On February 3, 2021, Council members met with Maine CDC Director Dr. Nirav Shah about issues facing the developmental disabilities community in regards to COVID-19 and vaccination.
Dr. Shah: Thank you all for hopping on this afternoon and spending some time talking about issues around COVID-19 vaccination. Nancy, I will let you set the table and proceed as you see, as you see best.
Nancy: All right, thank you, Dr Shah and thank you for being here, and I wanted to ask Maryann Harakall if she would introduce you and then I will move on and facilitate questions being asked.
So really quickly, I'm Nancy Cronin. I'm the executive director of the Maine Developmental Disabilities Council and we are delighted to have this meeting today. Maryann, will you kick us off?
Maryann: Absolutely, thanks Nancy. Dr Shah, I really appreciate taking the time to meet with the DD Council and I'm not sure how familiar you are with them? So, I just wanted to give you just a quick very brief overview of them.
So this is, this is the committee in which CDC has a seat on the Council and so that's me as the director of Children with Special Healthcare Needs, and the group is very committed to creating a place where all people are valued and respected because communities are much stronger when everybody is included, and this group really is about conducting advocacy, building capacity, making systematic changes in all sorts of aspects of their lives.
And so we wanted to take today to take the half hour that you've given us to sort of go through some questions which Nancy will facilitate through and give you the opportunity to talk with the group and give the group the opportunity to hear directly from you. So with that Nancy, I will go on mute and you take it away.
Nancy: All right, thank you! Well, we have sent you eight questions, and Jon would you please ask the first one?
Jon: Hi, Dr Shah. Some of my friends who have services from providers that also are in group homes are getting their vaccines organized by the provider. Some of the providers are adding people on the group home clinics if they have enough vaccines and they can get a ride at a moment's notice. Some people with DD don't have that kind of provider and may rely on medicaid for transportation. I hear about people who are over 70 struggling to get to an appointment for a vaccine. It seems really confusing - how will a person with developmental disabilities without the strong provider connection know when they can get a vaccine? Who will tell them?
Dr. Shah: Well, hey Jon, good afternoon and thanks for raising that question. That's been on my mind and my team's mind a lot. There are two questions that you sort of raise - the first is how are folks going to know when it's their time and turn for a vaccine? The other is how are they going to get there - how are they going to schedule it? It's all well and good for somebody who's got easy access to transportation and can access all of those things, but it's a lot harder if transportation is a daily challenge.
So let me start with the first question which is how are folks going to know when the line, the line has moved and their time to get a vaccine is ready to go. And it's going to depend a little bit on who we're talking about and what sort of services that they're plugged into. Some people in Maine will get notified that their time to be vaccinated is there from whatever health care or social services provider they see on a regular basis. Other people in Maine might get notified by their employer. Other people in Maine might get notified because the health system that they get their care from is opening up a large vaccination site. So it will depend a little bit on who we're talking about. What we're going to try to do is make those messages as clear as possible, so that everybody knows that the category that they happen to fall into is now being, is now up for a vaccination.
The other question you raise though is, how are folks going to get there? A lot of the vaccination sites are in larger cities, which might be a little bit of a drive or maybe a major drive for folks, especially from coming from more rural parts of the state. So Jon my answer there is, sort of two things. The first is - one of the services that we are working on is providing transportation. Right now of course, we're focused on older Mainers, so we're working with a different group, like Area Agencies on Aging, to get transportation services to places where they can get vaccinated.
But the other thing is that once more vaccine becomes available, whenever that is, we hope also to be able to provide vaccine not just through these big sites in Scarborough or Portland or Bangor but also in your neighborhood doctor's office or your neighborhood federally qualified clinic, and that way folks might still have to drive a little bit, but hopefully not an hour or two to get to Bangor if that's the part of the state you live in. But that's going to take a little bit of time, and so here's the bad news part. The bad news part, Jon, is that as much as we wish we could offer a vaccine to everybody in the state immediately, we're only getting right now about 20,000 doses coming into the state every week - for first doses. We've got 1.3 million, 1.4 million people to vaccinate and we're only getting about 20,000 doses a week, so unfortunately it's going to take a little bit more time before vaccine is more available, and that's one of the things that's keeping me up at night.
I know that there are so many people that want to be vaccinated, and right now we just don't have the vaccine for them, but I hear where you're coming from, Jon, and hopefully we'll be able to get everybody a vaccine shot as quickly as we can. Thanks for raising that.
Nancy: Thank you. Marc!
