“How much is my life worth?” Patricia Garcia-Prieto, professor of Organisational Behaviour at the Solvay Brussels School of Economics and Management and a mother of six and 11-year olds has asked this question multiple times. In her video, as a patient representative on a panel, she has been vocal about this thought that passed her mind every day. Patricia suffered from melanoma, a deadly skin cancer. Four of the five years, she was a stage IV melanoma patient.
There are around 84,000 new cases of melanoma each year in Europe, out of which 20,000 patients do not survive it. It is an eye-opening statistics but one that has driven medtech to innovate. Genetic testing, specifically personalised medicine, has made targeted treatments a new reality. In cases where melanoma has metastasized or cannot be removed surgically (unresectable), a companion diagnostic genetic test can identify individuals with a particular type of melanoma that may respond to therapy with the new drug.
Similar to an activist, Patricia Garcia-Prieto was on a quest for learning more about her disease and doing everything she can to stay alive. She looked up treatments, access to trials and vaccine studies. She dug up novel solutions current medicine could offer for her state. She was rejected many times, however, she fought on and finally got admitted to a trial study in another country. It was a road of never-ending meetings with oncologists, dermatologists, surgeons, radiologists and physiotherapists across multiple hospitals. And finally, after years of struggle she gained access to personalised therapy.
“I am alive thanks to personalised treatment – and my experience convinces me that the patient perspective has to be more closely integrated into the discussion of personalised medicine. The radical changes to healthcare that personalised medicine promises will happen only if patient involvement is given greater priority.”
By then, she had realised she’s the exception, and that for every person who gets a life-saving treatment there are hundreds who don’t. So she took it upon herself to raise awareness and facilitate discussions on access to life-saving treatments for patients such as her. She got involved in patient advocacy and became the patient co-founder of the European Alliance for Personalised Medicine.
So why are people denied access to personalised treatment? One of the main reasons is that the provision of treatment is looked upon as a cost rather than a way of giving patients additional productive years of life.
“I am a burden to the healthcare system,” Patricia stated. “I’ve estimated that I am worth 500,000 (euros) and counting. Is my life worth that? Is it worth it to extend lives like mine?” She asked herself, and us.
Personalised medicine is perceived as expensive, it has to be tailored to the individual patient and that is what increases costs. It is – to the least – frustrating to think of the number of deaths that can be avoided if an infrastructure is put in place to facilitate an environment for personalised medicine In many cases, this is linked to the drivers of all: money and organisational change. Innovative treatment and more efficient organisation for research are hindered, and even when potential treatment is available it is complicated to provide the access to those who can benefit from it the most.
“This situation deserves to be changed, so that personalised medicine is perceived not just in relation to costs, but as a way of giving patients additional productive life years.”
The expected decrease in cancer deaths from better survival rates, plus an expected increase in new cancer patients over the next decade, is just one aspect of the multiplying pressures on healthcare systems.
Personalised medicine, with its more predictive, personalised and pre-emptive approach, with close patient participation, described as P4 medicine, offers the hope of increasing effective treatment rates, reducing the impact of treatment on the risk of other illnesses, and positively impacting on the health economy, as well as on the quality of life of patients.
Patricia’s quest for personalised treatment is a demonstration of the conflicting demands involved in the approval, reimbursement and uptake of new drugs. This complicated web of regulators, bodies responsible for health technology assessment and reimbursement, payers, and doctors is very discouraging.
It can take up to several years for member states to make decisions on pricing and reimbursement. The current economic climate intensifies the trend, reducing still further the transparency that there should be in pricing and reimbursement of melanoma treatments. And patients (which may be family members, colleagues or friends) don’t have that kind of time to wait.
In July 2013, Patricia lost her battle with melanoma. She was 43.
Patricia’s life is a testament that time is of essence and change is desperately needed. We need to remember that the true value behind innovation, treatment, and research is life.
– Denis Horgan, Executive Director, European Association for Personalised Medicine