Partnership to Improve Patient Care

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  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • Action Center
    • Value Our Health
    • International
    • Where We Stand
    • Value Assessment Frameworks
    • Engaging Patients in Value-Based Payment
    • Patient-Centeredness in Research
  • Resources
    • Advocacy
    • Letters and Comments
    • PCORI Meeting Transcripts
    • Polling
    • Roundtables
    • White Papers
  • News
    • Press Releases
    • PIPC in the News
    • PIPC Weekly Update
    • PIPC Patients' Blog
    • Chairman's Corner
    • The Data Mine
  • Events
    • MFN/IPI Webinar 2025
    • QALY Panel
    • QALY Briefing
    • Past Webinars >
      • Discrimination & Health Care
      • C & GT Webinar
      • ICER COVID Webinar
      • Value Our Health Briefing
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
      • QALY Webinar
      • PCORI Advocacy Webinar
      • APM Webinar
      • Patient Empowerment Webinar
      • Value Assessments Briefing
    • Past PIPC Forums >
      • 2023
      • 2022
      • 2021
      • 2020
      • 2019
      • 2018
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The PIPC Blog

PIPC Patient Blog: Access Delayed is Access Denied

2/7/2024

 
Beth Vanstone
By Beth Vanstone, Canadian Cystic Fibrosis Patient Advocate, Rare Disease Drug Access Advocate

As politicians point to countries like Canada as models for how they reimburse and cover lifesaving therapies, here is my response as a Canadian.

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PIPC Patient Interviews: Heather Badt and Daniel Cramer

9/20/2023

 

PIPC Patient Blog: How Health Care Systems Do, and Do Not, Support Patients.

11/22/2021

 
Partnership to Improve Patient Care Logo
This op-ed originally appeared in The Boston Globe on November 22, 2021.

By Jenn McNary 
​

I live with my four children, three of whom have rare diseases. My sons Austin and Max both have Duchenne muscular dystrophy, and my son James has primary immune deficiency.

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PIPC Patient Blog: It is Time to Let Go of the QALY’s Legacy of Discrimination

7/20/2021

 
Partnership to Improve Patient Care logo
By Kelly Israel & Sara van Geertruyden

People with disabilities are consistently told they are too expensive to treat when compared to other groups. A metric of determining cost effectiveness of treatments and health services called the quality-adjusted life year (QALY) is yet another tool to make that argument on a larger scale.

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PIPC Patient Blog: Congress Moves to Import Discriminatory Health Policies

4/1/2021

 
Partnership to Improve Patient Care logo
This piece originally appeared in RealClearHealth on March 31, 2021. 

By Adrienne Shapiro

Healthcare costs seem to be a constant discussion point both in Washington and in our state capitals. Policymakers are on a quest for a silver bullet that they can trumpet as a win to constituents, but this debate is complex, and nuanced; and will have enormous ramifications for American patients, like my daughter, Marissa, who lives with sickle cell disease and who has a new lease on life from innovative treatments.​

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PIPC Patient Blog: ICER Report Adds Insult to Injury for Cystic Fibrosis Patients

5/1/2020

 
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​By Siri Vaeth, MSW

My daughter, Tess, lives with cystic fibrosis (CF). She is twenty-five years old. Not too long ago that would have been unimaginable for a CF patient. I’m so grateful for the medical advances that allow my child to have a full life.


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PIPC Patient Blog: Migraine Patients Deserve Access to Needed Treatments

3/5/2020

 
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By: Jaime Sanders 
​

​​I am a mother, wife, and patient advocate living with intractable migraine. I am allergic to or do not tolerate many standard migraine treatments, and the pain management options I am left with are extremely limited. Despite a comprehensive strategy to manage my migraine and taking four preventative medications, I am in pain every, single day. Living with migraine disease carries a huge burden. It has forced me to leave the work force and my husband and children to be caregivers. 

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PIPC Patient Blog: CancerCare Response to 'Mouse That Roared'

7/8/2019

 
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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.


