Skip to main content

Posts

Announcement: CONVERSATIONS THAT MATTER: Virtual Panels for Viable Solutions

After three successful panel discussions since May, People with Empathy is excited to announce a comprehensive strategy as well as a new name for the series: Conversations That Matter. The series of dialogues will focus on the following areas of priorities:Development of New MedicinesData & TechnologyPrecision Medicine The Patient’s Role in Advancing MedicineProvider PerspectivesPayer PerspectivesWhy we are doing this: We believe that health care should be a connected, integrated ecosystem where patients are in charge, information is useful, and support is robust. But an ecosystem cannot be connected and integrated if its people are not. Bringing together highly qualified and diverse perspectives on aspects of health and health care is therefore key to creating viable solutions.What our Conversations That Matter panels will (continue to) do:Focus and expand on pressing issues.Create a solution-focused dialogue.Engage key stakeholders.Now, a question for you: How often would you li…

Recent posts

Free Plastic Bags are Great, But Protecting Access to Treatments is Important, Too

Accounting for its population density and size, California has done relatively well in fending off the novel coronavirus disease, thanks to the commitment of the people of the state to stay home and take precautions. But California’s success is due, in no small part, to local and state health care authorities working together in response, and to the leadership of Gov. Gavin Newsom. Newsom’s 83% approval rating for his COVID 19 response even outstrips the 79% approval rating of Gov. Andrew Cuomo of New York.
On Thursday, Gov. Newsom signed an executive order aimed at limiting administrative pain and cutting red tape while a statewide stay-at-home order is in effect. The governor’s order extends the expiration of drivers licenses by 60 days, allows businesses to meet the state’s environmental quality regulations through electronic filing, and suspends California’s 10-cent mandatory charge for paper or plastic bags provided by grocery stores since many local health departments have bann…

People with Empathy Partners with Patientwing to Promote COVID 19 Clinical Trials

People with Empathy is excited to announce that we have partnered with Patientwing, a platform dedicated to connecting patients with clinical trial sponsors and sites, to help recruit individuals to currently ongoing COVID 19 clinical trials.

Please visit covid19studies.org to find out how you can help. The dedicated site, launched by Patientwing, tracks all COVID 19 trials globally, and allows you to search for trials by geographical location, participant type, and more. Keep in mind that healthy, asymptomatic individuals are often eligible for study participation in addition to those who are symptomatic and/or those who have tested positive for the novel coronavirus.

Patientwing's statement on launch, in part, is below:
“Due to the large number of studies and volunteers needed, it is critical that we educate and help patients and volunteers find and enroll in appropriate studies. Additionally, it is going to be very difficult for researchers to find qualified participants, like …

Clinical Trials, Patient Relations, and Trust: Join Us on May 19 for a Unique Virtual Panel Discussion

Join our panel discussion on May 19 (11:30 am ET/8:30 am PT) as we review the current drug development process and explore the roadblocks and solutions and bring together industry, research, and patient perspectives. Find out how breaking down silos in health care is the answer. Register now. You can also submit questions when you register.

Clinical trials are publicly listed, conducted by dedicated scientists, and adhere to strict standards of care even for the placebo population. Yet, recruitment continues to be a difficult, arduous, uphill battle, especially for rare diseases and conditions that disproportionately affect women and people of color.

Our Panelists:
Christine Von Raesfeld, Patient Advocate & Founder/CEO, People with EmpathyRashieda Gluck, Senior Vice President, Global Clinical Operations Aurinia PharmaceuticalsVij Senthilnathan, Senior Manager, Clinical Operations, PTC Therapeutics The panel will be moderated by Spandan Chakrabarti, Founder/CFO of People with Empath…

BREAKING: California State Authorities Respond to Hydrochloroquine Stockpiling; Patients Can File Complaints

In response to appeals by People with Empathy and advocates statewide, California State authorities are now monitoring the stockpiling and shortage of certain medications in light of the COVID 19 pandemic keeping them from patients who need them for critical maintenance care, especially hydrochloroquine and chloroquine (brand name: Plaquenil), anti-malarial drugs used to treat lupus patients.
Because of the advocacy we helped spur and the leadership provided by Assemblymember Evan Low, Assemblymember Kansen Chu, and Sen. Jim Beall, the California State Department of Consumer Affairs (DCA) has informed state legislative staff and constituents that "patients who legitimately need hydroxychloroquine but are not being dispensed it should file a complaint for delay of therapy."

Complaints can be filed with the California State Board of Pharmacy here. We encourage any patients who have been denied a refill or who have otherwise been unable to

The full statement from the DCA is belo…

People with Empathy Calls on Gov. Newsom to Protect Access to Hydrochloroquine (Brand: Plaquenil) for Chronic Patients During COVID 19 Response

People with Empathy has released an urgent appeal from our founders Christine Von Raesfeld and Spandan Chakrabarti to California Governor Gavin Newsom and state legislators to protect access to lifesaving treatments for chronic illness patients light of the COVID 19 outbreak, particularly hydrochloroquine (brand: Plaquenil) for lupus patients.

We wrote, in part: We received particularly alarming news ... that Kaiser Permanente had sent notice to its members suffering from lupus that their treatment with hydroxychloroquine (brand name: Plaquenil) will be discontinued in order to preserve supplies for COVID 19 patients. Further, Kaiser noted in their notice to members that their prescriptions would not be filled even if their physician prescribed it. Patients were then “thanked” for their “sacrifice... that might save lives.” While in response to media reports Kaiser noted that it will make hydroxychloroquine available to both COVID 19 patients and lupus patients in critical condition, w…