We Are At War: People With Chronic Pain Must Prepare

coronavirus

This article, in a slightly edited form, first appeared on Pain News Network on March 12, 2020.

The new coronavirus, COVID-19, is real. It is not a political fabrication, and it is not a hoax. Its dangers have not been exaggerated.

With 1,629 confirmed cases in the United States as I write this, we are now in the acceleration state of the pandemic. In Italy, there were three confirmed cases of coronavirus less than a month ago. Now 60 million people in that country are on lockdown.

What History Can Teach Us About Pandemics

Although the trajectory of this coronavirus is difficult to predict for the U.S., we can look at the history of other viruses to know what might happen.

Within a week or two, there will probably be thousands of people in the U.S. who have the coronavirus. Most likely, the virus will remain a threat to the United States for at least a year. We almost certainly will not see a vaccine before then. By the time we have developed a vaccine, the virus will have infected millions of Americans and will probably have mutated in unpredictable ways.

As I wrote in a previous blog, the people with an increased risk for experiencing severe symptoms from, and possibly dying of, COVID-19, are seniors and those with chronic illness. Of course, people in chronic pain are part of this high risk group. Lethality of COVID-19 had been reported at about two percent earlier on, but some estimates have now upwardly revised that number. However, we don’t know how many people have been infected, so it is impossible to know the true rate of mortality (which is the number of deaths compared to the number of people diagnosed). As we improve our ability to test for the virus, hopefully we will see the rate of mortality decrease, although the number of deaths will continue to increase.

The 1918 flu, also known as the Spanish flu, infected one-third of the world’s population. Even though the pandemic lasted only 15 months, it still reportedly killed between 50 million and 100 million people worldwide. An estimated 670,000 of them were Americans. Adjusted for population growth, the number of Americans killed would be more than 1.8 million today. It was the deadliest disease outbreak in human history so far.

Just ten years ago, H1N1 (Swine Flu) infected 60.8 million people worldwide. An estimated 300,000 – 500,000 of the infected people lived in the U.S., and 12,469 of them died. In the U.S., it began with little drama. In April 2009, a 10-year-old boy tested positive for the H1N1 influenza virus in California. By October, President Obama had declared it a national emergency.

One of the takeaways of past pandemics is that we must recognize the speed at which a virus can spread and the importance of preparing as early as possible.

It’s Essential to Plan for the Coronavirus

Every person in the United States should have a plan in place for dealing with the coronavirus. In the best-case scenario, our lives will be relatively unaffected. But we would be remiss to count on the best outcome. Wishful thinking won’t help us. Preparedness may.

One of my colleagues told me that during Hurricane Katrina, hundreds of patients in the Mississippi area with intrathecal delivery systems for conveying pain medications to the spinal canal were unable to be seen by their physicians. Many of the pumps ran dry during and after the hurricane because patients could not reach their doctors, or the doctors could not obtain the medications from the compounding pharmacy. They experienced a tremendous increase in pain, and many patients were forced into severe opioid withdrawal.

Pain patients weren’t the only ones who suffered. Intra-abdominal pumps delivering insulin also ran dry. Thousands of patients experienced insulin withdrawal or diabetic coma. Many people with complex medical problems, including cancer, could not receive life-sustaining therapies. Some people died.

Questions to Ask Your Doctor

Think of COVID-19 as another natural disaster, and anticipate the same potential problems. Begin your planning immediately by talking with your doctor. Some of the questions to cover are:

In the event of widespread sicknesses and quarantines, will the office be open? Can you get medicines delivered to you if people are not able to leave their home?

What if your doctor is ill? Will they have someone who can fill in for them? How much medicine will you need to ride out a community-wide quarantine?

Some experts recommend picking up additional medication in case of an emergency.  Ask your provider how they feel about that.

How long can you last if there are nationwide supply problems, and if your doctor, nurse practitioner, or pharmacist can’t get your medication? What are your options? You may need to go to a different doctor. However, that can be problematic because fewer doctors are accepting new pain patients. Also, if you do need to find another doctor, the prescription monitoring database may show that you have obtained medications from two or more different providers. You may be labeled as a doctor shopper. Ask your doctor how to avoid this problem.

