Schizophrenia & Psychosis Action Alliance

It’s been an honor to give special attention to our caregiver community during National Family Caregivers Month. Here’s a recap of the month’s activities as November draws to a close: ?? Honoring Caregivers! Our In the Name of Love campaign featured powerful stories from those who are helping their loved ones navigate the difficult journey of schizophrenia: https://lnkd.in/eEgYECsM ?? Caregiver Support Groups! We’re launching new caregiver support groups just in time for the holidays, as we know how difficult this time of year can be.?Set up a profile?on HeyPeers to join in: https://bit.ly/3Vb1Hx1 ?? New Position Statement! We published our position statement on the need to provide formal support for caregivers, outlining specific ways communities, states and the federal government must support caregivers – for the sake of their health, their finances and their loved ones:?https://lnkd.in/eMUgPF6c What does all this mean? We appreciate you and are here to support you. We hope our efforts make your lives just a little easier, and that knowing we are fighting for you gives you strength.?

“Our lives were changed forever when we received a call from our youngest son. Shock does not adequately describe my feelings when he told me he had been...diagnosed with schizoaffective disorder. The challenges have been numerous...all the problems that come with this horrible condition. Today he is in recovery – not cured, but over the years, with a solid treatment plan, he has learned to manage the symptoms and live a meaningful life.” Maye Jepson’s story is one of the many moving stories people from our community have shared this month as part of our In the Name of Love campaign to honor caregivers. See Maye’s story and many others at https://lnkd.in/eEgYECsM

? There’s still time to register for our Dec. 12 Innovations in Treatment webinar: Beyond the Visible: Understanding positive symptoms in schizophrenia: https://bit.ly/40NkBOh For years, treatment development has lagged far behind our community’s needs. But innovations are happening – and this webinar will explore them, covering medication, other treatments and even technology! This won’t be your typical webinar – we’ll feature a diagnosed person, a caregiver and a clinician?to provide insights – and there be lots of time for questions and discussion! Click here for more information and to register: https://bit.ly/40NkBOh. While you’re there, you can register for all three webinars in the series – just use the “Register” buttons for each session.?

?? Register now for our Dec. 12 Innovations in Treatment webinar: “Beyond the Visible: Understanding positive symptoms in schizophrenia: https://bit.ly/40NkBOh. For years, treatment development has lagged far behind our community’s needs. But innovations are happening – and this webinar will explore them, covering medication, other treatments and technology. This isn’t just any webinar – we’ll feature diagnosed people’s perspectives side by side with those of clinicians and caregivers to provide an interactive environment. Go here for more information and to register: https://bit.ly/40NkBOh. While you’re there, you can register for all three webinars in the series – just use the “Register” buttons for each session.?

?????? A joint FDA Advisory Committee voted today that the burdensome REMS blood-testing requirements for #clozapine are not needed for safe use of the medicine – saying that “the bigger issue is undertreated #schizophrenia.” While the committee’s decision still must be approved by FDA, it is an enormous victory for people with schizophrenia – many of whom have suffered severe relapses and even death after they were refused their medicine due to the #REMS. Committee members and even #FDA staff said the rallying cry from our community made them sit up and take notice. “The testimony was very moving and certainly moved me,” one member said. An FDA staff member added, “What you shared today will have an impact on regulatory decision making.” S&PAA has played a leadership role in amplifying the concerns of our community to FDA, and today was proof that we CAN make a difference. A huge THANK YOU to everyone who participated in this effort – especially to those living with this disease, whose compelling stories of both struggle and recovery made a powerful impact. S&PAA Board Member Dr. Rob Laitman testified that his son “is living a meaningful life” thanks to clozapine. Today’s vote brings us a giant step closer to making that possible for many.?

S&PAA’s Dr. Arun Nagendra shared her research today on the needs of our #schizophrenia community at two key sessions of the?Association for Behavioral and Cognitive Therapies annual conference. After analyzing information from an S&PAA caregiver survey and from those who used our Resource Line, she called for development of more resources to support caregiver wellbeing. (Most currently focus on how caregivers can support their loved ones.) In a second session, Dr. Nagendra shared recommendations for better serving Black people with schizophrenia, who tend to experience worse treatment outcomes than their White counterparts. Ensuring healthcare providers understand the needs of the schizophrenia community is a critical part of our work. We are here to amplify your voices!?

It has taken much work and many voices, but our campaign has successfully brought this issue to a head.?Tune in?next?Tuesday for FDA’s joint advisory committee meeting to re-evaluate the #clozapine REMS program. The REMS has created enormous access barriers and resulted in significant harm for people with #schizophrenia, and S&PAA has actively been working with other organizations to alert FDA and Congress to its dangers. See the joint letter we all submitted to FDA:?https://lnkd.in/eCVFYQ4f. The advisory committee meeting will focus on “possible changes” to the REMS “to minimize burden on patients,?families,?pharmacies and prescribers while maintaining safe use of clozapine.” S&PAA has played a leadership role in amplifying the concerns of our community to the FDA, policy makers and industry partners through our Patient Focused Drug Development meeting, Congressional Briefing and overall advocacy with allied organizations.? We’ll be your eyes and ears on site, but anyone can join the live broadcast. Click here for more info:?https://bit.ly/4fHbJOY

“My son Luke is 16. For six years, he has had mental health challenges that were brushed aside by our broken healthcare system. I never stopped fighting for him, and those efforts paid off when he was given a #schizophrenia diagnosis earlier this year. With the help of [medication] and psychiatry, his quality of life has improved dramatically. I gain strength in knowing I fight not only for Luke, but for others. I can see the results! I have hope in knowing those with schizophrenia can lead productive lives!” Read Matthew Petersen’s wonderful caregiver story and those of many others in our community – all part of our In the Name of Love campaign: https://lnkd.in/eEgYECsM. You’re the reason we advocate for a brighter future for everyone who lives with schizophrenia!

“The presence of other families like ours gives me strength. The commitment and love among family members fills me with hope. I look forward to a day when the stigma toward people with mental health struggles will be banished.” This caregiver’s hopeful words are just one of the many emotional and inspiring stories we’re featuring this month in our In the Name of Love campaign: https://lnkd.in/gH3mxsbU. You’ll also find a host of caregiver resources we’ve created to support your journey. Because we see you, and we honor you – In the Name of Love.?

Congratulations to Intra-Cellular Therapies on its positive Phase 3 results for lumateperone 42 mg, which reduced the risk of symptom relapse in adults with #schizophrenia. Thanks for all you do for people living with this brain disease!?