- PIPC Call to Action: Grassroots Campaign to Oppose National Cost-Effectiveness Thesholds in Medicare, see details below.
- PIPC in the News: Proposed Medicare Rule Would Use Metric Banned During Obamacare Death-Panel Debate, click here to view the article.
- Healthcare Dive: Patient Groups Criticize CMS’ Proposed Part B Model, click here to view the article.
- Clinton Adviser: Next Administration Would Have To Review Phase 2 Of Part B Drug Demo, click here to view the article (subscription only).
- United Cerebral Palsy Launches ‘Speak for Yourself’ Survey, click here to take the survey.
- Inside Health Policy: Stakeholders Craft Patient Engagement Paper In Bid To Steer FDA Policy, click here to view the article (subscription only).
- Network to Explore How Patient-Centered Outcomes Research Can be Incorporated into Clinical Practice, click here to view the article.
- AHRQ Grants $1.9 Million for Patient-Centered Outcomes Research Network, clickhere to view the article.
The Partnership to Improve Patient Care (PIPC) is calling on all members and patient advocates to engage their grassroots networks in opposition of a new proposal calling for centralized use of comparative effectiveness and cost-effectiveness reports as the basis for national Medicare policy. As detailed in our recent Patient Access Alert, PIPC is strongly opposed to CMS’ new Part B demonstration; 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.
To make it easy for stakeholders and patients to express their opposition to the proposal, PIPC has set up a new comment portal and has prepared the action alert below to encourage grassroots support for our position. Our goal is to generate hundreds of letters to Members of Congress to demonstrate the significant resistance among the patient community to CMS new proposals. PIPC strongly encourage our members and friends to share the action alert below with their networks – via email blasts, blog posts, newsletters, on websites, and using social media – to encourage stakeholders to spend two minutes contacting their Member of Congress and opposing the Part B demonstration.
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Stop Medicare from Getting Between Patients and Their Doctors!
We need your help! Last month, the U.S. Medicare agency (CMS) proposed a new reimbursement model for prescription drugs that would set a troubling precedent for determining what treatment options a doctor can offer their patient.
>> Click for easy instructions on how to comment <<
This new proposal would allow the government to determine the value of certain drug treatments for patients by using generalized “comparative effectiveness” research and “cost-effectiveness” data which focus on treating the “average” patient. In reality, no patient is average, and reimbursement policies that rely on treating the “average” patient consistently fall short in facilitating a patient-centered approach to care that allows doctors and patients to collectively choose the best treatment options.
Comparative effectiveness research can be used as a valuable tool for patients to better understand their treatment options and the impact on outcomes they care about so that they can make informed decisions with their providers. However, proposals that set national coverage policies based on bureaucratic determinations of average value pose a grave risk to patients. As proposed, Medicare could use academic research against patients to limit coverage to a treatment that is deemed “cost-effective,” regardless of the real impact on patients or their personal preferences for their course of treatment.
>> Tell Congress: Don't let Medicare get between patients and their doctors <<
The voice of the patient community will be essential in urging Congress to stop Medicare from setting up this new reimbursement model that could significantly undermine the ability of patients and doctors to choose the most appropriate treatment method. We urge you to take two minutes to visit the Action Center and submit comments to Congress to encourage them to support patient-centered care and uphold the doctor-patient relationship.
2. PIPC in the News: Proposed Medicare Rule Would Use Metric Banned During Obamacare Death-Panel Debate
As detailed last week in Libertarian Republic, “A Centers for Medicare and Medicaid Services’ proposed rule would use a metric for rationing health care that was banned following the Obamacare death-panel debate. The controversial rule, which has a public comment period ending May 9, calls for changes to Medicare Part B’s drug payment model and would use reports incorporating data using quality-adjusted life year (QALYs), a tool used for rationing health care by measuring disease burden. The changes have received pushback from both sides of the political spectrum over its potential to limit to drug access for the elderly and physically disabled. The proposal’s second stage suggests testing alternative drug payments using indications-based pricing, which would look at the cost-effectiveness of the medications. The Institute for Clinical and Economic Review (ICER) often uses QALYs, which measures disease burden and quality of life, when working out its data on differences in drug costs.”
“Critics, including patient advocacy groups like the Partnership to Improve Patient Care (PIPC), say the rule allows Washington bureaucrats to use an algorithm that fails to take real-life consequences into account – like doctors being pushed toward the cheaper yet possibly less effective treatment option. In a recent piece for US News and World Report, former Democratic Congressman Dan Maffi –who supported Obamacare – said it would unravel the safeguards put in place by the Affordable Care Act and eventually lead to higher costs… Lawmakers in both chambers have recently called on the administration to withdraw the rule.” Click here to view the article.
