As someone living with epilepsy, I care about making sure health care and drugs are affordable. As both a patient and the lead author of the Americans with Disabilities Act, I care just as much about finding solutions that engage and empower patients and people with disabilities in the development of models that pay for quality and measurable outcomes.
Policymakers, insurers and pharmacy benefit managers are instead offering up troubling proposals that tell patients what they’re worth instead of asking them what they value.
As I wrote in a recent blog, I am deeply worried that pharmacy benefit managers would even consider offering insurance plans that exclude drugs if they exceed a subjective “cost-effectiveness” threshold. Doing so relies on a deeply flawed value assessment models that would deny access to medications that don’t meet their “cost per quality-adjusted-life-year” (QALY) limit.
Equally worrisome is a new proposal for Medicare to set reimbursement for physician-administered medicines based off of decisions made in countries that use QALYs and cost effectiveness thresholds to set national coverage.
This type of cost effectiveness analysis discriminates against people with disabilities and other vulnerable groups like the elderly because it assigns higher value to people in “perfect health” than people in less-than-perfect health. So let’s say your child has a degenerative neurological condition and an expensive new drug is introduced that can halt, but not reverse, the damage done by the disease. Your child, and other patients like her, would be considered “worth less” under a cost-effectiveness formula. As a result, the new treatment would not meet the threshold for coverage.
It is not right for patients and people with disabilities to be caught in the middle of this fight to lower health care costs. Reliance on cost-effectiveness thresholds is intended to standardize and limit care options, replacing deeply personal, individual health care decisions with an algorithm that does not address the needs of different patients.
Sign now to demand that policymakers, insurers and pharmacy benefit managers stop relying on discriminatory cost-effectiveness thresholds developed here and in foreign countries.