1. You're Invited! The Perils of QALYs Event at the Coelho Center in Los Angeles TODAY, click here for more information and click here to RSVP.
2. PIPC Submits Comment Letter to ICER on Peanut Allergy Draft Evidence Report, click here to read the letter.
3. ICER Seeks Public Input for 2020 Value Assessment Framework, click here for more information and to comment.
4. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
5. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
6. Advocacy for Payer Consideration of Patient Input at AMCP, click here to read the article.
7. WaPo: For Patients, a Caregiver’s Compassion is Essential, click here to read the article.
8. PCORI Engagement In Health Research Literature Explorer, click here to use the tool.
9. NVHR Hepatitis C Patient Summit, click here to apply to the patient summit.
10. AUCD: Submit a Proposal for 2019 Conference! Click here for more information.
11. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
On Monday, May 20, PIPC and the Coelho Center on Disability Law, Policy, and Innovation will host an event in Los Angeles entitled "The Perils of QALYs: Addressing discrimination against people with disabilities and serious chronic conditions." PIPC and the Coelho Center invite people with disabilities, patients, seniors, families, individuals experiencing disparities in care, providers and advocates to join our esteemed panel to learn about value assessments, their potential for discrimination, and related public policy threats at the federal and state level. "This event will arm advocates with the information they need to oppose discriminatory measures in public programs, like Medicaid, and defend access to care for all. We hope you will join us in advocating for policymakers to Value Our Health!" wrote PIPC Chairman Tony Coelho. Click here for more information and click here to RSVP.
2. PIPC Submits Comment Letter to ICER on Peanut Allergy Draft Evidence Report
In a letter to the Institute for Clinical and Economic Review (ICER), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on ICER's draft evidence report on treatments for peanut allergy. Chairman Coelho was critical of ICER for overlooking patient input and preferences in favor of the discriminatory quality-adjusted-life-years (QALY) metric, noting that the use of the QALY does not help patients with peanut allergies and their caregivers mitigate burden. He also noted that ICER's model does not account for the complexities of peanut allergy conditions. "ICER continues to use one-size-fits-all models and limited data that do not capture the complexities of different patient populations in their assessments of innovative medical products," wrote Chairman Coelho. "PIPC echoes the Asthma and Allergy Network, the Asthma and Allergy Foundation of America, and other patient advocacy groups that have implored ICER to acknowledge that patients are unique individuals with different preferences who respond differently to treatments." Click here to read the letter.
3. ICER Seeks Public Input for 2020 Value Assessment Framework
As part of its biannual process of revising its value assessment framework, ICER is seeking public comment on potential changes to improve its process. This is an important opportunity for patients and people with disabilities to tell ICER that one-size-fits-all conceptions of "value" ignore what is important to them. Specifically, the use of QALYs discriminates against older people and people with disabilities, and it has no place in determining the value of treatments. ICER is specifically seeking comment on the QALY and its cousin, the equal-value life year gained (evLYG) metric. PIPC looks forward to working with its partners to develop comments that will highlight for ICER how the use of QALYs and evLYGs devalues their lives, with suggestions on addressing the methodological flaws in its current model. ICER is accepting comments through June 10, 2019, and plans to publish draft changes to its framework based on comments received on August 16th. Click here for more information and to comment.
4. 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.
- Australia: An immigrant child with cystic fibrosis and his family may face deportation due to the cost of treating the disease.
- New Zealand: Patients are advocating for PHARMAC to expand its drug coverage, including participating in marches. Click here, here, and here for more.
- Canada: An Ontario woman living with CF advocates for greater access to lifesaving drugs.
- United Kingdom: English families are moving to Scotland in an attempt to access needed CF drugs. A "breakthrough" multiple sclerosis drug will be covered by the NHS only after 21,000 patients petitioned the group.
- France: Patients are alarmed as a multiple sclerosis drug will no longer be covered.
5. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy
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:
- Arthritis: Revised Scoping Document available. 6/14/2019: Research Protocol. Meeting 10/31/2019: CTAF to an update to its 2017 rheumatoid arthritis assessment.
