#EAPM: Battling disease can be even harder than you think

| October 31, 2016 | 0 Comments

affordable-healthcare-actPatients these days are striving to be able to make co-decisions with doctors about their own health care, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan. 

These patients (as well as the many millions of potential ones across the EU’s 28 member states) are becoming more-and-more aware of the options that are available to them.  Well, when they actually get to hear about them, that is…

Imagine that your doctor has given you a negative outlook regarding a cancer diagnosis. Obviously, this would come as a great shock and you’d probably want a second opinion at the very least.

It’s also more than likely that one of the first things you would do is turn to the internet for more information in the hope that there may be a cure out there somewhere, or at least some quality-of-life enhancing medicine available.

Perhaps you find a novel drug that might, just might, from what you’ve read and understood, cure your condition or at least extend the years you have left. But can you trust it? Who can you ask?  Your initial doctor is unlikely to be choice Number One. So you do more research and it turns out that the information on the web seems to be reliable. Unfortunately, more research tells you that the particular drug is extremely expensive and not on the cancer-drug list in your country of residence.

Even if it is on the list of approved cancer treatments, there is a possibility that your doctor will refuse to refer you. It happens often, it really does.  Yet more research reveals that a similar, and possibly better, medicine is about to go under clinical trial. The doctor will surely refer you for this – even though he or she didn’t seem to be aware of it initially (not uncommon, sadly).

So far so good…but you are in Rotterdam and the clinical trial is taking place in Berlin. However, you’ve heard and read about the cross-border health-care directive, which allows you to seek treatment in another member state if it is better than treatment available in your country of residence.

Again, that sounds good. That is until you factor in the costs of getting to Berlin and back on countless occasions, the time off work and the bureaucracy you will have to deal with to get accepted into the trial – all for something that may or may not cure you anyway.  And even if you figure all this out, you will probably need the back-up of a carer, possibly a family member, to travel with you and support you through what will undeniably be a situation of high stress.  But will your putative carer be given the time off work to assist you?  Not looking easy, is it? That’s because it isn’t.

And in the case of you living in a less-rich EU country and knowing for sure that there is radical new treatment taking place in, say, Paris, how can your poorer member state effectively reimburse at local rates when the French treatment rates are much higher? Again, can you afford it?  It doesn’t stop there. Let’s assume that you have exhausted all lines of enquiry, all tests, all possible treatments and are finally coming to terms with the fact that you will die sooner rather than later, and that all care is effectively palliative from here on in.  One thing you certainly want to do, and you’ve told everyone, is share your personal health data for the benefit of other patients suffering today and those that will come along in the future.

The trouble is, your disease is caused by a gene that is passed down to close family, and certain of your family members are unhappy that sharing your information may have an impact on their own privacy, their work and perhaps even their insurance policies.  Of course, data sharing is a minefield. The EAPM acknowledges that there are huge moral and ethical questions about collection, storage, sharing and use of these data.

Clearly this must be done within robust frameworks that protect the patient but absolutely must not frustrate the need for scientists to keep finding new disease cures and better drugs and treatments.

It is undeniable that researchers and industry all need information. And there’s no doubt that there are ever-more new ways of collecting it. But to put patients at the heart of the Big Data phenomenon, individuals, and especially those who share all that very private data about their health, should be in control of their own information, become empowered through it, and use it to help themselves and others when it comes to health.

EAPM subscribes to the credo of providing the right treatment to the right patient at the right time – essentially the best care available. And data sharing is absolutely vital in the research and development of new, potentially life-saving medicines.

Not only that, but the realistic, fair and equitable operation of cross-border healthcare, and the improvement in knowledge of front-line health-care professionals (alongside more information on clinical trials), need to be put in place so that every patient has the best treatment opportunities available across the EU, whether they are rich or poor and wherever they may reside.

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Category: A Frontpage, EU, European Alliance for Personalised Medicine, Health, Personalised medicine

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