The CDC Just Released the First Comprehensive Arthritis Data Report

Posted on by Grayson

The following just popped into my email and I wanted to make sure to share it here:

The CDC released the first comprehensive report of state-level estimates about adults with arthritis today, titled—Geographic Variations in Arthritis Prevalence, Health-Related Characteristics, and Management — United States, 2015.

This Morbidity and Mortality Weekly Report Surveillance Summary shows the differences in the impact of arthritis at the state level.

The new arthritis report estimates the number and percentage of  adults with:

  • Arthritis in each state and Washington, DC.
  • Arthritis-attributable activity limitations.
  • Arthritis-attributable severe joint pain.
  • Arthritis and one or more other diseases, such as obesity, coronary heart disease, and diabetes.
  • Arthritis who are physically inactive.
  • Arthritis who were counseled by their health care provider to be physically active or to lose weight (13 states).
  • Arthritis who participated in self-management education workshops (13 states).
  • Arthritis who walk for exercise.

These estimates will enable CDC and other public health partners to move forward and better target the dissemination of evidenced-based interventions that can decrease the impact of arthritis, including easing arthritis pain. The data presented in this Surveillance Summary was collected as part of CDC’s Behavioral Risk Factor Surveillance System (BRFSS).

Interested in snagging CDC updates via email? Click here.

Nine Physician Specialty Groups Caution HHS Against Proposed Drug Pricing Changes

Posted on by Grayson

The following is a press release from the American College of Rheumatology sent out today.

Washington, D.C. –   Nine of the nation’s leading physician groups – including the American College of Rheumatology, American Academy of Neurology, American Academy of Opthalmology, and American Urological Association – joined together this week to urge the Trump Administration to reconsider some of the policy changes suggested in recent drug pricing proposals that would have negative effects on patient care.

“While are we are supportive of some concepts recently presented, we do have serious concerns regarding other policy suggestions,” stated the groups. “We believe HHS should make policy proposals designed to reflect the needs of complex care patients, reduce administrative burdens, and increase access to care.”

In a letter sent to U.S. Department of Health and Human Services Secretary Alex Azar, the groups cautioned that the Administration’s proposal to consolidate certain physician-administered drugs covered under Medicare Part B into the Part D program while reducing physician reimbursements for new drugs below the current payment rates would create access issues and force patients to seek treatment in higher-cost sites of care.

Medicare Part B and D are distinctly different programs with differing formulary structures and cost sharing that would be difficult to consolidate without significantly increasing out-of-pocket costs for patients – particularly those who have no other option but to rely on biologics. And because Medicare Part D does not allow for supplemental coverage, patients would be on the hook for larger portions of these expensive biologic therapies.

The groups also warned that changing Medicare Part D formulary standards to require a minimum of only one drug per class rather than the current two could limit patient’s access to the medical therapies judged to be the most effective choice by their physician.

Additional concerns centered on how the Administration’s proposal to reduce physician reimbursements for in-office treatment from the current ASP +6%  (which is actually 4.3% due to sequestration) to Average Sales Price (ASP) +3%  would be damaging to patient access. By reducing physician reimbursements below the cost of obtaining and providing these complex therapies, many practices – especially small and rural practices that are unable to negotiate bulk discounts from manufacturers – may be forced to stop administering biologic therapies to Medicare patients altogether, the specialty groups warn. This would drive patients into more expensive and less convenient settings to receive needed therapies – if such alternatives even exist.

In their letter, the groups are supportive of policies that would lower drug prices while increasing access to vital medications, including:

  • Requiring Medicare Part D plans to apply a substantial portion of rebates at the point of sale;
  • Establishing a beneficiary out-of-pocket maximum in the Medicare Part D catastrophic phase providing beneficiaries with better protection against high drug costs;
  • Decreasing the concentration in the pharmacy benefit manager (PBM) market and other segments of the supply chain; and
  • Providing guidance from CMS on how drug-related value-based contracts and price reporting would affect other price regulations.

“Our organizations are dedicated to ensuring that physicians have the resources they need to provide patients with high-quality care,” the letter concludes. “We look forward to being a resource to you and we welcome the opportunity to meet with HHS to discuss our concerns and positions in more detail.”

The New Generation of Mobility Devices

Posted on by Grayson

I’m really excited to share this infographic from Easy Pay Mobility today. I love that they’re highlighting Toyota who is a major sponsor of the Paralympic games. The following is text and an infographic from Easy Pay Mobility. Please note they’re in the UK, so numbers are based on that area of the world.

With 11.9million disabled people in the UK and the market numbers going through the roof, with a projected increase from £1.3 Billion in 2016 to £1.7 Billion by 2021, the mobility sector is not a small one, and technology companies, including some of the world’s biggest vehicle manufacturers, are starting to realise. As a result, more and more mobility concepts and starting to arise and in this piece, we’ll go through each of them and take a look at some of the latest technology that’s coming with them.

