COVID-19 Health Equity Task Force Meeting | April 9, 2021 | Part 1 of 2

good afternoon everyone welcome to the second meeting of the covet 19 health equity task force i am min wendt and i am the designated federal officer for the task force we have a full agenda today this is a public meeting we will have officials from the department of health and human services to provide remarks as a reminder this meeting is being live streamed and recorded and we are providing american sign language interpretation for those with hearing impairment with that i will turn it over to dr masala london smith chair of the task force thank you so much dr wen and good afternoon everyone um it is a pleasure to welcome you to this second meeting of the federal corbyn 19 health equity task force right up top i want to take a moment and recognize secretary becerra and assistant secretary levine thank you both for joining us we’ll be hearing from them shortly to provide us with updates from hhs we’re very much appreciative of the agency’s support of the work of the task force so the objective of today’s meeting is to discuss interim recommendations on equitable coven 19 vaccine access and acceptance but before we begin that urgent work i think it’s important for us to pause and just anchor in the context and in this moment in these past few weeks we have again born collective witness to intolerable hate we must stand in solidarity with everyone whose lives have been forever altered by hate-filled violence we must be motivated to achieve transformative change there is an absolute and critical role for responsive and proactive policy to meet this moment this is essential for our nation’s public health so i think it’s appropriate to remind us of our charge as a task force we have been asked to provide specific recommendations to the president through the coordinator of the kovan 19 response to mitigate health and social inequities that have quite frankly just been made all the more evident by the pandemic we know that those inequities are driving unequal burden of risk suffering as well as sequelae in communities that are minoritized marginalized and medically underserved it is also imperative that we recognize and name the historical and contemporary underpinnings of these structural realities we know the communities that are always the first to be forgotten especially especially when resources are in short supply so as we hold together our work as a task force we are mindful of the broad broad lens that is needed to center equity across the most affected groups people with disabilities those who are just disinvolved older americans are rural neighbors mixed status families queer people people of color indigenous people those and the margins of the economy and others and of course to recognize the compounded challenges often found at the intersections of these identities and now we see the unacceptable rise in xenophobia towards asians asian americans native hawaiians and pacific islanders and in his first week in office president bain signed a memorandum condemning and combating racism xenophobia and intolerance against asian americans and pacific islanders the fear of racial violence is far too great for far too many so in addition to making recommendations on the equitable distribution of coven 19 resources such as ppe and testing treatment and vaccines and absolutely looking ahead to resilience in our recovery this task force is also charged with considering guidance specific to cultural responsiveness best practice language access and sensitivity towards asian americans and native hawaiians and pacific islanders in the federal government’s coven 19 response so as a task force we take our charge very seriously we will continue to push for the disaggregated and targeted data that are necessary for a data-driven response data invisibility is not acceptable and we will elevate the positive assets and the wisdom often ignored or undervalued in the hardest hit communities as we generate recommendations and guidance so return this to today’s focus which is about equity in terms of vaccine access and acceptance a vaccination campaign will only be successful when it reaches everyone vaccines need to be free and they are there are no out-of-pocket costs they also need to be easy and convenient to access privacy must be protected and people absolutely need their questions asked and answered so they can have the information they need to make the decisions there are currently three coven 19 vaccines authorized for emergencies in the united states the data have all been reviewed free of political interference by independent scientists and found to be highly efficacious on the things that matter most preventing severe illness hospitalization and death after full immunity and millions and millions of vaccinations have been administered safely to date so there is much to celebrate right we see evidence of real world effectiveness and hope as vaccine supply increases allowing eligibility windows to open up sooner for all adults the federal administration has been able to reset new targets inspire optimism towards a new normal even as we remain vigilant in the home stretch yet the benefit of scientific discovery has been uneven goal six of the national strategy calls our attention particularly to race and place these are two consistent drivers of health opportunity in our country and we see both race and place correlated with vaccination to date if we look at the national data on race ethnicity people of color are getting vaccinated at rates lower than their populational share if we consider zip code which we also know is a stronger predictor of health and genetic code in the us we see similar patterns people who live in colonies at the greatest social risk are also getting vaccinated at lower rates we have to we must remain laser focused on improving the quality and the completeness most certainly of our equity data we discussed this at length at our first task force meeting we’re encouraged to see progress on the data collection and reporting front but in addressing how we collect protect and use data we are committed to continuously engaging with those who have been made invisible and otherwise harmed by data to date so equity takes intention it is at the center of the federal vaccination uh program you know many states tribes territories local jurisdictions also following best and promising practices the federal government has set up federally run community vaccination centers and hard-hit areas provided and continues to provide vaccine supply directly to community health centers standing eligibility providing vaccine supply directly to local pharmacies launching hundreds of mobile clinics to meet people where they are in addition to vaccinating our dialysis patients and importantly the rates of demographic data reporting across the federal vaccination channels is very high this is due to inter-agency efforts fema dod va cdc hearst and many others and we see early success vaccinating people in the highest risk groups and areas through these programs for example over 60 percent of people vaccinated at federally run vaccination centers and that community health centers identify as people of color and 45 percent of pharmacies in the federal retail pharmacy program are located in hard hit neighborhoods we know vaccination venue matters we know attention to location is necessary but insufficient our awareness must include those structural barriers that need to be overcome you know whether that is about registration challenges transportation limitations the need to build to sustained trust so here again is where resource partnerships are just key with community and faith-based leaders and others you know the coven-19 community corps officially launched working together with trusted messengers who are leaders in their communities you can help right facilitate additional vaccination venues assist with registration and transportation support targeted geographic eligibility and flexible hours to counter the misinformation and disinformation campaigns that often go unchecked and of course to uplift the need for time off site accessibility and language access so there is still much work to do you know the efforts to achieve equity through these federal vaccination channels they’re not intended to replace the equity work of course that states and local governments need to lead with their vaccine allocation and the federal administration is committing substantial resources again with the heavy focus on local partnerships to expand access to cleveland 19 vaccines and to build vaccine confidence so as a task force we are eager to share guidance on coven 19 resource equity and we will be deliberating today at interim recommendations that may be modified ahead of a final report so although today’s discussions will largely focus on the age groups for whom covet 19 vaccines are currently authorized we do anticipate some unique considerations specific to pediatric vaccination and may be getting some of those conversations today as well we know there are other issues on the horizon the emergence of so-called vaccination passports questions regarding employer mandates issues of mental and behavioral health the syndrome of law and kobe just to name a few certainly all with equity implications so dr one said we have an ambitious agenda to cover today we will be hearing from three guest experts and thank you in advance for joining us ms samantha ortega dr nadia islam and dr kara iyers it will all provide additional relevant content expertise you know the work of the task force is organized across four subcommittees and each of the task force subcommittees will share interim recommendations for group consideration ahead of our public comment we will deliberate further as needed ahead of task force voting so i will do so again later but i want to say thank you right at the top to the federal staff team the task force members your work has been tireless the sprint has been quick to get us to today many many subject matter experts have also joined and shared their insights along the way we’re grateful for that so this is april as national minority health month i want to reiterate what we all know about equity work you have to show up and you have to listen you have to learn we need to approach this with humility communities remain the best experts in what they need so each of you the public members attending today represent the richness of communities across the country i continue to remain grateful to be in this work with you with that i’ll stop and turn it back to you dr what thank you so now i will conduct a member wrong call this is for the meeting record so when i call your name you may respond with present myra alvarez [Music] joseph president jonay condon president antonio martinez president marcella nanez smith homo ventus president bobby watts president hey young yoon president madam chair we have a quorum for the meeting wonderful thank you so much so it’s my great pleasure to welcome assistant secretary levine for some welcoming remarks well good afternoon thank you i am dr rachel levine and i have the pleasure of serving as the assistant secretary for health within the u.s department of health and human services and it’s my pleasure to join you today for the second meeting of the covet 19 health equity task force it’s really wonderful to see everybody of course it’s virtual but see so many colleagues from across the federal government new and other long-time partners from many sectors all working towards the same important goal of mitigating the health inequities that have been exacerbated by the covet 19 pandemic and of course our work in the work of the task force is to ensure that we prevent such inequities in the future we have all faced a very difficult and challenging year in the united states covet 19 has been taxing physically and mentally especially among racial and ethnic ethnic minority communities and other vulnerable populations it is so important to mention that all of us especially those in hardest hit communities we have to remain committed to our basic public health measures for a while longer we need to ask people to wear a mask wash their hands physical distance and avoid large gatherings we need to continue to do that and as we worked in to distribute and administer the vaccines it’s critical that we identify the questions and the concerns about covet 19 in general and the vaccines in particular and work to