Concerns over CMS’s Draft National Coverage Determination (NCD) for Alz: Patients Rising Now submitted a letter to CMS in response to the NCD for monoclonal antibodies used to treat Alzheimer’s Disease. Concerns from patients include: CMS overruling the FDA’s authority over drug safety and efficacy; the requirement of clinical trials disregards realities faced by Alzheimer’s patients; stifling of future medical innovation; and more.
Right to Repair puts patient safety at risk: Patients Rising Now has spearheaded a coalition of 24 patient advocacy organizations to underscore patient concerns over misleading “right to repair” legislation across states. This would allow repair technicians not held to the same FDA safety standards as medical device manufacturers to operate on equipment like CT scans. Misdiagnosis and inaccurate scans could occur if allowed. More details in our letter, and in this Feb. 25 Forbes we are quoted in.
Telehealth Policies Needed to Address America’s Digital Healthcare Divide: We’ve heard from patients, particularly those in the rare disease community who need to see specialists not within traveling distance, about the critical need for telehealth. Pay parity and broadband internet access are just two of many underlying barriers for patients, which we outline here.
The Latest on the Patients Rising Podcast: On our latest episode, Speedy Rare Disease Drug Reviews, dive into two major issues that impact the rare disease community: the reauthorization of PDUFA and Dr. Califf’s confirmation as FDA Commissioner. For patients with unmet medical needs, PDUFA is vital to expediting timely reviews of necessary drugs.
- Other recent weekly episodes:
- Hear from North Dakota caregiver Beth Steckler (34:34). She’s the mother of two children with hereditary pancreatitis, a rare genetic condition, who explains how her children’s illness impacted their education. However, they did not receive adequate support from their school district and consequently, did not complete high school.
- You can listen to these episodes and subscribe to Patients Rising Podcast via your favorite podcast app, like Apple Podcast, Spotify, Google Podcast
- Patients Rising Podcast is published every Friday with the purpose to update patients on issues in Washington that affect them. Each week patients are interviewed on policy challenges that come with treating their disease, along with new information on the latest health issues and legal help for patients.
Every month we hope to lend a patient lens to legislation and regulation. If Patients Rising can be of assistance to your office, please reach out to me directly via firstname.lastname@example.org or at 202-750-4331.