Recent Advancements in Medicine

Posted on by Grayson

There have been a lot of advancements in medicine, healthcare, and the way we understand our bodies recently. I thought it would be great to take a look at some of those recent breakthroughs.

Last April, a group of researchers found a potential answer for why women experience higher rates of autoimmune diseases – B cells. Well, not just any B cells, but those with transcription factor T-bet. It’s science-heavy, but there was a write-up in Science Daily last May that goes more in-depth. One of the things I find most interesting about this is that T-bet has been shown to be somewhat of a bridge between the innate and adaptive immune systems. That means that, potentially, this could even explain the prevalence of autoinflammatory diseases, too!

A recent study found that being hungry alters how the body perceives – and responds to – pain. This has only been shown in acute pain or what they call longer-term inflammatory pain. That explains how I tend to experience different pain levels based on how much I can eat. In all honesty, I just can’t eat three meals a day. My GI tract doesn’t process things that quickly and I end up in tremendous pain. For me, though, there is a point at which being hungry can trigger my pain levels to increase.

On top of that, chronic pain itself has been found to alter how our immune systems function. This could be giant news on the road to discovering how many chronic health issues can be triggered by a traumatic event. For instance, Morgan Freeman’s fibromyalgia beginning after an intense car accident.

Discrimination has been proven to affect your partners, according to a new study. This was true regardless of the type of discrimination proving what a lot of us already knew – oppression harms everyone touched by it, including partners and loved ones.

Many people dealing with depression and another chronic illness struggle to find effective depression treatment. A new study has found this to be incredibly common. Dr. Madhukar Trivedi suggests that we need to study more about living with comorbid illness and depression in order to figure out better, more effective treatments.

To their point, researchers have been studying how inflammation affects brain cells. Interferon-alpha, or IFN-α, was found to negatively impact the birth of new brain cells while increasing the rate of death of existing cells. Since IFN-α can be used as a treatment for cancer and other illnesses, this study highlights an important issue – and, hopefully, can lead to the development of medications to battle this phenomenon.

Another study recently found that itaconate which is derived from glucose can help shut off macrophages. Since macrophages control a lot of what happens wrongly in autoimmune and autoinflammatory conditions – including potentially being fatal on their own through MAS – this finding could help save lives. This could actually explain why many of us crave sugary things when we’re feeling unwell (and explains much of my life).

Heads up for discussion of child abuse in the below paragraphs

This write-up is, uh, problematic at best. Quotes like this one show why people need sensitivity training around mental health: “People with depression or other mood disorders tend to have trouble distancing themselves from their negative memories. If we can help them remember less or forget those negative memories, then maybe they can reallocate that attention to something more positive in their lives.” That said, I found the results of the study validating – suppressing emotions is linked to a reduction in memory of a traumatic or upsetting event. As someone that still hasn’t processed a lot of things I’ve been through, it was incredibly validating to see that… even if I want to punch the graduate student for giving the quote above. Ironically enough, a study around the same time also found that this covertly happens for survivors of child abuse. They also found that the abuse had a profound effect on the myelin coating nerves, reducing it. This may help explain part of why brains of people living with PTSD and those without show very distinct changes that can be seen by the naked eye.

Featured on Everyday Health

Posted on by Grayson

Everyday Health featured me in their piece, The 10 Best Arthritis Blogs to Keep You (and Your Body) Moving:

If you’re looking for a blogger with some attitude, Kirsten is your woman. The self-proclaimed “chronic illness collector” (as a child she was diagnosed with systemic juvenile arthritis, or Still’s disease) and sex educator covers every health topic imaginable on Not Standing Still’s Disease, from mental health to medical terminology to her “Self-Care Sundays” series — posts themed around “our relationships with ourselves.” She is an advocate for the gender-fluid and trans community, which she discusses at length in her separate blog, Chronic Sex, along with (naturally) sexuality and sex with a chronic illness. While the topics she covers on both blogs aren’t light, she still aims to keep her posts humorous and positive. She even pokes fun at herself for having “collected” sixteen different health diagnoses, like scoliosis and asthma.

Go check it out!

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.