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The “End” of the Public Health Emergency

Free Webinar

In January 2020, the Secretary of the U.S. Department of Health and Human Services declared a public health emergency in response to the coronavirus pandemic, which allowed for many temporary changes to health policy in the United States. The public health emergency has been extended several times, but the Biden Administration recently announced that the public health emergency will end on May 11, 2023.

As the public health emergency concludes, many of the flexibilities implemented during the coronavirus pandemic to improve access to vaccines, tests, and treatments for COVID-19 will expire. The end of the public health emergency will also affect how patients access care generally, with changes to telehealth and medication prescribing rules.

This webinar, hosted by Pandemic Patients and COVID Survivors for Change, discusses how the end of the public health emergency will affect patients. The panelists also discuss how these changes will specifically impact Americans with long COVID.

 

 

why don’t you go ahead and get us started Chris all right sounds good hey everyone uh
thank you for joining uh my name is Chris Carter I’m the executive director of code survivors for change uh we are a
nationwide Community where we support survivors we remember those who have died and we advocate for a stronger
pandemic policies and we do that by offering trauma-informed resources for example we have coveted connections
which is our free weekly support group led by mental health professionals that has provided more than 4 500 hours of
free support since 2020 and we take action to bring about legislative and cultural change most recently we’ve been
fighting to raise awareness about the more than 300 000 children who have lost a parent or a caregiver to covid last
year we’ve fought with other groups in California to make sure that 115 million dollars was advocated to uh in the
budget for baby bonds which are publicly funded savings accounts that can be used when a child turns 18 for college or
starting a business or purchasing a home and that’s a policy that we fought in
California for children who lost parents or caregivers and where last month we were able to introduce a scholarships
bill in New York and then next month we’re expecting that baby Bond’s bill in New York as well so trying to do more to
raise awareness and push for support in New York and other states like Italy did last year in California
um I’m going to hit the record button um and we’ll post the recording afterwards
um all right um Android’s saying I need permission from you to record so maybe you want to
do the recording and just so you know closed captions are available and If you would like to use that you need to
enable them from your toolbar and thank you again so much for joining um this uh
covid-19 health and safety task force webinar we’re going to be discussing the end of the public health emergency and
and is intentionally in quotations because we know that even though the public health emergency is ending covet
is not over so this is a conversation with experts to talk about what’s changing what that means for you and to
help you navigate this next stage of the pandemic we’ll be discussing the history of the public health emergency we’ll be
changing after it ends and how this will affect patients access to care including
Post Acute covid-19 Care and we’ll also discuss how the end of the public health
emergency will impact our response to the pandemic and really Public Health generally we do have a q a and if you
have questions you can drop that in that q a function and we’ll be going through and moderating those questions
throughout and with that I’m going to introduce our three expert panelists
first is Andrew wylam Andrew is a lawyer and patient advocate Who currently
serves as the president of pandemic patients which is a 501c3 non-profit organization that works to relieve the
harm caused by covid-19 and post covet conditions as a seasoned government
relations professional and public policy expert Andrew guides the organization on its mission of providing support and
services to people who’ve been affected by coven Andrew has dedicated his career to advocating on behalf of Americans
living with chronic illnesses like covet and other illnesses and he’s really passionate about elevating their
experiences to the so that those experiences can reach policymakers all across the country second is Liza Fisher
Liza is a national Healthcare Advocate and yoga teacher who’s committed it to Bro to providing education around Long
coven and Associated conditions after being hospitalized for months and becoming disabled by long covid Liza
recognized the world of under acknowledged and under research complex chronic illnesses that are affecting
Millions across the country and across the world and this led her to becoming involved in advocacy and research and in
public policy and Liza has co-authoused research manuscripts she’s been a
patient representative for nihs Recovery initiative and the University of South Carolina’s covet patient engagement
studio and she has testified before Congress she currently serves on the
long covet alliances executive committee and Dr Alba azola is our third panelist
doctor is a rehabilitation physician helping patients restore function and movement after an injury or illness her
expertise includes neural Rehabilitation or Rehabilitation for swallowing disorders Dr Ozil currently serves as
the co-director of the Johns Hopkins post-acute coping 19 team and works at the Hopkins University School of
