Not Dead Yet is a national disability rights group whose focus includes protecting the right to receive desired life-sustaining care. Not Dead Yet has signed on to the comment submitted by the Partnership to Improve Patient Care, but we would like to submit a short additional comment.
A significant concern is the impetus behind the 2019 amendment to the PCORI reauthorization, which included the following ominous language:
“Research shall be designed, as appropriate, to take into account and capture the full range of clinical and patient-centered outcomes relevant to, and that meet the needs of, patients, clinicians, purchasers, and policy-makers in making informed health decisions. In addition to the relative health outcomes and clinical effectiveness, clinical and patient-centered outcomes shall include the potential burdens and economic impacts of the utilization of medical treatments, items, and services on different stakeholders and decision-makers respectively.”
The PCORI Principles further clarify that “PCORI is charged with considering the full range of outcomes that meet the needs of ‘clinicians, purchasers, and policy- makers in making informed health decisions,’ in addition to those that meet the needs of patients.”
While it is comforting that PCORI reaffirms “the limitation that PCORI ‘not develop or employ a dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended,’” the 2019 amendment muddies the waters at best.
The principles are very well word-smithed, but the health insurers and other stakeholders whose highest priority is increasing their economic bottom line are very good at word-smithing as well. The amendment is a loophole, a potentially dangerous loophole, slipped into the PCORI authorizing legislation.
PCORI will have to be vigilant to prevent various stakeholders from using PCORI to their economic benefit at the expense of patients. Given the longstanding cost-cutting pressures in the healthcare system, now increased by the COVID crisis, this will be no small task. We hope that you will seek the assistance of a broad array of disability organizations in your efforts.