This piece will also look at the stats surrounding the mobility sector, who is actually using them and also bring to light how more needs to be done to keep mobility scooter users safe.

Future Of Mobility Scooters
Future Of Mobility Scooters by Easy Pay Mobility

black background with dark purple border; white text under illustrations of pills: "The Need for Big Pharma Reform: How the Industry Can Improve in the Wake of the Opioid Crisis" and "Not Standing Still's Disease"

The Need for Big Pharma Reform: How the Industry Can Improve in the Wake of the Opioid Crisis

Posted on by Grayson

Healthcare reform continues to be a topic of discussion throughout the country. Multiple attacks on health benefits, Medicaid & Medicare, and other health-related entities continue to pop up seemingly every day. Bills to help ease the burden on patients as well as keep companies more accountable fail to go anywhere as party lines remain divided. With the opioid crisis going on, one thing that hasn’t gotten enough press is one health-focused initiative has united over 450 municipalities across the country.

Cities, states, and counties have filed lawsuits against 23 drug companies and distributors for the roles they’ve played in the ongoing opioid epidemic. The crisis claims over 100 lives per day due to opioid overdoses, and it shows no signs of slowing down. In 2015, there were enough opioid painkillers prescribed to treat every American continuously for three weeks.

These lawsuits will likely be the court cases to watch this year, and many suits specifically call out OxyContin maker Purdue Pharma. Ohio’s lawsuit, for example, blames the company for trivializing “the risks of opioids while overstating the benefits of them for chronic pain.” Johnson & Johnson, Teva Pharmaceuticals and distributors including CVS and Walgreens have also been assigned blame.

As we watch the pharmaceutical industry come under fire for its involvement, it’s hard not to wonder how other Big Pharma practices could potentially lead to more crises down the road. As states’ efforts to combat the epidemic get underway, let us consider the areas of the industry that prioritize profits over patients in the hopes of encouraging future reforms.

First and foremost, it’s time to bring clinical trial issues into the limelight. Drug companies can misrepresent their drug’s clinical trial evidence in order to see it brought to market. Although this may be seen as a win for innovation, it often puts patients at risk.

Take Purdue Pharma’s clinical trial for the powerful opioid OxyContin. Evidence from the trials contradicted the pharmaceutical giant’s marketing claims that the drug could provide 12 hours of relief. Patients in the studies were actually unable to manage their pain for that length of time under the recommended dosage, and doctors filed complaints after the drug’s debut in 1996.

But, Purdue was dependent on this 12-hour relief because it allowed the company to have a competitive advantage over other options on the market. The manufacturer continued to stand by its marketing claims, blaming any wear-off of relief on too low of a dosage. The CDC warns that higher doses, which Purdue encouraged, could lead to increased risks when taking the drug, such as dependency and addiction. And so the epidemic began.

This misrepresentation of a drug’s clinical trial data isn’t just tied to the opioid crisis. It extends into common and often life-saving medications as well. In the case of newer anticoagulant Xarelto, manufacturers Johnson & Johnson and Bayer withheld data from its industry-funded clinical trial that would have implicated the blood thinner as less safe than more traditional options.

In the face of misleading evidence, the medication was approved in 2011 without an antidote to reverse its blood-thinning effects. The veil of supposed patient safety was lifted when thousands of individuals suffered internal bleeding complications and even death after being prescribed Xarelto. Similar to Purdue being blamed for its involvement in the opioid crisis, Johnson & Johnson and Bayer are embroiled in lawsuits because of Xarelto’s dangerous side effects.

Perhaps the most disconcerting is the amount of money Big Pharma pumps into its lobbying efforts. The pharmaceutical/health industry saw a 12.4% increase in its lobbying spend from 2016 to 2017, and the industry as a whole spends the most out of any other business sector. Although lobbying is a legal activity meant to serve as a means for citizens to have their concerns addressed to members of Congress, these high monetary donations can often sway lawmakers and influence policies to allow drug companies to stay focused on their profit margins.

Again, the opioid crisis serves as the backdrop for why Big Pharma should make reforms. Multiple states have attempted to pass laws that would limit opioid prescribing habits, but these efforts have been met with severe pushback from drug companies. The Pain Care Forum, funded by the industry, spent upwards of $740 million over the past decade to lobby against these laws aimed at halting the crisis. It’s evident that Big Pharma’s deep pockets and profit-focused mentality influence more than just the medications we’re being offered. It can have a direct impact on the very extent of our healthcare.

