Two in 3 Americans haven’t heard the phrases “personalized medicine” or “precision medicine.”

When the concept of therapies tailored to individual patients is explained, most people like the idea of diagnostic tools that can identify biological markers and marry to personal medical records data to help determine medical treatments that best fit them.

This picture of U.S. consumers’ views on personalized medicine comes from a survey conducted for PMC, the Personalized Medicine Coalition, and GenomeWeb, published in May 2018.

The poll results are published in Public Perspectives on Personalized Medicine, with the top-line finding that life science industry innovators must better educate and inform consumers on the opportunities and benefits of personalized medicine. Two-thirds of Americans haven’t heard the words “personalized” or “precision” and “medicine” put together — and what the potent combination really means for them as patients.

This is important because in 2017, one in four new drugs approved by the FDA were designed to treat a small population, falling

into the precision medicine category.

It’s also important to realize that most consumers smartly intuit some of the key barriers and concerns that precision medicine could raise.

These concerns fall into the buckets of health insurance coverage, or lack thereof; insurance denials; affordability for the breakthrough therapies; and, potential risks of future denials for insurance based on the patient’s personalized genomic or other health data. On this point, only 10% of Americans were aware of GINA, the Genetic Information Nondiscrimination Act, which is in place to prevent employers or insurers from asking for genetic test results for employment and/or coverage decisions.

Most consumers believe that insurance companies “should” cover personalized tests and treatments.

Health Populi’s Hot Points:  While the concerns they note are very real, it is gratifying to see that patients, acting as health consumers, can divine some of the key concerns that precision/personalized medicine may engender. Cost, coverage, and privacy — together, this triple-threat is baked into the contemporary American health care consumer landscape.

The issue of privacy in healthcare is central to patients’ trust with providers and other stakeholders in their personal health/care ecosystems. An essay in Health Affairs speaks to Data Sharing For Precision Medicine: Policy Lessons and Future Directions, written by a team of researchers based in Zurich a the Swiss Federal Institute of Technology (ETH).

The team analyzed data-sharing guidelines across 230 policy documents published between 1996 and 2017. The third bar chart identifies the policy themes referenced in these data-sharing policies. Note that autonomy and privacy rank with the most mentions. They are certainly inter-related.

Autonomy refers to data subjects’ (patients’) informed consent as a precondition of collecting personal health information agreeing to further uses. Privacy points to patients’ fundamental right to it, balanced with data availability for research. U.S. consumers have grown increasingly aware of data privacy in both healthcare settings via HIPAA consent, along with the aftermath of the Facebook/Cambridge Analytica scenario (discussed here with healthcare implications in Health Populi).

Now revisit the second chart: this illustrates that most consumers have been paying attention either through their own personal healthcare consumption and experience, or know well of their loved ones’ or colleagues’ experience, for a majority of people to point to the worries of insurance coverage denials, employment problems due to personal health information breaches, or sticker-shock for medical treatments.

On this last point, financial toxicity is a well-known side-effect for patients facing cancer treatments, which I discussed in a recent post on IQVIA’s latest report into oncology therapy costs. Of the 14 new treatments launched and approved by the FDA in 2017, all were priced over $100,000 in the U.S., and the median reached $150,000.

We envision and hope that precision medicine will be a Holy Grail for people dealing with the toughest medical conditions. But in a resource-constrained health economy, the sooner the industry educates the public on the promise and value of breakthrough, personalized therapies along with the cost to develop them, the better for all stakeholders.

 

 

1 Comment on Personalized Medicine: Consumer Concerns About Coverage, Affordability and Privacy

John Jackson said : Guest Report 3 weeks ago

Jane, you are on track with the points you raise here on the challenges for patients and providers in precision medicine. Here at Stanford we are working directly with self-insured employers to try and remove some of those obstacles in terms of coverage and cost. We are not 100% there yet but I believe we are on the right track. For all this to work to patient benefit we need engaged employers, providers and patients. Look forward to your future research in this area. John Jackson, Executive Director, Corporate Health Programs

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