PIPC's concerns are threefold. First, despite our continued advocacy for patient engagement in the development of alternative payment models, this proposal appears to have been rushed forward with little or no input from the patient community. The phase involving CMS use of CER and cost-effectiveness analysis is set to begin early in 2017 and will eventually cover 75 percent of providers and their patients. Second, it directly contradicts PIPC's mission and long-standing efforts to support patient-centered approaches to comparative effectiveness research and payment and delivery reform. Third, by relying on value assessment tools intended to drive centralized coverage decisions, it creates substantial new barriers to patient access and undermines the movement toward patient-centered health care.
We urge patients, people with disabilities, caregivers and providers to voice their concern about the agency's proposal. PIPC is developing additional background materials on this critically important proposed rule and will be circulating them in the coming days. In the meantime, we encourage you to review recent commentary by PIPC Chairman Tony Coelho at The Huffington Post, Morning Consult, and Roll Call. These commentaries included statements from Mr. Coelho that are particularly salient in considering CMS' proposed rule:
“Nowhere in this ‘value’ discussion do we see an honest consideration of the real-world impact these proposals would have on the individual patient or the person with a disability for whom an innovation may have significant value. Yet nothing is more dangerous to the practice of patient-centered care than an academically pristine algorithm in the hands of a bureaucrat. I say it often and I'll say it again: no patient is ‘average.’ And proposals that set national policy based on judgments of average value pose a grave risk to patients and especially, people with disabilities.” The Huffington Post, February 4, 2016
“The approach that emerged from our [2015 Oncology Roundtable] forum - one that advances value for all patients while respecting differences in values among patients - is diametrically opposed to renewed calls for policy-making grounded in centralized value judgments and cost-effectiveness thresholds...There would in fact be significant costs, both for the healthcare system and for my quality of life, if I were treated as an ‘average’ epilepsy patient - more seizures, hospitalizations, and doctor visits, in addition to the stresses of my recovery.” Morning Consult, November 19, 2015
“So we again face a choice. Will we continue conduct CER to support patient needs and the science of personalized and “precision” medicine, or are we going back to the paternalistic days of patting patients on the head, telling them to take two pills and call back in the morning. I cannot imagine patients want to be sidelined in their own care decisions based on centralized value assessments from CER studies that are meaningless to them personally. We’ve come too far in building the research and innovation infrastructure that enables personalized decisions to throw it all away because we do not systematically believe patients should be driving their own care. As PIPC’s Chairman and a patient with a disability myself, I would urge policymakers to move forward – not backward – and to embrace the ideals of patient-centered, personalized medicine.” Roll Call, October 16, 2015.
Click here to view PIPC's recent poll on patient access and patient-centered care.
Click here to send a letter urging Congress to oppose the Part B Drug Payment Model.