Partnership to Improve Patient Care

  • 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
    • Nevada AB 259
    • QALY Panel
    • QALY Briefing
    • Past Webinars >
      • MFN/IPI Webinar 2025
      • 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
      • 2017
      • 2016
      • 2015
      • 2014
      • 2013
      • 2012
      • 2011
      • 2010
  • 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
    • Nevada AB 259
    • QALY Panel
    • QALY Briefing
    • Past Webinars >
      • MFN/IPI Webinar 2025
      • 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
      • 2017
      • 2016
      • 2015
      • 2014
      • 2013
      • 2012
      • 2011
      • 2010

The PIPC Blog

Chairman's Corner: Trump Medicare Drug Plan Would Hurt Most Vulerable

1/2/2019

 
Picture
This post originally appeared as an op-ed in the San Jose Mercury News on January 2, 2019. 

The Trump administration proposed an “international pricing index” intended to reduce drug spending under Medicare Part B by replicating the rates negotiated in other countries. It seems like a commonsense solution: Why should America pay more than other countries?The truth, however, is more complicated: lower foreign prices emerge from one-size-fits-all health care systems that drive patients to use certain drugs while refusing others, irrespective of individual needs.

This is a compromise Americans have always rejected. Lowering the reimbursement rate that Medicare pays for drugs is meaningless if patients are denied access to the right drugs.

​In America, we want doctors and patients driving treatment decisions, not bureaucrats.
​
Recently, I’ve been reminded of what we accomplished when President George H.W. Bush signed the Americans with Disabilities Act in 1990, providing legal rights for people like me — who has epilepsy — to live and work equally.  But President Bush’s passing also serves as a reminder for what we could lose if we don’t advocate for disability rights — if we start importing policies that discriminate against so-called high-cost patients.

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.”

In the United Kingdom, people with multiple sclerosis, cystic fibrosis, and rare childhood diseases are routinely in the news for being denied access to life-changing medications.  In Canada, less than 40 percent of medicines launched globally between 2008 and 2012 were available by 2013. And 95 percent of new cancer drugs are available in the United States, compared to as low as 8 percent in Greece. Imagine rejoicing in the development of innovation, only to be told that you or your loved one can’t get it.

For me, this issue is personal.  I’m 76 with epilepsy — old and disabled — a deadly combination if I were to be judged by a QALY. Yet, I am more active than ever.  I chair the Partnership to Improve Patient Care; I am on several boards of directors; and I recently launched the Coelho Center on Disability, Law, Policy and Innovation at my alma mater, Loyola Marymount University in Los Angeles, to ensure continued progress in the disability rights movement.

I’m not done, and hopefully the health care system isn’t done with me either.

Earlier this year, U.S. Health and Human Services Secretary Alex Azar spoke sensibly when he expressed skepticism with foreign reference pricing, saying he preferred alternatives that “keep patient choice and patients at the center.”

It is profoundly upsetting they are now trying to import these countries’ policy decisions, which will no doubt end as badly for people with disabilities and serious conditions in the United States as they have for those overseas.
pipc_pchairmans_blog_san_jose_mercury.pdf
File Size: 112 kb
File Type: pdf
Download File


Comments are closed.

    Topics

    All
    Alternative Payment Models
    Chairman's Corner
    Patient Centered Research
    PIPC In The News
    PIPC Patient Blog
    PIPC Weekly Update
    Press Releases
    The Data Mine
    Value Frameworks

    Archives

    June 2025
    May 2025
    April 2025
    March 2025
    February 2025
    January 2025
    December 2024
    November 2024
    October 2024
    September 2024
    August 2024
    July 2024
    June 2024
    May 2024
    April 2024
    March 2024
    February 2024
    January 2024
    December 2023
    November 2023
    October 2023
    September 2023
    August 2023
    July 2023
    June 2023
    May 2023
    April 2023
    March 2023
    February 2023
    January 2023
    December 2022
    November 2022
    October 2022
    September 2022
    August 2022
    July 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    December 2021
    November 2021
    October 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    April 2013
    March 2013
    December 2012
    November 2012
    February 2012
    September 2011
    August 2011
    July 2011
    May 2011
    March 2011
    November 2010
    October 2010
    September 2010
    August 2010
    April 2010
    March 2010
    February 2010
    December 2009
    September 2009
    July 2009
    June 2009
    May 2009
    February 2009
    January 2009
    December 2008

Powered by Create your own unique website with customizable templates.