Monthly Archives: January 2017

A Training Day at European Medicines Agency – EPF Youth Group

Lembe Kullamaa, Member of EPF Youth Group took part in November 2016 in a European Medicines Agency (EMA)’s training directed to patients and consumers. She tells us more about this interesting and useful experience.

This has been one of the most interesting training sessions that I have attended. It lasted one day and was very action-packed. The day started with the introduction of how medicines are evaluated in Europe and how their safety is monitored. The EMA is a European Union agency that is responsible for the scientific evaluation and supervision of human and veterinary medicines that are developed for the EU market. They also provide scientific advice on the development process on request from pharmaceutical companies.

EMA has many opportunities to involve patients and consumers in the medicines’ approval process, even from the beginning. The whole training was very hands-on and involved real examples where patients can provide their knowledge to improve the process. Patients have been involved with EMA since the founding of the organisation.

For example, we can participate in scientific advice and protocol assistance procedures that take place pre-submission, we can participate in working groups, and we can respond to consultations and review information on medicines during evaluation and post-authorisation. During the training I attended, we worked through the whole process using real examples and discussing many aspects that are considered in the medicine evaluation process.

In conclusion, patients are very valued part of medicines’ evaluation and approval process and it is fantastic to see that EMA is using this very valued resource with their unique knowledge and input.

EPF VIDEO – Our Members, Our Compass!

The feedback from our members is the backbone of our work. The new EPF video will tell you all about our consultation processes, and how we can support our members growing, for better patient advocacy in the EU.

The short and animated video explains in just 2 minutes the special relationship EPF has with its members. Their feedback is vital to us; our work and credibility rely on it. The video illustrates the democratic consultative processes we use to collect our members’ concerns, comments and use them as our baseline for our policy positions and advocacy work. It ensures our message is strong and representative of our membership. It is the backbone of our work.

The video also develops on the benefits of being a member of EPF. Demonstrating that by sharing their expertise, our members enable us to influence decision makers in Brussels, giving their concerns a clear voice to play a central role in shaping European policies.

Have a look here on our YouTube channel and on our other social media handles. Like it, leave a comment and share it amongst your network!

 

Contact person:

Laurent Louette, laurent.louette@eu-patient.eu

OPINION – French Presidential Election 2017: 5 Key Topics for Access to Healthcare

Public health does not usually play a big role in the French political debates. But this year might be different. Our French member LE CISS tells us why in an opinion letter, ahead of the general elections in France.

 

No one can deny our health system needs a change. The current situation makes the re-thinking of our healthcare system a necessity and could put this issue higher than usual on the agenda of the French presidential election (April 23 and May 7).

The French platform of patients’ and users’ organizations (Le CISS) has decided to avoid the debate around the privatisation of the healthcare funding system – which a vast majority of French citizens rejects – and to raise awareness on 5 fundamental issues that will in our opinion configure the access to quality care for the next few years:

  1. The issue of “Medical deserts” and the need for a better geographical distribution of healthcare professionals – especially physicians – throughout the country.
  2. The part of health care costs that patients have to pay out-of-pocket and the gaps in the French reimbursement system.
  3. The appropriateness of care and the need to avoid unnecessary treatments, facilitating a better allocation of resources, and a better coverage of poorly reimbursed care.
  4. The pricing of innovative medicines, and how public resources dedicated to health shall fund and promote actual therapeutic innovation.
  5. Public health promotion: improving prevention and health education in order to reach the populations at the “outskirts” of the health system, to contribute to the reduction of health inequalities and to avoid the stigmatisation of behaviours considered as harmful.

For each of these topics the CISS has produced a fact sheet depicting the situation analysis, the CISS proposals and putting questions to the candidates running for France presidency.

These fact sheets will be sent to each candidate, and widely distributed in our networks as well as to a greater audience, starting on January 31, when the name of the official candidates will be made public. We will publish the candidates’ answers in March ­– every Wednesday will be dedicated to a different question – to inform voters on the candidates’ plans with respect to the 5 priorities we identified.

From the end of January, this whole initiative called “Objectif Présidentielles 2017 ” will be online on our website www.66millionsdimpatients.org, and we will encourage users to support our awareness campaign and relay our questions to the candidates – with the hashtag #PaieTaPolitiqueSanté – so that the candidates’ health projects can become a key element for voters.

Marc Morel, LE CISS Director.

 

Contact person:

Marc Paris, Communications Officer, mparis@leciss.org

Living with Auto-Immune Diseases: A Patient Testimonial

Read here the very eye-opening testimonial from Katharine Wheeler, from LUPUS Europe, on the importance of patients’ feedback in diagnosis.

 

I have a collection of auto-immune diagnoses, one of them is life-threatening without treatment.

Very often the medical profession does not expect, or even accept, that we may not have only one diagnosis. GPs have rarely come across those more complex cases, and sometimes the GP is the person providing access to specialists.

The first disease I was diagnosed with is complex in itself. It can manifest in a variety of ways and is known as the great imitator. Because of this it can be blamed for everything. This was what happened to me.

In order to treat my disease, I was put on cortisone but every time I tried to reduce my doses to minimise side effects some of my symptoms returned quite severely. Despite that, I listened to my doctors and I ended eliminating cortisone from my medication… but I knew that something was wrong, that my disease must be flaring and that life was simply impossible.

I went through about 18 months of extreme exhaustion. A period where I was sleeping far too many hours in a day, where my life fell apart, where I lost money and rights in terms of social support because I was unable to fight a decision I knew to be wrong. My husband lost his wife, my children lost their mother… and the only answers I got from the specialist was that I should “discipline” myself to only sleep a half hour in an afternoon, that I was oversleeping and harming myself.

Presumption is a very dangerous thing. Yes, I am a mother, but most mothers are not exhausted in the same way I was, and yes, being active was more difficult for me because of my joints but unlike many people I know, I forced myself to go walking every single day.

Another presumption concerns depression. I am fortunate not to suffer from depression but can occasionally feel down simply because I am so exhausted I cannot think or function.  I should not be presumed to be depressed because I say I am tired.

After a long time and after nearly giving up, one of my doctors finally decided to look for something that no-one had tried before. They hadn’t looked because the disease is very rare in its auto-immune form. They hadn’t looked because it is presumed that a person will only have one auto-immune/chronic disease. They hadn’t looked because the problem I was having was presumed to be due to the cortisone I had taken previously, a temporary situation that would resolve.

It didn’t resolve because it couldn’t. Because this new, rare disease had always been there, pre-dating my first diagnosis. It had been hidden by the cortisone I was taking, the cortisone that had, coincidentally, been treating it.

I was lucky that one of my doctors had introduced a tiny dose of another type of cortisone. The dose was very small and not enough to treat a person who has Addison’s disease and who doesn’t produce their own cortisone but it was enough to keep me alive, just.

Thankfully, despite the worsening of my symptoms, and the increasing lack of “life”, I got my diagnosis in time. Addison’s disease can, and does, have fatal consequences. It is manageable and treatable but it is incurable. Treatment is for life and treatment sustains life.

My GP recently had a young doctor studying with him. At the end of our consultation, he asked me if I had any advice to give this young doctor. My advice was: Never presume (either medically or in terms of what you “think” the patient is doing). Always envisage the unexpected. Always listen to the patient. Always “investigate”.

I think though, it is also important to remember that, although these situations are rarer, I am not alone. I know many people with chronic diseases where the complexity of their medical picture has led to similar problems. I am NOT an exception.