It will take many efforts on multiple fronts to bring about an end to the opioid epidemic, but thankfully these efforts are now underway. For one, the overdose antidote naloxone has become more widely available and discussions of pain management approaches, especially for those who suffer from chronic pain, are finally taking place. But, the greatest approach we can and should consider is reforming the very industry that is supposed to be an advocate for our health.

Only then will we stand a chance of making real progress in the name of healthcare.

Morgan Statt is a health & safety investigator who spends her time writing on trending news, consumer health, and public safety topics. When she isn’t researching, she can be found crafting Spotify playlists for every life situation. Follow her on Twitter @morganstatt. 

black background with white and purple stripes and white text "Nortriptyline Update" and "not standing still's disease"

Nortriptyline & Health Update

Posted on by Grayson

I’ve been on nortriptyline for a while now, but it’s been a minute since I last updated everyone.

At my most recent neurology appointment, we added magnesium and B2 to my meds. Both pills are huge, so that’s been a fun change.

photo of a left hand holding a variety of pills/tablets/capsules with a teal planner in the background with white text: "Everything is possible"

The yellow pill above is the B2 and the black is the magnesium.

The good news is the combination of 20 mg of nortriptyline and the vitamins has incredibly decreased the number of migraines I’ve had. I’ve even been able to go to areas with bright flashing lights and been okay for a while.

Unfortunately, it hasn’t actually helped my neuroWTF at all. I’ve had that nearly every single day for two weeks now.

A red jug in the fridge door next to wine, Gatorade, and other substances

A few weeks ago, though, I got a couple of allergy tests I needed. At the appointment, I also brought up Mast Cell Activation Syndrome (MCAS). As I went through many of my symptoms, the doctor – familiar with MCAS – thought there was certainly a chance it might explain my symptoms. Two of the urine-based tests are still going through testing, so I’ll hopefully know more by the end of the week. The tricky thing is that I may have this without the urine showing it. The good news is that we can still treat it as a likely diagnosis and see if upping my Zyrtec helps.

While I write this, I’m laying down because of these funky symptoms. They’ve gotten worse lately. Right now I’m numb (lack of sensation with some pins and needles) from the back of my head to my thighs. It’s an interesting thing to go through… and scary. It’s been a year now of pushing to see what this might be, and I’m nervous about how much longer it’ll take to find the right answer – and a potential treatment for this.

pink background with teal heartbeat line above black text: "ACR Awarded Grant to Focus on Projects That Curb Health Disparities" and "Not Standing Still's Disease"

ACR Awarded Grant to Focus on Projects That Curb Health Disparities

Posted on by Grayson

The following is a press release I received this week from ACR:

ATLANTA – The American College of Rheumatology’s (ACR) new program, Uniting Collaborators for Innovation (UCOIN), was named one of five recipients of the American Society of Association Executives Foundation Innovation Grants Program, which awards $10,000 to programs that demonstrate engagement in innovation efforts within the association community. UCOIN is being developed by the ACR’s Collaborative Initiatives department as a platform for member-led projects that reduce health disparities.

The program’s initial phase will focus on creating initiatives that diminish racial and ethnic disparities for patients with rheumatic diseases. Research indicates that certain rheumatic conditions – including lupus and scleroderma – disproportionately affect minority populations in the United States, and UCOIN sees an opportunity for ACR and ARHP members to collectively problem solve. One example of a potential project is addressing the need for increased participation of ethnically diverse participants in clinical trials.

“We know how prevalent rheumatic diseases are in people of color, and we also know that Americans are more racially and ethnically diverse than ever,” said Sheryl McCalla, UCOIN Project Director and ACR Senior Director, Collaborative Initiatives. “Societal consequences of inequities will continue to grow, so we at the ACR want to ensure that we’re doing our part to eliminate these by creating a broad platform for innovation.”

Program organizers cite barriers to health care access and a lack of representation in clinical studies as two problems that can result in negative disease outcomes for minority populations with rheumatic conditions. Through UCOIN, ACR and ARHP members will have an opportunity to identify such areas of need and implement strategies to eliminate critical gaps.

“Addressing health disparities is important for the sustainability of our profession and for the health of the patients we serve,” said Dr. Sam Lim, MD, UCOIN Working Group Chair and Professor of Medicine at Emory University. “In order to serve all patients to the best of our ability, we must figure out why outcomes for some are dramatically different than outcomes for others, especially when we know that some of those disparate outcomes can be prevented.”

UCOIN is currently in the planning stages and will be officially unveiled in October 2018 at the ACR/ARHP Annual Meeting in Chicago. ACR and ARHP members are invited to contribute ideas and suggestions as the program develops. Those interested in participating in UCOIN should contact Sheryl McCalla at smccalla@rheumatology.org.

