People with Empathy Blog

Thank you to everyone who joined us for our inaugural panel discussion on May 19. Feel free to fast forward to the 9-minute mark, which is when the panel begins, or feel free to watch us chit-chat first! 

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

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,

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 Empathy Rashieda Gluck, Senior Vice President, Global Clinical Operations Aurinia Pharmaceuticals Vij Senthilnathan, Senior Manager, Clinical Operations, PTC Therapeutics The panel will be moderated by Spandan Chakrabarti, Founder/CFO o

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

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 cond