Category: PIPC Patient Blog

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

7/8/2019

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.

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

2/8/2019

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.

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

11/14/2018

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.

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

10/31/2018

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.

PIPC Patient Blog: Our Children Are Worth It

7/17/2018

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.

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

5/15/2018

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.

PIPC Patient Blog: Seeing the Promise in Gene Therapy

1/12/2018

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.

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

9/5/2017

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

PIPC Patient Blog: Patients are Changing the Conversation about Health Research

8/23/2017

By Regina Greer-Smith

Now more than ever, patients, caregivers, and others across the healthcare community are having a meaningful say in what traditionally has been the domain of scientists. Today, these diverse voices are helping to decide which research questions to study and which outcomes to focus on.

PIPC Patient Blog: Better Information Means Better-Informed Treatment Choices

8/17/2017

By Donna Cryer

As patients, we know better than anyone that information is power when it comes to deciding which treatment or care choice is best for us. Whether we face a life-threatening illness or a chronic condition, a common or rare disease, we want to know not what might be effective for the “average” patient but what will be right for us given our particular circumstances.

PIPC Patient Blog: Megan O’Boyle

7/19/2017

I’m the mother of a wonderful girl named Shannon, who has a rare genetic condition called Phelan-McDermid syndrome. For years I steered clear of research information about her condition and focused on the daily challenges of meeting her needs. It never occurred to me that beyond being Shannon’s mom and caregiver I would play another vital role – as part of the research community helping her and others like her live a better life.

PIPC Patient Blog: Andrew Sperling on ICER Process for Tardine Dyskenesia Treatment Review

6/12/2017

NAMI is proud to be part of the movement to assess value of health care treatments and interventions, and to build an infrastructure for patient engagement throughout the healthcare system, particularly in the shift to value-based payment and delivery models. However, we think it’s crucial that any efforts to measure and assess value, incorporate the patient perspective, and consistently and meaningfully engage patients along the way.

PIPC Patient Blog: United Cerebral Palsy Discusses the Benefits of Patient-Centered Outcomes Research

4/24/2017

What is the first thing that comes to your mind when you hear the word, “research?” Maybe you think of book reports and term papers, or maybe your mind goes to Hollywood depictions of people in white coats running testing laboratories. Perhaps, you think of something else entirely.

Whatever your association with the word, research means many different things to many different people. It can sometimes be difficult to encourage people to engage as active participants in healthcare research, particularly if their associations with the concepts are less than positive.

PIPC Patient Blog: Abigail Lore

3/22/2017

College is stressful. Especially being new in college. Your routine is turned upside down, you are focused on finding new friends, involving yourself in different clubs on campus, and passing your classes. There is a new load of stress that comes with your new world. Add managing an invisible chronic illness to that laundry list and it seems next to impossible to fit into the college lifestyle like your peers.

I had 14 years of diabetes management under my belt when I was a freshman political science student at American University. I prepared and thought about my transition to college for weeks. I had registered with my school’s Academic Support and Access Center for accommodations, scoped out the dining hall offerings, and had the nerve-wracking talk with my roommate about the Emergency Glucagon Pen.

PIPC Patient Blog: Laurie Fenton Ambrose

11/15/2016

As a new president prepares to assume office in January, the continuing evolution of our health care delivery system — from a traditional fee-for-service payment system to a more “value-based” payment arrangement — shows no signs of slowing down.

Given the emphasis being placed on the “value of care” — who defines “value,” how the “value” of individual patient care is being judged and applied and how this assessment could deny access to treatments or services — is what motivated Lung Cancer Alliance and more than 60 groups representing patients and people served by health systems, to write an open letter to state that “value” should first and foremost be considered through the eyes of patients and people with disabilities — who are the ultimate beneficiaries of health care.

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