About the American College of Rheumatology

The American College of Rheumatology is an international medical society representing over 9,400 rheumatologists and rheumatology health professionals with a mission to empower rheumatology professionals to excel in their specialty. In doing so, the ACR offers education, research, advocacy and practice management support to help its members continue their innovative work and provide quality patient care. Rheumatologists are experts in the diagnosis, management and treatment of more than 100 different types of arthritis and rheumatic diseases. For more information, visit www.rheumatology.org.

The A-Z of Illness

Posted on by Grayson
There are many things we learn over the course of an illness that would’ve been better known towards the start. Funny enough, though, a lot of these things can fit in the alphabet. What better way to share things we wish we knew at the onset of illness?
 
A: Am I sick?
Sometimes it’s easy to doubt how ill we are. We gaslight ourselves because others doubt our illnesses. We might have a few good days and think we’re better. But, yes, we are sick even when we’re doing well. Even if I can’t see it or my friends and family can’t see it, I am still sick. Just because I look good or show up not naked to things doesn’t mean it doesn’t hurt.

 

B: Bills, Bills, Bills
Get ready to watch any savings you have leak slowly out of your account to cover medical bills, prescription co-pays, and more. Plus, good luck working to try to pay those off when your body won’t give you a break and you can’t hold down a real job!

 

C: Curse Words
They help relieve pain. No, really. Use the power of the curses and swears!

 

D: Disclosure
Every single time we meet someone new, whether romantically or platonically, we have to share about our illnesses all over again. It sucks – not just because of how difficult it is to be that emotionally vulnerable but also because we get to watch these potential relationships fade away as the impacts of our illnesses become more readily apparent.

 

E: Exhaustion
The level of tiredness you’ll face will be way past just tired and, at times, even past fatigue.

 

F: Food
Our relationship with food gets so complicated. You might be hungry all the time for a week and then lose your appetite for six months.

 

Guessing game: 
One of the most frustrating things about being sick is not being able to tell what you’ll be able to do at any given time. Having to RSVP essentially means playing a guessing game based on the season, other things you need to do around that time, and random crap.

 

Hot flashes: 
Chances are, you’ll deal with this (and/or cold flashes) as a part of your health issues. Keep a bottle of lotion in the fridge for those hot flashes. It’s a lifesaver!

 

I: Intolerances and allergies
Many people with health issues have or develop intolerances and allergies to various foods or other things. Conditions like these are called comorbidities and are super common.

 

J: Juggling
One of the most difficult things about illness is handling a million and one things at once. Schedules take a huge hit, necessitating a lot of juggling. A pile of doctor appointments on top of picking up medications and other supplies, getting lab work, etc. – it’s a lot, especially if you’re working.

 

K: KT Tape, Braces, and Wraps
One of the most important things to learn is how to ease pain and support your joints. Ace bandages don’t do the trick when they keep unraveling! Meister kickboxing/MMA wraps work a lot better. KT Tape can be super helpful, especially for supporting knees.

 

L: Lab Work
Depending on your health issues and medications, you may need lab work anywhere from once a week to a few times a year.

 

M: MRIs 
Chances are you’ll wind up in an MRI machine at some point. It’s very loud. On top of the noise, it’s not easy to lay a certain way – very still – for sometimes hours on end. Get your meditation or nap on.

 

N: No
Having to say no to a lot of things you’d rather do is commonplace. Eventually, you’ll have to start choosing what is more important to you, prioritizing time with friends and family in new ways.

 

O: Oh my god, why?
Everyone goes through periods where they get upset. We wonder why we’re ill when others aren’t. It’s okay to feel that way.

 

P: Pills
Get used to sounding like a maraca when you walk! And taking pill after pill. And figuring out what to drink with all those pills.

 

Q: Quitting
It’s okay to quit. It’s okay to feel lost. Quitting on things one day doesn’t mean the fight ends – it just means you need a break. And that’s okay.

 

R: Relationships
The toll that health issues take on relationships is often underestimated, whether that’s

 

S: Sex Life
As I talk about over on Chronic Sex, illnesses have wide-ranging effects and can especially affect our sex lives.

 

T: Thinking is hard
Brain fog is an asshole. It can and will rob you of your ability to think and communicate clearly with others. It’s a part of why I do almost all of my communicating via writing – it’s the best way for me to be able to fight the fog.

 

U: Unpredictable
Chances are, your health will be incredibly unpredictable. Swelling, pain, and other illness factors do not work on a schedule.

 

V: Vomit
Yup. You’re gonna vomit – maybe a little or maybe a lot.

 

W: Well-meaning friends
People make well-meaning comments that erase the feels we have. The thing is that we know you mean well, which is why we don’t get hella angry, but erasing our feels or experiences is super harmful.

 

X: Xerox (as in making copies)
You’re gonna be making and copying and printing out a million and one things related to your condition(s)… including the incredibly long medical records we’re likely to have.

