Diabetes Under Lockdown

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Craig: From Beta Cell and JDRF, this is Lunch Break, the midday live streaming show about people living with Type 1 diabetes. I'm your host Craig Stubing. We have people watching on Beta Cell's and JDRF Los Angeles's Facebook page as well as JDRF's Twitch account.

We're going to be taking questions from you at the end of the show, so send them our way in the chat, and we'll get to in the last few minutes. I'm here today with Sarah Fletcher who's living abroad in Madrid, and Apoorva Gomber, the co-founder of Diabetes India Youth in Action who's in New Delhi right now. How are you guys both doing?

Apoorva: That sounds really good.

Sarah: Good.

Apoorva: The lockdown [laughs].

Craig: I guess let's start with that. Currently, you guys both under lockdown both in Madrid and New Delhi, correct?

Apoorva: Yes.

Sarah: Yes.

Craig: You have been for a few weeks, looks like you might be for a few more weeks. Now what's it like? Can you go out for groceries, can you go out for a run, or is it just doors locked, can't leave?

Sarah: I guess I'll start with Madrid. It's been they just locked us down, I think, the beginning of March. It's been about a month now. March 12th I think was the original. We have since that day not been able to leave it all except for groceries, or the pharmacy, or obviously to go to the doctor, or some of the essential workers that have been allowed to continue working, but you cannot run outside, you cannot walk outside. People have tried to fake that and they've gotten in trouble for it, so really you have to stay inside [chuckles].

Craig: When was the last time you went outside, Sarah?

Sarah: Yesterday because I went to the grocery store. I go about every five days.

Craig: Was it crazy there, were a lot of people, were there lines, was there food?

Sarah: Normally there's a line, but yesterday there wasn't one, so I got lucky. Normally there's a huge line, especially for Easter.

Craig: Apoorva, what's lockdown like in India?

Apoorva: Currently in India, we are on nationwide lockdown. We were on a 21-day lockdown till yesterday, and of yesterday, our Prime Minister extended the lockdown. Now it's extended till the 3rd of May, so we probably open up on the 4th of May. Now this second lockdown, which is now the extended version, compared to the first one is less stringent because now they have identified the hot spots in different parts of the country.

They are continuously monitoring the states where the hot spots are. Now with the increased number of testing, the cases are coming up very high. Things are going like that. They're now working on a newer model of strategizing how to phase down this lockdown.

Some states where they have identified like hot spots, they're going to close to the 3rd of May. Then gradually, in other states, from April 20, they'll open up a few essential services like travel across the state. Probably they will do that.

Craig: When was the last time you were able to go outside for groceries or?

Apoorva: That's the worst part. We are on complete lockdown. We can't even walk down and go for a run, it's not allowed. We can't even take our dogs outside for a walk, that's really difficult. Only the doctor can go. I being a medical doctor, I can walk down because I have a curfew pass, so I can go. Some of the doctors--

All the essential services are operational. Food services are operational. You get all the groceries in your house. There are some places where there's a curfew you can't walk out, so that's a hot spot area, where they have identified it as a red zone. The actions are really stringent. People cannot even go out for groceries, they have to just get home deliveries done.

Craig: When you do go out, what's the feeling like? Are people nervous, are people scared, or everyone just depressed and just resigned?

Apoorva: It's the Indian markets are never just like completely barren lands. Indian markets are meant to be people just close to each other with people crowded. Now it's like this is not India. People are standing one just one meter away from each other.

Some people are scared because we are not used to the hand sanitizing, we're not used to the hygiene level. It was never this kind what it is, everyone washing their hands, everyone sanitizing their hands. Some people are okay with it because it's a new norm, but some are still taking it back like, "Why are you giving me the sanitizer?" It's distancing [laughs].

Craig: Sarah in Madrid, what's the general feeling in the air?

Sarah: It's just been so long, but we're all a little bit used to it. I don't know if I can tell that people are nervous. In terms of my roommates and me, we all feel pretty safe, and don't really get scared when we go to the grocery store now. The grocery store that I go to gives you hand sanitizer and gloves to put on before you even go in.

Obviously, they're monitoring how many people are in the store at any given time. I don't think I feel too unsafe when I leave. Also, for this whole time, people have really been trying to keep their spirits up, and we have the daily clap at 8:00 PM. I think overall, there's a lot of gratitude and people are trying to just be as positive as possible.

Craig: What is the daily clap?

Sarah: [laughs] Every night at 8:00 PM, since the entirety of this quarantine, if you have a balcony, you go on your balcony, or we just open the windows, and we clap for all of the health workers, everyone that's working to save us all and help everyone, and especially in Madrid where we have the most cases. It's been really nice.

