My first year with Lupus Europe – Sara Badreh

Sara was elected to LUPUS EUROPE’s Board of trustees last October. Here is how she describes her first 8 months as a LUPUS EUROPE trustee:

After an induction with the various trustees and learning more about LUPUS EUROPE in general, my first big conference was the EULAR PARE Youth conference: Amazing, so big, so glamorous and yet so relaxed and such a friendly environment. It was really the best conference to start with! I learned so much from other patients living with Rheumatic diseases in Europe and the workshops there were so inspiring and engaging. I made some new friends and got thrown straight into networking and learn how to do that in the best way. After the PARE Youth conference I felt like I had gotten some “meat on my bones” and felt ready for my next challenge, which was a Lupus Think Tank in Washington D.C. It was a very intense meeting: just one day where me from Lupus Europe, LFA, Lupus Research Alliance, Lupus and Allied Diseases Association together with a pharmaceutical company and ACR brainstormed to bring different ways of approaching awareness about Lupus and what to focus on regarding treatment for patients.

I then joined the Lupus Academy, a program for Rheumatologist specialized in Lupus where they can ask questions, present difficult cases and get advice from experienced professors. It was very interesting to hear the doctors’ point of view, and feel how much they care about their patients and very humbling to hear their worries when major flares happen and everything is on their shoulders to try to save their patient. If you think that the doctors don’t care about you and only want to keep you on medications and move to the next appointment without even listening, I can tell you that that is not the case!

 My next stop was at the EULAR course for young rheumatologists. This was my first official presentation for LUPUS EROPE in front of educated doctors. I was so nervous… But it went really well. I presented our patient panel outcomes, how patients with Lupus live with the disease in Europe. It was a really fun group of young doctors, I made some new friends and I hope to go back next time.

After that experience, I got selected to take part in the ReConnet steering committee. reConnet is a network for collaboration between scientists, doctors and health care professionals working on connective tissue diseases,  to unify how to diagnose and treat those diseases, and to bring the same standards of care regardless of what country in Europe you are in. It is part of the European Network project (ERN), a a five-year project funded by the European Commission.

My last big event before vacation was the annual EULAR congress. It was big, flashy, extravagant and way way way too much lecture to go to, meetings to attend and networking to do. While the lectures I attended were very interesting, the networking was even better. Everyone and anyone who has anything related to rheumatic diseases were at the congress, the best place for networking and spreading the awareness about Lupus.

After EULAR, it was time for some vacation: Travelling is more exhausting than you would think! And being a trustee also involved board meetings, a round table with pharmaceuticals, medical doctors and other patient organizations,… The journey has really been an intensive crash course (that lasted a bit longer than just a crash course) in how everything works. So with that, I was well equipped to contribute to designing our next 5 years strategic plan.

 I am very excited to be a part of Lupus Europe during this time when we are shaping how the next 5 years are going to be like! If you want to make a difference and really feel the difference you can make in this world, if you are interested in making a difference for people living with Lupus, take up some of these volunteering positions, apply to our board or to be one of our co-opts to leave your mark in this world, knowing that you’re making a difference. I promise, you will Not regret it!

 Sara

Some great news from Lupus UK – Janine, LUPUS UK National Office, organised 5 Runners in the Virgin London Marathon, 23rd April, with £4,290 being raised for LUPUS EUROPE.
THANK YOU for your great work, Janine!

Pictured below are Ed and Charlotte. Well done to you both and the other runners!

For more information on running in the London Marathon for Lupus UK.

The summer is a quieter time in terms of events to attend for LUPUS EUROPE but it is not quiet in terms of ongoing projects (including starting to build the next strategic plan for 2018-2023) and getting ready for the convention later in the year.

As you know, this year’s convention will be held from 15th-19th November in Milan, Italy. We’re looking forward to reconnecting with all our old friends and new representatives. If you haven’t already done so, it is time to sign up to attend the convention. The discount for registration ends 15th of July.

We are also looking for further trustee nominations. If you would be interested in getting more involved in LUPUS EUROPE, please don’t hesitate to get in touch with the secretariat or anyone on the board. You can read more about being a trustee in these blog posts: Katharine and Kirsi.

We’re really looking forward to seeing you in Milan for an exciting programme with lots of warmth, information and motivation.

The Lupus Europe Board of Trustees (from left to right – Jeanette Andersen, Sara Badreh, Kirsi Myllys, Katharine Wheeler, Alain Cornet (secretariat), Anne Charlet, and Kirsten Lerstrøm

The blog has been quiet recently, and with good reason! We have all been so busy attending events, participating in work groups and meeting face-to-face, that we haven’t been able to keep up on the blog – despite our super-human lupus powers!

Hopefully you’ll know everything that has been going on from reading the newsletter. If you haven’t already signed up to get it in your inbox, follow this link.

