We Live on Stolen Land

Posted on by Grayson
If you are not indigenous, you live on stolen land.

 

“Okay, but why are you talking about it?”
I’m white. I also get that this site isn’t necessarily one that you’d all expect me to talk about this on. That doesn’t mean it’s not important or that those of us who want to end injustice should stay silent on. That combined with my new job in public health and us talking more in general about injustices and, well, here we are.

 

“So, what’s going on?”
The US government stole and conquered this nation, pushing indigenous folx to smaller and smaller spaces, violating treaties over and over again while openly engaging in genocide and causing irreparable harm to folx.
We then tried to steal indigenous culture by using social workers and others to steal their children and raise them in ‘boarding schools‘ [pronounced institutions] meant to make them more like white Christians. We stripped them of their native languages as well as family and tribal connections.

 

The harm continues.
Things like healthcare that our government stated they’d provide are woefully inadequate. Tribal services are often not culturally competent and there aren’t enough providers – or resources given to them – to actually provide care. Many indigenous folx have been pushed to reservations where water is scarce, they have little to no access to the internet and power or other services, and food doesn’t grow in addition to being miles away from grocery stores.
To top it off, we white folx have carved monuments to our whiteness into their holy areas like Mount Rushmore. When indigenous folx try to speak up about things like this or proposed pipelines like Standing Rock, they’re met with violence of the worst kind. The police have become increasingly militarized against the people we stole this land from. If you’re reading this the weekend of July 4, 2020, this is literally happening as you read.
That doesn’t even get into the inability of indigenous folx to arrest white folx committing crimes on their lands and against them. Law enforcement in the white world doesn’t give a shit and rarely does anything when there’s a ton of evidence, let alone if they have to actually investigate. This lends itself to the problem related to Missing and Murdered Indigenous Women. There are so many resources on MMIW that I can’t include them all, but please make sure to read more below:

There are also very real issues with policing harming indigenous folx, both directly and indirectly. For more, read:

So, today I urge y’all to learn about whose land you occupy by visiting https://native-land.ca/ I live on stolen land of the Kiikaapoi, Peoria, Ho-Chunk, Miami, Očeti Šakówin, and Sauk and Meskwaki tribes. What about you?

ACR Releases Two New COVID-19 Clinical Guidance for Pediatric Patients

Posted on by Grayson

ACR has created two new task forces to address pediatric concerns during the SARS-CoV-2 (COVID-19) pandemic. The first is the COVID-19 Pediatric Rheumatology Clinical Guidance Task Force and the other is the Multi-System Inflammatory Syndrome in Children (MIS-C) and COVID-19 Related Hyperinflammation Task Force.

On June 18th, both task forces have released new clinical guidance and recommendations for the care of pediatric patients in the context of COVID-19. All recommendations are based on current knowledge and will be updated as new scientific evidence accumulates.

For the COVID-19 Clinical Guidance for Pediatric Patients with Rheumatic Disease, recommendations include, but are not limited to, the following:

  • Routine ophthalmologic surveillance of patients at high risk for chronic uveitis or with a history of uveitis should continue on schedule via in-person visits with slit lamp examination.

In ongoing treatment of pediatric patients who do not have COVID-19 exposure or infection:

  • NSAIDs, hydroxychloroquine (HCQ), angiotensin-converting enzyme inhibitor (ACEi)/ angiotensin II receptor blocker (ARBs), colchicine, conventional DMARD (CDMARD), biologic DMARDs (bDMARDs) and targeted synthetic DMARDs (tsDMARDs) may be continued or initiated to control underlying disease. Glucocorticoids may be continued or initiated, using the lowest dose possible to control underlying disease.
  • For pediatric patients with life and/or organ threatening manifestations, high dose oral or intravenous “pulse” glucocorticoids and cyclophosphamide may be initiated to control underlying disease.

In pediatric patients with ongoing treatment who have close/household exposure to COVID-19:

  • Initiation of high dose oral or intravenous glucocorticoids should be delayed for 1-2 weeks, if deemed safe by the treating provider, for pediatric patients with non-life and/or organ threatening manifestations. For those patients with life and/or organ threatening manifestations, the initiation of high dose oral or intravenous glucocorticoids should not be delayed.

In patients with ongoing treatment of pediatric patients with asymptomatic COVID-19 infection:

  • NSAIDs, HCQ, colchicine, cDMARDs, bDMARDs, tsDMARDs, cyclophosphamide or rituximab may be continued, if necessary, to control underlying disease.

In patients with probable or confirmed COVID-19 infection:

  • cDMARDs, bDMARDs (except IL-1 and IL-6 inhibitors), and tsDMARDs should be temporarily delayed or withheld, and IL-1 and IL-6 inhibitors may be continued, if necessary, to control underlying disease.

