ifpa uts presentation ar bb - fundapso file• under the spotlight (uts) is an international ifpa...

Program and Progress

Under the Spotlight

A unique series of documentaries that looks to uncover the true nature of psoriasis by following individual IFPA members over a number of years exposing how the disease impacts their everyday lives

What is Under the Spotlight?

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• Under the Spotlight (UTS) is an International IFPA project supported by Abbott, comprising a series of documentary films and a related website (www.underthespotlight.com).

• The project is a series of documentaries, where the same people are followed year after year, and each year additional countries/IFPA members will join the project.

• In addition, each year a short 3‐5 minute film/trailer has been cut, featuring key messaging, and is used for presentations and advocacy efforts (WHO).

• Every year on WPD, the new documentaries will be part of IFPA’s and the involved IFPA members’ WPD communications.

UTS : Our model for working together

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Steering Group:

IFPAAbbottLucid

IFPA / AILiaison manager

IFPA

Sub‐vendor 1Film team

LucidSub‐vendor 2Web team

Sub‐vendor 3Design team

AbbottPatient relations managers

Patient org ‐ Spotlighters

Patient org ‐ Spotlighters

Regional Patient org ‐ SpotlightersRegional

coordinating team

How does it work on a national level?

• A contract between the Abbott affiliate & the IFPA Member must first be established before initiating program development

• Building and maintaining a solid, open and honest relationship in the local IFPA – Abbott team is key to the success of Under the Spotlight

Role – IFPA Member ownership of the project editorial control of the

documentary and programme in adherence with IFPA Guidelines

Role ‐ Abbott affiliate: Support of IFPA Member partner

• In development & delivery• Launch & media activities• Financially

The key to a successful program…

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Critical success factors:• must involve countries where Abbott has:

‐ already good relations with IFPA Member association‐ patient affairs staff and public relations manager on ground‐ strong resources available

• IFPA Member associations must be ambitious and aligned to IFPA strategy and vision

• communication channels must be available and used by majority of population

• must be continuously assessed by the UTS Steering Group

…on both a national and global level

All parties involved in the UTS program must be familiar with, and adhere to, the European Federation of Pharmaceutical Industries and Associations (EFPIA) Code of Practice on Relationships between the Pharmaceutical Industry and Patient Organisations, or simply follow and adhere to the IFPA Code of Practice.

A short recap of UTS so far

2009• Began with a pilot documentary film involving three

countries/IFPA member organisations• Spotlighters of various ages and severity of disease were chosen

Objective:• Show how psoriasis has affected the spotlighters physically,

socially and economically throughout their lives• Be able to follow the spotlighters over time (for the next 4 years)• Produce a unique documentary uncovering the true nature of

psoriasis and the impact on daily lives

UTS 2009: 1st International UTS documentary

• We met 6 Spotlighters from Denmark, Sweden & Germany

[UTS Status Report, 11.9.10, Camilla Krogh Lauritzen/AI]

UTS 2009 Outcomes – Year 1

• Uncovered and documented how psoriasis impacts very different people in the same way

Career Social interactions Relationships Psychological

wellbeingPhysical co‐morbidities

Not fulfilling their career potential and aspirations

Social avoidance, reclusion, stigmatisation

Avoidance/ destruction of personal relationships

Depressions, anxiety, lack of self‐ confidence

Additional health problems such as psoriatic arthritis

The effects of the disease on a persons life over time

• Trailer shown at EADV, Berlin and sent to WHO to be viewed on WPD• Pilot documentary and website launched on WPD• IFPA has a new successful project• IFPA and Abbott partnership


UTS 2010 Objectives

• To increase awareness and understanding that psoriasis has a long‐term, cumulative, potentially‐damaging effect on those people who have the condition

• To reach multiple stakeholders (through both Under The Spotlight and complementary activities):

Patients Health Care ProfessionalsGeneral public Policy makers

• To become a truly global programme by adding additional countries

• To develop a tool to provide timely and relevant patient education

UTS 2010 2nd International Documentary: Countries

Number of countries increased from 3 to 12:

1. Belgium2. Denmark3. France4. Germany5. Ireland6. Netherlands7. Norway8. Portugal9. Spain10. Sweden11. Scotland/UK12. South Africa