Marc: Hi, good afternoon Dr Shah. So I've been told that I'm not old enough to get the vaccine, and I'm not on the list of conditions that allows me to get the vaccine. It doesn't make sense to me, because if I got this virus, I'm not sure I would be okay. Hopefully I can get the vaccine soon, however, when I do have an appointment, will the Medicaid transportation take me? And what happens if they don't show up or they are late? Will I still be able to get the vaccine? Dr. Shah: Sure, well Marc I don't want to, I don't want to guess how old you are, because that's not a polite thing to do, but I'm going to guess that you're not over 70.
Dr Shah: and if I'm right on that you just keep smiling. And right now, right now the governor has sort of said, you know there's a lot of folks within 1b - there's people who are 65 and older, there's people who have different chronic medical conditions, there's folks who are working on the front lines. So 1b is a pretty big group of folks that we've got to get through. And what Governor Mills decided to do was, amongst all of those groups, to focus first on the people that we know who are at the very highest risk of dying from COVID-19. COVID's a bad disease and it affects a lot of people in severe ways, including people with developmental disabilities, there's no question about that, but it also really affects those who are 70 and older really, really hard, and so Governor Mills decided to start with that group. That group's 193 000 people in Maine, who are over the age of 70. It's a pretty big group. Once we start our way working through that group and we'll probably move to those who are 65 and older, and then start talking about and thinking about how we vaccinate folks with different chronic medical conditions. That's unfortunately going to take some time.
That's not good news, Marc, but I have a rule which is that if there's bad news, I want you to hear it from me, and i want you to hear it directly from me. That way, I'm not sugar coating anything. So unfortunately, it may be a little bit of time before a lot of the folks on this call have a spot in line, but when that day does come, Marc, we are working with Medicaid to make sure that you've got a ride there, and if that ride is late or if they don't show up, I want to have a system in place where that's not held against you, where you can maybe show up, and even if you're a little bit late, because it wasn't your fault you can still get vaccinated, so you don't go all the way to the back of the line. Is that a promise? It's not a promise, but it's what I'm hoping we can put into place, because life happens - when you're on your way to get your vaccine, maybe the driver had a flat tire, maybe there was a snowstorm, and I don't want that to be held against people, just because something out of their control caused them to be late.
Marc: Thank you.
Dr Shah: Thanks, Marc.
Nancy: Thank you. Maryann. Maryann, you're on mute.
Maryann: Good afternoon, Dr Shah, my name is Maryann. I got the vaccine, but now I hear that there's different strains, like South Africa. They say that people who have already gotten COVID-19 or gotten the vaccine might be at risk of getting this new strain - something about antibodies - is this a different virus? This is kind of scary.
Dr Shah: Well, hey Maryann, thanks for asking me that - and did I hear you correctly? That you did get your first shot already?
Maryann: I'm going to get, be getting the second one next Wednesday.
Dr Shah: Hey, that's great! You know what - that makes my day, Maryann. I'm so glad to hear that.
Maryann: Because over here where I live Walgreens is coming to give it.
Dr Shah: Good, good, hey I'm glad that worked out.
Maryann: I've also got the card to show people that.
Dr Shah: Yeah, I've been on Walgreen's case for a little while - they're not too happy with me. That's because I'm not too happy with them, and I'm glad to see that they are, they're showing up and getting you vaccinated. Your question, Maryann is a really, really good one, and I think I've got some good news for you. So let me first start by talking about what's going on. One of the things that viruses do when they get together is that they change. Every time they reproduce, they change a little bit. That's how everything in life goes. And what the viruses can do sometimes is that these changes can sometimes make the virus a little bit worse - it can make it more dangerous. That's been happening in a lot of other places across the across the world - in South Africa, in Britain, even in the United States.
So the question now is - hey, what does that mean for the vaccine? Is it still going to help me? Is it still going to protect me? And really smart scientists who make these vaccines have been studying this for a while, and based on what they've told me - that the vaccines that we've got - the vaccine that you got - you got a vaccine made by Pfizer. The Pfizer vaccine is still good against these new viruses that are coming out from South Africa, from Britain, and a bunch of other places.
So for right now, Maryann, if I were you, I would rest easy at night, knowing that you've got your first dose. You'll get your second dose pretty soon, and then pretty soon after that, you'll be really well protected. But here's the thing, Maryann. If we learn more about these new things that are out there, and it turns out that the vaccines that we've got right now are not good against those new things, the scientists who make the vaccines can change them and maybe a little bit later this year, it's not great, but you might have to get a booster shot or a slightly different vaccine - probably in the same way that you get a flu shot every year. I hope you get a flu shot every year.