successfully answer them so your all advice insight and recommendations have never been more necessary than now you all have a unique opportunity to influence this historic effort by making recommendations to the secretary of health and human services and the president of the united states to help ensure that no one is left behind as we continue to tackle this urgent health crisis now it is my great honor to introduce the 25th secretary of health and human services javier becerra secretary becerra is the first latino to hold the office in the history of the united states as secretary he will carry out president biden’s vision to build a healthy america and his work will focus on ensuring that all americans have health security and access to health care throughout his career the secretary has made it his priority to ensure that americans have access to the affordable health care that they need to survive and thrive from his early days as a legal advocate representing individuals with mental illnesses through his 12 terms in the house of representatives to his role as the attorney general of the state of california secretary becerra is committed to ensuring that everyone in our country has health and hope each and every day and i look forward to working with him on tackling covet 19 and health equity issues secretary vasara to dr lavina thank you so much for the introduction more importantly thank you for taking the post as assistant secretary for health at hhs uh and to dr nunez smith thank you so much for leading this effort then for everything you’ve done to give you the not only the might but the the wisdom to do this i know you’ve been working towards this for a long time and to get to do it at this level i think is fantastic to the members of this task force can i just salute you right now and say 30 years ago when i started in congress would i have believed that based on the president of the united states there would have been a task force like this with this many uh qualified and capable people america you know it always redeems itself and that’s the beauty of our country but i have to say this look at the folks who have spoken so far if we’re not talking about equity and equity and health just look at the people who have so far addressed you and there is i think is clear a sign of the commitment of president joe biden to make equity and health equity a top priority for this administration so i thank each and every one of you who are part of this task force for the work that you’re going to do because it will inform not just this administration but for years to come where this country goes so we thank you for that i have to use the words of another not just famous american but one of our true champions in this country he uh he was around making difference making change back in the mid 1800s and you’re probably going to recognize him by the quote he said it is easier to build strong children than to repair broken men and i mentioned that today because at that time when he said this uh there were many of america’s children who didn’t have a chance to believe they could grow up and be strong america quite wasn’t ready to accept all of its children and when frederick douglass said that i know he was talking about all children but he certainly knew what it meant when we would forget neglect many of our kids simply because of what they look like what their religion was the language they spoke but those words ring so true even today it is easier to build strong children than to repair broken men that’s what i think this task force at the end of the day is about it’s building strong americans by giving every one of us a chance to participate and i think it is nothing short of fantastic that the word on making a difference when it comes to equity health equity dealing with kova 19 the right way with everyone involved that word comes from the very top so president biden just isn’t giving us words he’s giving us deeds and this task force will reflect those deeds but more than that and here’s the real kicker he’s bringing resources to the table and i know dr nunes smith knows this i know that dr levine knows this i know this because hhs is going to have not just the power of its word but the power of resource to make a difference when it comes to health equity so i have to say it now and i know you all have said it as well thank you president joe biden for walking your talk it is good to know you’ve got someone at the top who wants to do this right now covet 19 has exposed what many of us have known for a long time this country has pockets where there are forgotten americans invisible americans and worse sometimes even if they’re not forgotten or invisible they’re hostilely targeted americans as dr nunez smith pointed out earlier whether you’re a rural american you’re an american of color whether you practice a religion that sometimes is the target of hostility we know what happens and so i must tell you that for me this is personal whether it’s because of the stories my father would tell me as a young man where he could not walk into the restaurants to eat the food he had just finished picking from the from the fields because of the signs that said no dogs negroes or mexicans allowed or whether it’s what i see going on today with too many of our fellow americans this is personal i think for many of you this is personal and so when it comes to health it becomes even more personal and i felt that as well but in a good way because as the son of immigrants a father with a sixth grade education we had health insurance when i was growing up that was because my dad as a laborer was able to get insurance through his union and when my mom had a health scare and had to be rushed to the hospital bleeding we knew that we would survive it i didn’t really know what i was about four years old but we knew we would because we didn’t have to fret if we could afford to go to the hospital and have give my mom the care she needed those are the kinds of experiences too many people who’ve been left out and forgotten can’t really tell you about and so equity has to be part of what we live and do and i’m here to say to you right now that equity will be part of everything at least so long as i’m secretary of health and human services equity equity will be part of everything that we do at hhs and so whether it’s dealing with that seeing confidence in some of our communities whether it’s making sure that when we produce data to tell us what to do when it comes to health care we make sure we’ve included everyone in those surveys and in those uh sample projects to make sure that everyone has been included to produce the kind of data that we need we want to make sure it’s clear equity will be part of everything we do and so to each and every one of you have served on this task force aim high push hard put your soul in it and let us together build strong children thank you for what you do thank you so much secretary basira and assistant secretary olivia this is i i am we’re going to take you at your word right and we want to be held accountable we’ve had this conversation before right that we know this is an important moment an opportunity the task force is definitely leading into this we are deeply appreciative for the leadership here at the agency and to underscore a force that the president and vice president as well so this is a very unique moment as has been reflected and observed where equity is at the center um and there is deep wisdom here on this task force and uh and i’m sure you’re eager to hear the recommendations we’ll be discussing later on in the second half of the meeting but i thank you both for joining um we’ll take a moment now to to hear from some of the folks here on the task force i think it is just essential that we pause now and remind ourselves of who’s been working hard in service of the equity mission these past weeks to get us to this point i will ask just for each task force member as we go around just a reminder for um for those who might be viewing of who you are you know where you’re from uh and any organizational affiliation and of course uh you know what motivates and drives you should you um be interested in sharing so i’m going to ask for myra alvarez to get us started i thank you chair nunes smith i have the honor of serving as president of the children’s partnership we’re a california policy and advocacy organization focused on advancing child health equity i live in the great city of san diego california and our organization is based in los angeles i bring with me to this role my commitment to ensuring every child regardless of their background has the opportunity to grow up healthy and thrive and a recognition that children are part of families and families are a part of communities coming from a state that’s been as hard hit as california and representing a latinx community that’s dying from covet 19 and an alarming rate i’m honored to do all i can to ensure our work to advance equity in our nation’s coveted response a response that centers the needs of our black indigenous and people of color the communities that are not only disproportionately impacted by covid but are also on the front lines working many of the jobs that are helping keep our economy running and support the many of us that are privileged to work from home i’m a proud daughter of mexican immigrants and i’m honored to bring my personal and professional experiences to the critical work that needs to be done alongside my fellow task force members chair nunes smith and partners across the country in ensuring a more equitable response to covet 19.And i would just say i’m honored for the comments of assistant secretary levine and secretary for sarah and we’re proud to call home uh to be the home state of our secretary thank you thank you dr hildreth hello thank you uh chairman of smith and first i want to express my sincere gratitude to president biden for making equity a focus of his administration which is long overdue i’m president of harry medical college it’s one of the four black medical schools we’ve been around since 1876. we were created to give opportunities to learn healthcraft for african americans we also created to provide opportunities to get medical services for those who could not get it i’m a virologist by training an immunologist and when i was about to embark on my journey to be a transplant surgeon hiv occurred and became obvious that this was going to be a problem that impacted people of color disproportionately so i changed my career plans and i’ve been studying hiv for the last 35 36 years and that path has taught me the chasm that exists in the health status of people in our country and so when covert 19 occurred it was like the same song with a different melody and i’m really proud and pleased to be a part of trying to find some solutions and again i want to thank the president for this opportunity and thank the chairman for her leadership and i look forward to trying to contribute to some solutions so thank you for allowing me to do this thank you mr andy imperato please thank you madam chair my name is andy imperato i’m coming from sacramento today where i am the executive director of disability rights california let me join myra in expressing pride that the secretary of health and human services is from the great state of california i’m also glad to be a fellow stanford law alum so i’m proud of you in that regard as well i have lived experience with bipolar disorder so like a lot of members of the task force this is personal for me and i appreciate your acknowledgement of that secretary becerra um before coming to this job i was senator harkins disability policy director on the u.s senate committee on health education labor and pensions and i ran the american association of people with disabilities and i just have to say how delighted i am that disability is part of the equity conversation we were the first group that the chair mentioned when she talked about all the different groups that are impacted by covid and thinking about health equity and social equity so i’m just grateful for the opportunity to be here and humbled to have this opportunity thank you thank you all right mr victor joseph serious good morning good morning it’s it’s great being here um it’s such an honor and and seeing secretary sarah and also assistant secretary levine and listening to your comments yet again as a as a tribal leader it’s been very important for me to work on the american indian alaska