UTS 2010 2nd International Documentary: the Spotlighters

• Culminating in over 40 Spotlighters• We have uncovered and documented that and how psoriasis impact a

greater number of very different people in the same way


UTS Outcome – Year 2 (2010)

• 12 countries involved – Building a global community– Impacts are the same worldwide

• 3‐minute trailer shown at EADV, Gothenburg– To WHO, media, dermatologists, corporate sponsors

• Opportunity for worldwide voting• Enhanced partnership / information exchange• 1st UTS Award for most compelling story

Documentary

Contest

The UTS Award is born…

UTS Award 2010: the winner is…

UTS 2011: Putting the spotlight on ‘secondary impact of psoriasis’

• Psoriasis does not ‘just’ affect 125 million people around the globe.• Psoriasis affects millions of relatives and work places ‐ hence society as

a whole. This is referred to as ‘secondary impact of psoriasis’, by e.g. Prof. A. Finlay and co‐workers.

• Prof. Finlay has defined ‐ and is a pioneer in research referring to ‐ the impact on relatives/‘The Greater Patient’ impact.

• Impact on relatives: UTS in 2011 is to support and complement Prof. Finlay’s research and other ‘hard’ data, by adding the human angle to this.

• Impact on society as a whole: UTS is to support and complement ‘hard data’ on societal impact, by adding the human angle to this.

UTS 2011: core key messages

National UTS contribution to demonstrate the impact on:

The effects of the disease on a persons life over time

Relatives Society

Psoriasis impacts more than the individual: It impacts the entire family.

Psoriasis impacts more than the individual: It impacts society as a whole.

UTS 2011 core key message

Psoriasis has a long‐term, cumulative, potentially‐damaging effect on those people who have the condition, their families and society as a whole.

UTS 2011: Highlights

• NEW! Regional pilot (Latinapso):– Argentina– Puerto Rico– Mexico

• 51 Spotlighters• New UTS international website• UTS international documentary and short film/trailer

• 2nd UTS Award for most compelling story

Future Plans2012: Crossing Borders

IFPA Themes/Goals for 2012

WPD & WPC theme: “Psoriasis: A Global Health Challenge”• UTS films capture similarities and differences between countries and

regions• Preview a short film trailer during WPC

UTS theme: “Crossing Borders” • Try to include ALL IFPA members willing to participate

WHO Strategy goals: campaign to get WHO to recognize psoriasis and support WPD

– Films to use for advocacy (i.e. elected officials, MOH, UN, WHO), WPC, dermatology conferences

– Opportunity to gather needed data– Shows the face of psoriasis

Regions: support and strengthen /build capacity

UTS and IFPA members

IFPA has 43 members; 12 participated in UTS in 2010Abbott is not able to support UTS in all IFPA member countries

How to include all IFPA members in this IFPA program?

Possible solution: use the regional meetings and WPC 2012 to film people with psoriasis ‘crossing borders’, Spotlighters meeting face to face

UTS will be truly global!

Over 125 million people worldwide suffer from psoriasis – we want to share their stories!

THANK YOU!

Three years with UTS: An evolutionary perspective

Benjamin Tang-Petersen, Spotlighter, Danish Psoriasis AssociationLene Riis, Patient Relation Manager, AbbottIFPA SeminarJune 19, 2011

2009: Part of the pilot project

• 4 profiles from Denmark:

• 4 very different stories• Overall objective with the project: Put a human face to the numbers• Give all stakeholders around the people with psoriasis a deeper and

more personal insight into the impact on quality of life and the potential cummulative damage to peoples’ lives

• A picture says more than a 1,000 words

IFPA Seminar AmsterdamJune 19, 2011

2Company Confidential© 2011 Abbott

Heini Dorte Marianne Benjamin

Benjamin: Being a ”spotlighter”

• Why did I join the project?

• What has the project meant to me personallly?

• Why is this project important?