Maryann: I do.
Dr Shah: Great, that's another good thing that you can be doing, and so Maryann, it's possible that later this year or next year, you might have to get a booster shot to make sure you're still protected and maybe it'll be around the same time that you get your flu shot, too. So what I want you to know, Maryann, is right now you're okay. I'm glad you're getting your vaccine. I wouldn't stay up at night worrying about it, even though it's scary, and the reason is that there are some really, really smart scientists across the country who are thinking about this, and if they have to change the vaccine, they'll change it, and we'll get you the updated one.
Maryann: Thank you.
Dr Shah: Thanks Maryann. Nancy: Thanks, Maryann. Maryann, would you please mute yourself again?
Maryann: Okay, Nancy, do you want me to stay on?
Nancy: Your choice.
Dr Shah: I want you to stay on Maryann.
Nancy: Stay on.
Deb: Hi Dr Shah, thank you for taking my question. Today I represent many families who have children with special health care needs. The vaccine has not been approved for most parents of these children and I'm concerned the studies say that children with vulnerable conditions are at high risk of poor outcomes from this disease just like adults. These caregivers might be healthy and be at the bottom of the priority of the list, but their children are at high risk, and they are terrified they're going to bring home the virus. How do those caregivers get to be higher priorities so they can protect their children?
Dr Shah: Well, Deb, I don't have a great answer for you but let me start by certainly acknowledging the concern. You're absolutely right - those children who are at higher risk themselves may be very well protected, because they are indoors engaging in remote learning, not playing with friends, not attending birthday parties - although that comes at significant emotional toll to the children, but I fully understand that the parents of those children are living in concern that they may inadvertently bring the virus home with them.
Right now we don't have a mechanism, I'll just be completely honest with you - we don't have a mechanism to give those parents a higher line, a higher spot in the priority line, and that's largely because we don't have the requisite supply. Again, even within the phase that we are currently focused on, which is healthcare providers, residents of long-term care like Maryann, and then those who are 70 and older. That overall comprises about 340,000 people in Maine, and we are getting about 20,000 shots a week. And so, right off the bat, again you can see where it is it is a challenge, mainly because of the supply constraint. If we get to the point where supply increases substantially, whether that's a month from now or six months from now, then we can we can begin to start vaccinating groups who, although they themselves may not be at elevated risk, are primary caregivers to others who are. This is not only including those in your position and those of your peers, but also folks who are of a certain age who are caring for elderly parents, folks who work, say, on Meals on Wheels, who are coming into frequent contact even though they're not primary healthcare providers, they are potentially introducing the virus.
So right now we don't have a system in order to do that, because we don't have the supply. So I want to give you a straight, honest answer. I'm not going to beat around the bush on that, but hopefully when we do have sufficient supply, we can start looking at those who are primary caregivers of those who are older at higher risk.
Deb: That makes sense, thank you.
Marc: Hi Dr Shah, me again. I'm afraid that if I do get the virus, I might not be able to get the same health care as everyone else. I have heard of some people not getting ventilators in some states because the doctors think their lives are not as important as others. What is happening in Maine to prevent this from happening here?
Dr Shah: Sure, Marc. I've heard some of those same reports as well coming out of some states in the pacific northwest, Oregon in particular is where I've heard those concerns being voiced. I have not myself looked into that to know to what extent it's happening and why it was happening, but I want you to know, Marc, I was very troubled when I heard that. I heard a report on the radio about that about a month or two ago, and it really troubled me. The other thing I can say though, Marc, is that I have not heard concerns of that nature coming out of any other states around us. I haven't heard anything like that in New England, certainly not in Maine.
Now that doesn't mean it couldn't happen, because we know that the history of discrimination is such that it can happen anywhere, and just because it's not happening today doesn't mean it can't happen at some point in the future. So one of the things that we do in order to keep tabs on that is just what we're doing now. I take time, my team and I, like Maryann Harakall, takes time to meet with groups, to learn and listen to the experiences that they are sharing with us.
In some cases, Marc, it has to do with poor or discriminatory treatment in the health care system, sometimes it has to do with racial discrimination, sometimes it has to do with geographic discrimination, sometimes it's by age, and we hear a lot of those concerns being echoed to us. We look into them sometimes there was more to the story than what was relayed to us. Sometimes it's really concerning, and then we take action.
