Select Page

No matter what rare or chronic disease you or your loved one is living with, you need to know that ICER – an unelected, unaccountable, non-governmental body that appointed itself to determine the “value” of disease treatments – is holding a meeting on July 25th that could have a significant impact on patient access to effective treatments.

ICER has already targeted multiple sclerosis, Spinal Muscular Atrophy, and many other rare, complex, or chronic conditions. This week, ICER is targeting Duchenne. But the condition you represent could be next.

Help us ask ICER: Who put YOU in charge of my health care?

Make your voice heard, in person or online.

In person: Attend the ICER meeting in Cambridge, MA on Thursday, July 25, at 10:00AM. Advocates are gathering in person to deliver the message that rare disease patients are #NotWorthLess. Register for ICER online, but don’t worry if you get a “sold out” or “sales closed” message. The patient community is making a Patient Hospitality Room available where advocates and patients can relax, get something to eat, and watch a livestream of the proceedings. All are welcome to join. To make sure there is enough seating and refreshments for patients who plan to attend, it would be really helpful if you could confirm you are coming.

Online: Can’t make it to Cambridge? Make your voice heard on social media and tweet at @ICER_review asking: Who put YOU in charge of my health care? Below are some sample tweets.

  • Who put @icer_review in charge of my health care? #NotWorthLess
  • Dear @icer_review, who put YOU in charge of my health care? #NotWorthLess
  • Un-elected and unaccountable, who put @icer_review in charge of my health care? #NotWorthLess
  • Patients deserve to know: who put @icer_review in charge of my health care? #NotWorthLess

More about ICER

ICER uses a controversial, one-size-fits-all “value framework,” which ignores the experiences of real patients to measure what a patient with a rare or chronic condition is worth. ICER’s “reports” are routinely used by the insurance industry to deny patient access to these treatments.

ICER’s report on treatments for Duchenne could give both public and private insurers an excuse to deny patients access to these treatments. On July 25th, ICER is holding a public meeting in Cambridge, MA, on the Duchenne report, where a group of panelists who do not have expertise in Duchenne will vote to finalize the recommendations in the report.

A Pioneer Institute study found: “[ICER’s] review methodology could negatively impact elderly, the disabled, cancer patients, and those with rare diseases.” Read the study and press release.