3IFPA Seminar AmsterdamJune 19, 2011

Company Confidential© 2011 Abbott

The films were launched in Danish parliament on World Psoriasis Day 2009

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• Leading up to World Psoriasis Day, politicians from the Danish Parliament were ”dressed up” with psoriasis to experience some of the stigma imposed on people with psoriasis

• They walked the street, took the train, went to shops, stroke up a conversation with people they did not know – they tried to live and feel the life of psoriasis

• On World Psoriasis Day, an event was carried out at the Danish Parliament where the politicians shared their experiences from ”the day as psoriasis patients”

• The Minister of Health opened the event, while the Under the Spotlight films ran in the background

• The spotlighter, Heini, presented Under the Spotlight to the audience



2010: Follow-up films with all 4 spotlighters

• In 2010, the films from both 2009 and 2010 have been used in a number of settings

• Local chapters of the Danish Psoriasis Association have used the films in local events, combining them with lectures from physicians and dietists

• At Abbott, we have used them in seminars with physicians and nurses with great success



2011: Building a new event around UTS

• This is now the third year of Under the Spotlight in Denmark

• The project is well established within the Danish Psoriasis Association and is slowly becoming known in the dermatology community

• But we think the message of the effect on quality of life needs to be reinforced constantly and more can be done to get the message to a wider audience

• In a brainstorming session between the association, Abbott and our PR agency we came up with the idea to create a truly unique event that supports Under the Spotlight while at the same time communicating life with psoriasis

• We call it: Behind the Mask



Behind the Mask 2011

• 4 groups of young actor students competed against each other with 10 minute performances giving their interpretation of life with psoriasis

• Each group were given the Under the Spotlight movies as inspiration and were coached by each one of the spotlighters as well as by a professional actor

• The battle took place March 19, 2011 at the Royal Theater in Copenhagen

Tine Appel Marianne Bro Benjamin Tang

The programme alternated betweenfacts and performanceSpeech by the chairman of the Danish Psoriasis Association, Jens

Sloth. He talked about the work of the association and delivered several messages of political importance

Speech by the chairman of the umbrella organization Danish Patients, Lars Engberg. He talked about the dangers of the new focus on prioritization in the healthcare system threatens especially the smaller patient groups

Professor Lars Iversen from Aarhus University gave a historic perspective of psoriasis and talked about the revolution of biologics to the treatment of psoriasis. He also talked about the new research into comorbidities and how psoriasis is being established as more than a skin disease

2 Under the Spotlight films were shown, alternating with the performances by the 4 groups

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Over 300 spectators joined the event

• All stakeholder groups were invited and represented at the event:

• Patients, members of the association• Politicians• Dermatologists• Nurses• Rheumatologists

Like in X-Factor, the performances were judged by a panel of professionals

Actor Peter Mygind Writer and scenografer Dorte Høeg

Musician and member of thePsoriasis associationFinn Brodersen

And this is how it went.....



Psoriasis foreningen (lowres).wmv

The 3 M: Media impact so far• Electronic media:

• 15 minute interview with one of the judges on Denmark’s largest radio channel detailing impact on quality of life and on the event

• TV interview on one of the main channels with one of thejudges

• On-line media:• Article on dr.dk, the public service network’s website• Local newspapers in Copenhagen, both print and on-line• Under the Spotlight Facebook profile:

• Active users up 30% since last week• ”Likes” up 25% since last week• 90% increase in comments on the ”wall” the week after

event• 50% increase in visits compared to before the event

• Print media:• Articles in several local media with the performing groups• Article in prestigious ”Weekly Journal for Physicians”• Lead article in magazine for physiotherapists



The 3 M: Members

• The Danish Psoriasis Association has used the event to drive for more members

• Since the event, the membership base has increased by 10% and is still climbing



What happens next

• The event will be sent on tour to 4-5 regions of Denmark

• The program will be similar, but without the competitive element

• This will drive local media interest

• This will generate political interest locally

• This will give the Danish Psoriasis Association opportunity to keep the dialogue going on Facebook

• This will create further base for the future Under the Spotlight releases

• We are filming the 2011 sequences now

• We have added 2 new spotlighters this year: Jeanne (18) and Christina (33)



Lastly, a word from Birgitte – would she do it again?

“If you ask me if I would do it again, the answer is “YES”! This is beyond everything you can imagine. This is an important step for every psoriasis patient in the world. And I can just say to those who consider taking part in this project: “This is the real deal” – this is humane – this is life as it is living with psoriasis and psoriatic arthritis – and this is the way we are supposed to get the world to listen to the voice of the patient”

Birgitte Snedker-Sørensen, The Danish Psoriasis Association

Presentation TitleDate

15Company Confidential© 2005 Abbott

"2010 - A campaign that impacted the 3Ms in just one year".