So one of the best things that you can do, Marc, and that your friends can do, is to keep being active on the Council, because that's a great way to have a direct connection with us. So that if we start hearing about things like this, we can jump into action and look into it.
Marc: Right, thank you.
Jean: Hi, Dr. Shah. What do parents of adults, their adult children, do if providers are coming to their home refuse to get a vaccine or to wear a mask? Our children, our adult children, need the services, and providers are hard to find, and this isn't an easy choice.
Dr Shah: Wait, so Jean, you're telling me that there are health care providers who are coming to your home...
Jean: ...to some families homes...
Dr Shah: to some families' homes, homes in the abstract..
Dr. Shah: ...who are interacting with folks who are at higher risk and those health care providers are refusing to wear a mask?
Jean: They're not wanting to wear a mask, they're refusing to, yes, and some of them are stating that they will not get a vaccine.
Dr Shah: Okay, well let me just go back to Marc's earlier question - this is why forums like this are really important. Jean, you don't need to go into the details now, but I would appreciate hearing about them. If you could send a note to Maryann Harakall who can relay it up to me.
You know, my approach to this is pretty simple - if you're a health care provider, if you are licensed in Maine to provide health care services, unless there's a just overwhelmingly compelling reason why you're not wearing a mask, you should be wearing a mask when you're interacting with patients. So if that's not happening, that doesn't work for me. If they don't want to get vaccinated, even though I disagree with that, we're not in a position to force people to be vaccinated. I think a group like this would appreciate why that is not a good approach to getting folks vaccinated, but wearing a mask is not, it's not optional. Their inconvenience in wearing a mask is not a reason not to wear one and for healthcare providers, wearing a mask even before COVID was very standard and so there should be no reason during COVID why they won't.
If you could relay that information: the provider, the organization with which they worked, the nature of the work that they were coming to your colleagues' homes to do, I'll gladly send some strongly worded emails.
Jean: Thank you.
Nancy: Thank you very much for that. Kile.
Kile: Good afternoon Dr Shah. My question is, I have friends that used to live in Pineland and they always got forced to get shots. So as an adult with DD are we...are we forced to get, will we get forced to get the vaccination?
Dr Shah: No you won't, Kile. Now, I'm familiar with the history of Pineland and the nature of institutions of that sort. I feel pretty strongly about issues like this - that's why I mentioned what I said to Jean, which is, I just don't think forcing people to do anything is a good policy. And no, Kile, you will not be forced to get the shot. I hope to be able to show you the evidence as to why getting the shot's a good idea, but ultimately, Kile, the call is yours. You're the one who's in control of your body and I'm not going to force you to do anything that you decide you don't want to do.
My job is to give you the facts in a straightforward way, the good and the bad. I don't candy coat things, I don't sugarcoat things, but I hope that I can give you the facts and my best recommendation for what you should do when the time comes, and I hope that at that time you decide to be vaccinated, but if you decide not to, I respect that, we'll still be friends, and you won't be forced to do anything.
Kile: Well I'm getting the vaccination anyway so...
Dr Shah: Great, good, good. Well you know, I think what I would ask, Kile, is that: a) you tell other people in your community, other friends of yours, that you've decided to get the vaccine.
You're someone who's active on the Council. I'm gonna take a guess that people in your circle, your community, look up to you - they look to you as someone who's got information. One of the best things that you can do, Kile, is to tell other people that you got the vaccine when it's your time, and tell them why, because again, you're going to be looked upon as somebody who's got an inside track to information. And if you are proud of the fact that you got vaccinated, and you tell people why you thought it was the right decision, we don't have to. That's huge. I can talk about the stuff all I want, but people don't relate to me, right? They're going to relate to you.
Kile: Okay. Thank you, Dr Shah.
Nancy: Dr Shah, I would like to thank you very much for coming. I hope you guys can all hear me right now, I have unstable internet access, but I wanted to thank you. Would you be willing to answer a question or two via email? I know you have a hard stop at 3:30, but this has meant a great deal and I thank you very much.
Dr Shah: Well, it's my pleasure, Nancy. I'm glad that you guys were, I'm glad you reached out, I'm glad I was able to chat with some of the folks on the Council today, and I know that the news is not always good, but I want you to hear about it from me. Even if it's good or bad, I want you to know where we stand, and Nancy, I'd be happy to answer some additional questions by email, and I look forward to joining you all again at some point in the future.
Nancy: Thank you so very much, and thank you for everything you do.
Dr Shah: Absolutely, everyone. Have a good afternoon, thank you all.
Maryann: Thanks Dr Shah.