native issues especially when we see the the high levels of impact on our tribal communities and once again in not a good way we’re seeing that a high percentage of disparities impacting this group of people it’s just great working with this group of people that have been put together and working on a common cause to help improve equity across all bodies and with that i just say thank you thank you dr caldew please good morning good afternoon everyone i just really want to thank you madam chair uh president biden um for the opportunity to serve on on this task force uh my name is joni kaldin i am the chief medical executive for the state of michigan currently helping to lead our state’s response to covet 19 but i also have the opportunity and work in the emergency department at henry ford hospital in detroit as an emergency medicine physician and i have throughout this pandemic i’m also obviously a black woman um and i’m a a mother as well and and i’m um this this work as was mentioned is quite personal for me seeing how uh this this virus has ravaged our entire state particularly our communities of color but also how it has impacted uh people working on the front lines and our health care communities um and and seeing how it continues to just just really surge particularly as everyone’s aware i’m sure in michigan and starting to search across the entire country so being able to be a part of this work is quite personal for me and my family and it is quite an honor so thank you thank you dr martinez hello madam chair um i’m the executive director of the hog foundation for mental health we’re part of the university of texas located here in central texas in austin texas in fact hog foundation from a health we have been diligently working toward health equity and especially from obviously a mental health perspective uh for for everyone what really drives me is that you know i believe everyone all families all communities really should have access to quality care with the best health outcomes that’s what we need and what we deserve we can only though achieve this if we really eliminate disparities and work toward achieving health equity and for the another thing that drives me is personally and i know many here on the call colleagues and across the nation have experienced loss and grief we really have the hog foundation itself has lost a beloved staff member and uh in my circle of friends and and folks that i know there have been losses as well due to covet 19 just recently a few days ago as notified of such and so this is extremely important for all of us and so i thank the president biden for the appointment and definitely am very uh keen and aware uh of of everyone here and so i thank you thank you dr tim putnam thank you madam chair i have the privilege of being the ceo of margaret mary health a community hospital in batesville indiana i work alongside a group of brave and talented healthcare professionals who’ve fought this pandemic for too long now and seen too many of our friends and family suffer from it i have the honor of working with a lot of rural providers and rural people across the nation hardworking men and women that have seen their access to healthcare subside over the years and i will tell you that every group that’s represented here when their issues are exacerbated by living in a rural area where they have limited access to health care and virtually no internet it becomes much more worse much worse and a much greater challenge i really have to appreciate appreciation to president biden for valuing equity i i believe if we as a nation value equity and make it a priority we are a stronger nation and it’s really appreciated that he sees that and you see equity listed in so many of the initiatives that he’s done so far so thank you madam chair yes thank you mr vincent terranza thank you madam chair my name is vincent cerronzo and i am from pembroke pines florida i serve as state secretary of the florida association of student councils where we constantly advocate for student voices to be included in government decisions important decisions in our country and our state as a young person i am committed to serve on this task force for the disproportionately affected youth across this country who have been struggling with their mental and behavioral health during this pandemic and long before this pandemic and want their voices heard within our government you know it’s it’s leaders like secretary becerra that make me proud to be a latino american so i just want to thank secretary becerra and assistant secretary levine and the biden administration for their leadership as well as dr nunes smith for commitment to lead our group and i’m incredibly honored to serve alongside my esteemed colleagues to pursue a common goal which is to ensure that our response to this pandemic is centered around equity thank you very much thank you mary turner please thank you madam chair hello my name is mary turner i am president of minnesota nurses association which is a proud affiliate of national nurses united but more importantly i’m a covert icu nurse on the night shift at north memorial medical center in robinston minnesota and i have actually been in healthcare uh the healthcare field since i was a 12 year old candy striper and this time next year so that will mean i will have been caring and comforting patients for 50 years and the reason i mention this fun fact is that as a registered nurse it is my privilege and duty to always advocate for the highest quality of care for the patient for all of my patients but for me it goes beyond just a job description bringing care and comfort is something that i have done my entire life and that drive to seek the very best care for my patients is literally a part of who i am as a person so as for my role on this task force not only am i representing the frontline healthcare workers as far as i’m concerned the nation and all of its people are now my patients and as such my focus will always be what is the highest quality of care that i can deliver to them and may i add also it was the best day ever when i could personally meet president biden thank you well thank you dr homer venter please thank you madam chair thank you to the secretary and assistant secretary my name is homer vendors i’m a physician and epidemiologist and i’ve spent my career focusing on health care for people who are incarcerated and promoting the health of people who are involved in the justice system i’m just thrilled to be part of this group thank you to the other panel members i’ve spent the last year of my life doing mostly court ordered inspections or investigations of covet outbreaks in jails and prisons and immigration detention centers around the country and making recommendations these endeavors have really solidified for me how the substandard care the lack of access to care for people who are incarcerated is one of the greatest representations of racism and health in our country and so working with colleagues here to promote more equitable access to testing to treatment to vaccines is really a privilege for me to be able to work on um and also to use this time and emphasis to rethink uh not just how we provide better care behind bars but how we rethink mass incarceration itself and how we start to use our skills and our public health acumen to document how incarceration harms health so thank you thank you mr bobby watts thank you madam chair and uh i also want to express my appreciation for the heartfelt remarks from uh secretary becerra and assistant secretary levine uh i’m bobby watch the ceo of the national healthcare for the homeless council which is headquartered in nashville and but support and supports the 300 federally qualified health centers that have a special emphasis on serving people without homes and also the more than 100 medical respite programs also known as recruitive care in california programs throughout the country uh at the council we believe and i believe that health care and housing are human rights and that is the basis and the starting point from for all that we do professionally my public health training is in health administration and epidemiology personally i am african-american born in a segregated hospital in north carolina and grew up in a poor neighborhood in brooklyn new york and from an early age have seen the effects of discrimination and racism and what it does to disadvantaged communities and especially how it impacts health so i’m thrilled to be part of this task force looking for bold recommendations to give to the administration so that we can attack this virus and attack inequity at its root i appreciate this time thank you thank you miss hey young you please thank you madam chair and um thank you secretary basara and assistant secretary lipping it’s i am deeply uh grateful and honored to be part of this task force my name is hey young yun i’m the senior policy director at the national domestic workers alliance we represent 2.2 million domestic workers who are deemed essential in the heights of pandemic and they care for young children people with disabilities older adults and keeping our houses clean so and it is thrilled to be part of this task force and really appreciate the administrations and also uh secretary pizar and assistant secretary to really think about health equity broadly and not only ground and center equity but really think about all the other structural inequities that prevent people from accessing public health so really grateful to be part of this task force at a personal level as an asian-american and in this height of the alarming rates of anti-asian hate anti-asian violence it is really heartfelt to be part of a task force that is really looking at how to address and combat xenophobia racism and structural inequities so i’m again i can’t say enough how humble i am to be part of this esteemed task force and work together to deliver some concrete actionable recommendations thank you thank you wonderful um i am inspired and new every time just to be in the company of the colleagues in the task force much appreciated uh so with that we are going to shift now and begin to anchor ourselves in our conversation that we will be having regarding the recommendations so i understand uh certainly to any of our our guests are all welcome we know schedules are tight um and appreciate the time that you’ve been able to share with us so far secretary and assistant secretary i it is a great honor for me to be able to introduce and i will do so in turn three um three guest uh experts who are gonna be able to i think provide really key context for us as we begin to consider recommendations just by way of logistics wanna have each speaker sort of speak in turn and then after all three presenters in spokane we’ll have time for open uh group discussion it is my pleasure to first introduce miss samantha ortega so i’m gonna look and i’m gonna to to share everybody is um incredibly modest always in this space many many accolades i will only highlight a few so ms artega serves as vice president and director of the racial equity and health policy program at kaiser family foundation or kff and in this role she leads kff’s work to provide timely reliable data information and policy analysis on health and health care disparities affecting people of color and underserved groups as well as efforts to advance racial equity in health and health care mr ortega’s work focuses on the intersection of racism and discrimination social and economic inequities and health she’s also conducted extensive work related to the health and health care needs of low-income populations and immigrant families and previously served as associate director of kfx program on medicaid and the uninsured that ms ortega holds a master’s degree in health policy from the george washington university we’re just very thrilled you could join us today i will hand the floor over to you thank you so much madam chair and thank you so much for including me in today’s discussion i’m really humbled to be a part of it i want to really start out by expressing my gratitude to these themed members of the task force and the expert leadership of dr nunez smith as well as secretary becerra assistant secretary levine and the vice president and president if you’ll give me a moment i’m just going to share some slides that i want to use today to walk through the research that i will be sharing so today what i’m really going to be focusing on is what our work at kff has revealed about