Medicine as an assistant professor of physical medicine and rehabilitation and with that I’m going to turn it over to
Andrew to kick us off thanks Andrew
mentioned I am the President of pandemic patients and we are a non-profit patient advocacy Organization for people who’ve
been affected by coven 19. we work to raise awareness about covid-19 and postcode conditions and we also work to
ensure that people affected by covet receive the support and services they need to live their best lives so we’re
very happy to join today’s webinar to provide some information to the public about the many changes to health care
that will occur alongside the end of the public health emergency this is an important topic for us
because the end of the public health emergency will shift how we think about covid-19 how we respond to being exposed
to covid-19 and the tools that are available to us that we experience at covid-19 infection
so the end of the public health emergency this is something that’s coming up on May 11 2023 that’s less
than one month away so this is going to change the tools we have available for prevention diagnosis
and treatment of covid-19 that means that vaccines tests and treatments might
become more difficult to access there’s also changes coming up with Telehealth uh prescribing rules and
um those will impact access to care as well I’ll talk a little bit about the Strategic National stockpile which will
still have some supplies available to the Americans Falls and buyers last but
again circling back to May 11th that’s the big date that we’re looking at so I want to start by how did we get here
well um the public health emergency itself was declared by the Secretary of HHS
Alex bezar back in 2020 and that was in response to discovering the code 19 was
fighting around the world and when a public health emergency is declared there are additional flexibilities that
the government has to respond to that crisis so as it says here when a PhD is
declared the Secretary of HHS may take such action as may be appropriate to
respond to the PHD including making grants entering into contracts and conducting and supporting investigations
into the cause treatment or prevention of the disease or disorder
additionally uh when a public health emergency is declared the secretary can
waive or modify certain Medicare Medicaid chip HIPAA and privacy
requirements they may modify the practice of telemedicine through their Ryan height online pharmacy consumer
protection act and they also May Implement regulations allowing the secretary and the DEA administrator to
designate patients location of patients and use of Controlled Substances during a public health emergency declared by
the Secretariat further it will enable the Secretary of Defense in consultation with the
secretary to deploy military trauma care providers during care providing care at
high Acuity Trauma Centers so there’s a bunch of other Provisions that also get brought in here but these are the the
top of Mind ones that I think people are going to see the most changing when the
public health emergency ends and so not just um when the emergency was declared but
Congress took action in the Years following to implement other policies that were tied to the
public health emergency so for example the family’s first coronavirus response Act made it so that
um that Medicaid had to cover testing and treatment for covid with no cost sharing and they also required health
insurance plans to cover tests for covid-19 without any cost sharing or
utilization management that means that pretty much everyone in America gets to go and get some at-home tests for PCR
tests uh pretty much at no cost to them and without being subject to utilization
management techniques like prior authorization so shortly afterwards the coronavirus
Aid relief and Economic Security Act or the Charis Act was passed and that made some additional policy
changes and that required coverage of covid-19 vaccines and their
Administration without any cost sharing so the reason these are important is because those policies were implemented
but they weren’t going to last indefinitely in the statute they were tied to the end of the public health
emergency so now that we’re looking at the public health emergency ending these policies are going to be changing
so I mentioned Telehealth earlier as well um with uh the practice of telemedicine
historically it’s been kind of restricted particularly in Medicare so
the public health emergency made some changes that made it easier to access different Healthcare Services through Telehealth
um and so what that means is that uh you can uh you’re not restricted in where
you are or where your provider is um for accessing Telehealth services or
you might not have to use a specific computer system during a Telehealth visit uh for example
people are able to use an iPhone or FaceTime uh during the public health emergency to access care from their
provider or they can even access that care through just an audio call instead of having a video be a competitive that
as well um also there are exemptions to State
licensure requirements that have allowed Telehealth to be practiced across state
lines so if your doctor is in Texas and you’re in New York um the requirement that your job should
be licensed in New York to get care to you has been waived and that will be changing
so there’s a few other things um on Telehealth as well uh one thing that is different is that Health
insurers have been allowed to offer Telehealth as an accepted benefit which means that it can be treated like
a dental plan or a vision plan it can be a standalone plan that isn’t
