Yesterday I got an email from my CF center in New York City saying telehealth services are beginning to role out for patients who don’t want to come to the clinic. The clinic hadn’t yet recommended against coming in for visits, but it certainly felt that may one day be a possibility in the very near future. The growing COVID-19 pandemic is, of course, why the email landed in my inbox.
I think telehealth is a great idea.
It’s only a matter of time before the coronavirus starts to stress some of our health systems in hot spot areas (if they aren’t already feeling that stress). The rapid spread seen in Wuhan, South Korea, China, Spain and France are showing us that this virus can quickly overwhelm underprepared medical centers.
Beyond the scope of CF, I have friends in residency or nursing leadership programs around the country who tell me that they are already moving to reschedule some nonessential visits and procedures to lessen the burden on the their respective medical centers.
In fact, I have already made the personal decision to avoid in-person visits to medical centers in the near-term. If something should come up (and believe me, I would be naïve to feel 100% healthy at any point of my life), I will be pushing for a telehealth option and mail-order pharmacies to fill my needs.
We have to admit the obvious: cystic fibrosis is burdensome on a medical center. In the average case, a pulmonary exacerbation can lead to a CF patient requiring an isolation room for two weeks with round the clock care. For something far more serious, that essential care requirement grows exponentially.
In a lot of ways, that’s one of the reasons why our modulators are so amazing – they keep us out of the perpetual cycle of hospital admissions.
The people providing the round the clock care in isolation areas follow extensive procedures not only to keep patients safe, but also the medical staff safe, too. If I am reading between the lines, the huge number of coronavirus cases is putting patients and providers at risk for those precautions to break down.
That narrative is (rightfully so) starting to stress a lot of us out.
I came across a discussion on twitter this morning about CF wards in the UK being used for coronavirus patients.
Upon further review, it’s true. CF beds are being converted to coronavirus beds.
On one hand, I think it’s the right choice. In a way, CF isolation rooms are built for this kind of thing. You and I (and everyone with CF), adhere to contact isolation precautions when we’re inpatient, and given how infectious coronavirus seems to be, isolation rooms seem to be the best way to keep medical staff safe and to preserve operational continuity.
On the other hand, I am sure people with CF in those areas cannot believe what is happening. We cannot overlook people with CF who are already inpatient, dealing with critical illness, waiting for lungs in ICU and those who may not be able to treat at home.
So while I do think it is the right decision for medical centers to prepare for this kind of thing, I think it is a tough bridge to cross.
That being said, the window for transplant and critical care cannot close. Folks with CF cannot be triaged out of an opportunity to get the care we require.
That doesn’t mean we can’t do our part, though. If your health allows for it, at the very least consider moving towards outpatient or remote care. If you want to take it a step further, you can prepare to move that way.
I know if I were in a situation where I needed a tune up, I would work to get everything scheduled out of my home – getting an IV placed and medications delivered. In fact, I know that’s something a lot of people with CF already do.
I would feel very uncomfortable going to my medical center to have all of that done right now.
The move to an outpatient care structure in the near term is going to require home care companies, coverage agencies and payers, care centers, and patients to demand this need together.
In the long term, it’s probably worth looking at the net benefit of home care operations. Is going into the center or hospital really all it’s cracked up to be? When it’s time for a tune up, I know a do a hell of a lot better job taking care of myself and sticking to a routine than the overworked staff – especially after I have been on treatment for a few days.
We have most of the tools we need to look after ourselves from the comfort of our own homes and technology is advancing to provide remote monitoring – home PFT’s, for example. Of course there will always be a need to see a physician in person, and critical illness is a different story, but do routine hospital stays and clinic visits need to happen as frequently as they do now? I guess we’ll see which way that trends with modulator use.
Unfortunately we don’t have that opportunity in there here and now. Too often do I hear stories about CF patients not being able to use home care because they can’t get it covered.
If you find yourself in that population and live in a COVID-19 hot spot area, I would strongly urge you to get on the phone with your clinic’s social worker to work on contingencies or coverage waivers if you feel like you’re sliding towards a pulmonary exacerbation.
I also call on insurance providers and home care companies to see the enormous challenge that lies before our community. It is up to them to make sure that chronic illness needs are fulfilled while our medical centers deal with an unprecedented challenge.
If your CF clinic hasn’t already indicated a telehealth option, I think it is more than appropriate to ask about it if you feel it necessary to do so.
This is the exact heart of patient empowerment… If you ever feel uncomfortable, you are well within your right to ask about a policy or contingency. Work with your providers to get whatever it is that you need.
Once we’re through the pandemic, it will be worth looking back on the how telehealth did or did not work for our community. Maybe it’ll end up being a staple for all of us.
In the coming weeks, though, we may not have a choice but to rely on remote care. For that reason, if you are healthy enough, I think you have to prepare to do your part to lessen the burden on the system. I will be doing my part to do so.