gaps that have emerged in covid19 vaccinations so far an effort to address those gaps there’s a lot of information that i’m hoping to share with you today in a relatively short time so here i just want to include a little bit of background information on my organization kff or kaiser family foundation for those of you who may not be familiar with us and as noted on the slide the information i’m presenting today is my own and does not represent any views of the federal government and i don’t have any conflicts of interest to disclose so as was noted today we are really going to be focusing on covid19 vaccination efforts but as you heard from the chair it is vital that as part of this discussion we start by recognizing the uneven impacts of the pandemic as we know data consistently show that the pandemic has taken a harder toll on people of color with them getting sick and dying at higher rates than their white counterparts data also show that people of color have been more likely to experience negative impacts on their mental health as well as negative financial impacts and this context is really key for setting up our discussion of vaccination efforts since as cdc has indicated it is important that we look beyond just vaccine equality which would be the proportional allocation of vaccines based on population to vaccine equity which they define as the preferential access and administration of vaccines to those who have been most effective by covet 19.So with that context in mind we see that the data so far show us that those who have been most affected by the pandemic have been the least likely to receive the vaccine at kfs we have been conducting ongoing analysis of state-reported data on vaccinations by race ethnicity and while there are a number of limitations and gaps in these data which i’ll discuss later in my remarks they show a consistent pattern of black and hispanic people receiving smaller shares of vaccinations compared to their shares of cases deaths and total population across states that are reporting data and i’ve just highlighted a few of those examples here on our website you can find the full data for all states that are reporting data and what that means then is when we look at the percent of the total population who has been vaccinated by race and ethnicity we see that across those states that are reporting data white people were 1.8 times as likely to be vaccinated as hispanic people as of the beginning of this week but the size of that gap varies across states with the rate at least three times higher in some states and we similarly see that the vaccination rate among white people is 1.6 times higher than the rate among black people with that difference again varying across states and reaching at least three times higher in some states and looking across time we see that although vaccination rates are increasing across racial and ethnic groups these gaps for black and hispanic people are persisting with the absolute differences between these vaccination rates actually widening over time so beyond these racial ethnic data that are reported by states we also recently conducted analysis of county level vaccination data that’s been made available by cdc and what that what that analysis shows us is that counties with higher shares of people of color poverty and uninsured rates and that measure higher on the social vulnerability index had lower average vaccination rates compared to those counties that had lower shares of people of color poverty uninsured rates and that measured lower on the social vulnerability index now we’ve talked about the importance of considering equity through multiple lenses we don’t have data to understand vaccination rates among people who identify as lgbt but through some of our survey work that we’ve conducted at kaiser family foundation we see that people who identify as lgbt have experienced disproportionate impacts of the pandemic pointing against the importance of focusing on them in vaccination efforts we also know from those data that most lgbt people plan to or are open to getting vaccinated so as we consider these gaps and disparities in vaccinations i think there has been a lot of immediate media attention around vaccine hesitancy as a potential driver for some of the racial disparities we’re seeing in vaccination rates in particular however as our cobit 19 vaccine monitor survey data shows as of march over half of people across racial and ethnic groups reported that they had already gotten the vaccine or that they wanted to get one as soon as possible this to me really suggests that it is not differences in willingness that are in the main driver of the gap that we’re seeing in fact as i think many of the people on this meeting know the gaps we’re seeing largely reflect long-standing inequities that create increased barriers to accessing the vaccine as well as healthcare more broadly for people of color and other underserved groups for example more limited resources to navigate the online sign up processes that have been necessary for access to many of the early vaccines more limited transportation options less flexibility and work and caregiving schedules including less access to paid time off to get a vaccine or if someone experiences side effects higher uninsured rates which may contribute to more cost concerns that people do not understand that the vaccine is available for free and which contribute to people having less connection to the health care system potential lack of information about how where and when to access the vaccine as well as linguistic barriers confusion about eligibility and fears of potential impacts on immigration status as well as potential challenges providing proof of identity or residence if that is being requested by a vaccination provider and what we see when we look at our survey data is that many of these concerns many of the concerns about the vaccine expressed by people reflect these underlying inequities that contribute to access barriers across groups many people are concerned about potential side effects of the vaccine but black and hispanic adults are more likely than their than their white counterparts to be concerned that they might have to miss work due to side effects that they won’t be able to get the vaccine from a place they trust or that it might be difficult for them to travel to a vaccination site we also see that hispanic adults are more likely than white adults to say that if they heard the vaccine was available at no cost they would be more willing to get the vaccine suggesting that some have concerns about potential costs of the vaccine and may not know it is available for free this really points to the importance of making sure when people are trying to access the vaccine it is clear that they do not need to have insurance and that they will not be charged for the vaccine even though some providers have been requesting insurance information from people to cover their costs of administering the vaccine so i’ve spent a lot of time focusing on gaps and challenges but i also want to highlight some of the emerging strategies that are being implemented to address the gaps that have emerged what we are seeing is steps taken at multiple levels to reduce access barriers by making vaccines more available directly in hard hit communities and by prioritizing appointments for people living in those communities by me and making more sign up options available that don’t require people to have internet access in particular we’re seeing on the ground examples of how when community-based organizations or clinics lead vaccination efforts they can be highly effective at reaching people of color they’re trusted by the communities they’re trying to reach they understand the access barriers that people face and they know how to reduce those barriers we also are seeing more efforts to address people’s concerns and questions about this vaccine through focused outreach and communications campaigns as you heard from dr nunez smith the biden administration’s efforts reflect many of these strategies to reduce access barriers including increased funding to efforts to vaccinate underserved communities with increased funding going to community health centers to further bolster these efforts and what we see from the early data about who is getting vaccinated through community health centers shows us that most of the people who have gotten a covid19 vaccine through a community health center are people of color with a particularly high share of hispanic people making up those vaccinations really pointing to the potential effectiveness of of community health centers as an avenue for vaccinating people of color but beyond reducing access barriers to vaccinations we also know it is important for people to have access to information to address the questions and concerns they may have about the vaccines and for that information to be made available through trusted messengers our survey data show us that healthcare providers are a top trusted source of covid19 vaccine information across groups to that end colleagues of mine here at kff in partnership with the black coalition against covid and dr ria boyd have developed a national campaign called the conversation between us about us designed to provide credible and accessible information to black communities through black healthcare workers so that they have the information they need to make an informed choice about getting a vaccine and i do want to highlight that we are currently in development of a similar campaign to address information needs among latino and spanish-speaking communities in partnership with new needles so as vaccination efforts continue data are pivotal for our ability to understand who is and who is not getting the vaccine data also are necessary for establishing health equity goals that can be measured against going forward and while we do have some data available which you’ve seen and what i’ve presented today significant gaps in limitations persist in the data that prevent us from having a complete and consistent picture of who is getting vaccinated these gaps limit us from understanding the experiences of smaller population groups as well as to understand the variation of experiences within the broad racial and ethnic category today for example we released a focused analysis of vaccination rates largely pointing to the success of vaccinations among the american indian and alaska native community since we’re not able to include that population in our ongoing state reported data tracking due to data limitations we continue to lack standardize consistent data by race and ethnicity for vaccination across states which limits our ability to compare experiences across states and get a complete national picture and i think some of the speakers following me today will further touch on some of these issues but i want to close by emphasizing why continuing to prioritize equity is important as vaccination efforts continue um and i think the work on the task force to to these issues is just going to be pivotal and really appreciate your commitment to this and i look forward to hearing your recommendations ensuring equity and vaccinations will be key for mitigating the disproportionate impacts of the pandemic for people of color and other underserved groups and preventing against further widening of those already large health disparities that were in place before the pandemic even began we also know that reaching a high vaccination rate across individuals and communities is necessary to achieve population immunity and protection from the vaccine but we know that because inequities are built into our underlying systems and structures achieving equity is going to require deliberate intentional actions that work against those built-in inequities and we’ve learned from what we’ve seen on the ground that we can build on and support existing community resources and strengths as part of our efforts to move toward advancing equity and with that i’ll close and again really thank you for the opportunity to share this information with you all today thank you incredibly helpful i’ll take a moment now just to say additional thank you uh to to your team and everybody at kff for really just being tremendous on uh providing insight these types of data insights on the questions around covet 19 equity really from the early days incredibly grounding and helpful for us just a reminder to ask task force members to please and hold your questions we’re going to have