Craig: That's really incredible.

Apoorva: We had one of those on one of the days on a Sunday when our prime minister gave a talk, and then he was calling off for a lockdown for the next three weeks. That was one of the days which was called Janta curfew, which the entire community walks out, uses just claps, and uses all those utensils to make a sound. They ringed it to a sound energy. This is one of the things which India did do to just encourage all the people on the front line.

Craig: Taking a step back a little bit, I want to talk a little bit about what Type 1 diabetes is like not just in the US. Most of the people watching are probably here in the US, we know what the health care system is like. Mostly private insurance, large co-pays for very expensive several hundred dollars for a vial of insulin, not to mention all the other supplies.

You can get pretty much anything you want as long as you have enough money to pay for it. If you want inhalable insulin, and your insurance does accommodate you can pay for it, it's available. You can get Dexcom, you can get Eversense, you can get Libre, any kind of pump it's here for a price. Sarah, we met when you were living in Southern California. You decided to go to Madrid for an adventure, maybe not this adventure.

Sarah: No [laughs].

Craig: When you left having only known the US healthcare system, were you nervous? Did you do any research ahead of time on what it was going to be in Madrid?

Sarah: I did a ton of research before I left and so it didn't make me super nervous, I felt like I was pretty well prepared ahead of time. I think it's my personality to not really go without a plan. I was a little concerned may be about going to the doctor and having to speak in Spanish to them, or maybe there being some communication barrier that I wasn't going to be able to deal with super well because I came with basic Spanish and it's improved.

When you start to talk about medical things, it's a little bit more complicated, but that hasn't been an issue. I came here with a ton of insulin, and I have had an easy time buying it here anyway. Then I've met people here that are also diabetic and so I can ask questions with them, and they're always offering like, "If you need more insulin, here it is. It's only €5 for me to get it." Normally without a prescription, it would be €35 or €40, which is still super-duper cheap compared to anything I was paying for in the US [laughs].

Craig: Are you able to get the same insulins that you were using here?

Sarah: Yes. I can get the same insulins, Tresiba and Toujeo you can both get, and then NovoLog or NovoRapid. Then also I know that I can get the freestyle Libre. Now I'm not going to worry about it, but I can get that just as easily here as I could in the US as well.

Craig: So easy. You need a prescription for these things or can you just walk into a pharmacy and just buy a bottle?

Sarah: You can walk into a pharmacy and get the pens and so I've done that. If you have a prescription it's normally cheaper, but you can still get it regardless. I've never had to worry. If I just ran out of a prescription that I can't buy it, I can always buy it.

Craig: Compared to the US where if you want an insulin you either have to buy an older insulin that doesn't work as well, you can buy that at Walmart or something or you have to go to the emergency room, and wait in line, get a vial.

Sarah: Right.

Craig: There are lots of patient assistance programs. They are usually things you have to sign up for. I'll mention Lilly. Justice started one. It's a $35 co-pay for insulin now. Still something that you have to opt into, you have to call them, you have to get approved. Your system seems much better in Madrid.

Sarah: Yes. It's been nice. I have insurance but the insurance really, it's not covering my insulin but that's okay because it's still really, really cheap for me. €35 to me it's nothing. For Spanish people, they're like, "Oh my gosh, I don't pay that," but for me, I'm like, "You don't understand. This is cheaper than monthly what I was paying for, for insulin. $100 or $200 a month," so yes.

Craig: Apoorva, what is living with Type-1 diabetes like, in India?

Apoorva: It's very different compared to-- I work with people across the globe, represented at different conferences and getting to know how the situation is in different countries, India is very different compared to most of the world, because here, the access, we still have issues. 70% of India is still in the rural areas and most of these people don't even have access to the basic insulin, the regular insulin.

The analog versions are available but you have to pay out-of-pocket for that, and that's expensive compared to the regular insulin. Some people need prescriptions to buy even regular insulin. If you are a Type-1, and most of the people in the cities they have, they can use the older prescription and just get their regular supply of insulin by just walking into the store.

Compared to the US, I think, insulin is pretty cheap. I have a friend, Erik, who just got locked down in India just because he couldn't travel back. He's in the same Beyond Type-1 Leadership Committee. He just shared a video yesterday saying that in Bangalore, he's stuck up, and he had to pay so much money, almost $100, to buy a vial of insulin, and which he got for just $10 in India.

