It’s all over the news, how a second health care crisis is coming. News stories mention people with cancer and chronic illnesses. I’ve mentioned over the last few weeks how people in our audience are going without regular health care that they need while the system is overwhelmed with the pandemic. In many cases, their providers are available, but it’s too risky to go to a clinic where they may be exposed.
I have 5 friends with cancer who are still getting their regular treatments, at facilities with varying degrees of prevention protocols. My friend Anne feels looked after and protected, while my friend Catherine had such a terrible experience, she reported her clinic and was featured on her local news. Many people are unable to get treatment at all, and the delay could potentially be as deadly as the virus for them.
Last week my issues became significant enough for me to risk getting treatment. My pain was spiraling out of control, and without access to swimming, massage, or acupuncture, I had little relief. I didn’t dare increase my pain medicine because there have been shortages of that too. I need to conserve my existing supply. My right hand, which was reattached after an accidental amputation, had lost so much feeling, it was becoming a useless claw. When I lost two days to migraines last week, I knew I’d reached a crisis-level need for care.
Fortunately, my therapist has had the virus and recovered, and been cleared for work. I was terrified to go to her studio, which she hadn’t entered in a month, but had nonetheless sanitized for my visit. We masked up just in case, because massage demands a full hour of close contact.
Any time I go more than a month without a massage, when I finally get one, it triggers a 24-hour vomiting migraine. I discussed this with Skya and we agreed that the trigger is too much relief at once– my body’s struggle to adjust to the release of all that splinting (muscles in a spastic “permacramp” in order to hold up the spine) overwhelms me. We split this visit into two sessions, 5 days apart.
I felt weepy with relief Tuesday evening, and I slept well for the first night in weeks. Tomorrow will be even better. I’m one of a small number of people who are actually getting relief. Many more are suffering like me and not getting help.
A friend with several disorders in the dysautonomia family has been having issues that she’s getting treated by video sessions with her doctor. The doctor phones in prescriptions for delivery to her home. So far, so good. She even rode out an adrenal crisis with self-administered emergency medicine at home. Needless to say, this is not an ideal situation for her, but exposure to the virus could be deadly. Going to a clinic is out of the question.
Another friend was starting treatment for opioid addiction and that got put on hold. Meanwhile, he’s backsliding into old behavior patterns. I hope it’s not too late by the time he gets into a program, or worse—he changes his mind about going.
The medicine supply chain is interrupted for a variety of reasons. Many of our pharmaceuticals come from China. Panic buying has allowed supplies of over-the-counter medicines to run out. Last month I made it to the pharmacy just in time to refill my pain prescription—they were almost out of their latest delivery. I can’t stock up on a controlled substance, nor can I have it delivered. I have to go in the pharmacy with paper scrip in hand. When I offered my license and asked the pharmacist, “Don’t you need to check my ID?” she said, “We have the number on file and we know you.” Which is exactly what I’ve thought every month for the last 10 years, but whatever.
Then there is the troubling case of Billye Brown, who was denied her hydroxychloroquine prescription for discoid lupus because it was needed for coronavirus patients (Thorn 2020). It’s not even proven effective for coronavirus, while it has successfully controlled her lupus symptoms for 10 years. Her insurance company (and mine), Kaiser Permanente, sent her a letter “thanking her for her sacrifice.” She had a prescription in hand and the medicine is demonstrably effective for her condition. She should have been given priority for the medicine, or at the very least, a first-come, first-served approach. Even if the medicine were proven effective against the virus, I would feel that way. The fact that it hasn’t been makes the appropriation of her medicine even more insulting.
I assumed this would have been resolved quickly in Ms. Brown’s favor, but I haven’t found any update to the news story. Ms. Brown reported that cutting her existing supply of pills in half resulted in skin outbreaks. She needs her medicine, and there’s no evidence that anyone benefited from her “sacrifice.”
Now people are protesting for their right to take their chances with the virus by gathering in public. So they can jam the hospitals and ensure that people like us can’t count on the ER if we need it. No, it’s not their right to put others at risk. It is their right to expect and demand better of our government in the way of food and housing support during this crisis.
This audience bears the collateral damage from the pandemic. For what comfort it offers, I see you. If you have a story you’d like to share, please do in the comments below. Our stories matter.
Greenleaf, Dan. 2021. The Coronavirus Pandemic is Going to Trigger a Second Health Care Crisis.
Business Insider, April 4, 2020
Thorn, Dan. KRON4 TV, https://www.kron4.com/news/bay-area/lupus-patient-in-oakland-denied-medication-due-to-drug-shortage/ March 30, 2020