3. Healthcare Dive: Patient Groups Criticize CMS’ Proposed Part B Model
An article in Healthcare Dive last week notes that “[t]he Partnership to Improve Patient Care (PIPC), with support from more than  patient groups, sent a letter to CMS acting Administrator Andy Slavitt to voice their concerns about CMS' Medicare Part B demo. The groups raised concerns about CMS' proposed use of comparative effectiveness research and cost effectiveness as national Medicare standards in phase 2 of the proposal. The letter urged CMS not to move forward with the proposed rule unless it accommodates people with disabilities, stating, "we also have strongly opposed misuse of comparative effectiveness research (CER) and cost effectiveness in one-size-fits all government policies." Click here to view the article.
4. Clinton Adviser: Next Administration Would Have To Review Phase 2 Of Part B Drug Demo
According to an article in Inside Health Policy, “Chris Jennings, a health care adviser to presumptive Democratic candidate Hillary Clinton, responded cautiously when asked how the demonstration would fare under a Clinton administration. However, he praised CMS for trying to fix the Part B formula for paying doctors to administer drugs, which he said should be changed because it discourages physicians from prescribing less expensive drugs, leaving beneficiaries with higher copays. ‘I think that any administration coming in, including Democrat, would say, “Let’s evaluate the comments coming in for one and two and make a decision as to whether or not there are some elements of this worthy of preserving,”’ he told Inside Health Policy, referring to the two phases of the proposed demonstration.” Click here to view the article (subscription only).
5. United Cerebral Palsy Launches ‘Speak for Yourself’ Survey
In a release last week, United Cerebral Palsy (UCP) and the Patient-Centered Outcomes Research Institute (PCORI) “launch[ed] Speak for Yourself, a movement to build a network of individuals with disabilities who are trained and empowered to become directly involved in the research that improves their health outcomes. Relevant and well-informed patient-centered clinical research is essential to advancing healthcare access, quality, and choice for individuals with disabilities. A patient-centered approach to research that encourages individuals with disabilities to provide input on the gaps in evidence, best practices, and direction of disability-focused research is central to the success of such research. Individuals with disabilities have expressed the desire to be a part of such a movement to improve their lives, yet to-date, only a small segment have been able to become meaningfully involved. Too often those with the potential to be most impacted by disability-focused research aren’t aware of what research is occurring or how to get involved. Members of the research community have also expressed the desire for more individuals with disabilities to become centrally involved with their work, and seek better relationships with networks of knowledgeable and engaged disability-focused research participants.” Click here to take a survey on the importance of health-related research for people with disabilities.
6. Inside Health Policy: Stakeholders Craft Patient Engagement Paper In Bid To Steer FDA Policy
An article in Inside Health Policy last week reports that “[t]he National Health Council (NHC) and Genetic Alliance (GA) are drafting a proposal they hope will steer FDA's development of guidance on ways to formally engage patients in the drug development process. The groups unveiled an initial outline last week that calls for FDA to voice strong support for patient engagement, and to define key terms and guide rails for appropriate interaction between drug sponsors and patients during the development process. The outline is the product of a December meeting NHC hosted with a broad array of stakeholder groups -- spanning patients, drug sponsors and researchers -- that agree FDA guidance is needed on how to formally engage patients in the drug development process and throughout a product's life cycle… Going forward, NHC and GA hope to develop additional guidance proposals that will cover topics such as how to incorporate patient-provided information in drug labeling; protection of patient interests by promoting full disclosure from sponsors; and protection of personally identifiable patient health information.” Click here to view the article (subscription only).
7. Network to Explore How Patient-Centered Outcomes Research Can be Incorporated into Clinical Practice
A report last week in Healthcare Informatics notes that “[n]umerous barriers to the effective use of [clinical decision support systems] still exist and must be overcome for PCOR findings to be incorporated into CDS at scale. Barriers include limited awareness and availability of PCOR findings; limited expertise with interpreting and embedding those findings into CDS; the lack of widely adopted standards for CDS; the still limited use of portals and personal health records by patients; the lack of a forum to promote stakeholder engagement for assessing barriers and facilitators to implementing PCOR findings in CDS; the lack of collaboration sites with appropriate tools; and the lack of a model for creating and managing authoritative best-practice knowledge repositories.” Click here to view the article.
8. AHRQ Grants $1.9 Million for Patient-Centered Outcomes Research Network
As reported in Healthcare IT News, “The Agency for Healthcare Research and Quality will dedicate nearly $2 million for the creation of the PCOR Clinical Decision Support Learning Network, aiming to address the barriers hindering the incorporation of patient-centered outcomes research into CDS tools. The organization signed a four-year cooperative agreement with RTI International, a North Carolina-based nonprofit research institute, that will work with AHRQ stakeholders to address these issues.” Clickhere to view the article.