When meeting with your provider, be transparent about your concerns. Avoid panicking.

If you are infected, the virus may affect your ability to breathe. Opioids can add to breathing difficulties caused by viral infections, so be prepared to reduce the amount of your medication. Discuss with your doctor how to decrease your dose to remain safe.

Be prepared to ask your doctor the right questions now, and come up with a plan together. Think of coronavirus as a serious threat, but trust that you can prepare to mitigate the harm.

This is like war. But the invader is not a human enemy. It is an enemy of humans. It is an infection.

 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, The Painful Truth,” and co-producer of the documentary,It Hurts Until You Die.” Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

You can find him on Twitter: @LynnRWebsterMD.

4 Comments

  1. Cynthia,o. on March 15, 2020 at 1:58 am

    Thank you Dr. Webster….such an important article….especially for us pain patients….you really covered the bases we need to think of…

  2. David W Cole on March 17, 2020 at 12:46 am

    Thank you Dr Webster,

    Very thought-provoking and informative, definitely made me think about a few things. It’s crazy in the little town I live in, everybody’s buying all the toilet paper, etc. I’m definitely going to start taking this a little more seriously because of your article. I’ve got some pretty bad lungs, I don’t think I’ll make it if I get it.

  3. Kitty K. on March 29, 2020 at 9:02 am

    Thank you. I currently work in Italy although my home is in Alaska. When the coronavirus Red Zones were implemented for Veneto and Lombardy, I asked my pain doctor to write me scripts for two months ‘just in case’. He agreed and my pharmacist filled both scripts at the same time. I live in Friuli Venezia Giulia, a rural region adjoining Veneto but four+ hours from Lombardy so didn’t think we had much to worry about, but still…four days later I tore my meniscus, had emergency surgery three days later (my pain doctor was the anesthesiologist) and the next morning woke up in the hospital to all of Italy under lockdown. I was able to get home, my friend who picked me up brought the required documents for us to travel with him, and have been at home since then. I have five weeks of pain meds left. Tomorrow I will text my doctor and request two or three more months of scripts because I heard the lockdown will be extended very soon..italy is permitting doctors to phone in opioid scripts, and pharmacists are even allowed to prescribe, so I know I will be taken care of. I’m so grateful to be under lockdown in Italy rather than America because healthcare here is a RIGHT, not a privilege.

  4. Toni Jacobs on April 5, 2020 at 1:58 am

    I’ve followed you for awhile Dr. Webster as I to was a person taking prescribed opioids for chronic back pain and several back surgeries . Pain I will live with for the rest of my life . I am a 63 year old female . Retired early in 2014 and onto SSI Disability since . My journey with pain management started with my PC Physician . Vicodin for breakthrough and 75mcg Fentanyl patch every 3 days . Over the course of the last 5 years I was eventually told I would no longer be given the Vicodin but let’s increase the Fentanyl . So I was given 75mcg patches . Eventually ending at 125mcg every 2 days . Still in pain and always being made to feel I was some horrible person because I needed pain relief , I made the decision to taper off the Fentanyl . It wasn’t helping and no one would prescribe any type of pill which actually helped .
    I was tired of the drug testing , the pharmacy not having the patches at the end of the month , endless Dr appts for the prescription and the overall stigma attached . I’m happy to say as of this last week I have been off the Fentanyl for 4 weeks . It took me about 3 months to go from 50mcg to 0 . I now have pain much worse than before . My heart is in a fairly constant state of palpitations and I get winded very easily . I saw a cardiologist and am scheduled for an Echocardiogram just to make sure my heart is ok . For now my body is still in shock figuring out how to function without the drug . I say all of this just to let others know they are not alone in their struggles. It’s frustrating and demeaning to all of us that live day to day suffering and being made to feel guilty like we’ve done something wrong .
    My heart goes out to the woman whose story you shared in your recent email . She needed a hip replacement only to end up with a bad infection, the hip removed and eventually after all that is told her pain meds are going to be cut . It’s wrong on every level .
    I’d like to thank you Dr Webster for your great information and for the amount of respect you treat those in pain with . I always find your articles informative , caring and truthful .

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