Can patient power make a difference in precision medicine?

At Diaceutics, we know our support for integrated diagnostic testing by pharma companies is inextricably linked to improving patients’ access to testing and the right targeted therapy. The basic premise of precision or personalized medicine is that people are tested at the proper time in the course of their treatment pathway so that the right drug can be identified and prescribed as early as possible. Earlier treatment is likely to be more beneficial and may also be more cost-effective.

Decisions on whether or not a drug is economically viable and can be made available for treatment are usually taken by payers and reimbursement agencies, but recent events suggest that patients increasingly have more knowledge around groundbreaking therapies and are starting to wield more influence when it comes to accessing precision medicine.

In the UK, the National Institute for Health and Care Excellence (NICE) is a statutory body that determines cost-effectiveness of treatments and tests offered by the National Health Service (NHS). Two patient-led petitions generated 270,000 signatures calling for NICE to change its recommendation on treatment for non-small cell lung cancer patients in England. In September 2017, NICE announced ‘lung cancer patients in England can now be prescribed nivolumab’ even though trials for this indication were not yet complete. NICE reached its decision following pricing discussions with the Cancer Drugs Fund (CDF) and it’s understood the drug would have been made available at a discount because the CDF ‘offers pharmaceutical companies (who price their products responsibly) a new fast-track route to NHS funding’. Such negotiations are nothing new, but what is of note here is that NICE appears to have reacted to the significant patient demands generated by the petitions.

Patients are becoming much more actively involved in their own healthcare, whether that’s on a basic level through awareness of their lifestyle and diet choices or by actively researching the treatments and therapies available to push for the best outcomes in a particular disease. The successful result from the UK petitions suggests that a shift in the way patient power could affect precision medicine is underway.

Additionally, patients’ diagnostic health is emerging as a key factor in determining therapy choices. In the US, a new wave of patient advocacy seems to be on the rise, as groups like ALK Positive raise money directly for research into the biomarkers associated with their particular type of lung cancer. These groups want to be actively involved and informed regarding the decisions made about their treatment. They could become a formidable force not only to support themselves as they experience more rare and treatment-resistant diseases, but also to demand and fund research and diagnostic testing that affects them directly. In addition, the Cancer Breakthroughs 2020 initiative is making patients a part of any future debate around cancer treatment by supporting collaboration, engagement and involvement between patients and the cancer community that is ‘seeking to accelerate the potential of combination immunotherapy as the next generation standard of care in cancer patients.’

The development of precision medicine with treatments directed at the individual rather than a broad swathe of patients is energizing and involving those very patients the treatment is intended to reach and turning them into influential advocates. Treatment is ultimately about patients so not only is it encouraging to see their opinions being heard and their role in healthcare achieving positive outcomes, but it could also signal a new era where patients themselves find the power to access the diagnostic testing they need at the right time.

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