Face Mask Tips for Beginners

It’s an odd time we find ourselves in, isn’t it friends?

I recently had to get tested for COVID-19, something that scared the daylights out of me. While my test came back negative, we know that there are debates over the efficacy of these tests currently. I doubt we’ll truly know who was positive at some point until we have the antibodies test flushed out.

As someone interested in public health and who is in the high-risk category, I believe it’s incredibly important to talk about tips and tricks for wearing a face mask.

person wearing an N95 mask | 'Face Mask Tips for Beginners' | Not Standing Still's Disease

 

The gold standard

If supply and money weren’t barriers, everyone would have an N95 mask. What does that mean? According to the FDA:

The ‘N95’ designation means that when subjected to careful testing, the respirator blocks at least 95 percent of very small (0.3 micron) test particles. If properly fitted, the filtration capabilities of N95 respirators exceed those of face masks. However, even a properly fitted N95 respirator does not completely eliminate the risk of illness or death.

These are not surgical masks, but heavy-duty respirators:

Photo of N95 respirator
Source: https://www.fda.gov/medical-devices/personal-protective-equipment-infection-control/n95-respirators-and-surgical-masks-face-masks

 

What if I can’t find an N95 mask?

We really should be saving these for people with underlying conditions or health care providers anyway. Thankfully, there are a ton of other options!

One of the people I know locally wanted me to pass along that, if you have masks with a filter pocket, you can use charcoal or carbon sheets in it. This person does this & will be relying on it right now. Even those thicker blue paper towels that a lot of handy peeps use can help block extra germs when used in the filter spot in a pinch.

Need a way to find a mask with a filter pocket? There are some eerily cute options here. AC Dumlao has a thread of awesome masks made by BIPOC folx who need extra support right now. Look at spots like Etsy for masks, too. There are a lot of options, especially where you can help people in marginalized communities and not just a company.

Make sure they have a filter pocket if you want one. It just adds an extra layer of protection, even without a filter.

You can absolutely create your own face mask! The best material to use for this is quilters cotton, but that’s also hard to breathe through. Go for tightly woven fabric – which works better with a layer of flannel in the middle.

Shoot, you can even check out the FB page for the Honolulu Department of Emergency Management for ways to create a simple mask. Any protection is better than nothing!

How do I wear my mask?

Dr. Anthony Fauci and others have recently walked people through this process. Here it is simplified:

  1. Wash or sanitize your hands.
  2. Put the mask on starting at your nose and ending at your chin.
  3. To take off the mask, start at the back of your head. Go for the straps around your ears, not the mask itself.
  4. Clean your mask (see below).
  5. Wear it as much as possible when going out.

Artist Kathryn Grimm shares, “If the mask you’re using has two straps, then both need to be used at all times in order to ensure a proper seal on your face. I’ve seen so many people wear them with one strap hanging loose, which means they are not getting the full protective quality from it!”

Can I wash my mask?

That depends on what type of mask you have. Obviously, disposable masks cannot be washed, per se. We are getting to the point where we need to consider sanitizing as many of the disposable masks. That’s not just my belief, either. If you must try to sanitize them, though, don’t put them in the microwave.

“Ultraviolet light has been shown to kill the virus,” said Dr. Seema Lagvankar, AdventHealth Infectious Disease Specialist. This will work with disposable masks. For those with N95 masks, Dr. Steven Hauser, also with AdventHealth, recommends “steaming the mask for 10 minutes or placing (the) mask in a low oven at 170 for 30 minutes.”

Regarding the oven, Stanford found 75 degrees Celsius was best. That’s 167 Fahrenheit, so the 170 is a rough estimate. (H/T to Aly James for making me aware of this study.)

If you have an all-cloth mask – that is, one without a filter – you can also wash it with your laundry.

Here’s information from my preferred mask makers, Vogmask:

You need not wash the mask frequently. Hand wash by rinsing outer and inner layer with water. Add a drop of liquid soap and gently rub around inner and outer layer. Rinse again and hang to fully dry before storage in a cool, dry place. Wash the mask only when you wish to clean the outer and inner layer. Washing the mask does not clear the filter media of microscopic particles. The valve is permanently attached to the mask. Rinsing the valve will clear it of microscopic dust and particles. For maximum cleanliness, respirator users should wash their hands before putting on a respirator and after taking one off. (source)

They also state that you can “use alcohol wipes >61% or spray on surfaces” and “expose to sunlight.”

I’m afraid to wear a mask…

Look, I don’t blame you. I’ll talk a little about my experience as someone who needs a mask regularly later.

Right now, people who are of Asian heritage or are Black and Brown are especially afraid. It makes absolute sense, considering the uptick in anti-Asian hate crimes during this pandemic as well as fears at the intersection of illness and race. Black people have been murdered for existing in lesser ways than protecting themselves with face masks. There are already known incidents of racial profiling and masks coinciding.

If you don’t feel safe wearing a mask, please at least consider other ways you can protect yourself. Wash your hands a lot. Use hand sanitizer if you have it. Change clothes and shower immediately when you come in from grocery shopping. There are plenty of other steps you can try to take to limit your risk of getting COVID-19.

I’m here if you need to talk to someone.

What do people who have already been using masks want me to know?