Compared to that, it's completely different. Now, most of the people in India, the government does give regular insulin in the supply in government hospitals,. Most of the people who are on analog versions, they have to pay out-of-pocket, and you have to spend from your own side. There's nothing called insurance in our country for Type-1.

There is a lot of lack of awareness about the condition and most people don't really know how to manage Type-1. There's one issue with that. Some of the people, like the rural areas, don't even know how to inject. They don't even get access to the injections. That's one terrible issue with the supply of insulin.

In this scenario of crisis, currently, there is no limitation in the supply but we are assuming a lot of people who are locked down in the rural areas because we have pharmacies mainly localized in the city. Now, those people in the rural areas don't have easy access to the pharmacies. They are completely stuck and they cannot travel to far off cities during this lock-down for few time.

We need to provide them, do something, and just give them access to the insulin somehow. There are people who are facing- they will be facing now with the extended lock-down. We were well prepared because we stocked up our supplies and we told everybody in the organization as well that, "Please, stock up your supplies just to be prepared. You don't have any limitation in the supplies."

We have done that but there are some people who are stuck and they are still doing insulin delivery online. Currently, things are available but we are estimating that over the course of the lock-down extensions, there will be a shortage or the supply.

Craig: Have you heard from people in these rural areas who are running out of insulin?

Apoorva: Yes. Two days back, in the organization, we sponsor a child monthly supply of insulin. He comes to the center and gets his supply of insulin or gets the paycheck from our organization. We give him monthly supply of insulin and blood sugar strips. Now what happened, he couldn't come in and then he called that, "I am just running out. There are just two days left and my insulin will be completely over."

He couldn't come because his dates were supposed- they were in between the 21-day lock-down and they couldn't come out of their place. One of our co-founding members in the organization arranged through some police or he figured out his sources and got it delivered, and he did an online transfer.

This is how we worked out. This is all by word-of-mouth we helped, which is really nice because the contacts really helped in times of crisis like these. There was no other way to get him the insulin. It was very difficult. We are in the center of the city in Delhi, and he lives at one border where there is no pharmacy. It's very, very difficult for them, no transportation as well.

Craig: Well, thank goodness for social media and technology for people to be able to get in touch with people like you and organizations like Diabetes India Youth in Action to get supplies when they need it. Have you guys in Madrid been affected insulin-wise, supply-wise during the pandemic?

Sarah: Not that I'm aware of. No, I think everything's okay in that regard.

Craig: In the US, I know Novo Nordisk just announced that that's like you can get free insulin for the next 90 days during this whole things. You don't have to pay anything. I already mentioned the Eli Lilly $35 patient savings card. Nothing that I've seen, none of these companies say there's any issue with supply.

No one 's worried about supply lines and running out of insulin. Obviously, if you can't leave your home, luckily, in the US, we can do that. You can go to a pharmacy and get some supplies you need, but if you can't, you really just need to have it with you.

We talked a little bit about what it's like living with diabetes in these countries on a broad level. Maybe from a personal level, Apoorva, if you can talk a little bit about the types of technology available to people. You said most people don't even know how to manage their Type-1 diabetes. Is that really the case in India? How do people survive with Type-1?

Apoorva: Type-1 is very different in India. I always say this, that we are always against. We are always well prepared in times of war because the disease doesn't stop even in times of crisis. It's like a war in our own body, so we need to be well prepared always. Now in India, very few people have this awareness about Type-1 diabetes.

With growing social media and organizations coming up every day, people are really talking about it, now Type-1 diabetes is considered as a known condition. There is a huge taboo attached too with the disease. A lot of people were hiding it for a very long time. Now with the rising media and the support groups have come up, more and more people are feeling more empowered and confident about their diabetes and managing it.

Coming from medical background, I feel that a lot of medical professionals in the rural areas still don't know how to manage Type-1 diabetes. There are good professionals in the cities who are managing Type-1. They know what insulin pump is, how do manage it, but some of the people in the rural areas, they don't even know.

They would actually go for alternative sources of treatment like putting the patient on Ayurvedic stuff or there will be homeopathy stuff. That's where the problem is. We've seen patients land up in complications, coming to the hospital where they have completely stopped insulin, thinking that there is a cure to Type-1 by giving a homeopathic medication or an Ayurvedic medication. They have landed up in diabetic ketoacidosis.

There are people, like very small children, who had really had cerebral herniation, damage to the brain and the ICU who have been completely bad condition. Those are people where the awareness was not there. That's one of the reasons that they had to switch to alternative sources of therapy and not realizing that insulin was the only drug of choice.