Here’s a brief glimpse – not a complete list – of a few things we have been doing:  

• Sara has attended several meetings, mainly on research subjects. Among others, she travelled to Lisbon in March for the PARE congress, Washington for the Lupus think tank in April, and in May, the Lupus Academy, in Lisbon, Portugal and the 8th EULAR Scientifically Endorsed Course on Systemic Lupus Erythematosus, in Pisa, Italy.
• The whole board met in March for multi-stakeholder meetings on research (more information below) and clinical trials – and in June to progress on LUPUS EUROPE’s 2018-2023 Strategic Plan.
• Jeanette, Sara and Anne are attending EULAR this week (meet them at the LUPUS EUROPE / FELUPUS Stand in the EULAR village – V9)
• Anne and Alain are linking with our partners and sponsors to close the current year’s funding. Anne has also been interviewed for press releases and in videos for World Lupus Day.
• Katharine attended EPF’s AGM and continues her work with the EPF Access work group, as well as working on creating closer ties with members (Lupus catch-up chats etc.) and working on various aspects of communication (including the blog).
• In addition to Youth activities with Young PARE and working on preparing the LUPUS EUROPE Youth Patient Panel, Jeanette has also been working on one aspect of the Kick Lupus project – you will hear more during the convention.
• Annemarie Sluijmers, from the Dutch group, NVLE, has also been co-opted to integrate an EPF group, working on Patient Safety.
• Ines from the Portuguese group was instrumental in creating the social media campaign during the month of May. Special thanks must also go to Lupus UK whose material inspired the campaign. In addition to the combined World Lupus Federation campaign, we were all delighted with the social media campaign and the number of people who translated and shared.
• Our friend Nick Hicks, has been helping us to work on the building of a “Voices of lupus” campaign, building on the testimonials collected in Würzburg.

We are also delighted to announce that Jeanette, LUPUS EUROPE’s secretary has been accepted for the EUPATI PATIENT EXPERT COURSE which will begin on the 4th of September 2017 and will run for 15 months.

The EUPATI Training Course – Patient Experts in Medicines Research & Development is an exciting and unique opportunity offering patient advocates expert-level training in medicines research and development, specifically tailored for them.

Upon completion of the course, you should have the knowledge to allow you to make a meaningful contribution to the medicines research and development process, with the aim of providing better medicines to patients. You will also be able to generate a broader dialogue around future patient involvement in the medicines research and development process across Europe.

There is a great need for patient experts in lupus! We need better treatment of our disease and this starts with research. Here patient experts play an important role, because they know how it feels to live with the disease and follow the treatment. Patients and researchers might not always have the same priorities when it comes to developing new treatments for the disease. Often the patient will focus on the side-effects of the treatment and a better Quality of Life, where the researcher is dedicated to minimizing disease activity at (almost) any cost.

World Lupus Day – In addition to the other World Lupus Day activities, you may also have seen the videos, starring Anne, LUPUS EUROPE Vice-Chair, and her wonderful daughter Amélie, speaking up for young people with lupus.

A personal World Lupus Day experience – Hate the disease, love the people!

“This year for World Lupus Day, to continue efforts of awakening public awareness of lupus, Neovacs*, the French Biotech company, decided to create testimonial videos, and publish press releases.  They asked me if I would be willing to talk on video about lupus – they would provide the questions and the cameraman. That’s not an offer one refuses!

So, days before May 10th, the journalist and the cameraman came to my apartment and set up.  “This will only take 15 mins”… two hours later they left with four videos in their bags.  Even if one is used to speaking in public, being filmed is very different and causes more stage fright than I expected.

But they asked the right questions, and let me start and start again, over and over.  And while I was filming, my daughter Amélie watched on to make sure that I didn’t say anything too far off topic or too far from the truth.  And as she watched, I happened to mention that it was Amélie who was the patient and the reason I was at all involved in Lupus Europe.  Their eyes lit up and they turned to her.  She smiled timidly, understanding what they were interested in, and said, ok, if they wanted, she would also say something on video.

In my videos, I answered their questions as best I could with a lens pointed straight at me, trying hard to remember all key points that I had prepared in a phone discussion with Bernadette (chair of French speaking Lupus Belgium).

But once I watched the videos, it struck me how, no matter how schooled what I had to say was, it was the honestly and simplicity of that young woman, my daughter, speaking from her heart, that felt true and meaningful, and was the real message.  She lives with lupus in her, waiting to pounce when she least expects it, but she lives well, so strong, and that’s what we see on the video.

And in the end, that is the true World Lupus Day message: live your life as best you can, sometimes maybe even forgetting you have lupus, but live like no-one else knows”.

Anne (mailto:Anne@lupus-europe.org)

You can access the videos on LUPUS EUROPE’s Youtube channel 

LUPUS EUROPE’S NEXT CONVENTION – MILAN, ITALY, NOVEMBER 15 to 19, 2017.

This year´s theme will be pain, fatigue and stress and the programme will combine valuable speakers, interactive workshops and sharing sessions. This will also be the occasion to collect your final input on our 2018-2023 Strategic plan, making sure all our energy is focused on what most matters to achieve our vision of “A fulfilling life for all people living with lupus, until we have reached a world without lupus”.

3 trustee positions are up for election at our Milan 2017 Council meeting. If you, or anyone in your national team, would be interested in joining LUPUS EUROPE’s Board of trustees, don’t hesitate, apply through your national group!

See more about being a LE trustee on our blog: https://lupus-europe-blog.org/2015/05/17/about-being-a-trustee-katharines-story/ or contact one of our current trustees.

Applications should be sent to the Lupus Europe Secretary at secretary@lupus-europe.org (mailto:secretary@lupus-europe.org; secretariat@lupus-europe.org by July 15, 2017.

LUPUS EUROPE is currently preparing for its next strategic plan from 2018-2023. As a result, we have had extra meetings, including a face-to-face meeting over two days with multiple stake-holders on the subject of research and clinical trials.

As discussed during its Annual General Meeting last month, the European Patients’ Forum is deeply concerned with the very uncertain future of European health collaboration and of the Health Programme post-2020. The five scenarios proposed by the European Commission Mr. Junker in April show that health is not a priority for the European Union.

To voice concerns and initiate what is hoped will be a fruitful dialogue on the future of health at EU level, 39 health organisations, including EPF and several of its European members, sent an open letter to Mr. Juncker on 6th June.

