July is the month where we as a nation commemorate the
Declaration of Independence of our country. On July 4, 1776 the
Continental Congress declared that the thirteen American
Colonies were no longer subject to the monarch of Britain and
were now united, free, and independent states.

What does this have to do with patient advocacy, you ask?

Absolutely nothing or everything. I know you thought the fights was over after you
raised the funds for the innovation, engaged in the clinical trial process, and then
fought to get approval from the FDA. But if an outside body is allowed to determine who will have access – then what was it all for?

Our battle has only just begun.

Today we are at a similar crossroads as a nation as we decide whether we go the way of the British and adopt their system – a socialized medicine system using the QALY as our metric in determining what treatments are worth and if those that need them are worth the price. Rather than patients and doctors, a national price control body will hold the fate of all future medical innovation and who will receive it.

The QALY has many critics here and abroad, and yet, we have a self-appointed
institution called The Institute for Clinical and Economic Review (aka ICER) trying to import this system here. Their methodology is a direct threat to the independence that drives our medical innovation and provides hope for many patients, especially those in the rare disease community.

ICER is dangerous. You may read headlines where they claim they are the ‘mouse that roared’. As someone who founded the website ICERWatch.org and has been following ICER for more than three years … they are not a mouse. ICER is a Trojan Horse and they have been given a war chest in excess of $19,000,000 to spread their influence.

No matter what rare or chronic disease you represent, if you believe in a future without ICER calling then shots — we must all join forces to RISE against them. Read on to learn more about ICER and how you can get involved. Here is a link to an online advocate registration form.

Terry M. Wilcox
Co-Founder and CEO, Patients Rising Now