Thankfully, there’s a lot of information out there from disabled folx:

Read this important piece from Audacity Magazine:

Right now, most people feel like they’re drowning. But disabled people have been surviving this way for so long, that we have learned to dream in the midst of always having to fight for our right to live —our right to keep our heads above water and still dare to believe that our lives are worth saving. As disabled people we are very aware that our risk of dying goes beyond medical fragility. Our risk of dying, during this global crisis, has a lot to do with the fear driven ableism that leads society to believe disabled lives can be considered disposable.

You should also read this piece from The Atlantic:

As the coronavirus spreads, states may rely on existing best-practice protocols for rationing treatment if they have more coronavirus patients than they do beds and equipment. Some of those protocols stipulate that in such an emergency, people with intellectual or physical disabilities will be deprioritized. The Department of Health and Human Services, in response to formal legal complaints from disability advocacy groups, recently issued guidance that hospitals cannot ration treatment based on disability status. But that’s not enough to ensure that there won’t be discrimination, activists say.

If you only read one of these pieces I’ve linked, make it this piece on Vox from Alice Wong:

The debates on health care rationing unveil how our society devalues vulnerable populations. Draft guidelines from various states and health systems identified people with dementia, cancer, intellectual disabilities, and many other pre-existing conditions as those who will not benefit from treatment compared to younger, healthier, non-disabled people. Dr. James Keany, an ER physician at Providence Mission Hospital in Mission Viejo, California, was quoted recently in the Los Angeles Times: “As it stands in the US, if your family member is adamant that you would want everything done and you’re 90 years old, wearing a diaper, severely demented, you would get put on a ventilator … Most countries consider that malpractice because what are you saving that person for?”

As someone who relies on a mask, I’ve got a few things to share, too.

photo of writer with a black backwards baseball cap on and a black vogmask

I’ve relied on my mask off and on for a few years. It’s something that protects me when I’m out and about during cold & flu season in addition to keeping me safe from scents. Without it, I wouldn’t be able to work, go grocery shopping, or even to events. Due to my Mast Cell Activation Syndrome, I could legitimately die without my mask – and that’s without a pandemic!

I often get weird looks when I wear my mask. People assume either that I’ve got something they can catch or that I’m afraid of everything. I don’t even have to worry about physical distancing regularly because no one wants to be too close to me with that on. On the flip side, I often feel worried about walking through stores with masks on as pretty clearly queer, invisibly disabled, and increasingly visibly transgender. Hate crimes are a thing I worry about all the time and, if I’m honest, I’ve avoided using my mask in many situations in the past because I was afraid for my life.

This is reality. I clearly don’t have the ‘luxury’ of avoiding my masks anymore, though.

One of the things I hope people take away from this pandemic is that many people need masks regularly. We’re not weird, just dealing with health issues. Movements rooted in disability awareness like #HighRiskCovid19 have helped abled people better understand what we’re facing… at least, I hope so.

COVID-19 Drug Shortages: 53 Organizations Join the ACR to Advocate for Balanced Supply Allocation Policies

The following is a letter sent to governors, lieutenant governors, insurance commissioners, and pharmacy boards this week:

The American College of Rheumatology and the undersigned organizations represent rheumatology providers and patients across the United States. We routinely weigh in on policy matters that impact the practice of rheumatology and rheumatology patients. Our providers have extensive experience with the antimalarials, hydroxychloroquine (HCQ) and chloroquine, which are under investigation as potential treatments for the novel coronavirus. Both medications have been successfully used to treat lupus (SLE) and rheumatoid arthritis for decades. SLE, rheumatoid arthritis, and malaria are currently the only conditions for which HCQ has been approved by the Food and Drug Administration (FDA). There are currently limited data to support the use of HCQ in treating COVID-19.

While we remain hopeful that these drugs will be proven effective against the scourge of COVID-19, we also need to ensure that rheumatology patients who depend on these medications have access to them during this crisis. HCQ is critical to many rheumatology patients and, in the case of SLE, the only drug proven to reduce mortality. Specifically, we urge you to:

  • Make every effort to ensure an adequate supply of HCQ for all patients who need it. Efforts to increase production and distribution of HCQ for rheumatology patients, as well as patients with COVID-19 where indicated, should be supported. Protections on the supply of HCQ should include all aspects of the supply chain from manufacturer to wholesaler, wholesaler to pharmacy and final distribution to patients.
  • Ensure the allocated supply of HCQ for COVID-19 is prioritized (but not limited) to support clinical trials designed to test the efficacy of HCQ as preexposure prophylaxis, post-exposure prophylaxis, and therapy both in mild-to-moderate as well as severe cases of COVID-19.
  • Work with the state board of pharmacy to ensure that HCQ prescriptions are filled when prescribed by a rheumatologist, a rheumatology professional, or for a patient with COVID-19 when the patient’s use of the drug is initiated and managed by an appropriate specialist.
  • Relax importation restrictions on HCQ during the COVID-19 pandemic to create alternative avenues for distribution of HCQ in your state.
  • Encourage decisions about the allocation of HCQ to be made locally, with input from experts, based on local conditions and calibrated over time as circumstances evolve. Decisions around allocation should not be made ad hoc by individual dispensing pharmacies acting in isolation.
  • Prevent unreasonable price increases or cost sharing increases for these drugs.
  • Consider limiting HCQ refills to 30 days for patients prescribed HCQ prior to the COVID-19 pandemic if local circumstances necessitate such action.
  • Request that insurers exempt rheumatology patients from prior authorization, step therapy protocols, and other utilization management practices during HCQ shortages so that they may more readily gain access to appropriate alternatives as determined by their rheumatologist or rheumatology health professional.
  • Communicate to the public, healthcare professionals, and other stakeholders accurate and up-to-date information about these drugs, their critical role in treatment for the current indications and the status of their use for COVID-19, including clinical trials underway and what is known or not known about the safety and efficacy of these drugs in COVID-19.
  • Prevent unrestricted access to HCQ for pre-exposure prophylaxis in the absence of clinical trial data supporting its use.
  • Prevent pharmacy-level restrictions on new starts of HCQ for patients with SLE.