Irene Escribano. Acción Psoriasis(SPAIN)

Objectives and image

To providing Spanish population with information on the emotional effects of the diseases (also psoriatic arthritis) and its comorbidities…

… by helping local patients´ association Acción Psoriasis to grow (in terms of members) and motivate them to collaborate selflessly with the association to contribute to social awareness…

… to strengthen the positioning of psoriasis (and psoriatic arthritis) as weakening diseases(Cumulative Life Course Impairment)…

… to increase the number of impacts in Spanish media about psoriasis and its comorbidities.

Why “En primer plano”?

Call it “En Primer Plano” in Spain

– Because Spanish is the second most spoken language in the world (359 million people) just behind Mandarin Chinese.

– Because only 26% of the Spanish population is fluent in English.

– Assuming that 1.4% of the population suffer psoriasis in Spain (650,000 people), just 167,440 could be attracted by the English title.

– For AEPSO (Argentinian patients´ association) and other Spanish speaking languages.

International Psoriasis Day

Oct Nov 2011Jun

National Psoriasis Day

May

•7 meetings

•7 Press Conferences

Dr. Puig´s Biologics CongressNational

Congress

• 9 Meetings

•9 Press Conferences

Sept Nov Jul

5 Cineforums

Under the Spotligh Summary

•Patient´s selection

•Spotlighters filming

•Documentary production

• TRAINING • Speakers;P.Association&Physicians • On Line;P Association • Journalists; Pathology • WEB • www.underthespotlight.es

• www.enprimerplano.org

Jan 10 Apr

Phase I Phase II Phase III

Phase I – January to April 2010

• Documentary Production– 7 Stories from 7 patients – Music from Nacho Cano - One of the most famous Spanish pop/rock compositors)

(Altruistic Collaboration)• Set up the web; www.underthespotlight.es / www.enprimerplano.org

• Training:– Physicians and P. Associations; Pathology and messages – P Associatons; Use of On line tools – Journalists; Pathology

• Posters and Materials:– Leaflets– Press Dossier – Posters ….

Working on …. “the hook “


….. MULTISTAKEHOLDER APPROACH

Working on …. “the success“

TARGET ACTIONS

Dermatologists Congress of the Spanish Academy of Dermatology and Venereology (AEDV), …

Pharmacists Local national psoriasis day conferences

Patients (in/not linked with Acción Psoriasis) Premier, press office, Acción Psoriasis conferences, Congress of the AEDV, …

Mass MediaPremier, Congress of the AEDV, …

Strategic parners


…. Acción Psoriasis tricks to make the difusion

Working on …. “the success”

Email Signature

Patient Association Website Link

Patient Association Quarterly Magazine

Patient Association Facebook Profile

Metrics for the achivements and results

• The 3Ms:

– Audience reached (Media)

– Advertising value of media (Money)

– Acción Psoriasis member growth (Members)

Achievements and Results

• Patient’s Association membership increased by 22% thanks to the project

• Excellent media results Impacts: 298

Audience: 34.660.927

Advertising value: 1.651.730 €

Achievements and Results Website visits

12,706 visits 2,118 per month

9,678Documentary reproductions

www.enprimerplano.org / www.underthespotlight.es

In Six months:

Pontevedra

La Coruña

LugoOviedo

León

Orense

Zamora

Santander

BilbaoSan Sebastián

Vitoria

Pamplona

LogroñoBurgosPalencia

Valladolid

Salamanca

Ávila

Segovia

Soria

Zaragoza

Huesca

Teruel

Tarragona

Lérida

Gerona

MadridCastellón de la Plana

Valencia

AlicanteMurcia

Albacete

Palma de Mallorca

Sta. Cruz de Tenerife

Las Palmas de Gran Canaria

Guadalajara

CuencaToledo

Cáceres

Badajoz Ciudad Real

JaénCórdoba

SevillaHuelva

CádizMálaga

GranadaAlmería

Barcelona

Achievements and Results

20 Spanish cities2.370 meeting

attendees

And the best of our Results …..

