In This Week’s Issue:
 
1. Value Our Health: What is a Quality Adjusted Life Year, or QALY? Click here for a video on how QALYs put patients’ access at risk.
2. SWHR Migraine Toolkit, click here to view the toolkit.
3. Bloomberg: International Pricing Index Policy Expected in September, Opposed by Many Advocates, click here to view a letter from advocates and here for international case studies. Click here to view the Bloomberg article. 
4. Aging Advocate: Discrimination has No Place in American Prescription Drug Coverage, click here to read the article.
5. RetireSafe: IPI Would Damage the Health of American Seniors, click here to read the article.
6. NHC Rubric on Capturing the Patient Voice -- Comment Opportunity, click here to see the Rubric and to comment.
7. CMS to Cover CAR-T Therapy for Patients Nationwide, click here to read the article.
8. ICER Announces Possible 2020 Assessments, click here to see the list of possible assessments.
9. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training, click here to learn more and to apply for the training.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
11. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.  

In This Week’s Issue:
 
1. NHC Rubric on Capturing the Patient Voice -- Comment Opportunity, click here to see the Rubric and to comment.
2. New Medicare Primary Care Models and Their Potential for Seriously Ill Beneficiaries, click here to read the article.
3. Alliance for Health Policy Webinar on the Future of PCORI, click here to watch the webinar.
4. ICER Announces Possible 2020 Assessments, click here to see the list of possible assessments.
5. New NPC Resources on Value Assessment, see below for details.
6. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training, click here to learn more and to apply for the training.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
8. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.  

In This Week’s Issue:
 
1. Value Assessments – the Impact on People with Rare Diseases, click here to learn more and watch the webinar.
2. The Hill: Health Systems Must Help Patients Make Informed Decisions, click here to read the article.
3. Op-Ed: ICER's Agenda Helped by Media Attention, click here to read the article.
4. FH Foundation Publication on Cardiovascular Outcomes, click here to read the article.
5. ICER Announces Possible 2020 Assessments, click here to see the list of possible assessments.
6. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training, click here to learn more and to apply for the training.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
8. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.  

In This Week’s Issue:
 
1. Value Assessments – the Impact on People with Rare Diseases, click here to learn more and watch the webinar.
2. Webinar: What's Ahead for Comparative Effective Research? Click here to learn more and RSVP.
3. The Evidence Base Interview: Quarreling Over the QALY, click here to read the full interview.
4. Value Our Health Op-Ed: Stop Discriminatory Value Assessments, click here to read the op-ed.
5. Veterans Groups in California Comment on ICER’s 2020 Framework, click here to read the American Legion letter and click here to read the joint letter.
6. NHC Rubric to Capture the Patient Voice, click here to learn more and see the rubric.
7. AJMC: Precision Medicines Need Precision Patient Assistance Programs, click here to read the article.
8. ICER Announces Possible 2020 Assessments, click here to see the list of possible assessments.
9. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training, click here to learn more and to apply for the training.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
11. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.  

In This Week’s Issue:
 
1. Webinar: Value Assessments – the Impact on People with Rare Diseases, see below for details.
2. Value Our Health Op-Ed: Stop Discriminatory Value Assessments, click here to read the op-ed.
3. Veterans Groups in California Comment on ICER’s 2020 Framework, click here to read the American Legion letter and click here to read the joint letter.
4. Alliance for Aging Research: Video on ICER’s Methodology, click here to see the video.
5. PIPC Patient Blog: CancerCare Response to 'Mouse That Roared,' click here to read the blog.
6. NHC Rubric to Capture the Patient Voice, click here to learn more and see the rubric.
7. ICER Announces Possible 2020 Assessments, click here to see the list of possible assessments.
8. University of Maryland Welcomes Patients, Researchers to PATIENTS Day, click here to read more.
9. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training, click here to learn more and to apply for the training.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
11. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.  

1. PIPC Patient Blog: CancerCare Response to 'Mouse That Roared,' click here to read the blog.
2. Patient Advocates Say ICER Uses Discriminatory Cost Metrics, click here to read the full article.
3. Pioneer Institute Report Addresses Shortcomings of ICER Models to Evaluate Rare Disease Treatments, click here to read the report.
4. Webinar: Value Assessments – the Impact on People with Rare Diseases, see below for details.
5. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training, click here to learn more and to apply for the training.
6. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
7. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below. 

By: Carole Florman 
​
No one who works with or advocates for patients disagrees that drug prices in this country are too high. At CancerCare, an organization that provides free professional support services and information to people affected by cancer, we disagree with the article’s premise that the answer is either out of control prices or ICER’s fundamentally flawed assessment process that discriminates against patients, people with disabilities, and older people.

In This Week’s Issue:
 
1. Patient Advocates Say ICER Uses Discriminatory Cost Metrics, click here to read the full article.
2. Webinar: Value Assessments – the Impact on People with Rare Diseases, see below for details.
3. PIPC and NAMI Express Concern that Flawed ICER Report Will Limit Access to Groundbreaking New Depression Treatment, click here to read the full article. 
4. Value Our Health Capitol Hill Briefing Recap, click here to read more.
5. PIPC Submits Comment Letter to ICER Outlining Concerns with Draft Evidence Report on DMD, click here to read the letter.
6. PIPC, Patient and Disability Groups Highlight Concerns with ICER’s Value Assessment Framework, click here to read the letter.
7. Consortium for Citizens with Disabilities Opposes Use of QALYs and Discriminatory Benefit Design, click here to view the full recommendations.
8. The Perils of QALYs Event Recap, click here to read more.
9. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
10. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
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.  

