Part 3: Scams, Support and DKA

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We continue sharing expert responses to your top incoming questions.

Note these responses are not intended to be medical advice, for that—as always—you must consult your own personal physician. (View Part 1 and Part 2)

1. Is there now a vaccine or home-test kits for the coronavirus?

No. There are no vaccines or home-test kits for the coronavirus. Offers to sell either are scams. The Federal Bureau of Investigation is reporting an alarming level of fraudulent activity, preying on people’s anxiety over the coronavirus pandemic. Below are just a few hoax campaigns reported:

  • Calls or emails from the Centers for Disease Control and Prevention (CDC), asking people to make a reservation to be vaccinated with a credit card and social security number, or an offer to ship a home-test kit.
  • One scam targets people with diabetes, offering a free COVID-19 testing kit along with a free blood-glucose monitor.

The Federal Trade Commission (FTC) says the CDC will not make calls or send out emails. For up-to-date information, visit the CDC and the World Health Organization (WHO) web sites.

  • Text messages asking you to click a link for information on the virus; but the link spreads malicious software (malware) to your phone or device.
  • Several companies are offering to sell products that claim to treat or prevent the coronavirus. The FTC and the Food and Drug Administration (FDA) are working to stop their sales campaigns.
  • Authorities stress: do not click on links from sources you don’t know, and to delete without opening emails claiming to be from the CDC or WHO.
  • More details here.

2. If I need to go to the hospital, should I take my own T1D supplies?

Yes. Medical experts and many hospital staff are recommending that anyone with T1D bring at least two weeks of supplies with them if the are headed to the hospital. Protocols vary by hospital and some facilities may not allow the use of your own supplies and T1D technology, but experts advise that you bring your own supplies and be prepared to rely on them if possible.

If you have one, take your continuous glucose monitor (CGM), as this allows medical staff to quickly and frequently check your levels. Know that hospital policies vary, but during the pandemic, many hospitals are welcoming personal CGMs.

Also, have your physician call ahead of your arrival to ensure staff know that you have T1D, the medical issue you are going to the hospital for and your arrival time.

3. What T1D supplies should I take to the hospital?

While hospital policies and supplies vary, you should bring you own supplies and don’t be shy about asking to use your own when you would prefer to do so. Pack a kit that includes:

  • All insulin pens, needles and back-up pens
  • Vials of all insulins used, with back-up vials and syringes
    • Syringes are typically available, but, if permitted, you may feel more comfortable using what you are accustomed to
    • Many hospitals do not carry all types of insulins, so if you would prefer not to change, bring your own
    • If you use a pump: infusion sets, reservoirs and filling mechanism (or in the situation of OmniPod Pods), vial of rapid acting insulin (with a back-up vial), batteries and / or a charging cable
    • Sensors, transmitter and back-up transmitter adhesives / tapes or pre-insertion wipes, batteries and / or charging device, plus cables
    • Meter, lancet, lancing device and strips (you may need to use the hospital meter, but ask to use your own lancing devices as they are likely smaller gauge needles)
    • Supply of treatments for lows
  • Glucagon
  • Piece of paper with your endocrinologist’s name and contact information
  • Ketone strips (should be available, but good to take with you)

4. Do I still need to visit my doctor to get my CGM refilled?

Maybe not. Call your doctor to see if this is still required. Medicare has waved the need for in-person visits to refill prescriptions for continuous glucose monitors (CGMs) or insulin pumps during the pandemic. We have heard from several physicians that they personally are working with insurance providers to wave mandatory in-person visits, using telemedicine visits instead.

5. I know my doctor is overwhelmed and I feel fine. Do I need to keep my regular appointments?

YES. Medical professionals are emphasizing the need to stay connected to their T1D patients, especially during this time of high stress, but also to ensure refills are up-to-date and that you have full access to all your needed supplies. Nearly all doctors are using telehealth to enable virtual visits and manage prescription refills.

“We know that even one small change in your usual routine can have a huge effect on your blood sugar and most of us are experiencing more than one small change. So it’s even more important now that you work with your diabetes team,” said Ellen O’Donnell, Ph.D., Psychologist at Mass General Hospital for Children and Instructor at Harvard Medical School, who was diagnosed with T1D at 21.