 

Y: Youth
Guess what? People get chronically ill and disabled in their youth. These things can strike at any age. Get over it.

 

Z: Zebra
The zebra is an adorable and majestic animal. It’s also silly and cute. More importantly for illness stuff, though, the zebra is a rare disease mascot.

 

What would you add to the list?
yellow background with orange-ish text: "Tough Decisions Ahead" and white text: "Not Standing Still's Disease"

Tough Decisions Ahead

Posted on by Grayson

The last few weeks have been incredibly difficult.

On the last half of my prednisone burst, I started experiencing worsened arthritis symptoms. Once the burst was over, I was exhausted AF.

I saw my rheumatologist two weeks ago for a scheduled follow-up, and it was good timing. I’m clearly still flaring. We did a triamcinolone injection that really didn’t help. This week she wants to try a second shot to see if that helps.

It’s hard. I have so many things to work on, things to do. I’ve had to slow things down a lot. Standing in place for more than five minutes is horribly taxing. My knees have been swollen every single day with hand swelling and pain popping in most days of the week, too.

The hand pain is frustrating because things like using my cane that would be helpful just aren’t feasible. My canes both hurt my hands far too much to be for daily use when I’m dealing with such hand pain. It’s probably time to start considering more heavy duty assistive devices, but I’m not sure what would work best for me, either.

A wheelchair seems like a good idea until I recall how much pushing my hands would have to do – likewise with a rollator. With conferences coming up, though, I need to at least consider making a decision.

I don’t like these tough decisions. I will say, though, that I’m far less afraid of using these things than I would’ve been in the past. Having friends who rely on these things is helpful, and talking together is even more useful. I’ve been able to confront the internalized ableism I’ve held since childhood about assistive devices.

A Long History of The Mighty Refusing to Listen to Neurodivergent Folx

Posted on by Grayson
This post is a collection of three posts that were originally on my Medium page. I’m relisting them here. Part 1 is from March 29, 2017. Part 2 is from March 30, 2017. Part 3 is from January 12, 2018. Parts 1 and 2 are still up on Medium. 

 

Part 1: An Open Letter to The Mighty on Their Continued Support of The Hate Group Autism Speaks

I recently saw that The Mighty is partnering with Autism Speaks (AS). We need to have a conversation about this and I sincerely hope that you pass it along to people further up as well.

 

I realize that The Mighty gets a lot of traffic through parents of autistic children. However, I also know that the chronic illness world brings in a lot of traffic as well. I share at least half a dozen articles from The Mighty on my various social media accounts which I know generates a good amount of traffic as well. I have been happy to write occasionally while sharing when I can.

 

However, as someone who *is* neurodivergent in addition to being a writer and having written for The Mighty, this partnering with AS is concerning and, frankly, disgusting.

 

Autistic children are referred to as burdens constantly and consistently. The focus with AS is ‘fixing’ the child and relieving the burden of being a parent with a disabled child instead of on helping the child grow. True, they may not be focused on a ‘cure’ anymore, but they aren’t exactly welcoming their children with open arms as parents should.

 

AS also refuses to do much of anything to help with autistic young adults and adults. How much can they be assisting people living with autism when they don’t even help patients themselves past the time when we receive the most support?

 

I’ve included links below by people who are *actually* autistic, many parents, and other organizations that discuss the dangers of AS. Some of these articles are slightly outdated, sure, but there are plenty that address the more recent developments as well — sharing how this doesn’t change much at all. (Links sent can be found in this masterpost of issues with Autism $peaks.)

 

I hope that you will pass this along. As a writer, I have many pieces I’d love to continue contributing to The Mighty. However, I will no longer be doing so when the site partners with an organization that erases the humanity of so many people. I am not the only writer involved with The Mighty that feels this way.

 

Know that a continued relationship with AS will continue to damage The Mighty’s reputation and relationships with influential bloggers and writers like myself — writers that have stuck with The Mighty despite an inability to pay us. We have stuck by the site through a few PR nightmares that you’ve been able to bounce back from. However, we cannot and won’t continue to support y’all when you partner with organizations like AS that preach eugenics ideas while working with Neo-Nazi groups.

 

It is a PR nightmare for those of us who have our own reputations at stake and who would not be able to bounce back like The Mighty has and, from an ethical standpoint, it is wrong to continue support of AS.

 

The Mighty articles I currently have scheduled to post (on social media) will go up. Any others will not be featured on my various social media accounts until/unless The Mighty ceases its support of this organization. I would also ask that you remove my articles from the site if there will be a continued partnership with AS.

 

Thank you for your time,

 

Kirsten

 

Part 2: The Response

Yesterday, I wrote a letter to The Mighty about their support of the hate group Autism Speaks. This was their response.

