Home » Launch of the “Do more 4 ME – Be part of the MIGRAINE voice!” Campaign, to give a voice to people with migraines

Launch of the “Do more 4 ME – Be part of the MIGRAINE voice!” Campaign, to give a voice to people with migraines

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Launch of the “Do more 4 ME – Be part of the MIGRAINE voice!” Campaign, to give a voice to people with migraines

A “silent protest” is underway these days. Visiting the Ara Pacis you will come across voiceless and faceless silhouettes. Who do they represent? The more than 6 million people in Italy who suffer from migraines, a disease that is still very underestimated. The new campaign starts from this protest “DoMore4Me – be part of the MIGRANE voice”Promoted by Lundbeck Italia, which invites attention to be kept high on these patients, promoting an evolution of the regulatory framework and their care, from early diagnosis to treatment pathways. The event is silent because the noise has an enormous weight for those who live with migraines. In the silence of the silhouettes, however, we must find their cries, represented by the phrases they hold in their hands. And we have to imagine the peace that they do not find because of the disease. The absence of faces also has a meaning: it symbolizes unseen suffering. Loneliness is one of the feelings most often reported by people with migraines.

The DOMore4MegrainE campaign!

The DOMore4MegrainE campaign! was presented in an event in Rome on 13 September (you can see it on YouTube, at this link) and its goal is to tell the migraine in an emotional and experiential way, to make it understand the physical, psychological, social and functional. This is why, immediately after the protest, an experiential path opens up to “experience” some of the most characteristic symptoms – such as pain triggered by normally non-annoying sounds (phonophobia) or light (photophobia) – and to understand what it means to live with migraine. Everyone can help raise the volume of this campaign. How? By sharing hashtags via social media #doMore4Me, #bePartOfMigraineVoice e #migraineto take sides with those who live with the disease.

A half law

DOMore4MegrainE! starts two years after the approval of the bill which recognizes chronic primary headache as a social disease (Law 81 of 14 July 2020): an important milestone for patients, long-awaited. Too bad that the implementing decree of the Ministry of Health is still missing (which should have been implemented within 180 days). An indispensable step to experiment with innovative methods of taking charge and to regulate any exemptions for drugs and the possibility of being absent from the workplace. Suffice it to say that, according to the estimates of the Istituto Superiore di Sanità, each patient loses on average 4 days of work every 3 months due to migraines.

“Chronic migraine is a disabling disease: it is the leading cause of disability in the female population under 50”, he recalled Giorgio Palù, President of the Italian Medicines Agency (AIFA), at the opening of the conference: “Its management is also a mission of the Agency. Today modern medicine looks as much at genetic determinism as at the psychological and social determinants that are often a cause direct etiology of diseases. We need to move in both directions, and institutions must also take into account the impact of migraines on society. I hope that the path started on the recognition of migraine as a social disease will be resumed and that investments in research will be made, because our country needs to renew its pharmaceutical industry ”.

There are no routes to take charge

For the correct management of migraine patients, first of all, there is a lack of management paths. Too many come to the diagnosis after doing unnecessary tests, such as MRI scans, and after trying inappropriate treatments. “Early diagnosis, which can avoid chronicity and the excessive use of symptomatic drugs, remains a problem today”, confirms Fabrizio VernieriHead of Headache and Neurology of the Campus Bio-Medico in Rome: “For this, interventions are necessary to this. Not only that: new therapeutic options are available, such as monoclonal antibodies, which have revolutionized the treatment of migraine and which can allow optimization of patient treatment. However, they do not always allow for optimal treatment. Some patients show delayed benefit, more than three months after starting therapy, and there is a percentage that does not respond satisfactorily. This is why new effective alternatives are needed ”.

The economic impact of migraines

What is the economic impact of improper management of chronic migraine? “It is around 20 billion euros per year, 10% relates to direct costs, while 90% relates to indirect and social costs”, he replies Francesco Mennini, President of SIHTA (Italian Society of Health Technology Assessment): “This should provide the motivation for politics and institutions to take action, making decisions on the care model and on the resources to be allocated to adequate care paths and early patient care. If not dealt with in time and with adequate therapies, this pathology will determine a further increase in costs and in the years lived with disabilities, with negative consequences for the welfare system, for patients and caregivers “.

Don’t say “it’s just a headache”

But how is it possible that as many as six million people fail to make their voices heard? “Awareness of migraine as a high-impact disease needs to be raised with determination,” he stresses Lara Merighi, lay coordinator of the Cephalalgia Alliance Association – AI.Ce. Group Italia: “We patients feel invisible sick. We live in constant fear of an attack, which can also be triggered by a simple perfume, but not only. We live in fear of being seen as a category of ‘listless’ or fragile people. We ask that the implementing decree of law 81 be issued and that migraine be included among the Lea. Furthermore, we need psychological support, to receive the right understanding and learn to manage the most complex moments ”. Very practically, “it is necessary to strengthen the diagnostic and treatment centers throughout the territory; increase the training of general practitioners, so that they signal the disease; guarantee access to even the most innovative therapies, capable not only of intervening more effectively, but often also of preventing symptoms “, he adds Maria Vitale of the Civic Evaluation Agency of Cittadinanzattiva.

Giulia’s story

Giulia, a 19-year-old girl who has just graduated from high school with a good 100, tells the story of the daily difficulties of those living with migraines. simple. Giulia, in fact, had her first attacks when she was just 8. “The elementary school teachers didn’t believe me, no one told me I had an illness”, she explains: “I was cataloged as an overly anxious child, and this it generated in me a great sense of guilt. I hid the pain I felt for a long time, as long as I could. In high school, however, I started having severe crises in the classroom. It is difficult to explain what it means to have aura and not be able to read, the pangs, the temples that go up in flames. Migraine is a disease that makes you feel very lonely and its impact is still greatly underestimated ”.

The intervention of the Hon.  Giuditta Pini

The intervention of the Hon. Giuditta Pini

The role of politics

Now that the elections for a new government are approaching, the request to implement the law for the recognition of chronic primary headache as a social disease. The process was long and has already gone through three legislatures. “The initial attempt was to include headache and migraine recognition within the LEA, but the few supporting data and costs for the NHS prevented this from being achieved,” explains’ On. Giuditta Pini, promoter and signatory in 2020 of the bill on chronic headache: “Following the approval of the law, the response that the Ministry gave was absolutely contrary to the same favorable opinion that the same Ministry had initially expressed on the same law during the last term. A politically and technically incorrect answer. This is a theme that will inevitably have to be discussed in the next legislature ”.

“We renew the political commitment to migraine”, assures Hon. Fabiola Bologna: “We are evaluating the possibility of identifying new methods of taking care of people suffering from migraine in the context of the LEA, to also ensure the financial provision not envisaged by law 81. A greater involvement of family doctors and of the service pharmacies which, thanks to the capillarity in the territory, can play a strategic role in suggesting a consultation with a specialist. The goal is to take the field with as many concrete actions as possible to face the suffering linked to migraine and its impact on everyday life ”.

DoMore4ME’s exceptional testimonial is the former health minister Beatrice Lorenzin, who intervened at the end of the conference as a person with migraine. “Reconciling political commitments with the disease was not easy – he says -” We must continue to work on two fronts: remove the stigma and not make people feel in difficulty or deficiency because they suffer from cluster headaches or migraines and it is necessary to reclaim the things we gave the law for. Bring the implementation of all aspects of the law into the lives of citizens. This will be our task in the next legislature ”.

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