Schizophrenia & Psychosis Action Alliance

How can we find better treatments for the “negative” symptoms of #schizophrenia? A U.S. Food and Drug Administration meeting tomorrow will convene researchers, drug developers and advocates to discuss the challenges of developing these medicines. Negative symptoms refer to a loss of normal functions in people with schizophrenia, such as social withdrawal, loss of interest in activities, emotional “flatness” and limited speech. Up to 60% of people with schizophrenia experience them, but current medicines do little to help. See the meeting agenda here: https://bit.ly/3A955AL; Zoom info is provided for those who want to dial in. Our Voice of the Patient Report (https://bit.ly/3Qswinf) shared heartbreaking stories from people living with schizophrenia and their families about the severe disability negative symptoms can cause. We applaud FDA for listening to our community.

We’re proud to release Roadmap to Recovery, the new report from our inaugural SPRING 2024 Summit! Read it here: https://bit.ly/3YEHcev. The report charts a course to transform our broken system of care, created through the groundbreaking collaboration of 125 stakeholders – including those diagnosed with #schizophrenia and their care partners; clinicians; judges; and community leaders. Stay tuned for more news about next year’s SPRING Summit and the programs we’re launching to shatter the barriers to treatment, survival and recovery for people with schizophrenia.

It’s official! #FDA has announced Nov. 19 for its joint advisory committee meeting to re-evaluate the #clozapine #REMS program, which has created significant access barriers for people with schizophrenia. The Drug Safety and Risk Management and Psychopharmacologic Drugs Advisory Committees will focus on “possible changes” to the REMS “to minimize burden on patients, pharmacies and prescribers while maintaining safe use of clozapine.” See initial meeting info here: https://bit.ly/4fHbJOY. S&PAA has been working with the schizophrenia community to alert FDA and Congress to the dangers of the REMS program to people who rely on clozapine for their recovery and survival. (Most recent letter here: https://bit.ly/4dz2XAP) It has taken much work and many voices, but our campaign has successfully brought this issue to a head. 

We are thrilled to welcome 5 new members to our Board of Directors! They include a health advocate who lives with schizophrenia, 2 psychiatric clinicians, an educator and a state district court judge – all of whom will broaden our expertise and deepen Board representation of those who are diagnosed with schizophrenia, care for and/or work with people who live with the severe brain disease. We could not have asked for the partnership of more seasoned, insightful experts as we work to advance systemic change and promote recovery for people living with this disease. See today’s announcement here: https://lnkd.in/eRfEjza6

#Cannabis use significantly increases the risk of developing a #psychosis disorder such as #schizophrenia. The more frequent and heavier use, the higher the risk. Even more sobering: it’s estimated that up to one-third of psychosis disorders might be prevented if heavy cannabis use were stopped. Yet around the country, states continue to legalize it for recreational use. Cannabis is far from harmless, and we oppose its legalization for recreational use. In states where it’s legal, we call on states to use taxes on cannabis to pay for the health harms it causes, which are currently borne by families, hospitals, governments and health insurers. See our position statement: https://bit.ly/4cHlxqv. https://lnkd.in/g48tevVu

People with #schizophrenia and other severe brain diseases face significant stigma and discrimination that can delay diagnosis, block access to treatment and cause social isolation. For people in racial and ethnic minorities, the discrimination can be even worse. Pathways to care for people of color with schizophrenia are often more convoluted and coercive than those of their White counterparts, including more frequent emergency room visits, involuntary hospitalizations and police encounters. Due in part to historical and ongoing medical discrimination, people of color in the US also have a heightened distrust of the healthcare system, making them less likely to seek care.   July is National Minority Mental Health Month, an important time to raise awareness of these dangerous disparities. Funding from federal, state and local resources is urgently needed to promote community awareness and education to reduce the stigma surrounding mental illness; train healthcare providers to use culturally sensitive and structured diagnostic methods and treatments; and support policies that ensure equitable access to mental health resources. Learn more: https://lnkd.in/eMUgPF6c #NMHM2024

We are stunned and dismayed that SMI Adviser – an invaluable source of information and resources for mental health clinicians, caregivers, advocates and people living with severe mental illness – is shutting down due to the loss of its federal funding: https://bit.ly/4eEpfm3. For the past 6 years, SMI Adviser has been a key resource for timely, relevant and trustworthy information for all of us who live with and care about people with severe brain diseases. It helps ensure providers have the most up-to-date treatment information and the tools to help patients and families navigate diagnosis and treatment. It also helps families navigate the complex world of severe brain diseases so they can work with their providers to increase their chances of successful health outcomes. SMI Adviser has been funded by the Substance Abuse and Mental Health Services Administration (SAMHSA) and administered by the American Psychiatric Association. Its shutdown on July 8 creates yet another void for a population that already suffers discrimination, stigma and significant barriers to treatment. The funding has evaporated, yet the need for these services continues to increase.

Earlier this year, we announced an exciting new partnership with Psych Congress – the nation’s number one conference on practical psychopharmacology. We’re thrilled to represent the voice of the schizophrenia community at this important clinician conference, taking place Oct. 29 through Nov. 2 in Boston. As part of our Psych Congress partnership, members of our community can use code SPAA for a $50 discount on registration. You can learn more and register here: https://lnkd.in/e7nPfcTF

This year’s Johns Hopkins Schizophrenia Symposium was a terrific opportunity to engage with world-renowned experts on the cutting edge of #schizophrenia research as they work to inform better care – and an eventual cure – for schizophrenia. The annual symposium provides a unique forum for connecting with these leading researchers through open panel Q&A and roundtable lunch discussions. It’s also a great chance to connect with fellow advocates and families of people living with this severe brain disease. S&PAA’s Director of Community Engagement, Nicole Gillen, was proud to represent our organization at the meeting. Key research she found promising: Scientists are studying neurons and looking at targeted therapies to better understand why some people don't respond to certain treatments. The end goal: to build more useful treatment approaches and help reduce the barriers to treatment success.