The Daily Rise: Wednesday, May 25

Instant Replay: #ICERWatch

Thank you to everyone who tuned into yesterday’s news briefing on how proposed value frameworks threaten patients’ lives and health. Together with Aimed Alliance and the Center for Medicine in the Public Interest, we challenged the efforts by the Institute for Clinical and Economic Research to deny patients with multiple myeloma access to life-saving treatments.

“ICER’s limits on access to new therapeutics would result in 44,000 fewer lives saved for patients with multiple myeloma over a five year period,” said Robert Goldberg, Ph.D., of the Center for Medicine in the Public Interest who co-hosted the briefing. “Further, ICER’s proposed price cuts would eliminate 60 percent of drug discovery, having a huge impact on the future of the fight against cancer.”

Stacey L. Worthy, Esq., Director of Public Policy at the Alliance for the Adoption of Innovations in Medicine (Aimed Alliance), also a co-host, added, “ICER is proposing a system similar to the one used in the UK, where patients are less likely to survive certain types of cancer than those in less developed countries, such as Malaysia and Indonesia. U.S. patients with cancer can expect the same level of deterioration in care if we let ICER define what represents value in healthcare.”

If you missed yesterday’s briefing, check out our  Instant Replay.

State Spotlight: California’s Price Control Initiative

This November, California voters will consider whether to adopt price controls on patients’ treatments. We ‘ve expressed concerns that such proposals ultimately deliver minimal cost savings to patients and risk stymying innovation.

Opponents of the measure have recently published a helpful infographic, which details who, how and what the measure will mean for patients.

“The misleading Rx measure only applies to a limited number of state drug purchasing programs, while excluding the vast majority of Californians,” say Californians Against the Misleading Rx Measure. “And for the few programs it does cover, it could actually increase the cost of prescription drugs, limit patient access to medicines, and increase taxpayer costs.”

Veteran Patients Battle the VA

Healthliine.com looks into the lingering effects of Agent Orange, the toxic herbicide used during the Vietnam War.

Decades after the U.S. military sprayed the deadly defoliant on the Southeast Asian battlefield, many American veterans are suffering serious health issues. And as challenging as it is to fight their health issues, many must first battle the Veterans Administration to gain access to the proper care and treatment.

“It took two generations and a lot of heartache among the Vietnam veteran community, but the VA’s “presumptive list” of diseases that are caused by exposure to Agent Orange now includes everything from non-Hodgkin lymphoma, prostate cancer, and multiple myeloma to Parkinson’s disease and ischemic heart disease,” Jamie Reno writes at Healthline. “But many veterans exposed to Agent Orange and their loved ones are still fighting for the disability coverage they believe they have earned.”

Among the diseases currently excluded from the VA’s presumptive list is glioblastoma, a deadly form of brain cancer.

“The VA has granted benefits to veterans who were exposed to Agent Orange and have glioblastoma a number of times since at least 2004,” says Robert Walsh, an attorney who represents veterans in disability cases. “If VA accepts one medical opinion, if they grant just one case, how do they justify forcing all the other veterans to relitigate it over and over?”

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.

The latest about patient advocacy

Join our Email List

Get notified about new stories and resources to empower patients and caregivers.