We are in the midst of a public health crisis that is unprecedented in our lifetime. We understand the desire to find effective treatments as rapidly as possible. As members of the broader health community, we share the same desire, but those desires are tempered by the concern we have for rheumatology patients and our overall commitment to ensure that the drugs used to treat any disease are safe and effective.

We are happy to work with you and offer any assistance that we can during this difficult time. Thank you for your consideration of our concerns. If you have any questions, please contact Joseph Cantrell, Senior Manager of State Affairs, at jcantrell@rheumatology.org.

Sincerely,
American College of Rheumatology
Arthritis Foundation
Association for Women in Rheumatology
Coalition of State Rheumatology Organizations
Global Healthy Living Foundation
International Foundation for Autoimmune and Autoinflammatory Arthritis
Lupus and Allied Diseases Association
Lupus Foundation of America
Lupus Research Alliance
National Organization of Rheumatology Managers
Rheumatology Nurses Society
Sjogren’s Foundation
Alabama Society for the Rheumatic Diseases
Arizona United Rheumatology Alliance
Arkansas Rheumatology Association
Association of Idaho Rheumatologists
California Rheumatology Alliance
Colorado Rheumatology Association
Florida Society of Rheumatology
Georgia Society of Rheumatology
Hawaii Rheumatology Society
Kentuckiana Rheumatology Alliance
Looms for Lupus
Lupus Alliance of Upstate New York
Lupus Foundation New England
Lupus Foundation of Northern California
Lupus LA
Lupus Society of Illinois
Maryland Society for Rheumatic Diseases
Massachusetts, Maine, and New Hampshire Rheumatology Association
Michigan Lupus Foundation
Michigan Rheumatism Society
MidWest Rheumatology Society
Mississippi Arthritis and Rheumatism Society
More Than Lupus Foundation
Nebraska Rheumatology Society
New York State Rheumatology Society
North Carolina Rheumatology Association
Ohio Association of Rheumatology
Oregon Rheumatology Alliance
Pennsylvania Rheumatology Society
Rheumatology Alliance of Louisiana
Rheumatology Association of Iowa
Rheumatology Association of Minnesota and the Dakotas
Rheumatology Association of Nevada
Sjogren’s and Lupus Foundation of Hawaii
South Carolina Rheumatism Society
State of Texas Association of Rheumatology
State of West Virginia Rheumatology Society
Tennessee Rheumatology Society
Virginia Society of Rheumatologists
Washington State Rheumatology Alliance
Wisconsin Rheumatology Association

CC: Lt. Governor
Insurance Commissioner
Pharmacy Board

What Will The World Be Like Post-COVID-19?

COVID-19 is something that many of us are afraid of. I’ve talked a bit about my experience with symptoms and getting tested. Despite my test coming back negative, I’m still up in the air about what has been causing my and my partner’s symptoms. I’m not alone in this, either. Charis Hill recently wrote about their experience in addition to co-founding the #HighRiskCOVID19 hashtag.

To keep up with breaking news, visit Healthline’s page about COVID-19

Let’s take a look at what’s happening now and what might happen in the future.

COVID-19
Source: https://www.dhs.gov/coronavirus/coronavirus-news-updates

What’s going on?

Some healthcare systems are preparing for the worst, like Henry Ford in Michigan. Following Italy’s lead, they’ve already pre-determined disabled folx to be lower on the survivability list and worth of pulling ventilators from. They aren’t the only ones, either. Ableism has been running rampant, both on a systematic and individual level, including not giving a shit that many of us are at-risk. Thankfully, the blowback has been big enough that HHS’ Office for Civil Rights in Action issued a statement Friday that this type of thinking is wrong and discriminatory.

Protective equipment is in short supply right now, too. Ableds who won’t need these things hoard them. Meanwhile, disabled folx and healthcare providers are being screwed over. Hospitals and clinics are reusing PPE, even using garbage bags that won’t protect them at all. HCPs are asking for donations of PPE if possible (check in your area before donating) and some are even considering taking home-made masks. Cool companies like Bauer are making PPE, though! There’s also a cool 3d printer N95 facemask design out there for those looking to make some. If you’re using disposable masks, make sure to dispose of them properly.

