist Dr. Rossilene Cruz in the auditorium of the Alfredo da Matta Foundation in Manaus on October 27. In Rio Grande do Sul, the Association of Psoriasis Patients of Rio Grande do Sul (PSORISUL) held an event at the Rio Grande University Hospital on October 29. The event was organized by dermatologist Dr. Fábio Andrade, professor at the Federal University of Rio Grande (FURG), and the president of Psoríase Brasil also took part.

The Association of Friends and Psoriasis Patients of the State of Paraíba (APSOPB) held a “Psoriasis Awareness Week”. The activities began on October 24 with the Week’s opening at the Center for Psoriasis Support and Treatment of Paraíba, at the Lauro Wanderley University Hospital. On October 25 and 26 there were discussion groups about the disease at the Family Health Units. On

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Regional campaigns with materials provided by PsorĂ­ase Brasil

Press office clippings from World Psoriasis Day 2016

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October 27, a session was held at the João Pessoa City Council on psoriasis and the challenges facing its treatment. On October 28, the Lauro Wanderley University Hospital of the Federal University of Paraíba held a lecture on psoriasis, and to round off the week’s events, on Saturday, October 29, there were a leafleting campaign and recreational activities in commemoration of World Psoriasis Day. The promotion of World Psoriasis Day generated spontaneous media coverage in certain regions of Brazil. The press office created press releases, notices and articles, as well as putting together press kits and sending them to news desks. There were also interviews and contact with journalists to promote the campaign and the actions held by Psoríase Brasil for the World Day. They received spontaneous media coverage on television, radio, newspapers and websites in Brazil, as well as from one publication in Portugal.

November

Between November 25 and 26, Psoríase Brasil, represented by its coordinator, attended the Multidisciplinary Biotechnology Forum in São Paulo (SP), sponsored by Abbvie. The association also attended a forum to take part in a discussion about patient safety in medication use,

Latin American associations gathered in Florida

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which took place on November 29. This event was promoted by CLAPBio alongside the Instituto Lado a Lado Pela Vida, and was held at UnB, in Brasilia. Important figures from the health authorities were present, as well as leaders of patient organizations, university professors, and representatives of Biored Brasil, of which Psoríase

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Brasil is a member.

The association began the second wave of psoriasis patient research about the reality of psoriasis patients to verify the data presented at the Public Hearing held in 2015, with the research forecast to be completed in February 2017.

The president of Psoríase Brasil, Gládis Lima, was invited to attend the first Meeting to Strengthen Access to Health Care in Latin America (REFASAL). The meeting took place in Florida, USA, between November 29 and December 1.

REFASAL is an initiative of Novartis Pharmaceuticals by way of its Corporate Responsibility Project, in partnership with Florida International University and its Global Health Consortium, and Policy Wisdom LLC. The purpose of the meeting was to encourage collaboration and strengthen Latin American patient organizations to work on initiatives that help obtain better results and sustainable access to health care, focusing on the use of technology and innovation to define projects and strategies.

The meeting held at Florida International University came as a result of three previous Latin American Meetings, also promoted

by Novartis Pharmaceuticals, which occurred in 2013 in Bogota, Colombia, and in the years 2014 and 2015 in Panama. Psoríase Brasil participated in the regional meetings, which allowed for the

Elected mayor Leonardo Pascoal meets with Psoríase Brasil

Psoríase Brasil at the Porto Alegre City Council

exchange of experiences and information, and the strengthening of Latin American psoriasis patient organizations.

December

In the last month of 2016, Psoríase Brasil was in the city of Esteio, near Porto Alegre, in Rio Grande do Sul, to talk to the newly elected mayor, city councilor Leonardo Pascoal, about carrying out a pilot program of care for psoriasis patients. The proposal of the

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organization is to enable health workers to better understand the disease, which should allow for the correct diagnosis and treatment of psoriasis patients, noting that this is one of the difficulties identified by the WHO’s Global Report on the quality of life of patients.

Another activity carried out

by Psoríase Brasil was the intensification of work alongside the Porto Alegre City Council, by way of councilor José Freitas, for the approval of the bill to create the Psoriasis Protection Network, pending before the municipal legislature. Days before the council entered recess, the president of the association and the councilor presented information about the disease and the impact on patients’ lives to 36 councilors in the plenary room.

The bill, authored by city councilor José Freitas, 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; disseminate information about psoriasis to the public, such as its symptoms, treatment and care facilities, among others. To achieve these goals, actions of promotion, protection, disease prevention, diagnosis, treatment, rehabilitation, harm reduction and health maintenance must all be carried out.

The issue is set to be resumed in February 2017, after the recess of the Porto Alegre City Council.

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Media relations Aware of the importance of media relations to connect the association with its various audiences, Psoríase Brasil implemented a comprehensive plan in this field. The organization invested in hiring professionals to plan and carry out demands such as producing graphic materials, writing texts and various documents, press relations, professional photography, holding events, producing videos, managing relationships with various audiences, development of infographics, companies for running events, among other activities and materials developed. There was also investment made into professional presentations for Psoríase Brasil’s participation in Geneva and of the results obtained through the actions for World Psoriasis Day 2016. The association translates a large part of its communication and management materials to Spanish and English.

