1. Chairman Coelho in San Jose Mercury News: Trump Medicare drug plan would hurt most vulnerable, click here to read the op-ed.
2. Friends of PCORI Reauthorization Event, see details below.
3. PIPC Submits Comment Letter to CMS on Proposed International Pricing Index, click here to read the letter.
4. Chairman's Corner: ICER Misses the Mark Again, click here to read the blog.
5. Summary of PIPC's 9th Annual Forum: Building Patient-Centered Value Standards, click here to read more.
6. PIPC: Don't Discriminate on Care, click here to view.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view.
8. Patient EngagementHIT: Rural Hospital Travel Times Increase, Hamper Patient Care Access, click here to read the article.
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.
PIPC Chairman Tony Coehlo penned an op-ed in The Mercury News outlining his concerns with the Trump administration’s proposed international drug pricing index. “I’m all for reforms to reduce drug prices and improve affordability. I’ve consistently advocated for a seat at the table for patients and people with disabilities in creating a health care system that pays for high-quality care. Data and information from personalized and precision medicine can tell us what treatment works for whom to both improve access and lower prices. What I’m not for, however, are policies that systematically disadvantage those most vulnerable. In effect, the administration proposes to smuggle in the same discriminatory coverage standards and formularies that I and many other leading advocates have fought for the last 30 years.”
“Other countries limit access to medications using one-size-fits-all thresholds based on quality-adjusted-life-years, or ‘QALYs.’ QALYs seek to quantify the extent to which a treatment extends life and improves health on average — but in practice, these algorithms discriminate by assigning higher value to people in ‘perfect health’ than people in less-than-perfect health. Treatments for older individuals with fewer years to live or for people living with disabilities fare badly under algorithms that say, ‘you’re not worth it.’” Click here to read the op-ed.
2. Friends of PCORI Reauthorization Discussion
PIPC Chairman Tony Coelho will be joined by former Congressman Phil Gingrey for a bipartisan discussion and lunch on January 15, 2019 and to hear from fellow advocates and policymakers about PCORI reauthorization. If you are looking for a way to engage in the process of supporting PCORI’s reauthorization, please join us! Click here to RSVP. Click here for additional information about Friends of PCORI Reauthorization.
When: January 15, 2019
Time: Noon-1:30 p.m.
Where: Location may change to Capitol Hill, stay tuned!
3. PIPC Submits Comment Letter to CMS on Proposed International Pricing Index
PIPC joined organizations representing patients, people with disabilities, family members, caregivers, veterans, seniors, providers, and others in response to the Advance Notice of Proposed Rulemaking released by the Center for Medicare & Medicaid Services (CMS) to utilize an “International Pricing Index” (IPI) to set reimbursement for medicines in Medicare Part B. The letter highlights concerns that this new policy would import QALY-based standards to key U.S. health programs. "Addressing health care costs, including drug prices, is an important and meaningful effort that should center on achieving outcomes that matter to those being served by health systems (patients, people with disabilities, veterans, seniors and other marginalized communities) such as improved quality of care and lower out-of-pocket costs," the letter states. "We are hopeful the Administration will reconsider their plan to import international cost-effectiveness standards into the U.S. and instead advance patient-centered, non-discriminatory approaches and establish meaningful protections for our communities in future demonstrations." Click here to read the letter.