A 17-year-old was turned away from the ER due to not having insurance. He died because of COVID-19 symptoms soon after. This is why we need universal health care. In other shitty news, Israel didn’t translate a lot of COVID-19 related information into Arabic, leaving a ton of people out.

Joel Freedman, the owner of an abandoned hospital in Philly, refuses to reopen unless he gets around $70 per room per night. Hahnemann University Hospital could hold 500 patients. Holiday Inn Express-Midtown is doing more for the cause right now than Freedman.

As if that weren’t enough, ER doctors who speak up about shortages – such as Dr. Ming Lin – risk their jobs to do so. His employers requested he remove social media posts showing the reality of working at PeaceHealth St. Joseph Medical Center in Bellingham, Washington. When Lin didn’t, he was fired. Apparently, it doesn’t matter that we have a shortage of health care providers.

A vaccine is getting tested as you read this!

Speaking of essential personnel, some people are making the argument that we need to nationalize food delivery apps like Grubhub and Uber Eats. Conversations about doing the same with other essential services like grocery stores, too. Considering the amount of price gauging, lack of protections, and lack of hazard pay, it’s worth a thought.

Instacart Shopper checks out in grocery store
Source: https://www.pymnts.com/coronavirus/2020/instacart-shoppers-plan-strike-monday-for-better-covid-19-protections-pay/

That’s it… right?

Not even close!

That stimulus bill got approved after being delayed by the GOP for BS reasons like wanting to eliminate Roe V Wade in the middle of a pandemic. It doesn’t actually help everyone that it should, so that sucks. Trump’s also not reconsidering cuts to the CDC budget so, you know, that’s terrifying. Combine that with fighting with states over supplies – monetarily and verbally – and it feels like we’re screwed.

While everyone swoons over how Cuomo is handling NYC’s infection rate, he’s done nothing to ensure the safety of people at Riker’s Island. In fact, Riker’s now has the highest infection rate in the world.

Some people are using this horrifying event as a call for eco-fascism. It’s awful and completely expected at the same time.

Another expected and upsetting occurrence has been anti-Asian violence. Whether it’s putting someone down verbally, coughing on them, or physically attacking them, racism has been on full display. While there’s no doubt that this would happen to a degree regardless, Trump’s comments about this being the ‘Chinese’ virus have absolutely contributed to the problem.

Dr. Fauci is trying hard to get people who aren’t listening on board with social distancing, etc. He’s starting to appear on late-night shows to get the message out. Without saying it, it’s clear he’s trying to undo the harm Trump has done with misinformation. You really should watch his visit to The Daily Show. Not everyone appreciates Fauci like I do. In fact, Trumpers are targeting him for trying to protect people.

Hydroxychloroquine box
Source: https://www.clinicaltrialsarena.com/projects/hydroxychloroquine/

Some of Trump’s misinformation included the notion that a malaria and anti-rheumatic drug would help ease COVID-19 symptoms. Not only has this not been studied, but it’s led to a run on these medications. It’s gotten to the point that patients on these medications for chronic illnesses are being taken off of them and ‘thanked’ for their ‘sacrifice.’

At least some news networks are cutting away from Trump’s lies?

What happens now?

Well, it’s going to get worse before it gets better. Fauci predicts it will be ‘several weeks’ before we’re done socially isolating. Some other experts have predicted this will be on-and-off for a year at least.

Since people of all ages are refusing to engage in social distancing techniques, we’re not going to flatten the curve as much as we truly need to. That’s especially true when around half of all people infected with COVID-19 don’t show symptoms and probably think nothing of going out. Our healthcare system will be taxed beyond what it can take, far beyond what we’re already seeing. They will start rationing care, especially thanks to Trump turning down a number of offers of COVID-19 tests, ventilators, and more.

I hope that we don’t wind up like Italy, now clocking almost a thousand deaths a day. I fear that’s where we’re headed, though.

Chart: Coronavirus: Upward Trajectory or Flattened Curve?
Source: https://www.statista.com/chart/21112/covid-19-growth-curve-selected-countries/

Instacart and other contractor-based companies engaged in essential services will strike. Instacart is planning to do so tomorrow, so this isn’t an edgy prediction. Others on the verge of striking due to lack of protection and hazard pay include garbage people and Amazon workers.

We’re all grieving, and that’s only going to get worse, too. It might take the disguise of anger or other emotions. Hell, it can even present in being unable to remember how to do easy things we do every single day. Telehealth and telemedicine – especially for mental health – will see a huge uptick. Companies like Better Help and Talkspace will try to give away free therapy for people affected by COVID-19. Unfortunately, they’re going to get overwhelmed quickly.

What does the long-term future hold?

Obviously, the hope is that the world can fight off increased COVID-19 infection until we have a vaccine. Even then, we’ll have to ensure that enough of the vaccine is produced that people can be protected. Covering as many people as possible requires us to make some healthcare changes or, at least, exceptions. Ideally, this will cause a shift toward universal healthcare. Unfortunately, it’s also something that will take a while. While the vaccine process is going as fast as possible, some estimate an effective vaccine will take 12-18 months to get into production. Honestly, that’s probably closer to 2-3 years.

It’s possible that there will be a certain level of herd immunity as people recover. This might aid those trying to vaccinate others who haven’t had it as they can test for antibodies (once that test is developed). However, herd immunity only lasts a small time. Until a vaccine is developed, it’s clear that our population will decrease by a significant amount.