Abbott Spain and Acción Psoriasis have been

recognized with the IFPA´s Under the spotlight award in

2010

UTS 2011 tactics

- New video on the Spanish spotlighters reunion where they explain what has the project meant for them, what they feel they have changed in patients´ minds, how their disease/s would have been in case they had have access to campaigns like this in the past, etc…

- Extension of two individual stories. Two of our spotlighters are pregnant (one of them for the first time) and this will give us the opportunity to explore their fears and how they would feel “guilty” in case they transmit the disease to their children.

UTS 2011 tactics

- Three new sections in our local website (www.enprimerplano.org):

- About Acción Psoriasis: similar contents to the one about IFPA which is included in the global Under the Spotlight website.

- Your videos: interactive section to share via videos (recorded with mobile phones, hand video cameras, etc…) how psoriasis has impacted in people´s life.

- Your tales: interactive section with the same purpose that the previous one but using written tales as the tool to share the experiences living with psoriasis.

UTS 2011 tactics (cont.)

- Support to Acción Psoriasis in all their regional lectures for patients (during National (Barcelona, Bilbao, Santander, Alicante, Murcia, Burgos and Zaragoza) & World Psoriasis days; May/June and October/November). En Primer Plano will be part of the contents they patients´ association will share both with journalists and patients attending their lectures. Patients will also be informed on the new sections of the website and encouraged to visit them and to interact with “someone like me” in the sections “Your videos” and “Your tales”.

- “Cinema-forums”: we will organize, together with Acción Psoriasis´ regional representatives, informative & awareness sessions about the disease. We will show the documentary and carry out a debate (with the help of a dermatologist and a psychologist) after the showing. Concrete cities and dates TBC.

Huelva (done), Canary Island, Toledo…

UTS 2011 tactics (cont.)

- Kick off 2011 Spanish UTS with “Street action during National AEDV” (Spanish Society of Dermatology and Venereology) Congress Jun 2011: a group of mannequins (made up with psoriasis injuries) covered by fabric will be placed in an important square of the city where the congress will be celebrated the day it begins. The last day, the fabric will be taken away and mannequins will show what they have been hiding and the feelings the disease has caused.

THANKS!!!

LATINAPSO June 2011

AGENDA

• WHO WE ARE• MISSION AND VISION• OBJECTIVES• FIRST COUNTRIES IN UTS• OBJECTIVES IN EACH COUNTRY• SPOTLIGHTERS OF ARGENTINA

LATINAPSO June 2011

WHO WE ARE

• LATINAPSO is the Latin American Network of Psoriasis• This Network was born in early 2009, designed by

and for Psoriasis Patient Associations• At present time consists of 18 Associations from 11

countries

LATINAPSO June 2011

Puerto RicoMéxico

El SalvadorPanamá VenezuelaColombia

Ecuador

Perú

ChileArgentina

Amazonia Ceará

BrasiliaBahia

Rio de JaneiroSão Paulo

Rio Grande do Sul

Brasil

WHO WE ARE

LATINAPSO June 2011

LATINAPSO June 2011

MISSION - VISION

To achieve greater visibility of the disease in theregion, to strengthen the management ofAssociations and and to promote creation ofthese where there are none. Detection ofleader patients

MISSION

In the medium term LATINAPSO will be theregional reference for people with psoriasis andtheir Associations, working together with patientand medical Associations and in the region andworldwide

VISION

LATINAPSO June 2011

OBJECTIVES

To increase the visibilityof the disease generating social, medical and political awareness

Contribute to thestrengtheningand development ofAssociations in LatinAmerica, therefore tothe developmentof IFPA

LATINAPSO June 2011

FIRST COUNTRIES IN UTS

•Argentina

•Mexico

•Puerto Rico

LATINAPSO June 2011

STATUS ARGENTINA

• Pre casting at AEPSO’s database, 30 people were interviewed

• Casting with 10 patients

• Selection of 5 stories

• Filming in different location

Tasks accomplished so far

• Editing and production of the film

• Launch and broadcasting• WPD 2011

Tasks to be accomplished

LATINAPSO June 2011

STATUS MEXICO

•Requesting and receiving quotations for the film•Call for casting of testimonials at AMCPSO•Selection of Spotlighters•Filming of testimonials at AMCPSO.