4. Chairman's Corner: ICER Misses the Mark Again
In the newest Chairman's Corner Blog, PIPC Chairman Tony Coelho notes that ICER's new value metric, the Equal Value of Life Years Gained (evLYG), has similar implications for potential discrimination as ICER's QALY metric. Chairman Coelho stated, "Having authored the Americans with Disabilities Act (ADA), I have dedicated myself to eradicating discrimination and ensuring protections for the most vulnerable in our society. As a 76-year-old with epilepsy, this is a profoundly personal mission for me. I applaud ICER for its long-overdue recognition that use of the cost-per-QALY metric in health care decision-making discriminates. This is not just a 'concern' raised by some groups, as suggested in ICER’s materials, but an established reality that is readily acknowledged by many academics. However, I am deeply disappointed that ICER’s answer is a false choice between two fundamentally flawed standards. Instead, we support a new breed of health economists and researchers committed to innovative methods of value assessment for use by insurers and others that appropriately capture what matters most to patients, seniors, people with disabilities, and people who identify with historically marginalized populations. While we acknowledge ICER is attempting to address one of the many shortcomings of the QALY, it is not helpful that insurers and others can now choose between a standard that ignores many of the health and quality of life benefits that matter to patients and their caregivers or one that inherently discriminates.” Click here to read the entire blog.
5. Summary of PIPC's 9th Annual Forum: Building Patient-Centered Value Standards
As health care policymakers are proposing new payment incentives and building so-called “value standards,” patient advocates and health policy experts have concluded that patients and people with disabilities should lead the way on creating new solutions. That was the message from a panel of leading experts on defining “value to the patient,” who joined a spirited discussion on the future of value-based care at PIPC’s 9th Annual Forum in Washington D.C. While the panelists concluded that the move to "value" can help patients by promoting access to affordable care they value, in practice, it became apparent that many real-world examples of moving to value leave patients and people with disabilities behind. Instead the panelists outlined a slate of alternative, evidence-based strategies that represent the future of how the heath care system can make decisions that reflect the values of patients. Click here to read more.
6. PIPC: Don't Discriminate on Care
Patients and people with disabilities face major threats as private insurers and government programs look to cut costs using quality-adjusted-life-years (QALYs) and other assessments that discriminate against patients, people with disabilities and seniors. Recently, new threats have emerged, including:
- A pharmacy benefit manager’s new plan to limit access to prescription drugs using a rigid cost-per-QALY threshold, similar to that used by the United Kingdom’s National Health Service;
- The use of cost-per-QALY thresholds in New York’s Medicaid program;
- A new Medicare proposal that would set reimbursement for physician-administered medicines based off of decisions made in countries that use WALYs and cost effectiveness thresholds to set national coverage.
Join us in opposing discriminatory denials of care across our health insurance system. Patients and people with disabilities deserve to have our lives valued, because nobody should be considered too expensive to get the care they need. Click here to learn more. Click here to view our petition.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage?
Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care. In New Zealand, patients are not getting access to treatment, and some are forced to leave the country to access treatments. Click here, here and here to read more. In Canada, click here to view the story of a child with thyroid cancer forced to come to the U.S. for care, and here to learn about patients seeking medications for heart pain being denied access. Spinal muscular atrophy advocates are similarly petitioning Health Canada to expand access to treatment. Click here to view the article. Similarly, in the United Kingdom, activists fight for access to treatments for cystic fibrosis and cancer. Click here and here for articles related to cystic fibrosis, and here for an article related to limited access to treatments for lung cancer. The Wall Street Journal’s Editorial Board recently opined on "why the U.S. shouldn’t put the world’s most innovative drug market at the mercy of what Greece is willing to pay for a cancer treatment.” Click here to view.
8. Patient EngagementHIT: Rural Hospital Travel Times Increase, Hamper Patient Care Access
In an article for Patient EngagementHIT, Sara Heath writes that rural patients face 17-minute travel times to the nearest hospital, calling into question convenient patient care access. "On average, patients living in rural areas face a 17-minute trek to the nearest hospital. Those living in urban areas must travel an average of 10 minutes and suburban residents live 12 minutes from the nearest hospital. Pew determined those numbers by looking at the average distance, in miles, patients living in each community type may face. The Center also took into account traffic patterns in each area. On average, those living in urban regions live 4.4 miles away from the nearest hospital. Those in suburban communities live 5.6 miles away and those in rural areas live 10.5 miles from the nearest hospital. This has resulted in significant patient care access barriers, the analysis added. A May 2018 survey also conducted by Pew confirmed that 23 percent of rural dwellers say access to good doctors at a reasonable distance is a challenge in their communities. Eighteen percent of those living in urban areas and 12 percent in suburban towns said the same." Click here to read the article.