People who are well-equipped and they have access to good hospitals and care, they reach to the good doctors, and then they get what they need. Majority people in the rural areas, they have to go through a lot of problems and then they'll end up in the very large last stage, when the things have really gone bad.

One of the reasons why in India the level of awareness is low is because some people are uneducated. I think every chronic condition has this taboo and stigma attached to it. Similarly, with Type 1. Most of the people were hiding their disease for a very long time and they feel that it limits their personality and then you don't get married because in India a lot of things get attached to getting married.

A female with Type 1 diabetes cannot give birth to a normal child, so I don't want to get married to this person. All these kinds of myths that are attached to the disease that's one of the reasons why people will not very open about it. Now I think with raising awareness, more and more people are feeling confident and there are people who are running marathons, talking about it.

They are using Type 1 as one of the skills to walk, like using Type 1 to educate others and telling them that, "Hey, I can do this, you can do it too." Coming to technology, yes, there is limited access of technology here. We're not a rich country as such though the technology stack it's still very low compared to what the US has. We still don't have the-- Very few people would actually know what CGMs are.

Some people who are in the major cities can afford to buy a Dexcom, get it imported from the US or buy out of pocket, but there is no insurance as I mentioned before. There is only one sensor available, which is of the Medtronic sensor, which is expensive. Everybody cannot go on that, only people who can afford can.

There is a Libri version of the sensor, but it is a different version of what UK and the US have. It's something called the Libri professional version, which is only meant for the doctor. It was never a patient-friendly version. It doesn't show the readings as such and doesn't even have alarm, so that's something different. We have a different version.

Though there are a lot of doctors who are lobbying, saying that, yes, we want children to self manage their diabetes, but I think we are still very far on that road. We need to go along way educating people and educating the people who are living with diabetes as such. Some people are really not confident. Even at the age of 25, 24, I've seen people having like diabetic retinopathy and severe complications.

Craig: What about insulin pumps? Do people have insulin pumps?

Apoorva: In the cities, yes. The people are now well versed at what an insulin pump is. It's expensive. Everybody cannot afford the insulin pump. It's almost, I don't know how to say what is in the US dollars, but in Indian rupees, it's almost like a 3.5 lakh, Indian rupee. We just have a 640 G, which is the latest Medtronic pump.

There is no other sample available. It's only a Medtronic insulin pump. Some people, they have the basic pump which was 722 oral module which is an older version that is available, which is the cheaper version but still a lot of people are not on the insulin pump. They prefer the daily injections compared to the pump because they cannot afford it. It's very difficult.

Craig: Sarah, Apoorva mentioned the stigma of diabetes. You mentioned that you went to the Madrid, you found meetup groups. You found groups of Type 1 diabetics in Madrid. Is that stigma not there? [unintelligible 00:24:00] people understanding of Type 1? Do they talk about it?

Sarah: From what I can tell, I think they deal with the same things that we do in the US. Because I had gone to talk for a guy that was talking about mental health and diabetes and one of my friends spoke up and was like, "I would like for people to not judge me when I take insulin shots in public because I'm not going to go to the bathroom every time to take an insulin shot."

I think there's kind of the same sort of things that we deal with in the US here. I would say it's about the same. I haven't really noticed anything myself. I mean, I take shots in public and test my blood sugar in public and I think most people just don't look or look away. I think it's probably about the same. I'm sure there's some sort of a stigma that they have here too.

Craig: You'd mentioned it's easy to get insulins, the same instance that we have here in the US, the analogs, and you mentioned the Libri. Have the people you met in Madrid do they wear pumps? Is that a thing?

Sarah: Yes. They do have pumps. I think two of the three girls I most recently met up with had pumps, but they are more limited with what they have access to. I know that it's not as easy to get the Dexcom here and it's not as easy to get any pump that is not a Medtronic.

I'm not sure about the Omnipod. I didn't ask them about that, but I know that I talked to them when I used to have the T:slim and they're like, "Oh, we would love to have that and we can't get that here." I know they're a little bit more limited with what choices they have to use.

Craig: Yes. Personally, how do you guys feel right now? Are you worried being stuck at home? Are you hopeful? Apoorva, why don't you start.

Apoorva: Of course,I'm worried because you don't like locked down in the house. You don't get to like daily exercise. You can't even go for a run. I think I've become more moody in this phase because some days I'm happy when I wake up and the other days I'm like, "Okay, what am I supposed to do now?"

The blood sugars have been a little uncooperative and so you don't know what's happening. Sometimes, your body is behaving like with the right amount of food you're doing everything normal, everything's working fine, but still your blood sugar isn't going all right deep. I don't know. It's quite unprecedented times we're living in and the blood sugars are like that.