Longer-term protections for essential care workers, from grocery workers to health care providers. Current laws have left people unable to make any income, drastically switching jobs, or forced to work and expose themselves to COVID-19.

Wearing masks will become the norm around the United States, particularly in concentrated metro areas. We’ll begin to see masks as commonplace instead of odd. I’m honestly excited because maybe I won’t feel weird wearing my mask for MCAS.

Public places will start pairing down the number of tables they have to give more space. This will wind up having an awesome plus for those of us who need extra space for accessibility reasons. We’ll see far more accessibility measures put in place, from remote work to everyone being allowed to vote by mail. Alyssa MacKenzie recently wrote a piece about how abled people’s fear right now is what she experiences year-round. For the first time, abled people are experiencing the concerns the rest of us do all the time. Abled people will start understanding chronic illness more.

Depending on who gets elected for the next few presidential terms, we’ll see nationalization for things like the internet. More protections will be put in place for essential workers.

B&W pic of people protesting including holding a sign that says 'justice now'
Source: https://bioneers.org/5-videos-of-social-justice-leaders-that-will-spark-the-changemaker-in-you-zmbz1901/

Mutual aid – something marginalized folx have relied on for ages – will start becoming more commonplace. This is especially true in the odd interim spot before some of these accessibility measures are formally instituted. There are already multiple sources of mutual aid out there, both based on identity and location.

My hope is that the people coming to grips with inequality they never saw before will learn about what methods we have for fighting these issues. Lack of accessibility is something we’ve discussed openly and often. Still, it seems like abled folx only care when accessibility helps them, and that’s frustrating.

At the end of the day, it seems like we’re hopefully waking up to what inequality looks and acts like within society. It’s absolutely a long time coming. In recent years, movements like Black Lives Matter have highlighted racism and police violence. Anti-ableism, anti-sanism, and other anti-oppression movements have gained more and more momentum. Even social distancing is a social justice measure.

Ideally, with the flaws being pointed out in our capitalistic system, we will start to shift away from the cover feudalism we live in. I really hope that we use this opportunity to move towards improving our country and our world.

If I’m honest, though, I know not all of these things will change, and it’s a goddamn shame.

Test Came Back Negative

I know a number of people were really concerned about me the last few days due to me having to get a COVID-19 test. My partner and I both came back negative.

As much as I’m rejoicing from that right now, it also has me concerned.

First of all, the tests have been yielding a number of false negatives. Secondly, if not COVID-19, then what was causing our symptoms?

My partner has been told not to work – even remotely – until they have been symptom-free for 24 hours. That hasn’t happened yet. Their cough is only ceasing with cough suppressants and their fever continues to come back at least twice daily.

As for me? My symptoms are mostly gone. I’m still having a fever every so often. I’m also dealing with some shortness of breath and lightheadedness. Honestly, it’s hard to tell if this is my normal body stuff or acute stuff at this point. All I can do is stay vigilant, I guess.

I’ve gotten incredibly stir crazy. The lack of IRL interactions with folx is really difficult now that I’ve rediscovered my social butterfly abilities. That just means it’s time to have a Netflix watch party with some of my hockey pals, I suppose.

Stay safe!

How I Got A COVID-19 Test

Friends, it’s been nearly twelve hours and my nose still hurts.

As I talked about in my last post, I developed symptoms around the 10th-12th. During this time, I messaged my doctor on mychart and asked what the protocol was for getting tested, just in case. By the evening on the 13th, I was pretty convinced that COVID-19 would explain my symptoms but waited on calling.

On the 18th, I called my doctor’s office and had a nurse take notes on my symptoms and possible exposure. She passed that along to the infectious disease team who evaluated my case. They called me back around 2 pm on the 19th, despite being told it could take up to 72 hours. They scheduled me for an appointment today at 11:30.

The Test

I was told to wear a mask into the clinic, so I put on my vogmask and headed to my appointment. Upon arrival, I filled out a form with my symptoms, the date of my last flu shot, and any recent travel. The nurse came up and got me and went through my symptoms. Then, it was time to get down and dirty.

The COVID-19 test is similar to the flu test where they take a swab from your nasopharynx. That means they stick a long Q-tip incredibly far up your nose. Then they have to twist the Q-tip around for ten seconds.

illustration of a nasal swab
Source: https://www.youtube.com/watch?v=DVJNWefmHjE

All I could think about was how pushing too far is a way to kill someone.

It burned and hurt. I can still smell medical smell way up my nose. My ears and throat weren’t pleased, either.

What Now?

I’ll know the answers within 4-5 days. Honestly, I’m leaving a little wiggle room with that amount of time, though, since we’ve officially hit over 200 cases.

Fingers crossed!

Ruminations Before My COVID-19 Test

I’ve been having COVID-19 symptoms for about a week now, though part of that is hindsight. Last week, I began having chills that progressed into a runny nose, sore throat, body aches, fatigue, minor cough, and fever. The local infectious disease peeps have determined that I need to be tested, and I’m definitely grateful for that!

I go tomorrow at 11:30 am for my nasal swab. I’ve heard it’s not very comfortable, so I’m not looking forward to it by any means.