tied to your health insurance policy um that’s something that will be changing um I haven’t seen a lot of that
happening during the pandemic but I’m sure that it’s out there um and for some of these changes to
Medicare in particular uh the the updates will be happening uh in a
staggered fashion so some things will happen immediately when the public health emergency ends some flexibilities
have been extended for a year or until 2024. um and some changes have been made
permanent so if you were a senior you’re going to have a lot better access to help to Telehealth generally than you
did before the pandemic um but uh it’s not like an easy across the board everything is great situation
there’s still going to be some restrictions um so on this page I’ve got an
additional link for some more information where uh the Federation of State Medical awards has listed out uh
which states will still allow telemedicine across state lines so
that’s a really helpful resource if you’d like to learn more about what the situation is going to be like in your
state so next um with Controlled Substances
um during the public health emergency patients have been able to get prescriptions for Controlled Substances without completing an in-person visit
with their help in the prescribing provider uh and that’s something that will be ending
so um The Drug Enforcement Administration they have started the rulemaking process
to extend that flexibility temporarily so that patients can still have
continuity of care and coverage for Controlled Substances um the proposed rule uh closed its
common period on March 31st so we’re waiting to see really what the next step is for them
or what they’ll be allowing but I can go over some of the components of that Proposal with you on this chart here so
uh really if you’re going to focus on anything here it’s it’s in those green columns so if you are a patient getting
a prescription for a schedule 5 to schedule a two controlled substance
um you will need to uh have an in-person visit with your provider perform that prescription can go through or your
provider who did an in-person visit needs to refer you to the other provider who gave you the prescription by
Telehealth um if you uh don’t have that you’ll be able to get a 30-day initial
prescription but you won’t be able to refill it and it’s that’s for a schedule two or above
um controlled substance you will not be able to get that prescription at all and the reason that’s important is for many
long coveted patients they are prescribed stimulants to help their systems of fatigue and those
stimulants are controlled substances so if you’ve been getting that through a doctor and you’ve not completed an in-person visit it’s important that you
establish that in-person care um so you can continue getting that prescription uh in the proposed rule
there is a six month grace period so if you establish care with the new provider
and got prescriptions during that time um you will continue to be able to do that for six months after the public
health emergency units but after that period uh the in-person requirements will apply
so in the in the background of all of this happening um there have been uh
back in the statutes I mentioned earlier they required states to
um provide continuous coverage for Medicaid immunities so that’s the health program for uh
low-income Americans um and what this meant is that States could not check their income
during the public health emergency to verify their eligibility so they had to
keep them on that program for the length of a public health emergency so um originally That was supposed to end
um alongside a public health emergency or you know within six or twelve months of it but the Omnibus spending bill from
Congress and this past this past December um that uncoupled these issues
um so that those eligibility redeterminations would begin
um in April of this year and they’ll be continuing for the next 12 months
so the reason that I mentioned that is because um the uninsured population is going to
be affected uh maybe the most as far as uh anyone affected by the changes
um with a public health emergency ending and I’ll I’ll discuss that a little more on the next slide but I just want you to
can I keep that in the back of your mind as we go through the the following slides because
um as we transition here uh people are going to lose their Medicaid coverage
because they’re no longer going to be eligible um and they will transition either onto a different sorts of health coverage or
they’ll become uninsured so uh the the Medicaid Program had you
know millions of people um that uh got those benefits during the pandemic so there are a lot of people
who are going to be going through this eligibility redetermination process for maybe the first time
um so so access to care so when I talk about access to care what I really mean is how people can afford
um tests treatments vaccines or Healthcare visits
um and that’s really going to dictate uh how we respond to the pandemic moving
forward so what I want to discuss specifically here is uh the vaccines you know we’ve got
the visor moderna and novavax we have tests that includes both at-home tests
and PCR laboratory tests and then it also includes treatment with Paxil did
and like at real so um we’ve seen in the past couple of months uh that Pfizer and moderna have
announced that the prices of their vaccines are going to go up
um and uh when the public health emergency ends uh all of these things
will be transitioning to traditional health coverage and so that means uh you might have a copay uh
when you go to get a vaccine or pick up a prescription for absoluted or when you go to buy at home tests at the pharmacy