For the Clinical Guidance for Pediatric Patients with Multisystem Inflammatory Syndrome in Children (MIS-C) Associated with SARS-CoV-2 and Hyperinflammation in COVID-19, the guidance offers direction on diagnostic evaluation of MIS-C, compares and contrasts MIS-C and Kawasaki Disease, and provides general recommendations for cardiac management, immunotherapy treatment, and anti-blood clotting therapies in MIS-C. Recommendations include, but are not limited to, the following:

  • MIS-C and Kawasaki Disease unrelated to COVID-19 infections may share overlapping clinical features, including conjunctival injection, oropharyngeal findings (red and/or cracked lips, strawberry tongue), rash, swollen and/or erythematous hands and feet, and cervical lymphadenopathy.
  • For cardiac management, EKGs should be performed at a minimum of every 48 hours in MIS-C patients who are hospitalized as well as during follow-up visits.
  • For anti-blood clotting therapy, the guidance recommends treatments of daily, low dose aspirin, of no more than 81 mg/day, be used in patients with MIS-C and Kawasaki Disease-like features and/or those with a high platelet count (≥450,000/𝜇L). This treatment should be continued until normalization of platelet count and confirmed normal coronary arteries at ≥4 weeks after diagnosis. Treatment with aspirin should be avoided in patients with a platelet count of ≤80,000/𝜇L.
  • Children with severe respiratory symptoms due to COVID-19 with any of the following should be considered for immunotherapy: acute respiratory distress syndrome, shock/cardiac dysfunction, elevated lactate dehydrogenase enzyme, D-dimer, IL-6, IL-2R, and/or ferritin, and depressed lymphocyte count, albumin, and/or platelet count. Glucocorticoids may be considered for use as immunomodulatory therapy in patients with COVID-19 and hyperinflammation (as outlined in the previous statement).

The full list of guidance statements can be found on the ACR website at https://www.rheumatology.org/announcements.

What is Public Health?

Posted on by Grayson

With the current pandemic, we’ve seen a lot about Public Health departments or professionals. From local news to national briefings, these individuals often share warnings and other information. But, what is Public Health?

Well, it’s a little complicated to explain.

Definitions of Public Health

The short version? Public health is the study of preventing disease and improving life for the general public.

One of the leaders in public health, Charles-Edward A. Winslow, described it as:

The science and the art of preventing disease, prolonging life, and promoting physical health and efficiency through organized community efforts for the sanitation of the environment, the control of community infections, the education of the individuals in principles of personal hygiene, the organization of medical and nursing services for the early diagnosis and preventive treatment of disease, and the development of the social machinery which will ensure to every individual in the community a standard of living adequate for the maintenance of health. (Schneider, Mary-Jane, 2006. Introduction to Public Health. pg 5)

This is a pretty confusing definition in my opinion. But, it also encompasses much of what those in this field do. Part of why it’s difficult to nail down is that this field is huge. It includes epidemiologists (those who study determinants of health and diseases), public policy personnel, and reproductive/sexual health educators. We often see medical professionals involved, too, such as nurses, doctors, and therapists.

The world of medicine is often focused on how to diagnose and treat conditions. In contrast, public health is focused on what makes people more susceptible, countering anti-vaccination misinformation, educating the public, and tracing infections. It takes an interdisciplinary team to handle the issues we find. That’s especially true in a pandemic! This includes the distribution of tests, recommendations for how to keep us safe, and tracing who infected individuals may have had contact with.

What does this look like in action?

One great illustration of what this field looks like is the Centers for Disease Control and Prevention, AKA the CDC. The main goal of the CDC is to protect the general public. They do this with a staff full of those who study diseases and outbreaks, health promotion, preventing injuries, and tracking chronic disease statistics. The CDC also talks a lot about emergency preparedness, something integral to the public’s wellbeing.

Another great example is your state’s Department of Health Services. Public health measures often live here and maybe their own department or division under the DHS umbrella. DHS may cover the following aspects of public health:

  • Certifications for caregivers
  • Alcohol licenses
  • Healthcare coverage information (particularly Medicaid & Medicare)
  • Long-term care information
  • Mental health resources
  • Climate change
  • Specific health challenges for marginalized communities (e.g., Black and Brown folx, migrants, refugees, LGBTQ+)
  • Nutrition and food assistance
  • Vaccination rates
  • Demographic and population information
  • Chronic disease statistics, interventions, and prevention

They also work on grants from places like the CDC to see how to make positive changes in communities, especially around chronic diseases.

Local universities will also often be involved in these efforts, especially in areas with world-renowned higher education facilities. Departments there involved might include the medical school, school of nursing, epidemiology, oncology, population health, and more.

Cool, right?

I’m a nerd, so, of course, I think it’s cool. I also just started officially working in public health!

I get to help improve communications for the chronic disease prevention team. They work a lot on efforts related to stroke, heart disease, type 2 diabetes, and oral health. I’m really excited!

So, do you have questions about Public Health?