time to come back and ask ms martigo more about her presentation i will however take this moment now to introduce dr nalia islam it’s always so fun because i have to look around this the squares to find you there you are it’s great to see you thank you so much um again just by way of a brief introduction dr slam is a medical sociologist associate professor in the department of population health at nyu her research focuses on developing culturally relevant community clinical linkage models it’s very important to reduce uh cardiovascular disease and diabetes disparities in disadvantaged communities but really this is a model across across disease types as principal investigators she leads several national institute of health and cdc funded initiatives evaluating the impact of community health worker interventions on flaunting disease management and prevention in diverse populations she also directs the cardiovascular disease and diabetes research track for the nyu center for the study of asian american health which is dedicated to reducing health disparities facing asian american communities broadly it is a national research center of excellence also funded through and by the nih she’s also a research director at the nyu cuny prevention research center and principal investigator of a cdc funded a racial and ethnic approaches to community health or reach program project so thank you again for making the time to join with us today and provide some additional context i’ll turn it forward to you thank you madam chair i would like to really thank the health equity task force for the invitation to discuss strategies to advance health equity for asian american native hawaiian and pacific islander communities i’m really humbled to be here and share my expertise and represent our communities so if you could give me a moment to share my screen are you able to see the full screen yes wonderful so again i’m very happy to be here um i do hope that this is a first step in sustained and continual engagement with both asian american and native hawaiian and pacific islander communities who i’ll refer to as nhpis um as dr nina smith mentioned i’m on the faculty at nyu school of medicine and part of the nyu center for the study of asian american health the only nih-funded research center of excellence with a mission of advancing health equity for asian americans so my remarks today will center our work and the experiences of asian american communities but i’ll also highlight some common data related challenges across asian americans and nhpis doctor i’m sorry to interrupt just for one second i want to be sure that we’re seeing the correct view okay let me see if i can fix that for you is it the full screen now yes great thank you great so i’d like to start with setting the context for any discussion of health equity in asian americans and that’s to discuss two distinct but mutually reinforcing myths that are applied to asian american communities the first is the idea of asian americans as a model minority that we are more educated harder working have higher income levels an idea that’s been referenced in the media as early as the 1970s and has been consistently perpetuated as you see here the other is the concept of asian americans as a perpetual foreigner the idea that we don’t belong here we are others we’re somehow different here’s media coverage of the 2015 script spelling bee noting south asian american co-champions and the corresponding social media response to crying the lack of quote-unquote real american winners the idea of asian americans as perpetual foreigners has certainly been reinforced during the pandemic with references to coven 19 as the wuhan or chinese virus resulting in xenophobia towards individuals of asian descent an increase in hate crimes and the tragic massacre of six asian women in atlanta in march upwards of two million asian american adults have experienced anti-asian hate since the onset of covenant 19 including one in eight amer asian americans in 2020 and one in ten in the first quarter of 2021.This context is important because it is both driven by and results in the lack of data equity in asian american and nhpi communities data aggregation within and across asian american and hpi populations which lumps together more than 30 unique subgroups renders our communities invisible as a recent american medical association center for health equity report on api communities notes what is measured is what is valued and what is under counted tends to be counted out so i’m going to walk us through some illustrative examples let’s start with educational attainment which is this kind of central dimension of the model minority myth for asian americans and when we look at aggregated data we see that asian americans have a higher rate of educational attainment than other groups as well as compared to the national average but when we’re able to look at disaggregated data this demonstrates a very different picture calling attention to differences across asian american native hawaiian and pacific islander communities when we look at poverty levels in the aggregate and then here again disaggregated by subgroup we see a very similar picture with wide variation in poverty levels across asian american subgroups and these two findings are important because education and poverty are key determinants of health driving covert disparities another critical factor impacting all dimensions of health for asian americans is language access and proficiency both asian americans as a whole and particular asian american subgroups have high rates of limited english proficiency about 30 overall for asians but up to as high as 78 in some communities this invisibility put simply is killing our communities and this is nowhere better illustrated than in the kovit 19 pandemic national efforts put plainly have simply left asian americans out in september of 2020 for example about 234 million in federal funding was awarded to support projects across the country to approve access to coveted resources in under-served communities the press release announcing the initiative did not include asian americans as a priority population and indeed only a handful of projects include any outreach at all to asian communities similarly a framework for the framework for equity and vaccine allocation developed by nasa did not prioritize asian americans despite tremendous advocacy by asian american researchers and advocates across the country what’s disheartening is that we are left out despite at this point ample evidence that covett is disproportionately impacting asian-american communities compared to white populations this analysis by chu and colleagues looked at data death certificate data from the national health statistics center and found disproportionate burden of covid among latinx and black communities but also for asian americans and nhpis a number of other studies have demonstrated similar findings for example a systematic review last year of 18 million patients across 50 published studies found black and asian individuals at higher risk for coca-19 infection compared to white individuals and most recently data from the marshall project has reported that because of coven 19 more than 13 000 asian americans have died than usual representing a 35 increase over the prior five year average when we examine disparities by subgroup we get an even clearer picture this is data this is an analysis that our team led in collaboration with partners from health and hospitals which is new york city’s safety net hospital system this includes this analysis included data from 80 85 000 patients across the public hospital system from the period when new york city city was really the epicenter of the pandemic we applied a surname methodology to be able to better identify patients by subgroup ethnicity and when we did that we found that south asian patients had high rates of covered positivity second only to latinx patients and high rates of hospitalization second only to black patients and we found that chinese patients have the highest mortality from coven after controlling for age and gender when it comes to vaccine uptake um national data that we have available makes it seem that asian americans have higher uptake of vaccine this report from apm research lab aggregates vaccine data across 34 states and the district of columbia similarly data from the california health interview survey has demonstrated asians broadly have higher vaccine acceptance compared to other racial and ethnic groups but here again the lack of data disaggregation and data reporting issues plagued our communities the data you see here includes two states that do not report asian race ethnicity data at all and four states that combine asian american and nhpi’s the other consideration is that early waves of vaccine data may be over representing asians due to concentration of some asian communities and healthcare professions notably filipinos asian indians chinese and korean communities in places where we are able to drill down for example in la county neighborhood level data demonstrates that coveted death rates and vaccination gaps are highest among the most marginalized low-income asian neighborhoods places like koreatown little bangladesh thai town and little cambodia again data quality issues cannot be overstated and that’s illustrated here race and ethnicity data is missing at both the national and local levels in national data almost half of race ethnicity data is missing for vaccines as of march 17th similarly in new york city almost 20 percent of race ethnicity data for vaccine uptake is missing and this issue of missingness is a particular challenge for asian americans and native hawaiian pacific islander groups because studies have demonstrated again and again that these groups are more likely to be impacted by missingness as well as more likely to be misclassified so it’s important to underscore that one size does not fit all when it comes to covet solutions for any community i think that’s what this task force is all about but particularly for asian american communities dr stella yi and colleagues from our center have synthesized available evidence about how different asian american subgroups are experiencing the copenhagen pandemic outcomes exposures and impact of coven vary although there are some commonalities for example asian communities are more likely to live in multi-generational housing placing major limits on their ability to social distance likely contributing to disparities there are also some clear economic implications across asian american subgroups this includes loss of employment from closures of small businesses for example in chinese and korean communities and enhanced risk of some groups like south asians and filipinos due to concentration in essential workforces like healthcare but also other workforces like food service and transportation sectors anti-asian hate and xenophobia have consequences across the pandemic spectrum particularly for east asian communities including causing delays and testing and seeking care for coved but most recently fear of going to and accessing vaccine appointments due to safety concerns so trusted messengers has been a common refrain throughout the pandemic but recently gisele corby smith wrote that engaging trusted messengers can only happen in the context of true partnerships with communities community-rooted partnerships play an especially critical role for asian americans given the current context of anti-asian heat incidents language access challenges and underlying assumptions by local jurisdictions that asians are not at high risk that’s really been driven by inadequacies and data collection and reporting so two key players in this effort include community health workers or chws and community-based organizations chws are trained public health professionals who have a close connection with the communities that they serve based on shared lived experience the biden administration has highlighted the role of chws and covid relief we are thrilled for the 330 million that’s been allocated towards chws and support and applaud those efforts our team has further explored how chws work in partnership with community-based organizations to address the complex social needs and consequences of the pandemic providing further opportunities for vaccine equity so what i’d like to do is share two examples led by our team of chws and some of our community partners in new york city to really advance our