The objective of the letter is to reiterate the view that health is absolutely and unequivocally a central topic for the EU, and to open a dialogue.

Please support and share the open letter found which you will find below. You can also find it here as well as tweets to share at this link.

Dear President Juncker, EU Health Collaboration is crucial for Europe’s future

Brussels, 6 June 2017.

To: Jean-Claude Juncker, President, European Commission

cc: Frans Timmermans, First Vice-President, European Commission

Vytenis Andruikaitis, Commissioner, DG Health & Food Safety

Günther Oettinger, Commissioner, DG Budget & Human Resources

Carlos Moedas, Commissioner, Research, Science & Innovation

EU Health Collaboration is crucial for Europe’s future

Dear President Juncker,

We, the undersigned organisations, representing EU health stakeholders, wish to express our grave concern about the future of health in European policies and programmes, in the light of your White Paper on the Future of Europe, and propose an urgent meeting with you and your services on this topic.

Our determined view, shared by the vast majority of EU citizens, is that health is absolutely and unequivocally a core business of the EU. Protection of a high level of human health and wellbeing is entrenched in the Treaties of the European Union[1]. EU collaboration in the field of health is indispensable for the future of Europe and rebuilding the trust of citizens in the European Union. We need more health to unlock the full potential of economic and social policies.

70% of Europeans want the EU to do more for health, according to the most recent Eurobarometer survey. With such a strong, unequivocal demand from EU citizens for more action in the field of health, it is essential that this is not only maintained, but actually enhanced. The EU needs to continue deliver results that make a tangible difference in the daily lives of its citizens and thus re-establish people’s trust in its institutions.

Health protection and improvement is a great success story of the European Union

Life expectancy is rising across the EU. Accession to the Union is positively correlated with health gains and longer lives. Without EU level action and support of the Health Programme, EU citizens would be more at risk from health threats. Whilst there is a need for continuous improvement, protection standards for patients, consumers and workers are amongst the highest in the world, thanks to EU legislation. Indeed, European integration and collaboration has brought great benefits for our health and provides vital resources for our health services: free movement of health professionals, health technologies and patients. We are assured of our right to treatment in other member states, under common minimum safety and quality standards. We are also reassured that, thanks to cross-border collaboration, highly specialised expertise will be shared across borders, as the EU has just embarked in one of its most promising transnational initiatives, the European Reference Networks for Highly Complex and Rare Diseases – an area not only where EU-wide strategies are effective, but also where the added value of EU action is striking.

This is thanks to EU legislation, rights and protections which complement national laws.

It is impossible to imagine a functioning internal market which does not consider and protect the health of its citizens, patients and consumers. Economic growth can only be built by healthy and resilient populations.

EU coordinated health action saves lives and reduces the burden of disease

By facilitating closer cooperation, the EU has saved countless citizens’ lives and contributed to their improvement. The Health Programme is a vital enabler for health policy formulation and for effective implementation and it has, over several years, triggered shared good practices on complex health topics for which EU cooperation is essential (such as patient safety and quality of care), encouraging upward convergence.

The conclusions of the previous Health Programme evaluation were extremely positive, with evidence of its impact beyond its relatively modest (financial) size, and exchange of knowledge and experience between member states which would not otherwise have taken place. Moreover, it “made it possible to develop many activities… where the economic situation and budget restrictions would not have allowed them to be made a priority” – now more critical than ever, when national health budgets are under even more pressure. The Programme was seen as providing value for money, and particularly important for ensuring a human rights-based approach to health policy.

We are therefore profoundly concerned that some of the scenarios in your White Paper on the Future of Europe would even consider reducing European action, cooperation and legislation and to step back from the protection and improvement of our health in Europe.

Instead, this role must be enhanced in the future through a new robust and ambitious Health Programme, convening member states to cooperate on health, underpinning vital collaboration with other institutions such as WHO and OECD and supporting health research.

Unprecedented health and social challenges can only be tackled at a European level

There has never been a stronger case, or a more vital moment for Europe to work together to protect our health.

Whilst life-expectancy has improved, the years gained are often lived in relatively poorer health due to the proliferation of preventable chronic diseases, compounded by huge disparities that persist within and between member states. Average life expectancy is 12 years shorter for a man in Lithuania than in Italy. Discrimination and inequality remains widespread when it comes to access to healthy living conditions and healthcare. For example, the lives of Roma people and refugees are expected to be 10 years shorter than national averages and homeless women in Europe die on average at just 43 years of age because of the multiple health disadvantages they face. The Lisbon Strategy included a target of adding two healthy life years across the EU by 2020, a target that still needs to be met.

Europe is facing important health threats which must become a top priority for this Commission. Our precious, life-saving antibiotics are declining in effectiveness. Antimicrobial resistance is taking hold more rapidly around the world than expected. No single country can tackle that challenge alone. Bacteria and drug resistance cannot be stopped by borders. The alternative if we fail to act is unimaginable: 10 million deaths globally every year by 2050[2]. Rich countries will not be immune. Those of us from countries which take high quality healthcare systems for granted arguably have the most to lose.

National governments were expecting, and calling for, European Commission support in the form of a chronic disease strategy. The majority of Member States want more EU action for health, especially disease prevention and support to increase the safety, quality and efficiency of care, to aid their own efforts to make their health systems more sustainable.

Common challenges to Europe’s health systems require common action

National governments remain responsible for their health systems, but European health systems face common challenges – a necessary shift from disease-focused, hospital-centred care to person-centred, long-term chronic disease management where patients, families and communities play a key role.

Member States thus need cross-border support, in the form of expertise, coordination, exchange of data, evidence and best practices, and programme financing.

