Let’s Keep Patient-Centered Solutions at the Forefront of Health Care Policies

Some policymakers are considering strategies for evaluating individual health and insurance coverage that would likely result in serious access restrictions to breakthrough treatments and stifle American innovation.

Comparative and cost-effectiveness analyses by third-party groups are a key component of socialized health care systems, often coming into play through binding arbitration. The use of such assessments to determine the value of treatments could significantly limit access to treatments not determined to have adequate “value” under these broad, population-level studies.

In an era of patient-centered, personalized medicine, resorting to such tools at the expense of the nation’s most vulnerable is inappropriate. It is extremely concerning to see numbers assigned to value, or worse, devalue the life of a person with a disability or chronic condition, particularly when that number could lead to rationed care.

The use of third-party groups to determine drug pricing has warranted negative responses from patient groups and individuals. Just look at the current situation in New York.

Its budget finalized a provision originally introduced in the Governor’s Executive Budget and similarly included in the State Assembly’s budget bill that explicitly codifies reliance on discriminatory metrics, such as the quality-adjusted life year, to determine cost of coverage and treatments for patients. While the state Senate fought for a budget provision that more closely reflected what patient groups are advocating, the final budget bill allows for discriminatory and biased value assessments. This has consequently put cost-effectiveness at the forefront of debate, even though this approach remains deeply undesirable and vastly opposed by more than 40 patient and disability groups across New York that understand how these discriminatory methods could take people out of the driver’s seat in managing their health and leading their lives.

Other countries have learned over time that these methods only create barriers for patient access. In the United Kingdom, for example, coverage decisions based on these flawed standards resulted in limited access to treatments for children with cystic fibrosis and spinal muscular atrophy. If adopted here in the United States, individuals will see similar results to that of the U.K. and those suffering from chronic illnesses or disabilities will be deemed less valuable, less worthy than others.

As someone with three decades of national and state health care experience working with individuals, families and leaders in the disability and health care community, my position is consistent with the concerns raised by dozens of patient and advocacy groups. Implementation of binding arbitration, which will inevitably rely on comparative or cost-effectiveness analysis, would evoke a strong and negative response from such a high number of diverse consumers across the nation that it’s hard to ignore what they’re asking our legislators to consider regarding access and cost of care as it relates to individual and family preferences.

If taken, these policies would threaten patient access to breakthrough treatments and interfere with patients and doctors deciding what treatment is best based on what an individual prefers or needs. Before we move closer as a nation toward these discriminating methods in our health care system, we must consider the merit of further development of patient-centered solutions that encourage individual choice and engagement in their own health, care, treatment and coverage.


Randall Rutta is a principal with ConnectHealthLLC.

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