- Type 2 Diabetes: Draft Scoping Document now available, public comment open through 5/22/2019. Meeting 11/14/2019: The New England CEPAC will convene to deliberate on ICER's review of oral semaglutide for the treatment of type 2 diabetes.
- Cardiovascular Disease : Research Protocol now available. 9/26/2019 Meeting: Midwest CEPAC to deliberate and vote on ICER's report on evidence presented in ICER's report on additive CVD therapies.
- Depression: Evidence Report and Meeting Agenda available. Meeting 5/23/2019: Midwest CEPAC to review evidence on esketamine as a therapy for treatment-resistant depression.
- Multiple Sclerosis: Evidence Report and Meeting Agenda available. Meeting 5/23/2019: Midwest CEPAC to review ICER's assessment of siponimod (Novartis) for secondary progressive multiple sclerosis.
- Peanut Allergy: Draft Evidence Report available. 5/28/2019: Responses to public comments. Meeting 6/11/2019: CTAF to review ICER's assessment of treatments for peanut allergy.
- Duchenne Muscular Dystrophy: 5/22/2019: Draft Evidence Report. Meeting 7/25/2019: New England CEPAC to deliberate and vote on evidence presented in ICER's report on treatments for Duchenne muscular dystrophy.
- Unsupported Price Increase Assessment: 10/8/2019: Final Report.
6. Advocacy for Payer Consideration of Patient Input at AMCP
Tufts Medical Center Associate Professor James Chambers gave a presentation at the Academy of Managed Care Pharmacy's annual meeting touching on the importance of payers taking patient input into account in their decision-making processes. "Considering input from patients is invaluable in capturing ‘a day in the life’ of individuals suffering from a particular disease. This information is difficult, if not impossible, to capture from traditional clinical studies and provides insight into what really matters to patients....As researchers, we need to ensure that health plans have access to high quality data, and that we have sufficiently nimble decision-making frameworks to allow for the incorporation of patient preference data," said Dr. Chambers. Click here to read the article.
7. WaPo: For Patients, a Caregiver’s Compassion is Essential
An article in the Washington Post last week highlighted research about the importance to health outcomes of having compassionate care. "We found undeniable signals in the data that compassionate care is associated with vast benefits for patients across a wide variety of physical conditions, such as chronic low back pain, diabetes and even recovery from the common cold," wrote Stephen Trzeciak and Anthony Mazzarelli. "Care that is compassionate and patient-centered is also associated with lower health-care resource use and lower overall health-care costs. It appears that health-care providers who do not have a strong connection with their patients may be more reliant on (expensive) testing and technology." Click here to read the article.
8. PCORI Engagement In Health Research Literature Explorer
Finding literature on engagement in health research can be challenging, because there are no standard search terms or language for describing what engagement means in this context. So, PCORI staff members have put together a searchable list of publications on engagement in health research. Click here to use the tool.
9. NVHR Hepatitis C Patient Summit
The National Viral Hepatitis Roundtable (NVHR) will be hosting a hepatitis C patient summit July 29-30th 2019 in Atlanta, timed with World Hepatitis Day on July 28th. The summit - NVHR’s first national patient gathering - will bring together 100 patients recently cured of or currently living with Hepatitis C who have had limited experience engaging in other advocacy programs. Click here to apply to the patient summit.
10. AUCD: Submit a Proposal for 2019 Conference!
The AUCD Conference welcomes proposals to highlight the work of the disability community. Over 200 different presentations will be accepted to the conference in several different types of sessions, formatted for maximum visibility and interaction with attendees. Proposals are encouraged from students, self-advocates, family leaders, clinicians, and researchers in over 25 topics. Proposals are due on May 24, 2019. Click here for more information.
11. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus
In the interest of amplified patient and stakeholder engagement, your organization may be interested that the House Majority Leader’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Feel free to share any events you have planned. If we hear of similar efforts by the Minority Leader, we hope to share that as well. Please submit your events here.
12. Upcoming Events and Webinars
PCORI Board of Governors Meeting
May 13, 2019
Click here for details.
Policy Briefing: Are Value Assessments in Healthcare A New Form of Discrimination?
May 15, 2019
Click here for details.
Advisory Panel on Clinical Trials Spring 2019 Meeting
May 15, 2019
Click here for details.