I think we diabetics Type 1 are well prepared most of the time how to manage. This is how we live on our daily basis like what's coming next tomorrow. We're always hopeful and we always wake up positive that, "Okay, we can manage this, we can fix this."

Even if we have a low in the morning, we always face the day as it is. We are strong enough but give that boldface to diabetes. I think we will give the boldface of this phase as well and we'll fight it off and then rise up again [chuckles].

Craig: Now even though most people are locked down in India, are you worried being a medical professional going out and working? Are you worried about getting COVID-19?

Apoorva: Yes. My entire family comes from a medical background. My father he had to complete-- We all were worried that if my father goes to the hospital, he should not come back home like getting it. Because I am an immunocompromised person, I stepped off my duty.

Although we will call back to the hospital but I stepped off my duty because I know I'm immunocompromised and I will catch it. If not for me, I will spread it to my family which is even worse. Yes, they're part of yourself is scared about it. My mother is a gynecologist. She had to step back off her duty. She does only emergency delivery.

We're all scared because you don't have the protection gear for yourself. There have been cases which have said that despite the protective gear, there are chances that you will carry the infection in your shoes or in your something and then you don't know. You could be a carrier to somebody else in the family. Yes, we are scared as medical professionals too but that's what something we chose. This is our duty to be in such time.

It's like a war zone and we need to be there as soldiers. We are doing our part. My parents are going to the hospital but they have limited their work. I have stepped back off my duty, so I'm at home. Two of my colleagues got COVID positive. The hospital I work in, two of my friends, they're are COVID positive and they had to be put in isolation.

Craig: Sarah, you went to Madrid looking for this great adventure. You've been inside for several weeks now. Mentally, how are you doing?

Sarah: I like to say it's an hourly basis. I wake up, sometimes I'm fine. Then halfway through the day, it's like you have a meltdown. Then you feel better. I mean, I think I've been very social, so I don't feel lonely at all. I live with four other people, so I don't have that problem necessarily.

We try and play games and everything but in terms of not getting fresh air and not really seeing the outside world, since we can't exercise, walk, and those were things that I did every day. I'm losing my mind a little bit like that. I would agree with the Apoorva that I'm a little bit more moody at this time [chuckles].

A little bit more irritable. Overall, my spirits are up. I'm not afraid of getting it really. I mean, there's uncertainty on if I would feel anything at all or if I would be knocked down completely with it. This point, I'm okay with that. I don't have much fear, but I'm just a little bit losing it with no sunshine [laughs].

Craig: Well, hang in there both of you guys. That's all the time we have for today. Lunch Break is a production of Beta Cell and is produced by me, Craig Stubing. Thanks to everyone watching on Facebook and Twitch. We'll be doing more episodes every day at noon Pacific this week. Tune in to watch live or you can hear the next day on the Beta Cell Podcast.

Our website is betacellpodcast.com. There you can find every episode of all of the Beta Cell shows, if you want to listen to something besides just depressing pandemic news. JDRF is the leading global organization funding Type 1 diabetes research.

They need your help to do the important work of improving the lives of people with Type 1. You can get involved with your local chapter, or donate at jdrf.org. If you're watching on Twitch right now, there is a button to donate right there, right below the video.

Craig: Lastly, Sarah and Apoorva, what are some of the ways you guys have been mentally coping with the stress of being stuck at home? What's a tip or trick that has kept you positive?

Sarah: For me, working out daily. Doing workouts on YouTube have kept me very sane, more so than I would be without them since I can't get exercise outside 100% to blow off steam. I feel so much better working out.

Craig: Are you just going to come out as ripped?

Sarah: Yes. I've joked. I think I've been eating comfort foods more too which cancels it out maybe. Yes, I think I'm going to be in better shape after this than before [laughs].

Craig: Apoorva, how are you staying positive?

Apoorva: I've been doing yoga every day. That's something which is like my new time. I think spending more time with family has been really nice. Because we are all medical professionals, we hardly get time at our places. My parents are hardly home. This is a good time for all of us to catch up.

It's been years we sat together on a dinner table and this is the time where we all sit together and really discuss about what's happening in each other's life. That's something which is really nice. I know this is a slow downtime for us, but somewhere, there's a blessing that we actually could make out time to sit together on a dinner table for three [unintelligible 00:32:22]

Craig: Well, thank you everyone for watching. Thank you guys. We will see everyone tomorrow. Go wash your hands.

[laughter]