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PIPC Patient Blog: Patient Perspectives on the Quality Adjusted Life Year

2/8/2019

 
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By: Elizabeth Franklin 

The use of the quality adjusted life year, or QALY, is widespread in research, health economics, and value assessment. However, the QALY is not without controversy as has been noted many times in the PIPC blog. Health economics and outcomes researchers, policy makers, and advocates have long debated the appropriateness and ethics of the QALY. Governmental agencies, managed care organizations, and healthcare payers routinely utilize the QALY in their decision making. However, one voice that has been glaringly absent from this debate is the most important voice: patients. 


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PIPC Patient Blog: ‘Value’ Measures for Rationing Healthcare Devalue My Life

11/14/2018

 
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By Rosie Bartel
​

Nine years ago, I had a routine knee replacement surgery. Instead of recovering and getting back on my feet, however, I contracted a surgical infection which took my right leg, hip, and part of my pelvic bone. My doctors told me I should have died. One said I had just a 30 percent chance of survival. But I’m a fighter. My life changed, and I am now confined to a wheelchair — but my passion for life didn’t change. I began fighting for the rights of people like myself and it has been the most meaningful work of my life.


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PIPC Patient Blog: Formulary Restrictions Devalue And Endanger The Lives Of Disabled People

10/31/2018

 
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This was originally published as an October 29, 2018 post in Health Affairs Blog.

By Ari Ne'eman 

​As policymakers around the world seek to manage rising drug expenditures, people with disabilities find ourselves increasingly concerned by the potential harms that cost-cutting measures may bring. The growing fight between health care purchasers and drug manufacturers offers yet another instance where people with disabilities and chronic conditions may find themselves caught in the cross-fire.


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PIPC Patient Blog: Our Children Are Worth It

7/17/2018

 
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This post was originally published as a July 17, 2018 article in Disabled World.

By: Stephanie Bozarth 

​
Should one consider the life of a person with a disability less valuable than the life of a person without a disability? Alarmingly, states are increasingly relying on policies that do just that, in order to determine the value of health care services and treatments. For children suffering from life-threatening and debilitating disorders, like my daughter, reliance on any standard that considers her life less valuable than someone without a disability, is simply unacceptable.


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PIPC Patient Blog: Closed-Minded Medicaid Proposals Would Harm Patients

5/15/2018

 
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This post was originally published as a May 15, 2018 op-ed in Morning Consult.  

By: Philip Gattone 

As the Epilepsy Foundation maintains focus on preserving patient access to potentially life-saving medications, we were alarmed at a recent proposal in the White House budget that would allow states to alter their Medicaid drug plans to exclude certain medications. 


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PIPC Patient Blog: Seeing the Promise in Gene Therapy

1/12/2018

 
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By: Janni Lehrer-Stein

​A 10-year-old girl sees her mother’s face for the first time. An 11-year-old boy races through the aisles of Target, marveling at toys he never knew existed. Both children had mere glimmers of vision, and were destined to lose even that because of an inherited eye disease with no treatment or cure. But thanks to the miracles of modern-day medicine, what was once only possible in science fiction novels is now becoming reality. 


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PIPC Patient Blog: Policymakers Can't Turn a Blind Eye to Patients With Disabilities

9/5/2017

 
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By: Janni Lehrer-Stein
​​
I learned recently, many weeks after its early June announcement, that the Institute for Clinical Economic Review (ICER) based in Boston will develop a report assessing the cost effectiveness of a new cure for blindness, a gene therapy for vision loss associated with a form of retinal disease. By the time I learned about it, the comment period had closed to allow stakeholders to share key information relevant to the first phase of development of the evidence report. While ICER said it would contact key patient groups and clinical experts to gain further insights on the patient perspective and clinical context of this new treatment option, I had never heard about it when I could have had a voice in the initial phase of the study.  It’s not clear how hard they worked to get the patient perspective, and I certainly have a perspective to share


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