An article in Inside Health Policy highlighted the Partnership to Improve Patient Care (PIPC) and Value Our Health's criticism of the Institute for Clinical and Economic Review's (ICER) use of the discriminatory quality-adjusted-life-year (QALY). The article astutely points out that the QALY metric has been spurned by Congress, restricting the Patient-Centered Outcomes Research Institute's (PCORI) use of the value assessment measures. The piece also amplifies PIPC's work in pushing for value assessments that incorporate patient preferences and don't utilize a one-size-fits-all approach. "The issue we are tackling today is making sure as we move down that path, that we don’t do it in a manner that discriminates against patients,” said PIPC Executive Director Sara van Geertruyden.

An article in The Pink Sheet highlighted the Partnership to Improve Patient Care (PIPC)'s involvement with Value Our Health -- a new initiative supported by organizations representations patients and people with disabilities. The article highlights Value Our Health's opposition to the Institute for Clinical and Economic Review's (ICER) use of the quality-adjusted-life-years (QALY) metric, nothing that the patients groups have long criticized the method as a one-size-fits-all approach to addressing the needs of patients. "It is disappointing that ICER continues to reference the QALY as the 'gold standard' despite that it distorts and misrepresents how patients value their own lives, and it can lead to insurers and the government to deny care to people who would benefit from it," said PIPC executive director Sara van Geertruyden. "There are other ways of conducting value assessment, it's just they just really don't have the investment that ICER has." 

An article for STAT News highlighted Partnership to Improve Patient Care's (PIPC) Disability Advocate Ari Ne’eman's comments on the importance of assessing the value of medicines using treatment metrics that are specific to particular conditions or diagnosis, instead of relying on the flawed quality-adjusted-life-years (QALY) method. Ne’eman noted that due to the fact that it is inherently discriminatory against certain patients, the use of the QALY method in determining coverage for health plans is “of grave concern.” The article also amplifies Value Our Health's criticism of discriminatory value assessments during a briefing the group held, in which patient groups discussed objections to the Institute for Clinical and Economic Review’s (ICER) recent analysis of a Novartis MS drug and a new Johnson & Johnson antidepressant.

"An article for Inside Sources highlighted the Partnership to Improve Patient Care’s (PIPC) concerns regarding the Institute for Clinical and Economic Research’s (ICER) use of the quality-adjusted-life-years metric. The article amplifies comments from PIPC Executive Director Sara van Geertruyden and PIPC Disability Advocate Ari Ne’eman about ICER’s use of discriminatory value metrics in their reviews of prescription drugs, noting that these methods make patients “pawns in a profit game between Big Pharma and insurers.” “The real issue we have been trying to tackle is that it is not appropriate for patients with disabilities to be caught in the middle,” stated van Geertruyden.  “Where the patient and the disability community are aligned is, their access should not be restricted as part of this path forward."

In This Week’s Issue:
 
1. Webinar: Value Assessments – the Impact on People with Rare Diseases, see details below.
2. Value Our Health Capitol Hill Briefing Recap, click here to read more.
3. PIPC Submits Comment Letter to ICER Outlining Concerns with Draft Evidence Report on DMD, click here to read the letter
4. PIPC, Patient and Disability Groups Highlight Concerns with ICER’s Value Assessment Framework, click here to read the letter.
5. The Perils of QALYs Event Recap, click here to read more.
6. AcademyHealth: Supporting Patient-Centered Research, click here to read the blog.
7. Research!America Event: Improvements to Rural Health Care through Patient-Centered Research, see details below.
8. IVI Submits Comment Letter to ICER on 2020 Value Assessment Framework, click here to read the letter.
9. Consortium for Citizens with Disabilities Opposes Use of QALYs and Discriminatory Benefit Design, click here to view the full recommendations.
10. PIPC Chairman Coelho and Doctors Caucus Co-Founder Dr. Phil Gingrey on PCORI, click here to read the article.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
12. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
13. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
14. Upcoming Events and Webinars, see details below.
15. Medical Journal Articles, see details below.
16. AHRQ Effective Program Updates, see details below.  

On Friday, June 14, Politico's Prescription Pulse Newsletter highlighted the Partnership to Improve Patient Care (PIPC) and over 30 patient and disability groups concerns about the Institute for Clinical and Economic Research's (ICER) 2020 Value Assessment Framework.  The newsletter covers the groups' letter to ICER that criticizes its use of the quality-adjusted-life-years (QALY) metric, amplifying the coalition's message that ICER should abandon the use of discriminatory cost-effectiveness analyses. "The groups — including diabetes, epilepsy, pain and mental illness organizations — want ICER to get rid of a metric known as quality-adjusted life years that is typically used in cost-effectiveness studies to try and measure how much a therapy can improve a life," the post states. "Critics argue the measure places a lower value on the lives of people with disabilities and overestimates their burden. The coalition said it wants ICER to use models that are 'open-source, transparent, and able to generate disease-specific information.'"

In This Week’s Issue:
 
1. You're Invited! Value Our Health Briefings on Capitol Hill, see below for details.
2. PIPC, Patient and Disability Groups Highlight Concerns with ICER’s Value Assessment Framework, click here to read the letter.
3. PIPC Chairman Coelho and Doctors Caucus Co-Founder Dr. Phil Gingrey on PCORI, click here to read the article.
4. Institute for Patient Access: To Improve Framework, ICER Must Address Shortcomings, click here to read the full article.
5. Consortium for Citizens with Disabilities Opposes Use of QALYs and Discriminatory Benefit Design, click here to view the full recommendations.
6. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
7. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy click here to provide patient input.
8. American Autoimmune Related Diseases Association: Let Doctors, Patients Decide Treatment, click here to read the article.
9. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
10 Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.