Pandemic Birthday

Posted on by Grayson

Back in 2019, my partner and I talked about how odd birthdays are after you hit 30. Growing older as a kid and young adult, each age seems to bring new milestones. Turning 15 means you could get your driver’s permit, at 16 a license, and at 21 you can drink. I was excited about my 25th since I could start renting a car when I travel. Hell, even my 26th was exciting because it meant my arthritis was turning 21 in November. Turning 32 though? That’s not really a celebratory thing.

The biggest reason I was excited about this birthday was that I was scheduled to play in a hockey tournament this weekend. I was going to be busy and tired, but having a blast and being around my people. I honestly was a little worried about having time for self-care during all of this.

There were other reasons to be concerned, too, though. This was also the first birthday I was going to have had after getting divorced, moving, and losing my guinea pigs to old age. I started testosterone in January. Plus, I’m in the middle of a job change, too, so a lot of things are different for me this year.

Needless to say, I knew my birthday this year was going to feel weird. I couldn’t have any idea that a pandemic would be added to the mix.

I miss hockey and my friends. I miss the physicality of playing sports (Who have I become?). I miss going places, picking up groceries, and even running errands or going to the doctor. I miss seeing other people, from saying hi to neighbors to hugging my friends. More than anything, though, I miss not being afraid… well, as afraid as I am now. Knowing that I am , there are so many precautions I have to take just to grab the mail.

Granted, I also know I’m not taking quite as many precautions as some people have to.

I know that I’m privileged and lucky to be relatively safe, despite both me and my partner having a higher risk of catching Covid-19 and dealing with morbidity or mortality from it. The weight of the pandemic hitting and hurting people close to me is very real. I’ve got several friends now who have either tested positive and recovered or are mid-recovery. I know others whose relatives are ill and doing poorly. Like with Ian and I, there are other people I know who feel they had this but either were unable to get tests or whose tests came back negative, too. It’s a scary time, especially for anyone who is disabled, transgender, poor, or a person of color since each of these communities is being hit even harder.

So, today, instead of doing some big sort of celebration, I’m going to spend time talking with the people who are most important in my life. I baked a chocolate cake and I’ll make some frosting for it later. I’ll probably make something super tasty for dinner.

Mostly, I’m going to meditate on what more I can do to be part of the solution — something I hope that we can all try to focus on during this time.

COVID-19 Update: ACR Releases Clinical Guidance for Managing Patients with Rheumatic Disease

Posted on by Grayson

The following is information just released from the American College of Rheumatology:

ACR’s COVID-19 Clinical Guidance Task Force has released new clinical guidance for the care of patients with rheumatic diseases during the COVID-19 pandemic. The recommendations address various treatment options and provide general guidance, as well as direction for when to start, stop, or reduce medications. All recommendations are based on current knowledge and will be revised as circumstances and evidence evolve.

Guidance statements include, but are not limited to, the following:

  • Patients with rheumatic disease appear to be at risk for poor outcomes from SARS-CoV-2 (the virus that causes COVID-19) primarily because of general risk factors such as age and comorbidity.
  • Patients with rheumatic disease should follow all general COVID-19 preventive measures, but in addition, rheumatology patients and providers may discuss ways to reduce the number of healthcare encounters and potential exposure to SARS-CoV-2, (e.g., monitoring blood work less frequently, using telehealth, and increasing the time between doses of intravenous medications).
  • For ongoing treatment of stable patients with no SARS-CoV-2 exposure or infection:
    • Hydroxychloroquine or chloroquine, sulfasalazine, methotrexate, leflunomide, immunosuppressants (e.g., tacrolimus, cyclosporine, mycophenolate mofetil, azathioprine), biologics, Janus kinase (JAK) inhibitors and non-steroidal anti-inflammatory drugs (NSAIDs) (e.g., ibuprofen, naproxen) may be continued.
    • Denosumab, an injectable medication used for osteoporosis, may still be given, but the time between doses may be extended to as long as 8 months, to minimize healthcare encounters and if necessary due to limited access to infusions.
  • In patients with stable disease who have been exposed to SARS-CoV-2 (without known infection):
    • Hydroxychloroquine, sulfasalazine and NSAIDs may be continued, but immunosuppressants, non-IL-6 biologics, and JAK inhibitors should be stopped temporarily, pending a negative test result for SARS-CoV-2 or after 2 weeks without COVID-19 infection symptoms. IL-6 inhibitors may also be continued in this situation, in select circumstances.
  • In rheumatic disease patients with a confirmed SARS-CoV-2 infection, anti-malarial therapies (hydroxychloroquine, chloroquine) may be continued, but sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics, and JAK inhibitors should be stopped temporarily. In select circumstances, IL-6 inhibitors may be continued.

The full list of guidance statements can be found here https://www.rheumatology.org/Announcements#ClinicalGuidance

Face Mask Tips for Beginners

Posted on by Grayson

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

Posted on by Grayson

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?

Posted on by Grayson

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

Posted on by Grayson

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!