thinking and offer tangible solutions for maximizing the impact of vaccine-related efforts as you saw from some of the data i presented earlier south asian communities early and the pandemic were very hard hit in new york city and so our team of south asian chws offered navigation through really complex systems including accessing unemployment health insurance cash benefits and setting up food and medication deliveries and tables throughout neighborhoods they’ve been active in mitigating fear and misinformation through in-language virtual town halls but also really through simply providing one-on-one social and mental health support during a time of tremendous loss and devastation they’ve also played a key role in addressing language barriers and challenges but also digital divide issues in very concrete ways and these were all precursors to serving as trusted messengers trusted navigators to facilitating vaccine appointments which they’ve been able to do quickly and efficiently another example i’d like to share is from one of our community based partners the chinese american planning council cpc in new york city has been linking community pharmacies with their home care programs to vaccinate homebound seniors they’ve also implemented a bilingual chaperones program to accompany seniors to their vaccine appointments due to the rise in anti-asian violence providing access to safe vaccines and addressing language barriers and what i’d like to highlight is that all of these efforts are being done by stretching current budgets not with additional resources or funding so my recommendations really follow directly from this um first all states must collect analyze and report disaggregated data separately for asian americans and nato points and civic islanders and for asian american subgroups this is not new and there is plenty of precedent by current omb standards asian americans and nhpi data should be disaggregated which is not happening in a number of states and we should also note that this is really a minimum standard in 2011 howard co led a charge on data desegregation efforts in section 4302 from the aca so there are precedents to work with and i hope i’ve underscored that for our communities the data issues constitute an emergency situation we have to demand that data desegregation take place and that there’s perhaps potential to do this through an emergency declaration second we have to prioritize language access for asian american and nhmpi communities across covenanting efforts language access i i don’t think i need to underscore this to the committee that language access goes beyond translation of materials which also needs to happen accurately and with community review there’s a great need for online and phone phone-based services that must be available in multiple languages particularly that given the high rates of limited english proficiency across asian american groups and also to offer interpreter services for on-site vaccinations again i’d like to emphasize that our cvo’s and community health workers across the country are doing this already but are stretched to capacity and this then leads me to my final recommendation which is to really provide direct financial support to community-based organizations and community health workers to facilitate safe access to cobia 19 related services for our communities this includes frontline agencies and federally qualified health centers we applaud recovery plan efforts and funding but really emphasize that the funds cannot only be directed toward state and local health departments our communities have robust systems of community support and infrastructure through community-based organizations through faith-based organizations through fqhcs and these must be engaged and supportive if we want to advance vaccine equity so i’m just going to end with acknowledging our many many collaborators in this work and i really look forward to the discussion and happy to take questions wonderful thank you so very much extremely insightful as well appreciate all of the illustrations um and you know thanks for the work that the teams are doing on the ground every day in affiliation with the center um all right i i know people are building questions hold the questions we’re coming soon soon to discussion um i want to be able to to introduce our third palace now dr cara iris thank you so much again for joining all three of you i know went through a lot to be able to be with us today it’s much appreciated so dr iris is associate director at the university of cincinnati center for excellence in developmental disabilities uh where she’s also a professor she earned her phd in clinical psychology from nova southeastern university um she no longer sees patients but really importantly applies that professional knowledge research experience and personal perspective to making systemic change to improve the lives of people with disabilities so during the um the land here she supports self-advocate trainees and contributes to the lend curriculum in the areas of disability culture psychosocial development with disability and disability policy she’s very committed to the belief that the voices of people with disabilities and their family members should be at the table at every table in schools workplaces and communities i think that is a very appropriate introduction dr welcome thank you so much the floor is yours thank you madam chair it’s my honor to be here today uh let me just share my screen all right so i’m going to be speaking about equitable vaccine access for people with disabilities and i’ve include included some disclaimers and disclosures my conclusions i share will be my own but i don’t have any conflicts of interest to report today um so dr nunez smith provided an introduction i just wanted to highlight um my role at the you said in cincinnati um each of you in your states and also in the territories have you said and they’re an excellent source for disability data which we’ll be talking about as an issue but um perhaps the best source in your state are these you said so i want to highlight those i’m also the director of the center for dignity in health care for people with disabilities and we’re a national coalition that have been working closely on these issues of coven specifically for more than a year so let’s start with some level setting about disability it’s a very heterogeneous group and it’s difficult for researchers to define there’s still not total agreement on what makes up a definition which further complicates gathering data but i think what i want to emphasize is this is not a small or insignificant proportion of our population most estimates average we’re talking about about one in four adults in the united states have some type of disability and you can also see this map which goes down to its interactive mathematica released this map just a couple of weeks ago and it goes down to county level data but you can see that the con the um the concentration is not equally distributed across our country so there’s a higher concentration in the south and you can also see some other regions like the appalachian region here as well it’s also important to mention the different types of disabilities and how our community is very diverse within so this graph from the cdc captures some differences in prevalence and type of disability but it’s so important to recognize that there’s overlap across these different groups and what i also want to point out are just starting to think about the different needs that we need to consider as we make vaccine access more accessible for all and it’s essential that we think about these groups and we challenge ourselves as health policy professionals and especially when we have medical training as a background that we think about the disability community beyond their medicalized definitions so people with disabilities are also more likely to live in poverty we’re more likely to be multiply marginalized whether it be that we’re also people of color or members of the lgbt community so there’s a misperception there’s many misperceptions about the disability community but i want to ensure that we start by level setting around who makes up this community another misperception that has been magnified with the pandemic is the idea that our community must already be well established with medical providers given that many of us do have many health care needs and that’s actually not the case one in three people with disabilities didn’t have access to a usual health provider before covid so you can think about how that is magnified now and the implications for that i like to zoom in a little bit more of our focus and highlight people with intellectual and developmental disabilities a group that’s particularly marginalized especially during this pandemic response in addition to understanding who these people are it’s essential that we think about where we can access them for information and equitable vaccination so most of our states we’ve seen has started with state ibd systems to reach this population and while that’s a start it only makes up about 20 of people with intellectual and developmental disabilities who are served by their idd agencies so we can start there but we certainly cannot stop there i know that we’ve all heard multiple analogies during the pandemic and as a psychologist it’s one of our tricks of the trade i guess to encourage people to think differently and think deeply and so an analogy that i have found fitting is that we yes we are all writing out the same storm but we’re doing so in different boats and i think that people may think that our different boats are related to our disability the fact that i use a wheelchair for mobility or that someone may be blind or deaf but in our case our boats have been more so impacted by the treatment that we’ve received and as we strive for equity we have to recognize that equality can’t guide us because we haven’t experienced this pandemic in the same way and so we have to base our recommendations on what we’ve learned to give you some idea about those differences and the disproportionate impacts i wanted to highlight some data around the disproportionate outcomes um in in both contracting covalent and also mortality rates for people with disabilities so in a study of 64 million people with intellectual and developmental disabilities were 3.5 times more likely to be diagnosed with covid19 another large study by gleeson and colleagues found that people with idd were twice as likely to be hospitalized and people with idd are also much more likely to die from culvert most studies finding people with idd are between two and three times more likely to die than those without idd so we have these original sources as well as other research summaries i’m linked in my slides but also on our center for dignity website center for dignity.com and i want to emphasize again that these discrepancies are alarming and it’s so imperative to understand that they are not explained by worse health outcomes there was a lot of really frankly hurtful narrative especially in the beginning of the pandemic response as if vulnerable populations were expendable these outcomes are influenced by inequitable treatment as well which is avoidable preventable and influenced by ableism the idea that our lives as people with disabilities have less value and unfortunately that message of devaluing disabled lives has been sent multiple times during the pandemic from our policy decisions and now is the time to turn the corner and live out our value for equity but to do so we must address a few problems first as others have mentioned today the pandemic has magnified some long-standing problems that are worsening our community’s outcomes and in this case is in itself a public health crisis we have a major disability data problem we are missing pieces we have inconsistent reporting failure to reach consensus on definitions and entire missing population data several opportunities surveys have been missed to include disability data even including idd and death certificates is not standardized so we are likely under reporting not over reporting the massive loss to our community so we cannot forget disability when we’re modernizing our public health data systems we’ve also seen the challenges faced by the disability community in extreme variability across states in their vaccine plans so as many states recognize the need for equity early in drafting these plans and most the plans have a section actually