um and so you we kind of have to rewind in our minds a little bit to how uh you
know health insurance coverage worked uh before the pandemic to sort of reorient ourselves to what these changes mean for
us because for a very long time we had guaranteed access to these things those
statutes that Congress passed meant we don’t have to worry about paying for the at-home test we can just go pick them up
and you know our insurance covers it or we can get it through the mail um or you know we can just go to the
Walmart Corner pharmacy and get the vaccine and not have to worry about uh the checkout line
so uh when Pfizer and moderna announces their vaccines are going to cost more
um that cost is going to be shouldered by individuals and health
insurance plans um so PCR tests usually cost about 130
dollars um depending on where you get the test if you get it in the hospital it can often be more expensive than that
um so many Americans might be faced with uh you know I have to pay out of pocket for this now
um if I get covid can I afford to go get tested or do I just want to you know
ignore it um and not know my status and hope for the best um so
for for treatment uh the government has been purchasing uh Paxil did and like
every oh in bulk um so there were about 23.7 million
courses of Paxil did purchased by the government uh as of some you know surface research obviously
put together uh and those were purchased at about 530 each uh and that is a
pretty good deal for the government um and now we can probably expect that
the prices at in the private Market is going to go up so when someone has covid and they get
prescribed tax lipid they’re gonna go to the pharmacy and they might get a bit of sticker shock
for how much their accident costs it could cost a thousand dollars for reposted treatment it could cost two
thousand dollars it could cost more and so uh that’s not going to be great for health outcomes so when a person
gets exposed to covid they’re going to have to actually decide like is this worth the money to treat or do I want to
take my chances um and so we view that as a pretty bad thing uh that we want to avoid
um so that’s kind of an overview of how the private Market is going to work but
um with Medicaid uh again that low-income program they’re going to continue to offer pretty uh
comprehensive coverage uh through 2024 for the integral you said stay on Medicaid and aren’t push off the rules
because their income changed um and Medicare the program for older Americans
uh their part B is going to be covering PCR tests but Medicare beneficiaries won’t be able to access at home tests
the same way they have been um and so that’s going to make it a little harder for uh people to test
themselves at home um and then Medicare Part D that’s the prescription drug program for Medicare
um they are they do not cover things that are um provided an emergency use
authorization uh which is what Paxil did and like everybody have so um if that
doesn’t change in the near future Medicare beneficiaries might not have great access to coded treatments and
anti-violence so um the big takeaway here is that the uninsured populations you know they
don’t have private coverage they don’t have Medicare they don’t have Medicaid uh everything for them is pretty much
going to be out of pocket and they’re going to experience probably the greatest access challenges of any
population um and fortunately though uh we have seen
that moderna and Pfizer have announced that they will have patient assistance programs for their vaccines uh which
means that for people who are uninsured they should be able to get the vaccine still at no cost to themselves but
they’ll need to participate in that patient assistance program uh to get the benefit of that so it’s an extra hurdle
that people aren’t used to but there should still be um an access channel for that population
if they are interested in getting vaccinated
um there are still some supplies that are available from the Strategic National stockpile uh for uh kobits
tests treatments and vaccines and as long as those supplies last people will still get access uh to them
uh hopefully at low or no cost but those supplies will eventually run out and we
don’t really have an easy way to know right now like what remains in that stockpile um Congress can purchase additional
things and you know to add to the stockpile um but that’s not you know a guarantee and so we’re kind of preparing for this
full transition to happen and when those uh supplies run out that everything used to to traditional coverage
uh and the last point on this slide is uh State programs states can still access programs to help people get uh
tests and treatments you know they can have their drive-through sites to ensure that people can get tested if they need
to but um that’s something that states have a more limited budget to support
um so you know it’s harder to rely on those things from you know long-term strategy
um so reporting and surveillance uh is going to change a little bit too um so on the screen here I have a map
that shows what the levels of community transmission are um and there’s a link to that map at the
bottom of the screen this is this is pulling from the CDC data that shows us really what is how is frightened what’s
the risk um and that’s something that we might not have the same visibility of after the
end of the public health emergency um so there’s kind of two big types of reporting that happen here uh one is the
hospital reporting data and the other is the laboratory reporting data so hospitals is telling you you know how
many people are in the hospital secret covid the laboratory data is telling you uh how many people are testing positive