I am scared. I’m scared of what the test might mean with either result. I’m worried about what else might be going on, should the test be negative…

But I’m terrified for what it might mean if it’s positive.

My symptoms haven’t been as severe as many people’s, but I think I know why. Rheumatologists and other doctors have hypothesized that kineret might help eliminate the cytokine storm COVID-19 causes that is often fatal. Why? Well, Macrophage Activation Syndrome is essentially a similar bodily reaction, and kineret treats that. Sobi, the drug’s manufacturer is running a clinical study to test this out. Throughout this time of being ill, I’ve continued to do my shot, and I really feel as though it’s made a major difference.

My partner doesn’t have my medication and has some different symptoms, including a nasty cough that we’re managing with a suppressant. I’m concerned about their symptoms and hope they’re able to get tested soon, too.

Despite all the change and turmoil I’ve been through in the past year, it really has been the best year. I’ve figured out who I am – including starting testosterone on January 23rd to be more masculine and affirm my gender identity. I learned more about how to care for my body and mind. I started a job I enjoy, despite how emotionally draining and underpaid it is. Hell, I started playing hockey, too, and I love every single minute of it. And, saving the best for last, I found a partner who sees me for me, laughs at my jokes, and whom I adore.

All of that makes this fear of what might happen more… salient. I know I’m not that healthy in the eyes of ableds and would likely be on the chopping block, should the US resemble Italy anytime soon. I know my life wouldn’t be as valuable to the economy or providers, etc… But I also know that I feel like I’ve just started truly living it as myself. To have it threatened because of capitalism and a pandemic is terrifying.

Most of all, I’m afraid for my partner. If something happens to me, I know they’ll be okay but they won’t be happy. If I’m sick, they’re guaranteed to be, too. What if they get really sick? I have seen these thoughts cross their mind several times lately and their anxiety level is so high.

For the first time, I’m far less afraid of death. Don’t get me wrong – I’m still horrified by the idea of dying, but it’s less panic-inducing when the concern is related to Ian or my sister and her kids.

It’s almost cathartic to know I have so much to lose now when it often didn’t feel that way before.

For now, all I can do is try to get some sleep tonight. It’s worse than sleeping as a kid before Christmas, especially given the level of enthusiasm I have for this nasal swab.

Stay safe, friends, and take this pandemic seriously.

ACR Releases First Guideline to Address Reproductive Health for Patients with Rheumatic Diseases

The following is a press release from Monday this week. Note that it contains cisheterosexist language.

Today, the American College of Rheumatology (ACR) published the 2020 Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases. This is the first, evidence-based, clinical practice guideline related to the management of reproductive health issues for all patients with rheumatic diseases. With 131 recommendations, the guideline offers general precepts that provide a foundation for its recommendations and good practice statements.

“This guideline is paramount, because it is the first official guidance addressing the intersection of rheumatology and obstetrics and gynecology (OB-GYN),” said Lisa Sammaritano, MD, lead author of the guideline. “Rheumatic diseases affect many younger individuals; however, little education has been provided to rheumatology professionals on current OB-GYN practices. The guideline [and more detailed online appendices] presents vital background knowledge and recommendations for addressing reproductive health issues in the full spectrum of rheumatology patients, with additional focus on specific diagnoses that require more detailed recommendations such as systemic lupus erythematosus (SLE) and antiphospholipid syndrome (APS).

The guideline provides 12 ungraded good practice statements and 131 graded recommendations that are intended to guide care for rheumatology patients except where indicated as being for patients with specific conditions or antibodies present. Good practice statements are those in which indirect evidence is compelling enough that a formal vote was considered unnecessary; these are ungraded and are presented as suggestions rather than formal recommendations. The recommendations were separated into six categories: contraception, assisted reproductive technology (fertility therapies), fertility preservation with gonadotoxic therapy, menopausal hormone replacement therapy, pregnancy assessment and management, and medication use.

While some of the recommendations are strong, many of the recommendations presented are conditional due to a lack of data. Pregnant women are not generally enrolled in clinical studies; and few maternal health studies focus on rheumatology patients. A few notable recommendations from each category include:

Contraception

  • Strong recommendation for women with rheumatic disease who do not have lupus or APS to use effective contraceptives with a conditional recommendation to preferentially use highly effective IUDs or a subdermal progestin implant.
  • Strong recommendation against using combined estrogen-progestin contraceptives in women who test positive for anti-phospholipid autoantibodies (aPL) or APS

Assisted Reproductive Technology (Fertility Therapies)

  • Strong recommendation for fertility therapy in women with uncomplicated rheumatic disease who are receiving pregnancy-compatible medications, whose disease is stable, and who test negative for aPL. Specific recommendations also address patients testing positive for aPL and suggest an anti-blood clotting procedure.
  • Conditional recommendation against increasing prednisone dosage during fertility therapy procedures in lupus patients.

Fertility Preservation

  • Conditional recommendation against testosterone co-therapy in men with rheumatic disease receiving cyclophosphamide (CYC) and a good practice suggestion to cryopreserve sperm before CYC treatment in men who desire it.
  • Conditional recommendation for monthly gonadotropin-releasing hormone agonist co-therapy for premenopausal women with rheumatic disease who are receiving monthly CYC injections/infusions to prevent premature ovarian insufficiency.