labeled as such almost none included even the word disability in those plans and this was a major missed opportunity even when we’re talking about equity we’re not remembering the disability is part of that picture so we can’t leave disability out any any longer in response to the variability that we saw across the different states early in the vaccine rollout our center for dignity team in collaboration with dr bonnie sweener’s disability health research center at johns hopkins and with support from the american association of people with disabilities we developed a vaccine dashboard that we’ve been happy to busily update every week as we’ve been able to reflect what types of disability definitions were prioritized week by week week by week with each state and again even the definitions varied so advocates were able to use this tool to at a baseline figure out when they were eligible but also to advocate to their state for their needs to be more inclusive of other high-risk groups we’ve expanded the dashboard to respond to other needs that we’ve heard from the community we started tracking caregiver access to vaccines and most recently we’ve added some data visualization and also some rankings for both the information pages that states have and the registration pages that states have we all benefited from knowledge shared by kaiser health’s news report a few weeks ago highlighting the major accessibility issues with the vast majority of state websites so this they surveyed more than 90 websites and only 13 didn’t have significant major errors many state websites have hundreds of accessibility errors and to give you an example of what that may mean it may mean low contrast text which would mean if you have a visual impairment you’re not able to read the information in other cases it’s things like including a phone number that someone may need to register as part of an image which makes it completely inaccessible to someone who’s blind and using a screen reader to access this information so we have to do better than this we update this dashboard weekly and we want to be busy making updates showing that these states are fixing these accessibility errors this is a map of just illustrating some of the states and the distribution of these errors so this map shows the state information websites and you can see the darker colors illustrate the bottom third so those have the most accessibility errors and what stands out to me is that unfortunately these are also some of the harder hit areas from covid so i we also have a visualization and again this is as of this week so this map shows the state registration websites for accessibility and what stands out to me with this map is the massive number of white states that simply don’t have one centralized state registration website and what that means is that the registration websites are just distributed across multiple um and that that also happens in some of the states who do but um those white states don’t have an option for someone to go to a state led registration page again you see states that have in some cases hundreds of accessibility is just direct hurdles stopping from being able to act towards equitable vaccine distribution is that we know that it’s influenced by science what research has been conducted which has its own kind of culture around it data which we’ve talked about as a challenge and policy and i know that there’s been a heavy reliance on ethics to make these tough decisions but i just want to highlight that we need to be aware that that field as well has a history of ableism the utilitarianism approach that guided early rationing care guidelines for crisis care standards directly devalued our lives and we can’t really just kind of move past that it’s still influencing our decisions today and another note on ethics most of these state vaccine plans as we look through them claimed that their guiding ethical principle was minimizing loss of life yet many of these same plans did not prioritize people with disabilities and high-risk groups in their priority groups so this just doesn’t add up we have to make sure that things align some recommendations oops some there we go so some recommendations that i would share is that we have to remember that people with disabilities thankfully many of us live in the community but this makes us more difficult to reach so states did have done fairly well reaching the congregate care settings where many people are living in one place but those settings have come with their own deadly risks as well so we have to get creative and figure out how to reach people that are more distributed in their community we’ve got to go beyond people that are directly connected to their duty and other formal disability systems and we also have to remember access needs at the vaccination sites this can’t be an aspiration it has to be an expectation with accountability coming along with it we have to overcome those barriers before during and after the registration process we have not crossed the finish line until people are have received you know in some cases their second shot and are through that process we can’t drop the ball in the midst of it i also just want to highlight that we can learn from these lessons and plan for pediatric distribution to our youth with disabilities and children with disabilities so we don’t have to start from square one and i’m really looking forward to that day when when my children receive their vaccine some best practices that have emerged along the way are accessible websites that we have seen and so we know what to do these aren’t mysteries that we have to solve we just need to expect it done and do it i’ve been happy to see states that have used a self-attestation process there could have been a significant log jam if we required different high-risk groups to gather documentation and i was happy to see that that wasn’t a barrier but i also heard from providers who said that you felt left out of the process that they for some high-risk people especially those with rare diseases who weren’t specifically listed they wanted to have an option to be able to contribute and they didn’t quite know how we’ve we’ve mentioned the importance of phone registration and transportation barriers and just listening to the disability community for some creative strategies things like mobile vaccination sites but as we hear of some of these things pop up i want us to have the same urgency that i hope we all still feel today so just yesterday i heard from a friend and a colleague who has finally been able to schedule his vaccine appointment in the home because he’s unable to leave his home due to his disability but his appointment is for august 15th and that’s unacceptable he’s in a very high risk category so we can’t just stop at finding these creative solutions we have to do so with the utmost urgency and in closing what people with disabilities need is we need direct representation we need seats at the table advisory committees ethics committees from people with direct lived experience we have to be represented beyond our medical definitions we need better data collection at both federal and state levels and we need equitable care in the hospital unfortunately this pandemic is raging on in our hospitals and our community members are dying due to inequities and care so we can’t forget that battle as well and we need to live in the community we’ve seen the cost of lives for congregate care settings so i’m so thankful for the president’s focus and investment in home and community-based services we have to see that through the finish line lives are at stake the good news is you are not alone in searching for these solutions i encourage you to look to disability advocacy organizations including those that might work on issues that you may not think are directly related but definitely have key insights to add here so disability orgs that work on employment accessibility housing transportation each of these have something to add and as we pull these together we can help get through not only the vaccine but beyond as well it’s always my hope um that you remember to include disability and discussions around equity it’s an honor to be here to actually make that happen today but it has to go forth after today and unfortunately from the start of the pandemic when our community faced the realities not only of the disproportionate loss of our members but also the rationing care guideline guidelines should we be sick we were explicitly told that our lives were expendable and the disability community has felt left out i’m thankful to be able to share my perspectives today and i hope that our many voices are heard i am an optimist and i truly believe that lessons learned from the experiences through this pandemic can help us improve not only our vaccination efforts but our overall public health response in working with the disability community now and in the future so i hope we all take advantage of these opportunities for growth and again i i really appreciate the opportunity to share this information with you today thank you so very much thank you just three outstanding just stellar uh presentations for us right to the heart of the matter particularly appreciate um the very pragmatic strategic approach that each of you took in terms of where there are gaps that we might address so thank you again for joining we we have time for question and answer and some discussion and conversation so i will open up the floor to the task force members please if you use the raise hand function i think i will be able to track um we’ll start with mary please thank you my question is for um for dr nadia this song uh so the public health system has been basically decimated across the country and i i i noted that you are putting an emphasis on the whole concept of the community health workers playing a huge uh part in health care now but i come from the perspective that we need to we need to ensure the highest standard of care for people and so what is being done about addressing the issue of increasing the amount of public health nurses epidemiologists and other health care professionals that’s a good question and i think i would respond that you know chws are fundamentally a compliment to other members of the healthcare workforce and i think their uniqueness is that they very much play a bridging role between communities and the health system in particular but between communities and other systems of care and that’s part of why i wanted to highlight the really critical role that chws played as trusted messengers again that’s i think a refrain we hear again and again um part of that status of being trusted messengers is that they have the lived experience they are from the communities that they’re serving and they also know that health care doesn’t happen in the 15 minutes of a patient visit you know that is happening out in the community and is being influenced and contextualized by social determinants of health and i think during covid we saw this so acutely you know there was within a two week period death and time happening all around us in our communities um really juxtaposed by loss of employment um loss of income um you know made worse by issues related to not actually not being able to access services due to language but also simply fear fear in all kinds of ways and particularly for immigrant communities fear was very nuanced and multi-level and so i think chws play a role in complementing the healthcare workforce i don’t think in any way they replace the the nursing workforce um or or other members of the healthcare team i think i think you’re right that there is a lot of interest in integration of chws into healthcare systems i think there needs to be structures in place and you know part of the there’s a lot of resources going towards chws that there needs to be careful attention to making sure that infrastructure is supported as well to be able to support the integration of the chw workforce that includes appropriate supervision that also means that it may not make sense to just place a bunch of chws within healthcare settings i think we don’t need to reinvent the wheel our and this is why i paired community-based organizations and cbo’s i think we are cbos have a lot of rich resources in terms of community health workers other navigators and bilingual individuals who can play that role and so i think supporting chw placement in those settings as well is key thank you let’s go to andy and then after that