National governments cannot address the threats to health and health services alone. We face common challenges from drug-resistant infections, spikes in chronic diseases, obesity, alcohol-related harm, infectious diseases, emerging technologies, rising prices of medicines, and inequities in access to healthcare, that can be tackled together far more effectively.

Looking ahead: Commit to Health and Sustainable Development

Looking ahead, the EU must not shy away from stronger engagement in the field of health. On the contrary, the challenges we are facing and the opportunity to continue demonstrating to European citizens the added value of the EU action on health, compels health to become a EU flagship policy that promotes stronger protection for patients and consumers and ultimately improves people’s lives.

If the EU steps back from protecting patients and consumers and improving our health it would irreparably damage the institutions’ credibility and trustworthiness.

Therefore, a strong future Health Programme is crucial, not least to ensure that voices from civil society – patients, consumers, health professionals, epidemiologists and technical experts – are represented in policy dialogues which build on all available evidence and expertise.

For this we need strong high-level leadership inside the Commission, with specific responsibility for health. Mainstreaming health in other Commission Directorates will not work without stimulus, guidance, knowledge, expertise, and leadership from a strong Directorate for Health.

This is evidenced by recent developments on the Digital Health Agenda, and the symbiotic relationship between DG SANTÉ and DG CONNECT. Other EU policies will be jeopardised without an appropriate health policy lens. Efforts around the Social Pillar and the European Solidarity Corps are not replacements for health leadership within the Commission but rather, should be highly complementary measures to ensure maximum impact on the ground.

The EU has committed to deliver the UN Sustainable Development Goals both within the EU and globally, with a key goal on health.

Health is also high on the international policy agenda – the G20 under Germany’s leadership is discussing antibiotic resistance. This is because health and access to good quality healthcare and social care are primary concerns for everyone. Yet international institutions lack the mechanisms for real implementation that make a difference to people’s daily lives.

This makes the EU’s role – and the necessity to do more, not less – absolutely key. This also requires health leadership and expertise within the Commission working in concert with the health community.

In conclusion:

We call for an enhanced EU action in the field of health that brings the EU closer to its citizens, by protecting patients and consumers and improving people’s health. We call for a EU action on health that fosters cross-country collaboration, integrates the action of Member States and helps them to address the unprecedented challenges we are facing. We call for EU action on health supported by a robust EU Health Programme and the leadership of a dedicated Directorate in the European Commission.

We request a meeting with you at your earliest convenience to explore these issues in more detail and agree a viable way forward.

Yours sincerely,

Archie Turnbull, President, European Public Health Alliance

Marco Greco, President, European Patients’ Forum

SIGNING ORGANISATIONS (in alphabetical order)

Alzheimer Europe ⧫ Association Internationale de la Mutualité ⧫ European Alcohol Policy Alliance (Eurocare) ⧫ European Alliance of Neuromuscular Disorders Associations (EAMDA) ⧫ European Association of Hospital Pharmacists (EAHP) ⧫ European Association for the Study of the Liver (EASL) ⧫ European Cancer Leagues (ECL) ⧫ European CanCer Organisation (ECCO) ⧫ European Cancer Patient Coalition (ECPC) ⧫ European COPD Coalition (ECC) ⧫ European Disability Forum (EDF) ⧫ European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) ⧫ European Federation of Families of People with Mental Illness (EUFAMI) ⧫ European Federation of National Organisations Working with the Homeless (FEANTSA) ⧫ European Federation of Salaried Doctors (FEMS) ⧫ European Health Management Association (EHMA) ⧫ European Haemophilia Consortium (EHC) ⧫ European Institute for Women’s Health (EIWH) ⧫ European Liver Patients’ Association (ELPA) ⧫ European Multiple Sclerosis Platform (EMSP) ⧫ European Network of Fibromyalgia Associations (ENFA) ⧫ European Network for Smoking and Tobacco Prevention (ENSP) ⧫ European Parkinson’s Disease Association (EPDA) ⧫ European Partnership for Improving Health, Equity & Wellbeing (Eurohealthnet) ⧫ European Patients Forum (EPF) ⧫ European Public Health Alliance (EPHA) ⧫ European Umbrella Organisation for Psoriasis Movements (EUROPSO) ⧫ Fertility Europe ⧫ France Assos Santé ⧫ Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN Europe) ⧫ Health Action International (HAI) ⧫ International Federation for Spina Bifida and Hydrocephalus (IF) ⧫ Lung Cancer Europe ⧫ (LuCE) ⧫ Mental Health Europe (MHE) ⧫ Platform for International Cooperation on Undocumented Migrants (PICUM) ⧫ Rare Diseases Europe (Eurordis) ⧫ Retina International ⧫ Royal College of Physicians (RCP London) ⧫ Smoke Free Partnership (SFP)

And lots of activity ties in well with “Kick Lupus” of course 😉 For more information on Kick Lupus please read here.

There have been so many initiatives for World Lupus Day it’s difficult to name them all but here are a few that deserve to be highlighted.

The World Lupus Federation, of which LUPUS EUROPE is a founding member, has released an e-report and a press release entitled “Inactivity, Isolation and Impact on Daily Life are Top Concerns for People Living with Lupus.”

Our LUPUS EUROPE Vice-chair, Anne Charlet, has also been interviewed by Neovacs in France. Neovacs has released a press release for World Lupus Day. Together they have also created a series of four videos on various topics. One of the videos features Anne’s wonderful daughter who was kind enough to share her experience as a young lupus patient. The video links are below.

Testimonial – A young person living with lupus

What is lupus?