Hi Kirsten,

Thank you so much for reaching out about your concerns. Unfortunately, there is some misinformation circulating regarding the nature of our relationship with Autism Speaks.
The Mighty has a non-profit partnership program which takes a variety of forms. The purpose of the partner program (which does not involve money) is to bring free resources to people through stories on our site. We partner with hundreds of organizations, including but not limited to the following autism-related organizations: National Autism Association, Sesame Street, The Art of Autism, ACT! Today, Geek Club Books, Asperger Experts, AutismTalk, The Color of Autism, Global Autism Project, Autism Speaks, and STAR Institute for SPD.

We do understand the concerns about Autism Speaks. We added them to our partnership program only after they announced the change to their mission in the fall of last year. As a company, we believe autistic people and their families need acceptance and understanding, and we do not support curing or eradicating autism.

We do believe a crucial element of our partnership program is that our site and community helps the partners’ audiences. By us sharing more content by autistic writers and autism community advocates, it can help educate and change perspectives for the better both within and beyond our Mighty community. We are now one of the largest platforms for autistic writers, and sharing our writers’ stories with Autism Speaks can help their readers who may still be struggling to understand and accept autism.
All of our partners have a “partner box” (we sometimes refer to it as a “module”), which can appear at the bottom of stories and offers links and resources on the partner’s website. We generally add one of these boxes to stories based on the content, but writers who are associated with a partner as employees, volunteers, or supporters can choose to have that box displayed below their stories. Autism Speaks’ partner box is only supposed to be used when a contributor has expressed support of the organization — we do have a number of autistic writers who are affiliated with them. However, an oversight led to the box being added to an autistic writer who does not want to be affiliated with Autism Speaks. When this individual contacted us, we immediately removed the partner box and apologized. We want to assure you we will work harder to make sure contributors are always comfortable with the partner organizations in their stories.

We are open to feedback regarding our partnership program and would especially like to add additional partners in the autism space that you, our writers and readers, support. So if you are part of an organization or can recommend one, please let us know!
Our health and disability community is very diverse, and opinions differ on important issues. We do evaluate our partnerships periodically, and we never compromise our editorial standards for a partner. We actively work to fight ableism and content that disparages the disability community. We are committed to sharing the voices of autistic writers and the diverse voices of the larger disability and health community.

We hope this helps to alleviate your concerns.
— The Mighty Staff

Guess what? It doesn’t.

 

They have indeed compromised standards to include Autism Speaks as a partner.

 

Autism Speaks has supported TORTURE as a means to a CURE for Autism. They consistently support anti-vax ideals. And they’re supported by NEO-FUCKING-NAZIS.

 

My response:

 

I appreciate your response. My concern was not that there was any financial benefit, but that The Mighty is legitimizing AS as an organization — an organization with a history of legitimizing literal torture, speaking over people who are actually autistic, and promising things for publicity’s sake without any intent of following through.

 

You say sharing these stories with AS may help them understand. Unfortunately, autistic people and organizations have been doing this since AS started. AS does not care and does not understand. They are using The Mighty to legitimize their place as a ‘charity’ and to try to change how people see them. Until they have actually made changes, this is hurting you and your readers more than it’s helping them.

 

Not much has changed within AS since the changes you’ve spoken of. Regardless, their history of supporting torture of autistic people as a means to finding a cure is barbaric and I’m surprised that The Mighty has not taken these things into account.

 

Again, I will point you to various articles and ask that you actually read them this time as it’s clear you did not from your response. I would hope you’d have more respect for your supporters and writers than to simply send back a form letter and forgo reading the links I included. I put this masterpost of pieces against AS together last night and will be pulling articles from it.

 

Autistic people across the internet are up in arms over this partnership. Yes, as I already did before your response, they understand this isn’t financial, etc. Marginalized people — in this case, autistic and neurodivergent people — are speaking up and calling for a change here. If your goal is truly to provide an intersectional and safe place, you’ll start to listen. Otherwise, you’re losing readers and supporters by the minute.

 

Want to support Actually Autistic organizations? Here are a bunch that aren’t ableist in nature and *actually* include autistic people on their boards, etc (unlike AS):

 

  • The Autistic Self Advocacy Network
  • The Autism National Committee
  • Autism Network International
  • Autism Women’s Network
  • TASH
  • ADAPT
  • American Association of People with Disabilities
  • APSE
  • National Council on Independent Living
  • National Youth Leadership Network
  • Academic Autism Spectrum Partnership in Research and Education (AASPIRE)
  • HSC Foundation
  • Self Advocates Becoming Empowered

 

I urge you to check your social media mentions because, as this gets out more and more, people are extremely upset and swearing y’all off as a resource. This is going to lead to a lack of writers because of people like myself leaving, too. You’re associating yourselves — and, by association, your writers — with an ableist hate group created for parents (not autistics) that has the support of eugenicists and white supremacists. I hope that you can see why this is a bad look.