“So much can be done via telehealth using diabetes tech like pump and CGM and pump downloads to give our health care professionals the information they need to support us and help us make changes at least for now….They want to help. You will not be bothering them.”

6. Should we have glucagon handy during the pandemic?

Yes. Having glucagon is recommended for the T1D community at any time, but especially during flu season and during the COVID-19 pandemic, when it may be harder to manage blood-glucose levels. Also, anecdotal evidence shows that with coronavirus, patients are either unable to keep food down or lack an appetite, and thus are at risk of low blood sugars. If levels fall too low, you could face hypoglycemia.

Severe hypoglycemia is a dangerous complication that can result in seizure, loss of consciousness or death. Glucagon is the first line treatment for severe hypoglycemia because it is the main counter-regulatory hormone to insulin. Read more in an article by our colleagues at Beyond Type 1 (BT1).

If you are looking to get glucagon: Lilly currently offers a Baqsimi coupon patients can use to get up to two devices for as little as $25. Through the end of April 2020, Xeris is offering a Gvoke co-pay card with which some patients can pay as little as $0 with eligible insurance to get their Gvoke PFS. Patients can also opt to request their prescription through the website and have Gvoke PFS delivered by PillPack at no additional cost.

BT1 also offers step-by-step instructions on how to use each type of emergency glucagon.

7. Are there quick ways for me to find someone to talk to who also has T1D and can understand my questions and concerns?

Yes. Even if you are in lockdown at home, this is not a time to be alone. Especially if you have T1D, stress can negatively impact your well-being. So reach out.

8. My glucose levels are high, but I am worried about going to the hospital. Should I wait?

NO. If you are worried that you may be showing signs of DKA, seek help. Do not wait. We were so saddened to hear of a recent fatality because someone with T1D was afraid to go to the hospital. If you are ill, you need to check blood-sugar levels and for the presence of ketones more than normal—as often as every four hours. Be careful to watch for any indication of elevated ketones that can lead to diabetic ketoacidosis (DKA). Usually blood-glucose levels are elevated (>240 mg/dL), but not always. Check for ketones with either a blood or urine ketone test kit—you can buy them over-the-counter.

Seek emergency assistance if you have moderate or large ketones or other DKA symptoms such as nausea, vomiting, abdominal pain, a fruity breath odor or shortness of breath.

Find more information on DKA and warning signs here.

9. Has JDRF-funded T1D research stopped?

No. Critical T1D research continues to be driven by JDRF-funded researchers around the world. While the pace of T1D research has slowed, as many universities and institutions are closed or have temporarily become treatment centers to combat the coronavirus pandemic, T1D research has not stopped. Researchers continue working remotely, analyzing data, conducting experiments and additional research and collaborating with colleagues to drive the work forward. Work will resume with all due speed once the pandemic is over.

“We have a destiny; to find a cure for T1D…thanks to special permits, the corona cannot stop our research. It’s difficult, but we can do it,” Kathrin Maedler, Ph.D., University of Bremen, Germany

10. As the economy turns, I am beginning to worry that I won’t be able to afford the insulin my children need. Do I have options?

Yes. First, know that JDRF is fighting every day to help lower the cost of insulin and T1D supplies by working with manufacturers, members of Congress and other government leaders, health plans and employers to make this happen. No one should die because they cannot afford their insulin.

As we work toward a long-term solution, here are some resources for immediate help.

You can lower your prescription and insulin costs through state and nonprofit programs; diabetes patient assistance programs offered by pharmaceutical companies; medication discount cards and more. Learn more about them at jdrf.org.

Also, Eli Lilly and Novo Nordisk, two of the world’s three major insulin manufacturers, announced an insulin affordability measure during the coronavirus pandemic. Eli Lilly announced that it would provide a co-pay card allowing anyone with or without commercial insurance to buy a month supply of Lilly insulin for $35 or less during the coronavirus pandemic. Novo Nordisk announced that people using Novo Nordisk insulin who have lost health insurance coverage due to job loss during COVID-19 are eligible for free insulin for 90 days.

By Lisa Popyk