Pregnancy Assessment and Management

  • Strong good practice suggestion to counsel women with rheumatic disease, who are considering pregnancy, on the improved maternal and fetal outcomes associated with entering pregnancy during low disease activity.
  • Conditional recommendation to treat lupus patients with low-dose aspirin daily (81 to 100 mg) starting in the first trimester. For women testing positive for aPL who do not meet the criteria for obstetric or thrombotic APS, it is conditionally recommended to preventatively treat with a daily aspirin (81 to 100 mg) starting early in pregnancy and continuing through delivery.

Menopause and Hormone Replacement Therapy

  • A good practice suggestion to use hormone replacement therapy in postmenopausal women with rheumatic disease who do not have lupus or have a positive aPL test; and who have severe vasomotor symptoms, have no contraindications, and desire treatment.
  • A conditional recommendation for hormone replacement therapy in women with lupus and without aPL.
  • Conditionally recommend against treating with hormone replacement therapy for women with asymptomatic aPL, and strongly recommend against hormone replacement therapy for women with any form of APS.

Medication Use (Paternal and Maternal)

  • Strongly recommend against use of CYC and thalidomide in men prior to attempting conception.
  • Strong recommendation against the use of NSAIDs in the third trimester.

Individuals involved in the development of the new guideline included rheumatologists, obstetrician/gynecologists, reproductive medicine specialists, epidemiologists, and patients with rheumatic diseases. ACR guidelines are currently developed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology, which creates rigorous standards for judging the quality of the literature available and assigns strengths to the recommendations that are largely based on the quality of the available evidence.

“This guideline should open avenues of communication between the rheumatologist and the patient, as well as between the rheumatologist and the OB-GYN,” said Dr. Sammaritano.  “A better understanding of the risks and benefits of reproductive health options will enhance patient care by providing safe and effective contraception, improving pregnancy outcomes by conceiving during inactive disease periods, and allowing for continued control of rheumatic diseases during and after pregnancy with the use of well-suited medications.”

A draft of the guideline was presented during the 2018 ACR/ARP Annual Meeting in Chicago. Since that time, the guideline team has condensed the original three-part draft into a single, concise manuscript, with detailed background and discussion now available online. The guideline development team also incorporated color-coded flow charts to highlight common decision-making points to make it user friendly.

The paper containing the full list of recommendations and supporting evidence is available at  https://www.rheumatology.org/Practice-Quality/Clinical-Support/Clinical-Practice-Guidelines/Reproductive-Health-in-Rheumatic-Diseases.

Seven Medical Societies Join the ACR to Oppose Insurer Policy Limiting Access to In-Office Treatments

The following is a press release just issued by the ACR:

In comments submitted to BlueCross BlueShield of Tennessee, medical societies representing rheumatology, ophthalmology, dermatology, gastroenterology and urology specialists joined the American College of Rheumatology (ACR) to raise grave concerns about a recent insurance trend that requires providers to obtain physician-administered treatments through mail-order specialty pharmacies. Providers are concerned the mandate adds additional layers of red tape that will delay patient care, reduce the ability of providers to ensure therapies have been properly handled and safely stored, inflate patient out-of-pocket costs, and result in an increase of drug waste.

“We have had an alarming number of practices reporting they have been denied the ability to use therapies currently available in their offices to administer patient care quickly,” said Ellen Gravallese, MD, President of the ACR. “Rheumatology patients receiving in-office treatments typically have debilitating conditions such as rheumatoid arthritis that cause severe pain, inflammation, joint immobility and deformity. The decision to use a more potent infusion or injection therapy often comes after patients have failed less potent prescription drugs and have continued to show signs of disease activity and/or progression. Finding an effective treatment quickly is imperative, because joint damage progresses in the setting of continued inflammation, and we cannot reverse damage once it has already taken place.”

Under the current model of care, rheumatology providers secure in-office treatments at the lowest price possible through negotiating periodic bulk purchases directly from manufacturers and storing the medications in-house to make them readily available. Once needed, the treatments are administered under provider supervision to watch for adverse reactions due to their potency. The new policy proposed by BlueCross BlueShield would mandate patients and/or physicians obtain the treatments from the insurer’s preferred specialty pharmacies instead and wait for them to be shipped to the provider, so that the insurance company can take advantage of rebates negotiated by their pharmacy benefit manager (PBM).

PBMs are hired by insurers to manage their drug benefit programs and have been receiving increased national scrutiny that has reached the U.S. Supreme Court for their lack of transparency around rebates and where “cost-savings” are going while prescription drug prices, insurance premiums and out-of-pocket costs for patients continue to soar. The controversial role of PBMs and the lack of reduced out-of-pocket costs for patients were focal points of the ACR’s 2018 Rheumatic Disease Report Card.

Providers are concerned this new insurance practice will increase administrative burden due to one-off procurements through multiple specialty pharmacies and will reduce confidence that the medications have not been exposed to high temperatures. Additionally, remaining doses of the drug would have to be thrown away if a patient is unable to use the medication for any reason (i.e. infection, change in medical history or intolerance/ineffectiveness) due to it already being assigned to one individual.