The role of patient organisations

The importance of clinical trials

And of course, watch out for our awareness campaign, running all this month on Facebook and twitter. Feel free to share (many of our members have also translated the campaign into other languages).

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10th of May is #WorldLupusDay and for that occasion #LUPUSEUROPE in cooperation with #LUPUSUK has created a campaign for every day in the month of May. Please feel free to share with everybody you know!

In the build up to World Lupus Day, look out for our info-messages on Facebook and Twitter.

Here are the first two.

From April 10th-11th EPF held its annual AGM. Katharine Wheeler attended on behalf of LUPUS EUROPE.

Naturally, in the year of EPF’s campaign on Access to Healthcare, there was a strong focus on the #Access2030 campaign and putting healthcare firmly back on every politician’s agenda.

A noteworthy result of EPF’s survey on Access to healthcare is the fact that 60% of respondents experience financial hardship as a result of accessing healthcare. A result that won’t be a surprise to anyone affected by a chronic condition.

“I refuse to be considered a second-class citizen or a cost, my care is not a cost, it’s an investment.” – Marco Greco, EPF President

For more on the #Access2030 campaign, please click here.

“2017 is a pivotal year – now that we have seats at the table, need to ensure enough patient advocates!” – Marco Greco, EPF president

Seven patient groups applied for EPF membership. BAG Selbsthilfe (German patient self-help group umbrella), the European Congenital Heart Disease Organisation, the Swedish National coalition (HSO Handikappförbunden, and the NCDP – Greek National confederation of Disabled people (not the official English name) were approved as full members. Due to a late application, the Spanish platform for patient organisations (Platforma de Organizaciones de Pacientes) was granted provisional membership.

AGORA (platform representing patient organizations of people with Rheumatic and Musculoskeletal Diseases (RMDs) in Southern Europe) and LuCE – Lung cancer Europe were approved as associate members.

Eight candidates put forward their applications as board members. Four positions were available. Marco Greco, Radu Ganescu and Stanimar Hasardjiev were re-elected while Hilkka Härkkäinen was newly elected. Robert Johnstone, a long-standing board member and well-known to many stood down. He was thanked warmly by the board and members for his years of service in patient advocacy. As someone whose comittment and good humour never wavered, he will no doubt be sorely missed.

A record number of Patient Organisations attended the AGM (the highest number yet), and many fruitful discussions were had on subjects such as Access, the complexity of research and clinical trials, the interest of data collection and volunteer recruitment – to name but a few. Work groups also discussed Access, Empowerment, Sustainable Patient Organisations and Governance.

“If each patient is a drop of water, together, we are the sea” – Marco Greco, EPF President

As part of the EPF #Access2030 campaign a petition has been created to ensure that decision-makers are aware of how important people feel healthcare is and that we want it to remain very firmly on the agenda.

To read more about the petition and to sign, please click here.

CNN has highlighted lupus and celebrities who have lupus. You can read the article here.

Since his amazing feat Andreas has been busy recovering and getting back to normal life, but he hasn’t forgotten about his lupus supporters and has been working on his final article, telling us all about his fantastic achievement.

Lupus New York Marathon Finisher – 06.11.2016

For Lupus Warriors, Lupus Heros, Lupus Scientists, Lupus Family, Lupus Friends, Lupus Supporters. It’s done. We did it. I still remember vividly when the campaign started back in April last year (2016). It seemed a long way and really it was, with many great moments and obstacles.  One thing is for sure, “Whatever the mind can conceive and believe, it can achieve” as Napoleon Hill once said.

Reflecting back on the objectives of the campaign to:

1. Connect Lupus patients across Europe and
2. Spread disease awareness

I believe there has was great collaboration in achieving them. The idea of dedicating a week of my training to each country member of Lupus Europe brought people who had never met before together, for one cause – to cheer up the guy who runs for Lupus. Also, I will never forget the voices of spectators during the marathon reading my t-shirt’s front message: “Running for Lupus” and the thousands of people who reached out through digital and social media.

After overcoming expected and unexpected difficulties, I decided to keep my mind sane throughout the run by dedicating each mile of the 26 to each country member of Lupus Europe as you can see on the back of my t-shirt. Below, I unfold the journey from beginning of the race towards the finish line.

Starting line

It all began on Staten Island, in Fort Wadsworth, at the Verrazano Bridge. Right before the starter pistol’s shot, US anthem was played on a very loud speaker. On the silence of crowd I realized I was really doing it! Lot’s of thoughts passed by my mind and it got emotional. But immediately I emptied my head to save valuable energy I needed for the next 5 hours.

1st mile- for Denmark

First mile is an uphill climb towards the middle of the Verrazano bridge, highest elevation point of the race. It was windy and the adrenaline at it’s highest. Great view in the distance to the left of the Manhattan skyline. I felt unstoppable and ready to take over the 5 boroughs of New York City.

2nd mile- for Estonia

After a long run uphill in the opening mile of the New York City Marathon, Mile 2 is a downhill joy ride that leads to Brooklyn. Here I experienced the first glimpse of spectators, a small number of them, high above on an overpass.

3rd mile- for Finland

Here the crowds were growing thicker and thicker. As the volume of spectators rose the noise and cheers increased too. Amazing initial feeling that put my attention in enjoying the moment and away from running.

4th mile- for Cyprus

As I was approaching the 4th mile I was looking around to find 2 special people who came to support me in this challenge. We made a plan to meet in every 4th mile. I will be running and they will be using the subway to get into the next meeting point. However, we didn’t agree on which side to look for them -left or right? We never thought the roads would be so packed and big. I chose the right side which gave me 50% chance to see them – running in the middle wouldn’t make sense because it was too far from the spectators.

