Some first-hand advice and information for fellow patients living under COVID-19

Living during a global pandemic is one interesting movie-like experience. However, living with a chronic condition during a pandemic really magnifies health challenges that you have been somewhat quietly dealing with. It puts you under a microscope of careful, worrisome thoughts and concerns.

This new challenge has come with certain lifestyle changes for not only the general population but more so for patients suffering chronic illnesses. It is yet another battle we are fighting. So how are patients living with sickle cell disease impacted by the COVID-19 crisis?

The risk of exposure to the virus is the same for patients living with sickle cell disease as compared to any other person. Some patients may argue, how so? I lost my spleen as a child. Doesn’t this increase my susceptibility to infection due to my decreased immune response? Although the spleen is important for many functions in the body, the spleen is not vital to survival and it is possible to live without a spleen. Without the spleen, other organs in the body (particularly the liver) adapt and increase their ability to fight infection.

It is however important for patients living with this disease to understand how a comorbidity, in this case, COVID-19 may affect certain aspects of their day to day and health seeking behaviors. The down stream effects of sickle cell vaso-occlusive crisis that can be primarily triggered by an infection like COVID-19 should be under more scrutiny. Due to downstream effects of sickling such as stroke, acute chest syndrome (ACS), tissue and organ damage, the time to recovery and clinical outcomes in patients living with this chronic condition is significantly different from those of other individuals who do not live with sickle cell disease.

Patients living with sickle cell disease must keep in mind certain precautions as we battle through this pandemic.

Just like others, it is important that sickle cell patients tweak their health seeking behaviors to minimize the risk of exposure to COVID-19. This translates to staying indoors, seeking ongoing medical care through telemedicine options, keeping social distance and wearing masks when in public spaces.

In taking a deeper dive, certain other issues that we battle may come up as questions or concerns in your day to day.

  • I started a new therapy just before the lock down orders were put to effect. Should I continue to do so? Yes, there is no clinical data that shows that disease modifying agents and new therapies used for management of the disease should not be used at this time.
  • I wanted to start on a new FDA approved therapeutic to manage my sickle cell. Should I do so during this time? It is recommended to delay initiation of new therapies so as to minimize non-essential movement that maybe required for drug monitoring purposes as you start a new drug.
  • Should I continue on my hydroxycarbamide/hydroxyurea therapy? After all isn’t it an immunosuppressant? Yes, this should not be stopped. Continue to take your Hydrea and other disease modifying therapeutics that have been prescribed by your Primary Health Care Provider (PHCP). Getting off these medications can cause you more harm than good. The next time you have a discussion with your PHCP, ask them to increase your prescription supply of medication to 90 days. This will translate to a reduction in the number of times you need to go out to fill a prescription.
  • If I suspect that I have been infected with COVID-19, what should I do? Immediately contact you PHCP via phone. Do not go to the Emergency Departments (ED)/urgent care until you have consulted a doctor. Emergency day care units that have strict social distancing and isolation practices are the better option if immediate healthcare is needed. Ask your PHCP if this is an option rather than the ED, more so if you are a patient who requires IV fluids and opiates to mitigate an oncoming vaso-occlusive crisis (VOC). Minimizing provider cross coverage between wards depending on the availability of medical staffers can also minimize the risk of exposure.
  • Try to optimize the use of oral opioids. A counselor or your PHCP can provide a road map on how to do so. This is not a one-size-fits-all exercise. Certain aspects like tolerance, frequency of use and pain thresholds might come into play.
  • With the current blood shortages, you may find that some PHCP’s are instituting Hydrea therapy for patients with a high risk of stroke who usually require routine blood transfusions and cannot access them at this time. Consult your PHCP if the shortage of blood is directly affecting you. In cases where blood is accessible, blood transfusions should be continued for patients who suffer from priapism or have a high risk of developing stroke and ACS.
  • As always; stay warm, hydrated, and engage in low levels of exercise when you are able to, consume healthy diets and take your prescribed daily medications.

To all the sickle cell warriors dealing with this double blow, stay strong and warrior on, this too shall pass!