with covid uh in the PCR tests and so Hospital data
is going to continue uh through 2024 but the reporting will be less frequent uh
however the laboratory data is going to change more significantly uh HHS will no
longer have the authority to require Laboratories to send their test data to CDC so that’s going to make it harder
for us to see what the test positivity rate is across the country so an app like this where we can see Community
transmission it’s not going to be as accurate it’s not going to be as up-to-date or timely
um so I’ve got a second chart here from the same source that shows over time
what the aggregate levels are and this is up to date as of today
um the real thing that I would you know focus on here is that you know we still have higher case counts than other times
during the pandemic there were other times um and one thing we’ll also lose
visibility on is the vaccination data um from the states it’ll be a little
harder for us to see you know what percent of the population in those areas is or has received um their vaccine or
booster um so uh coming up on my last two slides
here we got a lot of questions about patient safety um specifically in respect to Health
Care Facilities um and uh it’s something that there’s a
lot of uh concerned about um because a lot of Hospital Systems
have moved away from masking mandates for their staff um you know in the past couple months
and that’s happening because there was an Osho rule that lapsed the emergency
temporary standard um and the agency has started rulemaking
for a final rule that would um touch on topics like masking vaccination
requirements ventilation physical distancing in healthcare facilities and as of uh January of this year it’s under
final review by the office of information and Regulatory Affairs unfortunately we don’t really know uh
what’s in that final rule but we’re keeping an eye on it because if that gets passed and it has certain
requirements hospitals may find that they have to go back to Massillon for their staff
um and uh that could be you know viewed very well uh by vulnerable populations but
um we’re keeping an eye on that um I see a question in a chat about how can we impact Ocean’s decision
um right now uh things are kind of happening behind closed doors
um and uh people haven’t been able to talk about it publicly so there’s not a comment period yet
um but when one does become available uh make sure you stay in touch with us because we will be engaging with that to
make sure it reflects the concerns of the community um so kind of to wrap this all up
um and to put it in a boat um when the public health emergency ends um access to vaccines tests and
treatments and access to Telehealth Services um this is this is a shifting landscape
for some people depending on their source of coverage um the changes may be minor and really
might feel like more of an inconvenience but for others they might have to choose how they’re going to include uh kobit 19
tests for treatments in their limited household budget and even worse a person could get sick
with covid and get sticker shot at the pharmacy and choose not to treat
um the covid with the tools that we have available um and that will lead to of course uh
worse Health outcomes um so we’ll know less about how covet is
spreading around us um the tools that we need access to to defend ourselves against uh covid are
going to be more limited it’s not guaranteed anymore and we may face greater exposure risk to covid in our
communities and the patients who do get sick may experience forced Health outcomes uh due to financial access
barriers so we fear that being overly optimistic I say we pandemic patients uh
being overly optimistic about the end of the pandemic uh will expose Americans to further illness disability and depth
but there are some steps you can take right now to equip yourselves for the tools that you need to stay safe you can
stock up on home tests while they’re covered by insurance or through the U.S Postal Service you can get four per
person per month uh covered for free so you should be able to get two more rounds of that before uh the health the
public health emergency ends next month um also you can talk to your health care provider about getting your covid
vaccine or booster for free while it’s still free um if that’s a choice that you’d like to
make um also make sure that you’ve established in-person care with any doctors that you’re seeing that
you established care with during the pandemic to make sure you can continue to get prescriptions from them if
they’re controlled substances also make sure you talk to your out-of-state Health Care Providers to
see if you’ll be able to continue receiving care from them via Telehealth after the public health emergency ends
and we recommend continuing to wear a well-fitted face mask when you are
around other people indoors and this is just a personal tip for me about mental health and wellness I
encourage you to start to explore new qualities and activities you can do outside
in a fresh air and sunshine to just make sure you’re staying healthy and staying active and
doing it well safe so that concludes my presentation and I’m going to turn it
over now to Liza Fisher who will explore the perspective of long-covered patients
thank you Andrew so as um introduction said before my name is Liza
Fisher I am reside in Houston Texas and I’m a long covered patient
um a little bit about my background my story I got covered in June of 2020 and
um I struggled to find Healthcare and testing initially and ended up being severe and I was in ICU and then
hospitalized in the rehab hospital from July to October of 2020.