5th mile- for France

As I was about to complete mile 4 I saw them on the right with all their supporting gear shouting my name. How can someone not feel emotional at that moment? I got so much energy after seeing my people, again I forgot I was running and started enjoying the moment and start thinking that soon I would be seeing them again. Currently, I was on Fourth Avenue for a lengthy 5km straight run.

6th mile- for Germany

I have to say I was enjoying the run more than I was expected. During the 6th mile I needed a break – a bio break (fancy way to say urinate). Good thing that along the course, toilets are located in every mile. We got strict instructions from the organizer who had the right to disqualify anyone who urinates anywhere except in the supplied toilets. I ended up spending around 5 minutes there because I had to queue.

7th mile- for Greece

One of the things I enjoyed the most during the run were the bands on stages built on the sidelines just for the marathon playing all sort of different music. In fact, 130 musical acts – an average of five per mile – were set to motivate us and entertain the millions of spectators. One of the songs I enjoyed the most was Y.M.C.A. by Village People. You should have seen us running and dancing at the same time in which we used the arms to spell out the four letters of the song’s title. It was great for 2 reasons – encouragement and opportunity to stretch.

8th mile- for Hungary

I was very happy when I finished mile 7 because I knew that soon I would be seeing my people again- I just had to complete this mile. I have been seeing a lot of runners meeting with friends and family and I was also looking to that moment too. During this mile it was the first time I had some water. I thought it was about time to hydrate myself.

9th mile- for Italy

When I was entering mile 9 I was very excited for 2 reasons. First, my people should be somewhere there and second I would be running for Italy in this mile, one of the countries that gave me so much energy during my training. I owed them a lot. And here I identified my supporters 50 meters away and ran towards them. This time though, I stopped and hugged them. It was very important for me. The energy I got from that boosted me.

10th mile- for Netherlands

In mile 10 the path got narrower, on a one-way road, adding a sense of intimacy and the illusion of moving faster. It was a good time to check my pace, to start thinking about my time and how I was performing. Half-way my training I stopped using earbuds and just had the phone on loud speaker telling me the metrics – distance, duration, speed – and based on those I was adapting my run per kilometer. However, during this run there were 2 problems that didn’t allow me to follow my training tactics. First, I couldn’t hear my phone at all – it’s like it was not working. I was hoping it didn’t pause and miss all the analytics of the app. The crowd was so loud there was no way to hear it. Second, I had never run a marathon before and didn’t have any comparison on how well I was doing. All in all, I was running blind on performance following though my initial goal to enjoy the marathon.

11th mile- for Norway

Upon entering Mile 11, the crowd started to thin again. In the meantime, my stamina was knocking at the door. I realised I had still so long to go, but already had signs of running out of fuel. Perhaps the 2 pastries I had in the morning got burned already! But I was prepared. During the marathon EXPO few days ago, I bought 2 energy gels that I planned to use on mile 10 and mile 20. So I enjoyed my energy gel and got some water.

12th mile- for Belgium

As the energy gel started doing its job – getting absorbed into my bloodstream as glucose – I was enjoying the crowd and spectators who each had a story to tell with their bright colors or crazy hats, or flashy signs. It was funny and entertaining to see lots of signs criticizing the presidential elections which were to take place 2 days after. While all these thoughts were in my head I reached out to a kid who was holding a high five sign with the text: ‘Touch here for power’. It did energise me. Thank you. And that was the start of me giving high-fives – I probably touched more than 100 of the spectators after this.

13th mile- for Portugal

After completing the 12th mile and as I was about to enter the 13th mile, I started looking on my right to find those 2 special fans that came to support me and make sure I keep sane! Through the whole mile I couldn’t find them. Lots of things went through my mind, had I passed by them already? Are they a bit farther from here? Did they not make it in time? Had they left because I was too slow and the time we agreed had already passed?

14th mile- for Slovakia

I completed mile 13 and I was sure I missed them so I started focusing on the race again. Either way, I was just entering the Pulaski Bridge, which connects Brooklyn and Queens and there are no spectators there. Exciting times, Brooklyn was about to be completed and new borough is on it’s way – just 3 boroughs to go: Queens, the Bronx and Manhattan. But that was not the only thing that powered me – a big milestone has been achieved – HALF MARATHON. I was so excited but worried at the same time. That’s the longest I had ever run during my training and everything so far looked normal. Because of injuries I was not able to complete my training. Ahead of me there were 13 miles of unchartered waters. I was optimistic.

15th mile- for Sweden

After running a nice and easy decline into Queens and meeting the crowd who welcomed us to their borough I started feeling a drop in temperature. Perhaps the sun was hidden behind the buildings or I was already using all my energy to keep me going rather than warming me up. I was not sure if that has been ever been proven scientifically but that was not the best time to focus my attention on it.

16th mile- for Spain

I started experiencing the emotional test of the marathon, but it was too early. It came at the most difficult location in the the race – from what I had been told. The 16th mile is considered as one of the most pivotal points of the marathon because it seems like an endless hill, there are no spectators and your legs start to ache. During my commute to the starting line I overheard other runners claiming many give up there. It was pretty clear what they were saying. I didn’t want to be one of them, but I did walk for a few meters. As the climb up completed and the descent began, I was more confident than ever. I was almost there, getting into Manhattan. Good bye Queens.

17th mile- for Switzerland

I have to admit the spectators here were absolutely amazing. I already had 17 miles in my legs but the welcome we received in Manhattan made me forget all the challenges – mental and physical. I was looking for my biggest fans but my hopes were in vain that time, it was clear we hadn’t planned appropriately. All I was focusing on at this point was enjoying Manhattan.