Done so far

•Filming at locations•Video editting•Launching and broadcast strategy•WPD 2011

To be done

LATINAPSO June 2011

STATUS PUERTO RICO

• Patient selection• Patient stories• Filming Budget

• Waiting for clear legal regulations

Tasks accomplished so far

Tasks to be accomplished

LATINAPSO June 2011

OBJECTIVES IN ARGENTINA

• That Psoriasis is recognized as a chronic disease. (70% discount on medicines)

• That Psoriasis is included in the Compulsory Health Plan• Access to prescribed treatment without exception• That patients actively seek the best treatment to improve their

quality of life

LATINAPSO June 2011

OBJECTIVES IN MEXICO

• That Psoriasis and psoriatic arthritis in Mexico are classified as a chronic, non-transferable and in certain cases disabling diseases

• That all Psoriasis patients are entitled to a proper medical consultation, and therefore they can obtain their treatments on time and for free

• That rates of discrimination and social rejection suffered by the patient with Psoriasis are lowered

LATINAPSO June 2011

OBJECTIVES IN PUERTO RICO

• That the government of Puerto Rico recognizes Psoriasis as a chronic disease and medical treatment to patients are provided

• That private health plans recognize the true impact of the disease and cover all necessary treatments.

• To educate the community about psoriasis• That psoriasis patients are aware of APPAP advocacy work• That psoriasis patients learn about disease, and the rights that

have as patients to achieve their prescribed treatment

LATINAPSO June 2011

SPOTLIGHTERS OF ARGENTINA

Her history is impressive. She has common problems that most of women have but with a great impact because of ther psoriasis which may result in many people being identified with her

Anabel Buczek

LATINAPSO June 2011


He is very young and has a baby and has pso and arthritis. His profession in the construction area makes his life with arthritis even worse. Very unthusiastic for the future.

Martín Arguello

LATINAPSO June 2011


She has severe arthritis and psoriasis . Compelling story, she coordinates AEPSO´s relations with patients . Had to stop treatment for insurance access reasons, her arthritis is getting worse very fast.

Beatriz Larrea

LATINAPSO June 2011


34 years (employee in a store, has to meet people and has a terrible psoriasis) He is a man who fights constantly with psoriasis, and his story is very encouraging and convincing. He had been denied his certificate of disability, though for long time he could not move at all.

Claudio Yablanseck

LATINAPSO June 2011


She has severe psoriasis being adult. Her history is very shocking, especially her problems with her medical insurance. She was accused of lying that she has psoriasis when she applied to the insurance. She did not lie, but at that time her psoriasis was very mild.

Patricia Simovich

Now that she needs her expensive medications she was “fired”. Thanks to AEPSO she is back.

LATINAPSO June 2011

SPOTLIGHTERS OF MEXICO

Judith González49 years oldHousewife

She suffers from psoriasis and psoriatic arthritis. She started with severe symptoms in her feet and her case is very shocking because her son also suffers from psoriasis. Her diagnosis was very difficult and from the beginning, she thought her son had spread the disease.

Is the third generation from her family to suffer from psoriasis.

LATINAPSO June 2011


José Vazquez47 years old

Shoe repairman

He suffers from psoriasis since he was 36 years old.He started with scaly scalp that were down gradually to the neck, and he has suffered a severe crisis of psoriasis. In his case, stress and despair increased the symptoms of the disease.He has come to have up to 85% of his skin with lesions about psoriasis, seriously affecting his self-esteem.He had been hiding from others due to the disease and he was about to lose his family.

LATINAPSO June 2011


Ricardo Navarro57 years old

Business Administrator

He suffers from psoriasis since 11 years ago.He was extremely affected because his whole body was covered by the disease.He had a very strong depression and despair because he ignored it was psoriasis.He was afraid to infect his family and experienced social rejection.He was incapacitated for several months due the disease and his rehabilitation was slow and painful.

LATINAPSO June 2011

Puerto RicoMéxico

El SalvadorPanamá VenezuelaColombia

Ecuador

Perú

ChileArgentina

Amazonia Ceará

BrasiliaBahia

Rio de JaneiroSão Paulo

Rio Grande do Sul

Brasil

NEXT SPOTLIGTERS?

LATINAPSO June 2011

ifpa uts presentation ar bb - fundapso file• under the spotlight (uts) is an international ifpa...

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