Julius Mwangi’s Post

Good afternoon, and welcome to our next 🚨What’s Next Wednesday?: Spotlight on Health Equity at the Holland & Knight Education and Health Equity Forum !! Today is the Holland & Knight Education and Health Equity Forum, part of the 53rd Annual Legislative Conference (ALC) in Washington, D.C. The ALC is the top public policy event addressing key issues impacting African Americans and the global Black community. I’m here to discuss healthcare inequities, especially in rare diseases, and work toward solutions. What’s New: The ALC, running from September 11-15, 2024, is hosted by the Congressional Black Caucus Foundation. This year’s focus is on education, health equity, and other critical issues. Today’s forum is a chance to engage policymakers, expand networks, and celebrate Black culture. It highlights disparities in healthcare access, offering insights into legislative efforts to bridge these gaps. Why It Matters: Healthcare disparities are a major challenge for Black communities. For example, Black Americans are less likely to find bone marrow donors, impacting survival rates for those with rare diseases like Hemophagocytic Lymphohistiocytosis (HLH)—(Histiocytosis Association 😉) This forum advocates for inclusive policies and funding to address these inequities, ensuring lifesaving treatments are accessible to all. What’s Next: Beyond today’s forum, work continues. The ALC begins partnerships and initiatives aimed at dismantling healthcare barriers. Advocacy will focus on better representation in clinical trials, increased research funding for rare diseases affecting communities of color, and policies for equitable access to care. How You Can Help: • Raise Awareness: Share this post to highlight healthcare equity issues. • Support the Initiative: Help fund research and advocacy to close healthcare gaps in underserved communities. • Get Involved: Attend events, contact representatives, and volunteer with organizations focused on healthcare reform. Let’s work together to ensure no one is left behind in healthcare. What healthcare equity issue do you think needs more focus? Share your thoughts! Register here 🔗: https://lnkd.in/eggFbz2x 👨🏾💻: https://lnkd.in/eEPb8wvw #WhatsNextWednesday #RareDisease #HistiocytosisAwarenessMonth #Histiiocytosis #HLH #BMT #StemCells #HealthcareEquity #ALC2024 #RareDiseaseAdvocacy #AdvocacyInAction #HealthForAll

Congratulations to Nao Hagiwara, Ph.D., Professor in PHS and Director of the Program on Health Disparities and Community Engagement Research, on her new funding from the UVA Cancer Center’s Community Outreach and Engagement (COE) Research Pilot Funding. The title of her project is "A community engagement approach to the development of implicit bias training materials for healthcare providers."   Dr. Hagiwara provided a brief overview of the project: “Patients who experience positive interactions with their providers are more likely to adhere to providers’ recommendations, including vaccination, screening, and sustained lifestyle modifications, despite structural-level barriers. Yet, Black people often experience poorer patient-provider communication than White people partially due to provider bias. The goal of this team research is to assess the feasibility of two novel, theory-driven training materials by taking a community engagement approach.” Congratulations Dr. Hagiwara and team! <clap emojis> University of Virginia #uva #newgrant

We need to move forward with thoughtful collection of race-based data to understand inequities and close gaps in care and health outcomes A nice article in today's The Globe and Mail featuring colleagues Aisha Lofters and Andrew Pinto https://lnkd.in/gfsgEwBg Here are a few resources that may be useful for jurisdictions and organizations interested in taking action: -our commentary in Canadian Medical Association Journal on collecting race-based data through health card renewal https://lnkd.in/gdNuM4rK -key learning from our research on implementing sociodemographic data collection in our primary care practice Unity Health Toronto https://lnkd.in/gayJvT9A -a new tool to support practices to collect sociodemographic data directly from Upstream Lab https://lnkd.in/gQ2QeCQe cc: University of Toronto, Department of Family and Community Medicine MAP Centre for Urban Health Solutions

I discussed this article and the work of accompaniment with 2nd year med students in my structural competency class this week. There is so much we can learn and do together to improve health equity!

