On May 29, CreakyJoints and the Global Healthy Living Foundation hosted a Facebook Live event with experts from the U.S. Centers for Disease Control and Prevention and United Rheumatology, a rheumatology care management organization that serves more than 600 independent rheumatologists across the U.S.

After more than three months of the coronavirus spreading across the United States —  and more than 100,000 American lives lost — our patient community continues to have important concerns and questions about how to stay safe as the country begins to reopen more and more.

We gathered the following experts for a candid discussion about such topics as managing an underlying chronic illness during the pandemic, how to stay safe when going to the doctor’s office, when to take advantage of telehealth appointments, as well as updates on vaccine development and what the latest research says about how people with chronic illness and rheumatic conditions are faring if they get infected.

  • Shilpa Venkatachalam, PhD, Associate Director of Patient-Centered Research at the Global Healthy Living Foundation
  • Anne Kimball, MD, MPH, CDC National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention; Division of Sexually Transmitted Disease Prevention
  • Max Hamburger, MD, Founder, Executive Chairman and Chief Medical Officer of United Rheumatology and Managing Partner of Rheumatology Associated of Long Island (RALI)

You can watch the video above and read key takeaways from the event below.

1. If you have an underlying health condition that may put you at higher risk for coronavirus, follow these steps to protect yourself:

  • Take your medications exactly as prescribed. Do not change your treatment plan without talking to your health care provider.
  • Stay home as much as possible.
  • When you leave home, try to stay six feet away from other people.
  • Wash your hands often, especially when you get home from being out.
  • Clean and disinfect things you touch frequently, like doorknobs and your cell phone.
  • Try to have a 30-day or more supply of prescription and non-prescription medications
  • Avoid non-essential trips on airplanes
  • Wear a face covering in public when you cannot be socially distant

“The means of protecting yourself are pretty simple,” says Dr. Hamburger. “These are not complicated. Obey them, stick with them, protect yourself. If we’re careful, we can largely prevent ourselves from getting sick.”

2. Stay in touch with your health care provider if you have any concerns about your underlying health condition or COVID-19.

Your provider might set up a visit with you over the phone or using a telehealth video service or decide it’s important to see you in person. “That decision will be made by you and your provider and it depends on what your concerns are, whether you should be assessed in person, and what the level of [COVID-19] spread is in your area,” says Dr. Kimball.

Check out this infographic about getting optimal rheumatology care during the pandemic.

3. If you have a medical emergency, don’t delay calling 911 or going to the emergency department.

It’s very important to seek immediate medical care for emergencies to prevent permanent damage or even death. “Emergency departments, hospitals, and doctor’s offices all have prevention measures in place now to help keep you safe when you do need emergency care for any reason,” says Dr. Kimball.

4. Doctor’s offices have completely overhauled how they see patients to ensure their safety.

“All of us put the safety of our patients and staff as our first priority,” says Dr. Hamburger. “Patients will get a clue as soon as they contact they office about how we view that, because we’re going to ask a lot of questions about them [to ensure safety].”

Among the changes many United Rheumatology practices, as well as others, have made include:

  • Initial intake over the phone to eliminate contact at the front desk
  • Not using waiting rooms (the parking lot is the new waiting room)
  • Minimizing the number of patients in the office at any given time
  • Check temperature before entering the office
  • Requiring face coverings for patients
  • Clean exam rooms between patients
  • Do laboratory testing and imaging like X-rays in the exam room instead of in separate rooms
  • Only bring in patients who have to come in and manage the rest with telemedicine

Read more about how to get biologic infusions safely.

5. Do not delay care for your chronic condition.

“We don’t know how long this pandemic will last,” says Dr. Hamburger. “Maybe [things will get better] by this summer or maybe it will be much longer than that. Waiting it out could be a really long time.”

What’s more, he says, many symptoms that patients might get from COVID-19 could be ones that they confuse with their illness. “They might feel tired, achy, not sleeping well or sleeping a great deal. Patients with rheumatologic conditions could have lung involvement; they might have shortness of breath. For a patient to figure out ‘what’s what’ could be very hard; it’s something that is still a challenge for physicians. This is the time to get on the phone and call us much more than ever. We need to hear what’s going on: Is this their rheumatologic condition, is this a comorbid condition, or is this COVID? The only way we’re going to sort through that is to have an active conversation.”

Read more here about how autoimmune symptoms may overlap with COVID-19 symptoms.

6. Your doctor will help you decide whether your visit should be telehealth or in-person.

“Every day, we look at [upcoming] patients and say, ‘OK, we think we can handle this in the office, or no, ‘this should be telemedicine,” says Dr. Hamburger.

It’s very important for virtual visits to be audio and video — not just a phone call — when possible. “I really need to see my patient’s face. I may need to have them [put their joints] through a range of motion or have them put their hand up to see if it’s swollen,” he adds.

When a treatment change is needed, such as if a patient is having a disease flare and a decision needs to be made about changing medications from one class of drugs to another, “very often, that’s a time when sitting with a patient and examining the patient, there is no substitute for it.”

Very painful conditions, like a bursitis of the hip or shoulder, often require in-person visits because — say, for an injection treatment — because it is hard to live with that level of pain for a prolonged period of time.

7. Vaccine development and dissemination occurs across many divisions of the government.

“Most of the work to make and test vaccines is being coordinated by the National Institutes of Health [NIH].The Food and Drug Administration [FDA] is the group that regulates vaccines in the U.S.,” says Dr. Kimball. The CDC has a group planning for the dissemination of the vaccines once they are tested and ready. 

Phase 1 of testing involves small groups of people to see if it is safe and seems to work. In phase 2, studies are expanded to several hundred people to learn more about side effects and how people’s immune systems are responding. In phase 3, the vaccine is given to even more people and is tested for efficacy, which means how well it works; safety; and side effects.

“People with underlying medical conditions are sometimes included in phase 2 and phase 3 trials, but that depends on the study design,” says Dr. Kimball.

8. Many patients with rheumatologic conditions are doing OK with COVID-19, based on preliminary data.

 Data, particularly from Europe and now also in the U.S., is indicating that “we are not seeing that our [rheumatology] patients are getting COVID-19 more often and we are not seeing that our patients are getting sicker with COVID-19,” says Dr. Hamburger. In fact, at least so far, it seems that there are fewer patients with such conditions as rheumatoid arthritis, psoriatic arthritis, and lupus getting sick than we might have expected. “This has not turned out to be nearly the worry for our patients as we might have thought.”

“I don’t want patients to be afraid of their medicines,” he says. “If you are afraid, call your doctor.”

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