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression
The Institute for Clinical Economic Review (ICER) conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. ICER provides guidance on its website for patients and patient advocates to provide direct input related to their experiences with the disease. Click here to provide patient input. Click here to view the topics and deadlines. Please note the following upcoming formal ICER deadlines per their website:
Spinal Muscular Atrophy: 12/20/2018-1/31/19 Open Input on draft report!! 3/7/19 Public meeting.
Depression: Revised scoping document available on treatment-resistant depression. 1/14/19 Research Protocol. Also note interventions of interest for 2019 review: Esketamine (Janssen)
Multiple Sclerosis: Revised scoping document available on treatment for secondary progressive multiple sclerosis. 1/14/19 Research Protocol.
Peanut Allergy: Stakeholder list available. Revised scoping document on 12/20/2018. 4/9/19 Draft Evidence Report.
Duchenne Muscular Dystrophy: Open input period 12/20-1/8/2019!!
10. Upcoming Events and Webinars
Cycle 1 2019 Improving Methods Applicant Town Hall
January 16, 2019
Click here for details.
Cycle 1 2019 Treatment of Posttraumatic Stress Disorder in Adults Applicant Town Hall
January 17, 2019
Click here for details.
Cycle 1 2019 Treatment of Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall
January 22, 2019
Click here for details.
Pharmacological Treatment for Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall -- Cycle 1 2019
January 22, 2019
Click here for details.
Cycle 1 2019 Broad PFAs Applicant Town Hall
January 23, 2019
Click here for details
Nothing About Us Without Us: How the Need for Cultural Responsiveness is Changing Research
January 24, 2019
Click here for details
PCORI Board of Governors Meeting
January 29, 2019
Click here for details.
Patient Registries and Real-World Evidence Summit
January 30-31, 2019
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
A New Path Forward for Using Real World Evidence in Randomized Clinical Trials
June 23, 2019,
Click here for details.
11. Medical Journal Articles
A Patient-Centered Approach to Comparative Effectiveness Research Focused on Older Adults: Lessons From the Patient-Centered Outcomes Research Institute, click here to view.
Editorial: Evaluating Patient and Public Involvement in Research, click here to view.
Developing a Patient-Centered Outcome for Targeting Early Childhood Obesity Across Multiple Stakeholders, click here to view.
Cancer Patient Perspectives on the Use of Clinical Pathways and Shared Decision-Making in Cancer Care, click here to view.
In Proportion: Approaches for Displaying Patient-reported Outcome Research Study Results as Percentages Responding to Treatment, click here to view.
If Patients Are the True North, Patient-Centeredness Should Guide Research, click here to view.
Understanding and Improving Value Frameworks With Real-World Patient Outcomes, click here to view.
Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project, click here to view.
Comparative Effectiveness and Safety of Bariatric Procedures for Weight Loss: A PCORnet Cohort Study, click here to view.
Oh, the Places We'll Go: Patient-Reported Outcomes and Electronic Health Records, click here to view.
Putting Patients at the Centre of Healthcare: Progress and Challenges for Health Technology Assessments, click here to view.
12. AHRQ Effective Program Updates
Patient Navigation Models for Lung Cancer, click here to view.
Stroke Prevention in Patients With Atrial Fibrillation: A Systematic Review Update, click here to view.
Long-term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention: A Systematic Review, click here to view.
Addressing Social Isolation to Improve the Health of Older Adults: A Rapid Review, click here to view.
Labor Dystocia, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Women: A Systematic Review Update, click here to view.
Randomized Trial of a Patient-Centered Decision Aid for Promoting Informed Decisions about Lung Cancer Screening: Implementation of a PCORI Study Protocol and Lessons Learned, click here to view.
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.