I'm not one for hero worship, but if there ever was one, I will always remember Paul Farmer. His writings not only helped give me a framework for understanding the stark inequalities across the world I grew up seeing, but also gave me hope that sometimes (sometimes!) the powers that be actually listen to affected communities instead of persisting in their econ-driven, technocratic echo chambers. I live by the things I have learned from this work every day. I continue to be guided by the Alma Ata Declaration of 1978's commitment to community-based primary care, to learn from the Global Public Investment Network work in democratizing the flow of global health dollars, and to partner with like-minded people to get things done. #thinkglobalactlocal

Our CEO Amy Schmidt, along with other advocates, has been meeting with our Federal Congressional Representatives on behalf of families living with Alzheimer's Disease to ask for the following: 1) Please sign onto our appropriations support letters for our appropriations ask for FY 24:  RESEARCH: $321 million for Alzheimer's research at the NIH  BOLD: $35 million continued funding for BOLD 2) Please Co-Sponsor the National Alzheimer's Project Act (NAPA) Reauthorization and Alzheimer's Accountability and Investment Act (AAIA) :  A. The National Alzheimer’s Project Act (which was signed into law in 2011) NAPA authorization is set to expire in 2025, the bipartisan, bicameral NAPA reauthorization Act will extend the National Alzheimer’s Project Act through 2035. B. Please support the swift passage of the bipartisan Alzheimer's Accountability and Investment Act this Congress. The AAA will expire in 2025, and AAIA would extend the requirement to 2035. 3) Please cosponsor the bipartisan BOLD Reauthorization Act. The BOLD Act has led to great progress in strengthening the Alzheimer’s public health infrastructure across the country since 2018 and is set to expire on September 30, 2024. And YAY... Last week this happened https://lnkd.in/gDwbkGAY THANK YOU TO @SenJeffMerkley for his ongoing support. #ENDALZ

Department of Defense Commits $500 Million for Women’s Health Research – A Significant Opportunity for VA-affiliated research and education nonprofits (NPCs)! Pentagon, US Department of Defense, Office of the Secretary of Defense for Policy has announced a landmark $500 million annual commitment to advancing women’s health #research, focusing on conditions that uniquely, disproportionately, or differently affect #women. This initiative is part of a broader strategy to enhance the medical readiness of women in the military and improve care for women #Servicemembers, #veterans, and their families. This new funding commitment, largely distributed through the Congressionally Directed Medical Research Programs (CDMRP), presents a significant opportunity for NPCs to engage in impactful research by submitting grant proposals that address critical health issues facing women veterans. Key initiatives include: - A new policy ensuring women’s health is a priority at every stage of research, effective October 1, 2024. - Standardized funding announcements to encourage research on women’s health conditions, such as musculoskeletal injuries, gynecological cancers, and chronic diseases. - Increased investment in women's health research through the DoD’s Small Business Innovation Research (SBIR) and Small Business Technology Transfer (STTR) programs. NPCs supporting sites with a significant female veteran population are encouraged to explore these new funding opportunities and contribute to groundbreaking research that will improve health outcomes for women across the military and VA systems. https://lnkd.in/e23aHSNb

Please register and repost! I am honored to be co-chairing (with Shiriki Kumanyika and Jamie Chriqui) this very exciting and relevant workshop on obesity-related policy, systems, and environmental (PSE) research in the US. This is a collaborative effort from NIH, the CDC, and @NCCOR. The workshop will examine best practices in obesity-prevention research with specific attention to community engagement and systems change through an equity lens. The workshop aims to advance the field by highlighting opportunities for the design and rigorous evaluation of both proximal and distal PSE interventions. https://shorturl.at/hDEWX

Friday Funding Opportunity! Notice of Special Interest: Analysis of Existing Linked Datasets to Understand the Relationship between Housing Program Participation and Risk for Chronic Diseases and Other Conditions (R01-Clinical Trial Not Allowed)  Submissions for this NIH funding opportunity will be accepted through several NIH Institutes, including NIMHD. Applications in response to this NOSI must propose to evaluate existing datasets with housing program participation data that can be administratively linked to health outcome data. Projects that propose to evaluate longitudinal health outcomes are particularly encouraged.   The next deadline is October 7, 2024.  Learn more: https://lnkd.in/ecT5KwzY #fundingopportunity #housingequity #socialdeterminantsofhealth #grantfunding

Is it time we took a more nuanced view to inform Australian policy for care at the end of life? Yes for many the place where care is received is important, but there are many other factors that people consider. I was privileged to be involved in an #NHMRC funded program of work led by our colleagues at The Centre for Health Economics and Evaluation (CHERE) UTS Faculty of Health in partnership IMPACCT Centre consumers and Jane Phillips finding that symptom management, carer needs and cost were more important aspects of care than location of care and death. This challenges us to ensure that care in hospital, palliative care units, and aged care also can meet these needs; and for those who wish to die at home this is not at the expense of inadequate clinical and social care, and without equipping the community with the know how to offer compassion and support. The right place at the right time with the right care. #endoflife #palliativecare #discretechoiceexperiment https://lnkd.in/edamJbJD