uh antivia and then myra thank you madam chair um my question is for dr ayers uh thank you for your presentation um at the beginning of the meeting today our chair talked about the intersection between disability identity and other identities and i’m just wondering if you’ve seen data that gets more granular about what’s been the experience of people with disabilities who are also african-american or latinx within the pandemic and whether the strategies to reach those populations need to change at all compared to the broader strategies that you recommended related to people with disabilities thank you that’s a great question unfortunately i can’t i can’t point to an excellent data source that illustrates that intersectionality we know that it’s present and so i think my best sources of input have been not only observations from the community but listening to those that are members of different intersectional groups and i definitely do think that there are more specific recommendations either are reasons and extremely valid reasons that there’s a distrust in systems especially from disabled people of color and so we need uh not only do we need trusted messengers but we need more equitable healthcare systems so that that trust can be gained and we need to we you know in healthcare for people with disabilities we encourage people to self-advocate and ask good questions so we by no means need to expect people to seek a vaccine especially with all these access barriers without getting their questions answered in an accessible way and then it also comes down to where um you know the basics of vaccine access for these population groups as well so i think that we we can’t i wish we could kind of merge not only our three presentations today but there are definitely takeaways and lessons that overlap across those so i do think it’s really important not to look at the groups that you’ve heard from today as separate groups but as overlapping layers that we can each learn some some best practices from dr martinez oh thank you madam chair i just want to commend our three esteemed presenters of excellent presentations i learned so much and this is for all three of you to see who will weigh in on this it made me think about that you know health economics uh impact of the fact of not gathering data what does that what what up what is this really costing us because for example uh inequities are more expensive to all of us because what ends up done it removes the opportunity for prevention or a public health approach so i’m wondering if you have any studies anything you can share with us because i think that the business case also is an important aspect that could really move of the agenda forward for health equipment so i can start and then if the others want to jump in they’re not specific studies i have to point to but i think the overarching point you make is exactly correct in that we all suffer costs and poorer health as a result of these inequities and i think the lack of good readily available disaggregated data delayed our ability to understand how the virus was impacting different populations which then prevents against really efficient response efforts right so that delay and data to get the complete picture of how the pandemic was impacting communities and individuals that makes it more difficult to efficiently and effectively focus resources on those areas that are most impacted and address the specific needs of individuals who are impacted and similarly we’re seeing that again with the vaccination rollout that not having that detailed data readily available inhibits those efforts so i think it points to that having high quality comprehensive consistent data enables us to then more effectively efficiently target resources focus resources to respond to needs as they arise thank you maybe you could go after that study for us i definitely heard that ass there did any of the other panelists want to make a comment about the health economics yeah i would um reiterate that that delay really cost us and you know it was almost a punitive cycle in the early days for people with disabilities for disability specific data at the state level as we were advocating um to governors and to their different committees about the different high-risk needs we were hearing things like well show us the data for that group if you want us to prioritize that group and so we were trying to explain that we don’t not have data because you know it’s not a high-risk group this is a long-standing problem that you know has been brought up by disability tickets for a long time but so there was a cyclical approach of that you know we were told show us the data and we were saying we don’t have the data we haven’t had the data but we have this that we can pull together and show you so unfortunately what also happened in response to that was that it kind of became the you know the hunger games of advocacy you have which groups are better funded and louder and ethical power which is you know really um not the position that we want to be in if we’re seeking equitable care and i think the other thing i would mention making a business case is i have been impressed with how nimble and agile you know some grassroots organizations have been and i hope that we consider that you know there’s a disability justice organizations in california that had responses you know stood up in days not weeks and so when we look at i think you know federal funding is extremely important but we all know that those wheels take a while to turn so we have to get more creative when we’re gonna you know use need agility to reach some of these harder-to-reach populations yeah i think i would just add to that uh two things one you know i shared this in my presentation but you know there is a consequence in terms of resource allocation for our communities you know i mean we asian americans and native poems and pacific islanders have really been left out of federal covent initiatives in in very real vividly clear ways um and then you know i couldn’t agree more with cara regarding the sort of vicious cycle of not having the data and having to prove that you have disparities you know in our analysis of the h hospital system 85 000 patients we found that chinese patients were have the highest likelihood of mortality from kobin that was only we were only able to do that after applying this very rigorous and innovative sort of surname matching methodology we wouldn’t have been able to do it with the existing data and you know we believe that those disparities may be a result of sort of this climate of anti-asian hate and real delays in seeking care related to cobed um and you know i would just kind of i think everybody has underscored this but um you know we really need to listen on the ground you know that that h analysis was driven by health care providers within h hospitals in places like elmhurst um and other city hospitals where they were saying you know we we’re seeing this in these communities but we don’t see it in the data anymore we’re not seeing it in the city data we’re not seeing it being talked about you know and so i think um yeah i would just just add that and thank you ms alvarez please thank you to our speakers uh and your insightful presentations this is a question from ms artega uh one of the slides actually a few of your slides really highlighted how successful efforts to reach communities particularly marginalized communities are building on efforts that we’ve seen have been successful in reaching communities of color like community health centers right that going through those channels those trusted channels of communication i’m going where people are has has been what has worked in as far as vaccine access and allocation uh can you talk a little bit about if any of your data or or conversations and focus groups have identified new opportunities to reach communities of color or has it only focused on building on what we know has worked in the past i would love to hear more about that um i think what we are hearing about again um is consistent with what we’ve seen over time even if we look back for example at the aca health coverage rollouts of who were the trusted messengers and helping people enroll in coverage as new coverage options become available and it is really finding those points in the community that are already trusted among the community and that have established relationships and i think it points to the importance of thinking broadly beyond just standard where people may get health care and we’ve seen some of that in terms of the role of churches and religious organizations you can see it in beauty and barber shops you can see it among community based organizations providing social support services and i think it is a really who those messengers are is going to really differ among each community at the local level in terms of who you’re trying to reach but i think what is consistent in terms of what we know is that there’s um no need to reinvent the wheel right there are places and people that have relationships in place that understand the communities that they serve that specifically know the barriers that they face to getting services and care and know how to address those barriers and when those community organizations and people can lead efforts they can design them in ways that meet the specific preferences and needs of the people that they serve and i think that is what we are seeing in some of the examples of successful on-the-ground vaccination efforts that are coming to pass thank you thank you tim thank you madam chair this is uh i i certainly appreciate everyone’s input i think you’ve made us a a more informed and better group so thank you so much for that the question i have for dr errors and you hit on something that i don’t think this group has talked about nearly as much and that is the difference the amount of people who did not have access to an established primary care service beforehand and i think there’s a real difference pre-pandemic if you didn’t have that what your access to testing what your access to diagnosis or treatment was beforehand i noted that you said a third of people with disabilities do not have access i’m wondering if you could tell me why it’s so high and what we do about it yeah good questions i mean i think like all answers with our community often it’s complicated one reason that is cited is that people may divide their care across specialties if they need but i’m specific to maybe their disability other disabilities may not have health needs um that are predictable and and like many americans unfortunately may not set up as adults a regular primary care provider until an issue arises which can create a number of challenges but you’re exactly right that it um makes those challenges of testing and vaccination even more difficult and you can you can also think about how that might be magnified if there might be specific disability related needs related to testing or vaccination so i’m thinking of also some autistic advocates that have shared with me that you know these massive vaccination sites are really inaccessible to sensory needs for some that may be too loud so being having the option to be vaccinated with their primary care physician if they have one may be exactly the accessible kind of route that they need but up until the last few weeks and in many cases some of the prioritization groups that wasn’t an option so even among those that did have a primary care physician established there’s been this this challenge in kind of working them into the vaccine um the vaccine process in the last few weeks we hope you know i hope to see that improve now that there’s more distribution and access thank you wonderful thank you so please the task force members just join me in thanking our three panelists once again for just outstanding presentations um you should know i wasn’t very honest up front i mean inviting you to join but you don’t get off the hook so you continue to be held close to us as we move forward with the work we will be circling back as we revisit some of the recommendations and please do continue to keep us updated with all of your insights and discoveries moving forward tremendously tremendously helpful so thank you i will turn it over to dr what yes so let’s uh probably take about five minutes break for everyone and then we will resume at 3 56 eastern time thank you produced by the u.s department of health and 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