Psoríase Brasil formally hired a media relations team in October 2015 and ever since has maintained a team of professionals

to take care of this area. From January to May 2016, the association worked with a company, and since August it has retained Dixon Comunicação to carry out planned activities. The companies hired were tasked with: producing texts and various documents such as letters, speeches and presentations; translating materials from Portuguese to Spanish; press office work; writing reports; covering events; contacting the press; developing a newsletter; following up interviews; preparing and delivering press kits; writing journalistic texts, preparing digital material, creating art, administering social media and producing photographs for social media.

Through their press office, Psoríase Brasil gained attention in the media with the promotion of the CONITEC survey from January to March 2016. The news stories produced by the press office were published in various regions of Brazil. First about the survey itself, and then about its extension, moving from February to March. Another topic that

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gained significant attention was Psoríase Brasil’s trip to Brasilia to meet with parliamentarians.

At the time, the president of the association gave interviews to radio stations EBC and Agência Rádio Web. Both broadcasters distribute material to hundreds of local Brazilian radio stations.

In addition, the information circulated nationwide in newspapers and national and regional portals. In August, Psoríase Brasil went to the National Congress, and their meeting with the representative of the Pan American Health Organization also generated media coverage. In September, the main issue covered was the creation and subsequent formalization ceremony of the Scientific Committee of Psoríase Brasil.

The World Psoriasis Day Campaign was widely publicized at a local and national level by the media relations team, who accompanied the association during the activities carried out at the National Congress in October. The company prepared and delivered campaign t-shirts to members of the press. It also carried out the journalistic coverage of the campaign, creating and distributing press releases and preparing real-time posts for social media. The press office wrote the text for the presentation given at the symposium on psoriasis, held in commemo-

ration of World Psoriasis Day. Other activities carried out by the company included creating digital material and artwork for invitations, signs and fliers. Between September and October, it also administered the Psoríase Brasil Instagram account.

During the year, the association hired designer Lourival Machado to design infographics, artwork for leaflets and t-shirts, digital artwork to be used on social media, and a digital newsletter. Four videos were also produced throughout the year by DGB Animação: the results of the World Day 2015 campaign, an animation of the infographic, a video for social media and an animation of the results of the survey on psoriasis promoted by the association and projected on a large LED screen in Espaço Mário Covas in the Chamber of Deputies during the World Day 2016 Campaign.

Each year, the World Psoriasis Day Campaign is the date that receives the most investment and activity in the field of communications. In 2016, Psoríase Brasil held its activities in the Chamber of Deputies, remaining for three days in the National Congress, between October 25 and 27. The organization also invested in leasing equipment for video projection, hiring a professional photographer, producing informative printouts (leaflets, signs

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and infographics), making campaign t-shirts, producing videos and hiring promoters to deliver materials to parliamentarians and members of civil society.

Social media

One of the pillars of Psoríase Brasil’s work is the dissemination of information about the disease, its treatment and the promotion of their work on behalf of patients and against prejudice. Therefore, the association invests significantly in content production and management of two widely accessible social media platforms: Facebook and Instagram. The Psoríase Brasil fan page, besides being an informative medium, allows for direct communication with the organization’s audience, while Instagram has been used to promote campaigns. Psoríase Brasil has a presence on other social media, such as Twitter and YouTube, but they are not updated regularly.

Facebook

In order to step up its communication efforts, in 2016, Psoríase Brasil began to publish at least three weekly posts on its fan page at strategic times of day in accordance with monitoring of periods of increased access. The association has observed that patients and their families use the page as a source of support for treatment, not only seeking informative content, but also using the space and the issues raised to

share their feelings, vent their frustrations to those who understand their plight and exchange support among members of the fan page.

The posts were created by the management of Psoríase Brasil, and as of yet the organization does not have a specific team to manage its Facebook page, nor its other social media accounts. The association was helped with the punctual work of its designer and press office for producing content for the World Psoriasis Day 2016 Campaign.

By comparing the data of posts and audience engagement in 2015 and 2016, there has been growth in the number of likes and level of engagement with the content posted on the page.

Results achieved

Year 2015: 265 posts Year 2016: 554 posts Connections Interactions

2015 2016 GROWTH 5.202 10.405 105,9% 50.726 100.811 98,7%

Average monthly registrations in 2015: 442 Average monthly registrations in 2016: 687 The importance of the Psoríase Brasil fan page goes far beyond the great results shown here, as the page is also used to promote polls and surveys and to seek the registration of patients. The replies and

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participation of the users in polls are used by the association to understand the needs and aspirations of psoriasis patients. The page serves as a tool for Psoríase Brasil to acquire better knowledge of the reality of patients with psoriasis.

In 2016, Psoríase Brasil held polls and surveys that resulted in important data collection. The information obtained by the survey “How much psoriasis negatively impacts the quality of life of patients”, which was presented at the public hearing in June 2015, was posted on the fan page.