um then following the Gambit like many others symptoms arose and I went down
the pathway of getting diagnosed with all the associated conditions like dysautonomia pots and cast hypermobility
mecfs Etc um along this pathway my
my privilege has also declined I went from being fully employed and having
Private health insurance to being terminated entering disability both
private and public and now doing the transition onto public assistance with Medicare and whatnot and so a lot of
these um these topics affect me personally and many in my community
um we reached out uh to see what questions from the community specifically and I’d like to go ahead
and answer those first um the first question let me switch the next slide is how do I contact my
representatives and advocate for accessing care well there’s a link provided and you can go to pandemic
patients covid-19 Advocacy Center and you can subscribe to the mailing list get notified for advocacy opportunities
when they become available there’s an engagement tool there that has guidance on how to be persuasive Advocate how to
build relationships with your elected officials and how to share your personal story effectively
also you can reach out to your elected officials directly for further
guidance using some of the links provided and some of the current advocacy opportunities that are available are contacting your elected
official about post-sponsoring the stop the Wake act stop the weight is what actually I actually testified before
Congress about and when you go through this process if you do get accepted on disability there’s an additional 24
months after your approval date um not when you were plain medically
disabled but approval date before you can get the Medicare or Health Care coverage associated with your disability
so this is an act to terminate that 24-month weight
um and then the next uh advocacy opportunity is to contact your elected officials to co-sponsor the care for
cobit app and that provides resources for education for health care providers
furthering research with private Public Partnerships um and much more resources for the
community next slide
next question and if I’m required to get a vaccine for employment but I’m uninsured how is this going to affect me
well like Andrew said Pfizer and modern are creating this patient assistance programs that will ensure that uninsured
populations have access to their vaccines again the details are still being worked out but if this is a short-term solution
for people who are uninsured next slide
does this mean that tests will stop coming in the mail can I still get tests from the government
well the USPS will continue to distribute the at-home test kits from the government stockpile while the
supplies last again as Andrew mentioned Congress May provide more funding to increase the
supply but we don’t know if that will happen and health insurance plans may continue to cover at home tests but
there may be a cost sharing portion required
next slide my child needs testing and we’re on
Medicaid how much is this going to cost their family well Medicaid will continue to cover the
at-home covid-19 with no cost sharing through September 2024. again there’s a
link that um you can access to provide more details on your health care coverage and access
next slide where can I get the treatments and what are the costs
well you’ll still be able to get packs a little bit from your doctor and pharmacists will still be able to
prescribe it directly however the cost may be too high for some and insurance plans may be required
um a prior authorization prioritization like example you may have
to have a positive PCR test before insurance will cover your password it’s also important to note that there
is a certain window of opportunity to get that password um and so if you are
there’s a Time determination and some fruit planning um required now to think about that
having your testing accessible in order to be able to get
the path of it in a required time the government supply of packs of it um is purchased again looking at that cost of
what they got it and what might happen with the increase in cost it’s another thing that we need to plan for
and the uninsured um may be responsible for paying a pope
pay when getting prescribed packs of it and or paying the retirement amount which could be hundreds of thousands of
dollars so essentially uh it goes to show that the uninsured are going to be
affected the most next slide
are there any impacts to my ability to access off-label treatments and Associated conditions for Associated
conditions or emerging treatments so products authorized by an emergency
use authorization will remain available because the National Emergency Authority allows for eua products to be marketed
in a separate then Public Health Emergency the SDA has the authority to issue new euas and amend existing euas
during the first period in general off-label treatments should not be affected and there is a link to
explain more of that additionally I had a private conversation with somebody just yesterday who was having trouble
and is in the VA system and I’d like to note that there is a link the VA does go
through a different formulary and has their own formulary for what drugs you can access or not and there is a link to
see what is available to you so you can plan ahead um and if any other options are
available to you as well and
I believe that’s it thank you
Thank you Lisa and thank you Andrew this has been super insightful like they mentioned earlier my name is Alba azola
and I have been co-directing the postcode clinic at Hopkins and I was a
physiatrist um prior to the pandemic treating spinal cord injury patients traumatic brain
injury patients uh stroke patients Etc people that had big impairments and
helping them get back their functions um so when the pandemic hit we were
approached by the pulmonary team because we knew that there was going to be a need for patients to to get care and we
also had a sense of during Mars um and during SARS kuv1 how there were
patients that had not such a debilitating acute Illness but had prolonged symptoms that were quite
impairing so um we joined forces and created an
outpatient service for for this group of patients and that happened throughout the nation in