18th mile- for United Kingdom

And here we are, just a single digit away from passing by the finishing line, packed with spectators on the sidewalks of the Upper East Side. The only thing that kept me going at this point were two things. First, the reminders of all the support messages I had got during the campaign from all of Lupus Europe’s member countries and second the push from the loud noise of the fans. One thing I remember vividly was a lady spectator I made eye contact with, who was shouting the text on my t-shirt – Running for Lupus. To be fair many did exactly that, but this time was different. This time, I realised the importance of completing the marathon and the impact this gesture can bring to people who are living with the disease. Thank you random lady, thank you for pushing me.

19th mile- for Iceland

Another difficult mile, I was a wreck. At that time, I was wondering how my lupus would react. I had experienced some symptoms during my training but then I had time to rest and recover.  I was thinking I might upset my lupus and get a bad reaction, but I was hoping that would happen after the race, after I had finished, after I had proven to lupus that it had already been well and truly kicked.

20th mile- for Ireland

At the end of this last mile, I said goodbye to Manhattan for a short while – just a mile and something – to take over the last borough of New York City – The Bronx. I found this borough interesting because of the many turns that kept my mind busy, but also because the crowd was different, more hipster style. Despite all these, my energy levels hit a low again and it was time for my second and last energy gel.

21st mile- for Israel

Another interesting thing that happened in this borough was the spectators willingness to give treats to the marathoners. So many of them offering all sorts of muffins, croissants, sweet dumplings etc. I couldn’t resist, even though I don’t remember the last time I had a sweet. So, as I was running towards a nice lady who was offering tasteful treats and as soon as I raised my hand to grab one of those delicious muffins, a guy hit me from behind. Obviously my mistake. I thought the world was mine and I didn’t even look behind me! The result was to miss that treat, but luckily few meters farther there was another person offering sweets! Of course I had some. Perhaps the most enjoyable treat I had in my life. I was so hungry.

22nd mile- for Romania

In mile 22 I was entering Manhattan again. I realised I had five miles to go – I couldn’t believe it.  The crowds must have been more on the streets more than 3 hours supporting us by now. Hats off to them. That dose of support can lift the spirits of any marathoners whose bodies are beginning to cry, “Enough!”. Interestingly, my lupus hadn’t even knocked on my door so far. It must have been enjoying the nice race too!

23rd mile- for Lithuania

During this long run on 5th avenue I started feeling a bit cold. This may sound strange since I had been running for so long. Again my sugar levels hit rock bottom. I was desperately looking for energy. The Organizers didn’t disappoint me. A great source of quick-acting carbohydrates was served at the water stations – Bananas.

24th mile- for Slovenia

Funny thing this marathon. We try to do everything right – the long runs, the speed workouts, the stretching – yet nothing fully prepares us for the physical punishment and emotional test of raceday. 5 km to go and my muscles were screaming. Not only that, this mile is almost entirely uphill. One thing is in mind though, where the heck are my 2 fans, the last time I saw them was 16 miles ago. I hoped they would manage to be at the finish line. But I had another 30 minutes to go. Would they be worried?

25th mile – Lupus patients all over the world

The most sought for time came to be. I entered Central Park. To be honest I couldn’t believe it. I was so tired, I had so much pain in my gastrocnemius. I walked for 20 meters. But I had more pain in my muscles when walking so I started running again, very slowly. This mile was dedicated to all the 5million lupus patients around the world. I couldn’t disappoint them. I was almost there. But this mile looked like a never ending one. I was screaming inside.

26th mile & 385 yards – Friends, Family and supporters of Lupus

Another mile and something to go. Still endless, still no energy, still pain. But screaming crowds gave me that extra energy to keep going. I thought the last mile would be the easiest because of the enthusiasm and adrenaline. But no. the first km of the last mile was a nightmare. But as I was fighting to keep running I saw the finish line, maybe 200 meters away and I was rejuvenated. I start running so fast, maybe the fastest pace I had during the whole run. I was so happy. I was in heaven. And there, FINISH LINE.

Αcknowledgments

Katharine – always there every week to review and publish my articles

Lupus Europe Trustees – who encouraged me, gave me courage, and on top of all that, opened their hearts

Alain – who supported my initial idea to partner and become an advocate of Lupus Europe

Lupus Europe Members – for supporting me every week during my training, for publishing articles, sharing their stories and allowing me to wear their flag. I couldn’t have made it without them for sure

Lupus Cyprus – my home country members never stopped supporting me, from day one of my diagnosis until today

Family and friends – you are the best

Next in the line we have a new Hero running for Lupus – check Marisa Costa https://lupus-europe-blog.org/2017/02/23/meet-marisa-from-portugal/

On Jan 20^th, in Paris, the Organization for Economic Co-operation and Development (OECD) held a Forum on the Future of Health, with the tag line of “People at the Center”.  The Organization provides a setting where governments can compare policy experiences, seek answers to common problems, identify good practice and coordinate domestic and international policies.  Generally, the OECD is associated with business, trade unions, developing economies, so it was a very pleasant surprise to see the huge commitment the OECD made to patients and world health with this Forum.

“Over 500 participants representing civil society, patients, providers, policy makers, academics and industry came together to discuss key issues including: Harnessing digital technology and data to create proactive, people-centred systems; Caring for people with complex needs; The importance of measuring what matters to people and to patients.”

The speakers were from all around the globe, including health ministers, economists, …, and a few patient representatives.   It was a two-day meeting: the first day open to patient representatives.