 

Kirsten

 

I never received a response.

 

Part 3: The Facebook-ening

 
The editor involved in this post filed a DMCA and has been harassing me across the internet. Due to that, the following has been highly edited as of Feb 15, 2019.

 

A dear friend recently asked on Facebook for an update about The Mighty as someone there wanted to interview them — were they still problematic AF, etc. I commented and pointed out that they still partner with Autism Speaks which has a long history of existing as a hate group. I also shared how TM refused to listen to concerns and “basically pulled ‘free speech’ crap on anyone who said this [partnership with A$] was bad.”

 

Some of you may remember that, last year, I shared an email I wrote to The Mighty on this partnership as well as their response. I asked a number of questions, shared sources, and asked for my articles to be removed from The Mighty… none of which happened. I received no further replies.

 

Said friend was grateful for the information and formally declined to participate with TM. As it turns out, an editor for TM is one of their FB friends.

 

Cue the following interaction.

 

The editor asserted that, since a few autistic authors write for TM under the A$ label, it’s unfair to shirk the organization. They also did not seem to grasp that TM’s relationship with A$ – even supposedly without financial support – legitimizes the existence of A$ and promotes it as a safe organization when it is not.

 

My reply:

 

Despite the outcry of many of us — including those of us who have asked for our articles to be removed from The Mighty in correlation to partnerships with A$ (which has not happened) — there is still a partnership with A$ which is an organization that has openly supported torture for those of us who are neurodivergent. I’m not sure why any disability organization would EVER feel comfortable having any sort of link to them.

The Mighty would still have someone who writes on these topics [sex and disability] if they took concerns that I shared seriously. I’ve asked several times for my articles to be taken down from your site due to this unholy partnership, and I get no reply much less action taken on my requests.

There is outcry among most disabled people about this and yet TM refuses to acknowledge this, save in letters to those of us who complain (whose follow-up emails — like mine — get ignored).

Furthermore, it’s condescending to claim that those of us who are upset and frustrated are spouting misinformation. We know the situation — it’s still horrendous. Why? Any organization that ignores writers’ wishes, blocks them from groups, refuses to pay them despite making money, and downplays these issues isn’t working for *justice* for disabled people. Period.

My friend pointed out that, regardless of other concerns, they deserve to be paid for their time and expertise (and rightfully so). Said friend — who previously had pieces on The Mighty — asked for their articles to be removed as well. The Mighty not only lost one writer (that they didn’t really have), but two — and likely more.

 

The editor claimed that disability activists won’t give TM a chance because of their past actions, that we should be giving them more of a chance because of how they’ve supposedly changed.

 

I shared that there is misinformation out there about any and every site. In my opinion, however, the most concerning stuff is what’s true — and how companies handle that truth. Leaders within disability and chronic illness circles tend to stick together and share interactions and concerns they’ve had. I know we’re not the first two people to ask for our pieces to be removed over this specific issue — and I have a feeling we won’t be the last.

 

Still, there seemed to be an inability to understand how affirming A$ as an organization was a dangerous thing.

 

When I pointed out A$ is still shit, the editor claimed the small changes A$ made – changes that are really in name only – they pulled out some amazing apologetics despite not supporting A$. Again, I was told we’re supposed to give organizations a break when they’ve continually supported harm, torture, and eugenics.

 

I pointed out something that should be obvious:

 

Despite changing their mission statement, they haven’t actually changed at all and continue to promote harmful rhetoric that everyone in the disability community should be afraid of and angry about. I’m not sure why people think not explicitly stating that they want XYZ doesn’t mean they won’t still participate. Trump isn’t a Nazi explicitly and he still acts like one.

PP has problems — but they also acknowledge them and work on them. A$ and TM seem to refuse to hear any dissenting opinions. That’s not how to run a successful organization, but what do I know? I just run my own business, have a side gig with a major EHR company, and work with major organizations.

If y’all checked your emails and actually read dissenting ones, you’d have heard this last April from many of us.

 

This editor stated something akin to the fact that me disapproving of TM’s unwavering support of a hateful eugenicist group is like to throwing a baby out with the bath water.

 

Jesus fucking Christ. What a shitshow.

 

After raising a stink, they finally removed my pieces from their site.

 

I had to continue asserting my boundaries and stating I was done with having this conversation several times.

 

Exhausting.

 

They continued to stalk my social media pages and sites to find new ways to threaten my ability to make a living, too, so that’s fun.

 

What went wrong here?