um smaller or in academic centers throughout and
it’s I did not um know anything about chronic illnesses
and I mean I mean other than the ones that I was treating but the mecfs group
The the this autonomia and how limited the access to care was to them
um so I started first you know uh sending them to the saranomia specialist
but when the weights were two three years we decided to start working together and creating Pathways to
address some of these medical issues um so I worked together with the Academy of physical medicine and rehabilitation
creating manuscripts to um teach physicians primary cares mostly but
other physiatrists as well uh how to evaluate these patients and how to
um approach with treatments that are effective at least in making their
symptoms better and as the pandemic evolved
the emphases are on Covert dwindled the number of people that were having extra
time to work for the clinics started to go away so a lot of people were doing outpatient programs that were closed or
research that had to be placed on hold because the pandemic so I it initiated
with a lot of volunteers of people that were just unable to to do their work
when there was a lockdown as that lifted um the resources started to to get
smaller and smaller for us and um many larger universities like the one
I’m part of were able to get economic support from their medical systems to
keep providing the services for this patient population they were very limited
um and the the the definitely the millions and
millions of patients that are suffering from non-covered don’t have the adequate care available or there’s there’s
certainly a gap in education to the Physicians on how to approach this
patient population and how to best serve them um so the the problem comes and I just
wanted to highlight the the just this logistical issue when you’re having a long coveted Clinic you have patients
that are impaired cognitively and physically so
um we initially relied a lot on our Telehealth um services and being in the state that
I’m in which is Maryland uh geographically there are many people over state lines in Virginia and
Pennsylvania and West Virginia where we are one of the main centers closest to
them that have this type of treatment and we were able to service those
patients and slowly as as the
um the the there’s waivers that were put in place by States uh started to lift one
by one we started to to have difficulty uh treating these patients they had to travel in person which would cost them a
big flare of symptoms um and sometimes some of them don’t have the financial means to be able to to do
that to access service so it became more and more increasingly obvious that we
were not generating uh profits uh in terms of of paying for
the staff that’s necessary to to run this type of Clinic um and
and it’s it’s a challenge um and we’re really grateful about all the advocacy that has been put in place
to support clinics and they’re starting to um roll out uh announcement for fundings
for support of this clinics but um I think that there that that’s an area
where we could um certainly put more pressure so that we are able to fund the services just
like the patients with clients or have just like the patients with heart failure or diabetes there are certain
programs that are federally funded that can help expand those patients receive
services so I think that um given those timeline of the lifts of the pandemic
emergency we were kind of in a gap time where we have we’re not ready to service
that population once they are uninsured um once they are unable to have access
to medications and Care um I also wanted to highlight my
experience with Equity issues um and this is I think I probably
um uh singing to the choir here um but there’s definitely uh the gap or
the inequities that we had in healthcare in America have now widened and and even
broadened more uh after the pandemic you know for multiple reasons right but
it’s becoming clearly evident um in our patient populations uh that are able to access the level of
care that can be provided by a loan covered um Center um and and this is very
um this is where we also need Federal funding to be able to provide access to those people so that um we can be
serving equally patients um of all
that are coming from all places because we know that long covid and kovid
affects more lower socioeconomic status patients uh uh racially
um people that are marginalized all those patients have employment that make them
more exposed to the virus so we we know that by numbers people in this
um inequitable position are being more effective but all clinics that are
serving local with patients have a preponderance of Caucasian populations and we are actively trying to make
changes so that we’re able to service them now
the other highlight that I wanted to to say was that we we want to as as a
collective there’s a multi-disciplinary past collaborative we’re trying to
create uh standards of care um implementing the needed supports that
the patients will need whether that is social services Community Health Care therapist
um to to really be able to optimize and standardize the the care that’s
delivered to the patients that are affected by local men and that leads to to my last point and
that is that the care that we can provide right now is minimal
um it’s just temporizing some of the the symptoms trying to improve quality of care uh trying to compensate to improve
function support the patients through that but we don’t have a Curative treatment at this time even though we
may soon in a few months hopefully um that there’s still a bridge between
the basic science and the clinical science and how to match that and and
the understanding of the pathobiology of the virus itself and how
it produces this low covet symptoms so one thing that we feel very strongly
about is educational patients because these patients uh you all are a very
vulnerable population you’re suffering greatly your life has been turned upside down it’s just like having a traumatic
brain injury a stroke spinal cord injury it’ll change your life just as much as
those type of events and we don’t have proper treatment we
don’t have standards of care um and it it makes it very easy for for
these patients to become vulnerable to predatory um uh companies that are are trying to be