The specialty groups also expressed concerns that many providers will not be able to take on the additional costs of greater administrative burden and reduced efficiency in prescribing, nor the liability around administering drugs for which they are unable to confirm the handling prior to reaching their office, thereby requiring patients to look for care in other treatment settings that carry higher out-of-pocket costs.

“The predictable result of this policy will be a shift in site of care for your patients’ infusions to a more expensive hospital outpatient setting, which may serve as a significant barrier to their access…” the letter states. “Not only will treatment costs be higher in the hospital setting, but there will be a predictable minority of patients who due to their inconvenience, the higher out-of-pocket cost, or simply fear of the unknown, will drop their treatments when transferred to this setting, and their overall healthcare costs will predictably rise as their diseases flare.”

The letter goes on to share that some patients may lose access altogether, because not all hospital facilities accept medications from outside specialty pharmacies, and that any savings to insurers that were derived from PBMs negotiating drug prices for their specialty pharmacies would likely be offset by drug waste and higher point-of-care costs.

The comment letter was signed by the American Academy of Ophthalmology, American Academy of Dermatology, American Gastroenterological Association, American Urological Association, Coalition of State Rheumatology Organizations, Alabama Society for Rheumatic Diseases and Tennessee Rheumatology Society.

ACR & AF Release Updated Treatment Guideline for Osteoarthritis

The following is a press release from the ACR from today:

Today, the American College of Rheumatology (ACR), in partnership with the Arthritis Foundation (AF), released the 2019 ACR/AF Guideline for the Management of Osteoarthritis of the Hand, Hip and Knee. The ACR periodically updates guidelines to reflect any advances in management added to the literature since the last publication, which in this case was 2012.

Osteoarthritis (OA) is a common rheumatic disease that affects the entire joint, involving the cartilage, joint lining, ligaments, and bone. It is characterized by breakdown of the cartilage (the tissue that cushions the ends of the bones between joints), bony changes of the joints, deterioration of tendons and ligaments, and various degrees of inflammation of the joint lining (called the synovium). According to the Arthritis Foundation, approximately 27 million Americans suffer from the disease. Establishing effective management and treatment for OA is an ongoing goal in rheumatology.

“Patients with osteoarthritis can vary quite a bit in how the disease affects them. They might have a single joint, a few joints or many joints that are involved where symptoms can occur throughout adult life,” said Sharon Kolasinski, MD, a practicing rheumatologist who served as lead author for the guideline update. “The new guideline recognizes not only the variety of clinical presentations of OA, but also the broad array of treatment options available.  Clinicians and patients can choose from educational, behavioral, psychosocial, mind-body, physical and pharmacological approaches. It’s important to remember that treatment for OA is not one size fits all. Over time, various options might be used then reused or changed in response to a change in the patient’s symptoms.”

For the first time, the new guideline incorporates direct patient participation in its development. OA patients, who were recruited through a partnership with the Arthritis Foundation, were especially instrumental in emphasizing the role of shared decision making when choosing treatment options such as those with conditional recommendations.

“We are proud to have been involved in this work and to facilitate the important contributions of the patient and parent partners,” said Cindy McDaniel, Arthritis Foundation’s Senior Vice President of Consumer Affairs. “Their lived experiences truly helped to guide this project.”

Between the extensive literature review and patient insight, the updated guideline includes several differences since the 2012 recommendations. Of note, exercise remains an important intervention in the updated recommendations, with a strong body of literature supporting its use for almost all patients with OA. Below are other recommendations included in the update:

  • Strong recommendations (previously conditional) for self-efficacy/self-management programs, use of tai chi for knee and hip OA, topical NSAIDs for knee and hand OA, oral NSAIDs and intra-articular steroids for knee and hip OA.
  • A new conditional recommendation for balance exercises for knee and hip OA and duloxetine for knee OA.
  • A conditional recommendation for using topical capsaicin in patients with knee OA (previously conditional against).
  • New conditional recommendations for using yoga, cognitive behavioral therapy, radiofrequency ablation and kinesiotaping for first carpometacarpal and knee OA.
  • A conditional recommendation against using manual therapy with exercise for knee and hip OA (previously was conditionally for usage).
  • A strong recommendation against transcutaneous electric nerve stimulation for knee and hip OA (previously was a conditional recommendation).
  • A new conditional recommendation against using intra-articular hyaluronic acid injections in first carpometacarpal and knee OA.
  • A new strong recommendation against using hyaluronic acid injections in patients with hip OA.

Additionally, recommendations were made against the use of bisphosphonates, hydroxychloroquine, methotrexate, PRP injections (in hip and knee OA), stem cell injections (in hip and knee OA), tumor necrosis factor inhibitors and interleukin-1 receptor antagonists. “A number of agents have been tested and fail to show adequate benefit to justify their use, while others will require additional investigations to clarify their place in the OA armamentarium,” said Dr. Kolasinski. “The recommendations against usage of these therapies reflects the fact that pharmacologic options remain limited for the management of OA. A broad suggested research agenda is outlined in the guideline to address this gap.”

The paper containing the full list of recommendations and supporting evidence is available at https://www.rheumatology.org/Practice-Quality/Clinical-Support/Clinical-Practice-Guidelines/Osteoarthritis