Cycle 2 2019 PCORI Broad PFA Applicant Town Hall
May 15, 2019
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Spring 2019 Meeting
May 16, 2019
Click here for details.
2019 ISPOR Conference
May 18-22, 2019
Click here for details.
The Perils of QALYs: Addressing discrimination against people with disabilities and serious chronic conditions
May 20, 2019
Click here for details.
MACRA Information Session: Reintroducing the eCQI Resource Center
May 22, 2019
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019
Click here for details.
Getting Real: The Changing Tide on Real-World Evidence in Drug Development
June 5, 2019
Click here for details.
Advisory Panel on Clinical Effectiveness, and Decision Science Spring 2019 Meeting
June 14, 2019
Click here for details.
PCORI Board of Governors Meeting
June 18, 2019
Click here for details.
Understanding FDA’s Real-World Evidence Program: A Presentation of the AMIA Public Policy Committee
June 21, 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.
PCORI Advisory Panel on Patient Engagement Summer 2019 Meeting
June 27-28, 2019
Click here for details.
NVHR Hepatitis C Patient Summit
July 29-30, 2019
Click here for details.
2019 PCORI Annual Meeting
September 18-20, 2019
Click here for details.
2019 AUCD Annual Meeting
November 17-20, 2019
Click here for details.
13. Medical Journal Articles
Leveraging Patient/Community Partnerships to Disseminate Patient Centered Outcomes Research in Geriatrics, click here to view.
Enabling Individualised Health in Learning Healthcare Systems, click here to view.
Analysis of Sponsor Hearings on Health Technology Assessment Decision Making, click here to view.
Study Verifies Value of Real-World Evidence, click here to view.
A Framework for Aiding the Translation of Scientific Evidence into Policy: The Experience of a Hospital-Based Technology Assessment Unit, click here to view.
Multi-Criteria Decision Analysis for Health Technology Assessment: Addressing Methodological Challenges to Improve the State of the Art, click here to view.
Novel Therapies for an Aging Population: Grappling With Price, Value, and Affordability, click here to view.
How Well Does the Patient-Centered Outcomes Research Institute Fund Primary Care and Comparative Effectiveness Research?, click here to view.
Addressing Health System Values in Health Technology Assessment: The Use of Evidence-Informed Deliberative Processes, click here to view.
Launch of AHRQ's Systematic Review Data Repository (SRDR)+, click here to view.
Knowledge and Use of Evidence-Based Medicine in Daily Practice by Health Professionals: A Cross-Sectional Survey, click here to view.
14. AHRQ Effective Program Updates
Technical Brief: Pharmacological and Nonpharmacological Treatments for Post-Traumatic Stress Disorder, click here to view.
Systematic Review: Management of Infertility, click here to view.
Key Questions: Cervical Ripening in the Outpatient Setting, click here to view.
Key Questions: Radiation Therapy for Brain Metastases, click here to view.
Protocol: A Rapid Evidence Review of Retention Strategies for Medications for Addiction Treatment (MAT) in Adults with Opioid Use Disorder, click here to view.
Systematic Review: Diagnosis and Treatment of Clinical Alzheimer's-type Dementia (CATD), click here to view.
Systematic Review: Comparative Effectiveness of Analgesics to Reduce Acute Pain in the Prehospital Setting, click here to view.
Systematic Review: Long-Term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention, click here to view.
Systematic Review: Telehealth for Acute and Chronic Care Consultations, click here to view.
White Paper: Standardized Library of Asthma Outcome Measures, click here to view.
Research Protocol: Characteristics of Existing Asthma Self-Management Education Packages, click here to view.
Systematic Review: Can Physical Activity Improve the Health of Wheelchair Users?, click here to view.
Comment Period: Registries for Evaluating Patient Outcomes: A User's Guide: Fourth Edition, click here to view.
Treatment of Acute Pain: An Evidence Map, click here to view.
Systematic Review: Pharmacologic and Non-pharmacologic Therapies in Adult Patients with Acute Exacerbation of COPD, click here to view.
Integrating Palliative Care With Chronic Disease Management in Ambulatory Care, click here to view.