 

  1. Your organization should be accessible and willing to have a dialogue with writers. You should not be ignoring writers who share concerns about partnerships. A partnership with A$ in this context legitimizes it as an organization rather than a hate group.
  2. Don’t play kumbaya. Disability rights/justice peeps aren’t having it. My existence isn’t up for debate, and neither is my humanity. I shouldn’t have to preach to another disabled person essentially from a pulpit about why this connection with A$ is dangerous.
  3. If you’re FB friends with someone and you’re trying to persuade them to do something — and telling them they should message you to talk more about it — you should be the one messaging them in the first place. You don’t make this a comment on an open post. This is especially true if others commenting have shared their disdain for your organization or company.
  4. Respect boundaries. Period.

 

There is so much wrong with this interaction and these two organizations. Honestly, I’m writing this as comments keep happening, so I haven’t had time to sit with it.

 

I will say this, though.

 

I don’t need to be fixed. Honestly? I don’t want to be. There’s no way I would ever want to be abled — that’s not who I am. I would miss out on the amazing friendships and chosen family that I only have because of being chronically amazing. I would certainly love less pain. I would adore not having some recurring acute things pop up, like frozen shoulder. I want to make headway in my health and fitness. I’d go gaga for sitting up for three hours without going numb and needing to nap. Hell, I’d take being on less fucking medication.

 

Still, I wouldn’t be ‘me’ without what I’ve gone through. I certainly wouldn’t be the same without my light limp, PTSD hypervigilance (which helps as much as it hinders), and more.

 

I do not want a cure. I don’t need to be cured. My kind don’t need to be erased. We need a lot of things, but not erasure:

 

  • accessibility
  • a better medical system
  • a government that doesn’t love eugenics and white cishet abled neurotypical supremacy
  • mental health care
  • mass transit systems that don’t fucking suck
  • a guaranteed national income
  • captions, sign language, and CAR-T
  • empathy *gasp*
  • privacy
  • people to believe us at our word

 

Most of all? We need freedom, respect, and justice. None of these things will be found at The Mighty, Autism Speaks, or other ‘disability’ organizations that refused to listen to disability justice activists.

 

Looking for more about how The Mighty sucks?

 

 

End of Year Health Update

Posted on by Grayson

It’s been a while since I did a health update on here. Things are going… okay? As of last week, I was discharged from pelvic floor therapy. This week, I anticipate being discharged from neck/back PT as well.

Around Thanksgiving, I joined a gym. I’ve been working out 3-6 days a week, depending on how my body is doing. I know that when my body winds up being very numb, it isn’t safe for me to go and do much. Despite being on a prednisone burst, I’ve lost ten pounds in the last few weeks.

I had a follow-up with the neurology physician assistant earlier this month. I left unenthused, to be frank, and frustrated with the lack of care I’m receiving. The PA was more concerned about telling me to do things I already do and medication-shaming me than working with me around the very odd symptoms that reared their ugly head big time this year.
I find it alarming to tell a patient in distress that there are medications that can alleviate their symptoms but they’re on “enough already.”

 

Still, we added in B2 and magnesium which – when I take them both daily versus as needed – have helped with my migraines. This has had no effect on my odd numbness, though, as the PA assumed it would. This tells me that my odd symptoms aren’t related to my migraines (as she assumed) or that these levels aren’t enough to tackle the issue.

 

a variety of pills, capsule, and tablets of a variety of colors in someone's hand

 

It takes me about 20-30 minutes to take my morning meds now. It’s frustrating to have to sit with illness first thing in the morning for so much longer. That said, I know doing so helps me to process this stuff all better from a physical standpoint at least.

 

I’m wondering whether or not my odd symptoms combined with worsening rash could be something related to mast cells like Mast Cell Activation Syndrome (MCAS) more than anything else. I’m playing with the idea of calling for an evaluation. Honestly, I’m avoiding it because I can’t handle another doctor refusing to listen and shaming me for using medications to live a higher-quality life.

 

On the dental front, there are two crowns we have to do. One is on a front tooth and another is on a back molar that really doesn’t function. I’m not sure that it’s worth saving that tooth honestly. The cavities we’ve been playing catch-up with are taken care of now, thankfully.

 

My acupuncturist has been incredibly helpful, getting me to unwind more than I was when I was going to a clinic for this. He’s so much fun, too, and we talk a lot about sex education, impromptu consults, and more. I don’t think I’ve ever left every single appointment with a provider with a hug and renewed peace of mind like this.

 

I was lucky enough to snag three free months of Talkspace back when they were giving free months out for survivors of abuse. I haven’t utilized my therapist very heavily – partially because I always skirt the big things – but it’s been helpful to have. She’s great, only lives a few hours from me, and is incredibly similar to me in the best kinds of ways.

 

Over the last few weeks, we’ve dealt with Jaq having an upper respiratory infection for weeks (which can be fatal quickly for guinea pigs), major depression, apartment issues, increased rash, interpersonal havoc, and more. It’s been a lot to handle on top of everything going on in our country and world.