Patients Rising is a Washington, DC-based non-profit organization with a very specific mission: we advocate for access to vital therapies and services for all patients with life-threatening and chronic diseases.  That is why Patients Rising is committed to bringing forward the patient voice as part of a balanced dialogue with providers, payers, policymakers and the advocacy community to address the complement of cost and access challenges Americans with serious diseases face every day.

One of the most pressing issues in health care today is the need to improve access to, and reimbursement for, precision and personalized medicines that enhance and extend people’s lives. As an organization committed to educating patients on the important policy challenges affecting their care, we are in a unique position to closely observe and make direct comments to all of the frameworks ICER proposes.

Based on past comment letters, it goes without saying that we respectfully agree to disagree with ICER’s use of the QALY as a metric in determining the value of treatments. This is problematic for us because even though the end goal is to use it as an economic cost threshold the patient is given a value of less than one in the determination.  This is an unfortunate casualty of the modeling and why we believe it should not be used in any cost model that could be used to determine patient access.

Our first concern is — where are the voting experts? An undisclosed number of consultations with a few experts, advocacy organizations and some patients does not adequately qualify the New England CEPAC voting panel to vote on the efficacy and cost provisions of these specific medicines that, if implemented, could affect the lives and quality of life of many psoriasis patients. At Patients Rising we would like to see more experts publicly brought into the voting process and not just listed at the top of a document as someone you had correspondence with without any context as to what that input included. With all due respect to the esteemed voting panel credentials, most of the members are not credentials I would want determining my access if I were a patient living with psoriasis.

In the age of personalized medicine, the choice to create topical reports limited in scope and generally focused on the most expensive — sometimes yet to be released treatments – it begs the question, why? We are in an age of personalized medicine, and psoriasis is no different.

I will close with a story. Our friend Dave in Bethesda, Maryland has psoriatic arthritis. He was treated every six weeks and living a high quality of life, managing a restaurant and caring for his aging father. He had no side effects. He and his doctor were perfectly happy with his plan. But one day – out of nowhere – his insurance decided Dave now needs his treatment every eight weeks. His doctor has been fighting with his insurance company on Dave’s behalf, even attempting to ask for an increase in his medication doseage every eight weeks. So far, no luck.

But guess what? When Dave was treated every six weeks his pain was in check. He would get some minor aches a few days before treatment, maybe. But now he is in a low grade constant pain because the final two weeks he has to wait are so painful that the medication is no longer as effective.

No, Dave’s problem is not the result of ICER’s report. But Dave’s problem is the result of insurance companies and bureaucratic entities practicing medicine for the doctors who are on the front lines with patients. Now Dave is no longer able to work as long, enjoy his down time and take care of his father in the same way he was on the treatment that worked for him.

How can we as a county raise the bar for patient care, when people like Dave are suffering unnecessarily? This is the result of impersonal guidelines like ICER’s being implemented as a method to control costs without any firsthand knowledge of the patient. There must be a way to develop a framework that focuses on care concerns first because if we fail in focusing on the care, then we fail. There is no value added to a decision by creating a value cost framework missing all the nuances of true patient-centered care. We need a value care framework that obviously considers cost, but is created with physician experts and their patients at the forefront and voted on by a respected group of peers well versed in the treatment of the disease being reviewed.

Thank you in advance for considering our views.


Terry Wilcox

Co-Founder & Executive Director, Patients Rising