Partnership to Improve Patient Care
Written by Sara van Geertruyden
Executive Director, Partnership to Improve Patient Care
Before 2010, patients and people with disabilities had long wanted to see research centered around answering the questions they cared most about when making health care decisions comparing how different treatments impact how real people live, work and play. Achieving such a legislative feat would require a coalition effort that included all healthcare stakeholders, including providers, researchers, industry and of course patient and disability advocacy organizations. To be successful would mean having someone lead the coalition that could ensure it genuinely centered on patients and people with disabilities, with support from across the stakeholder community. It is no wonder that the first person to come to mind strong enough to lead such a coalition was Tony Coelho. When Senator Ted Kennedy raised the idea, Tony was happy to accept responsibility for making it happen.
The Partnership to Improve Patient Care (PIPC) became that coalition and was fully organized by 2009 with Tony’s leadership recruiting its 40+ inaugural members. At the time, comparative effectiveness research (CER) was a hot topic on Capitol Hill, as there was an obvious gap in evidence to help patients, clinicians and other decision-makers make informed choices. The politics then were not dissimilar to the politics today – far right politicians did not want to spend on comparative effectiveness research for fear it
would be used to justify restricted coverage in programs like Medicare, tying the hands of doctors on what treatments they could prescribe. The far left wanted comparative research to not only assess clinical outcomes of medical interventions, but also the cost effectiveness of those interventions for use in coverage policies. Tony Coelho became the voice for protecting patients in the middle caught in the crossfire, advocating alongside PIPC members for comparative clinical effectiveness research to be conducted by an independent agency barred from using discriminatory measures of cost effectiveness or from using the information against patients and people with disabilities that may not fit the average.
The rest is history. As part of the Affordable Care Act in 2010, Congress authorized the Patient-Centered Outcomes Research Institute (PCORI), consistent with PIPC’s vision and advocacy for the organization. He pushed for patients and people with disabilities to have not just a voice but a vote in PCORI’s work, with three Board seats designated to patients and consumers.
Since 2010, I have had the privilege of working with Tony to grow PIPC’s membership and focus its activities on ensuring patients and people with disabilities are meaningfully engaged from the design and conduct of research to its dissemination and use in decision-making. While discriminatory measures of cost effectiveness were barred from use in Medicare as part of PCORI’s statute, Tony led PIPC in the fight to uphold that prohibition in 2016 when discriminatory QALY-based cost effectiveness analyses were proposed for use in restricting coverage of Medicare Part B drugs. When policymakers considered importing discriminatory policies from other countries that rely on measures like QALYs otherwise banned in the U.S., Tony was quick to respond that referencing coverage and reimbursement policies made using data that discriminates is contrary to current laws banning their use. Tony knows that laws are useless without enforcement.
Tony is the insider fighting for people with disabilities to be valued in the U.S. health system. He led the 2020 fight for the DNC Platform to explicitly commit not to reference QALYs and has worked across the aisle to ensure that commitment is bipartisan.
His dedication to the cause of disability rights is more than a mission – it is Tony’s ministry. I have gotten my education in advocacy from the champion of advocates, for which I will be forever grateful.