The organization also promoted three other surveys on patients’ access to phototherapy, about the sex lives of psoriasis patients and the incidence of psoriatic uveitis. The polls and surveys promoted by the Psoríase Brasil fan page are directly linked to the institution’s official website. The online research website Polldaddy is used to generate reports and databases.

The association uses Facebook’s monitoring tools to monitor the page’s progress and the results of engagement with its audience. Using the tool likealyzer , a comparison made between the Psoríase Brasil fan page and the average of other non-profit organizations rendered amazing results. The growth of the page and its LikeRank, compared with similar pages, shows that the average ranking of likes of pages

is 59, while Psoríase Brasil has an average like ranking of 83. .

Instagram

The Psoríase Brasil Instagram account is used less frequently due to the lack of staff available to manage it.

The biggest interaction with audiences and the page’s most effective use in 2016 came during the World Psoriasis Day Campaign, when the association released videos, cards, photos, information and news clippings of stories published in the media sent by the press office. The administration of the account was supervised by the media relations team for a period of one month. The profile was active between September 26 and October 29, 2016, totaling 1,062 followers and 26 posts over this period. There was a good level of interaction from followers with the posts, and the video posted that reached the largest audience recorded 114 views and the most liked post received 84 likes.

With the results obtained over such a short period of time, this social network has obvious potential as another means of digital communication for the entity to communicate with its audience.

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YouTube

Psoríase Brasil has a YouTube channel where videos produced by the association and other journalistic material are posted.

http://likealyzer.com/es/facebook/psoriasebrasil

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Twitter

Psoríase Brasil has an account on the social network.

Digital Communication

In addition to social media, Psoríase Brasil has an official website which introduces the organization and is updated with information about the disease and the association’s work, as well as publishing polls and surveys. The portal is also the foundation for registering patients, among other activities. In 2015, the organization improved their official site, making it more dynamic and promoting its integration with Psoríase Brasil’s social media accounts. In 2016, the association continued using the foundations of the site updated in 2015, updating it further with news about the organization’s work and improving its layout. At the end of 2016, the organization launched its first digital newsletter.

Third-sector management and qualification

Psoríase Brasil rehired Impacto Social, a company specializing in third-sector professionalization, in order to coordinate their projects. It provided consulting and qualification to strengthen digital communication and to efficiently manage the entire advocacy process, as well as the management and qualification of the Psoríase

Brasil administrative body. In relation to advocacy work, Impacto Social organizes and participates in the association’s actions alongside the government and national and international entities. From 2016, the consultant who provides this service was designated National Coordinator, as part of the association’s strategy to consolidate a unit of national coordination, assisting the management of Psoríase Brasil on a daily basis and making themselves available to consolidate the professionalization of the association. The consultancy also assists in shaping and implementing the projects of Psoríase Brasil and represents the organization in meetings with sponsors.

Impacto Social provides digital communication consulting services for the association, such as maintaining and updating the official website, the mailing list, the database of the national patient register and other tools that automate the process of digital communication. With the company’s help, Psoríase Brasil produces and organizes its own Patient Registry. Polls and surveys were also coordinated by the consulting firm, who in 2016 developed the surveys on patients’ access to phototherapy treatment through the public health service, the quality of psoriasis patients’ sex life and the incidence of psoriatic uveitis.

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Final considerations At the end of another year, the Union of Psoriasis Patients associations in Brazil makes a positive assessment of their work and achievements, such as the expansion of the results of the World Day Campaign and the formalization of its Scientific Committee. The invitation from the IFPA to present Brazil’s case in Geneva was also an important act of recognition of Psoríase Brasil’s work and an incentive for the association to continue its work and the direction given to carrying out its mission.

Psoríase Brasil has sought to professionalize its activities because it believes in the need to have trained professionals to perform the different tasks the association must undertake. In the 2016, Psoríase Brasil noticed significant development in this respect, having designed and carried out activities with the professionalism necessary to achieve their desired results. This task has enabled rapprochement with important national and international entities such as the SBD, IFPA, PAHO, among others, and these entities’

recognition of the seriousness of the association’s work.

Though it has not yet achieved such goals as the creation of the multidisciplinary working group, about which the association has waited for answers from the Ministry of Health since 2015, or the rapid progress of Bill No. 3.639/2015 of Deputy Rogerio Rosso to establish the National Reference Program in Psoriasis Treatment, the association has managed to acquire new allies to support its cause. It is believed that the work carried out during the World Day Campaign 2015 has awakened this and other actions to benefit the cause. Meetings in Congress and with local government for the purpose of advocacy work were extremely important and yielded positive results. The synthesis of the work done in 2016 will serve as the foundation for Psoríase Brasil to continue its fight for the rights of psoriasis patients in 2017.

The association ends the year with four new action proposals that encompass the requests towards which the organization has been

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working. These are the following: carrying out a pilot project to train health agents for diagnosis and referral with psoriasis patients; carrying out ethnographic research on psoriasis patients; creating a Parliamentary Front in Support of

Psoriasis and expanding the World Psoriasis Day Campaign. Certainly, new activities and causes will be incorporated into their coming work, as there is still much to be done in Brazil in order to implement the WHO resolution.

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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

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