for profit so I think that’s another area where the federal government could also have a role
um in order to prevent um abuse to of this vulnerable population at this time
um and lastly I wanted to mention that I think you know what has been mentioned
about the decreased access to packs of it to vaccines we have hard data it’s not just we think that packs of it
there’s you know very well uh created studies that have
demonstrated that there’s a decrease in Long covet risk with use of tax limit in
their acute illness period we know that and um we know that vaccines reduce the risk
of long covet they don’t make it completely go away but they certainly reduce significantly uh the the risk of
developing on covet and we know that social distancing masking
Common Sense things um to prevent the spread of the infection matter and having the public
knowledge of the level of infection in the certain community that they live is
going to be very important for patients to be able to choose to implement those measures when there are higher levels of
spreads within the community so all of this um you know kind of
Health uh Community Health impacting um access to to knowledge to to levels
of of the of the virus in their Community um it impacts greatly in a negative way
and and there’s not enough public understanding of what long covet is in
order for people to understand the risk that they take when they are not implementing those strategies so another
point is education to the public on exactly what long covet can look like
and in order for them to really have a make an understanding and educated
decision on whether they want to implement certain measures or not so I just wanted to highlight those
points and I’m happy to to discuss more on us answer any questions from the panel or public
we had uh one question in the chat um that I think you touched on but uh maybe you can add or answer a little
more specifically uh the person asks um are the long-coated clinics funded by
NIH or the hospitals and will they close due to lack of funding
uh currently the postcode clinics are funded by
hospitals system there’s no proper funding there’s an
announcement for funding that opened on April 7th for proposals uh for funding
of loan covet clinics that are already existing um this will I think the deadline is
June the first week of June so we’re we’re actively working on on that
there’s been nine million dollars allocated my understanding is they’re trying to fill in nine they’re trying to
to sponsor nine clinics throughout the nation so so that’s a just like a little scrape
of the surface of what we really need and definitely came
pretty late I would say knowing the climate of our of our Clinic status at this point throughout the nation
well I asked um we’ll give you just a minute or so to type those in if you’ve got anything
um and then we will close here in just a moment uh there was a question posted about
um why the CDC you won’t say that it’s airborne
I don’t know that’s the answer I’m not sure why
um I mean there’s a lot of pressures from different angles that
may be influencing the decisions of their um
public statements and recommendations
um if if I need to come in right before we close we got one here
um uh Rebecca saying uh thank you so much for your hard work uh sadly this is not
encouraging um definitely empathize with you on that uh doing what we can to to make the
picture a little Rosier but um yeah things will be a little unsteady
um I just ordered my family’s free covet test thanks to you and I will make sure
that all my patients do that this next few weeks
I I was just taught coming out of Walmart where my arms full of them uh so I’m trying to get mine too
um so uh okay we have one more slide to get to as
we close um uh Rebecca um
mentioned that she wasn’t eligible for packs of it um that might have been because
um there are a lot of medication contraindications with packs of it um where it might be unsafe to have it
if you have certain medications you’re taking um so there are certainly some access
restrictions on accident that are not Financial but more practical
the the medical restrictions are very loose on the way that it’s worded so in terms
of medical qualifications to receive Pax love it it’s very much at the discretion
of the provider um I mean other than you’re positive for covet and you’ve had symptoms for less
than five days um so so if you’re within that group
um if you have long covet I consider you at high risk and I think most of the
medical community does too so um but yeah if if that’s the issue
um that shouldn’t be this um and Rebecca asks if it’s common to
receive multiplayer here um it’s it’s not as common uh because the emergency use authorization on that
medication um only allows people to get it uh when they can’t access tax of it as a first line option
um so that may have been why you received that
um so uh to close here because we’re about at the top of the hour um today’s webinar was facilitated and
presented by pandemic patients and coveted survivors for change along with Dr ozola from Johns Hopkins
um I want to thank everyone for their presentations today um if any of our guests would like some
more information on our organizations our links are here on this page to our website
um and we have one final slide where we’d like to announce um that we will be going to Washington
DC next month on May 15th to host a congressional briefing about long covids
so we can educate members of Congress and their staff about this extremely important issue
um there is a QR code up in the top right corner uh that you can use we are having a fundraising campaign uh through
the end of this month uh to raise the money that we need to host that briefing um so if you’re able we encourage you to
support our efforts so we can uh have a great uh event and uh get some policy
changes implemented in Congress that will help patients with long covid um so that is all for our
um presentation today there will be a recording available afterwards if you are interested in re-watching this or if
you missed out on the original broadcast but thank you again for everyone for your participation your questions your
presentations and we’ll see you all soon
bye everyone thanks
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