Thanks to an invitation issued during an EPF conference on Patient Safety, LUPUS EUROPE was able to attend and was represented by Anne Charlet who went to listen and to learn, to meet and to tweet! Here is her report – previously published in our recent newsletter:

It was a full day of very high quality presentations and relevant questions and answer sessions.

My first impression was one of surprise as I slowly realized that absolutely every single talk had a patient-centric message:  Ask the patient, involve the patient, get patient reported outcomes, “doctors have to get off their pedestals and patients off their knees”!

The presentation that impressed me most was by Michael Porter, an economist and professor at the Harvard Business School.  He is not in favor of an incremental approach to developing and using patient reported indicators.  “The only definition of a successful health system is one that produces value for patients. We must establish global standard sets of outcomes, condition by condition. There is no excuse for inaction,” he said.

His economist’s approach, quantifying something that we often view as only qualitative, was fascinating.  He is a founder of the ICHOM project, which has as a goal to standardize outcome measures for key medical conditions, and thereby being able to truly show “success rates”.  I learned at this forum that they are just starting work on their first auto-immune disorder: Rheumatoid Arthritis.  For the moment, lupus is not in their plans, and as they are a non-profit organization and accept no funding from industry, they need to have a project funded first before they start work.  Something for the future?

There were many more excellent presentations.  The few patient representatives that were present seemed to be doing a lot of the tweeting, including myself: if you search on #Futureofhealth, you can read the tweets that went out over those days.

And to read a very good account of the day, look at Tessa Richards: Power to the people—via Paris Tessa Richards, British Medical Journal, blog entry here: http://blogs.bmj.com/bmj/2017/01/20/tessa-richards-power-to-the-people-via-paris/

Kirsten represents LUPUS EUROPE at ERN meeting in Vilnius

A chance to meet up – Aiste, Aldevina and Ingrida from the Lithuanian Lupus group with Kirsten

For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page.

From our recent newsflash:  On March 9th EU President of the European Commission, Jean-Claude Juncker, opened the third meeting and Kick-off of the European Reference Networks (ERNs) taking place in Vilnius, Lithuania.
Please see the short video presenting the concept of ERNs here .
European reference networks (ERNs) help professionals and centres of expertise in different countries to share knowledge. ERNs should:
– apply EU criteria to tackle rare diseases requiring specialised care
– serve as research and knowledge centres treating patients from other EU countries
– ensure the availability of treatment facilities where necessary
24 ERNs have been established, with LUPUS EUROPE the patient representative in the ReCONNet on rare and complex rheumatic diseases, along with, among others, Scleroderma and EURORDIS’ EPAG. For more information , please contact Kirsten.

For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page.

Monday 27th saw the official launch of EPF’s campaign on Access to Healthcare at the European Parliament. LUPUS EUROPE has been involved in the Working group for this project and the working group met on Tuesday to discuss Monday’s meeting and the next steps and the work which remains ahead. There is still a lot of work to do on this very important subject.

Photos from the kick off meeting at the parliament are visible on EPF’s facebook page here.

The following article is copied from EPF’s web page on the campaign.

Campaign on Access to Healthcare

From January 2017, EPF carries a flagship campaign on Access to Healthcare. This theme is a long standing priority for EPF and its membership, and is at the heart of the vision of the organisation.

Under the tagline ‘Universal Health Coverage For All’, the campaign is an opportunity to raise awareness about the barriers patients face in accessing healthcare, and to build on current political momentum – including the UN Sustainable Development Goals for health – to foster more EU cooperation on access to healthcare.

The EPF Working Group on Access drafted the following overarching strategic objective for the campaign:

“The EPF Access campaign will contribute to make universal access a reality for EU patients by 2030, through defining and promoting concrete actions, in concert with the health community, to which decision makers need to commit, to ensure we achieve the Health SDGs by 2030.”

EPF has used use its prior work on access to shape the messages of the campaign; in particular looking at the definition of access to healthcare, and the statement on pricing and reimbursement of innovative medicines.

Practical info

The one-year campaign will be officially launched on 27 February at the European Parliament, in Brussels. The event – co-hosted by MEP Kateřina Konečná (GUE/NGL, Czech Republic) and MEP Andrey Kovatchev (EPP, Bulgaria) – will be an opportunity to present the campaign and to discuss what actions should be taken to achieve Universal Health Coverage at European level.

Rationale – Why a campaign on access?

Disparities in access to healthcare predate the financial crisis in Europe, but against a background of austerity measures and falling healthcare spending in many Member States since 2009, inequalities have been made worse. Access to care is affected by austerity policies in response to the economic crisis, such as cuts in healthcare budgets and in insurance coverage, increased fees and co-payments, and cuts in social protection measures.

At the same time, healthcare systems are facing increasing demands as a result of demographic change. As the population ages, the number of patients with chronic diseases is growing. Patients who developed a chronic disease at a younger age are also living longer, thanks to modern medical treatments. Patients with chronic diseases develop specific needs which the healthcare systems need to adapt to.

Patients across the EU are reporting multiple barriers to access to healthcare, whether it’s not available, not adapted to needs, or not affordable. EU Member States need to overturn the current trends of short sighted decisions on investment in healthcare, and commit to realising universal access by 2030 by taking concrete steps. EU Member States need to achieve universal health coverage and improve access to healthcare by 2030 according to the UN Sustainable Development Goals.

Contact

If you have questions about the campaign, don’t hesitate to contact us!

• For policy-related content:

Katie Gallagher – Policy Adviser

• For dissemination/communication activities & material:

Laurent Louette – EPF Communications Officer

Sara Gayarre – EPF Communications Assistant