Rheumatology Leaders Meet with HHS Secretary Azar to Discuss Concerns with Step Therapy in Medicare Advantage Plans

The following is a press release that just came through from ACR. The below statement is from David Daikh, MD, PhD, President of the American College of Rheumatology:

“Yesterday, the American College of Rheumatology met with U.S. Department of Health and Human Services Secretary Alex Azar for a productive discussion about the rheumatology community’s concerns with a new policy that will allow Medicare Advantage plans to utilize step therapy in Medicare Part B. While we support the goal of decreasing the cost of medications, the ACR has long opposed step therapy and other utilization management techniques that undermine the clinical judgement of providers, delay access to needed treatments and put our patients’ health at unnecessary risk.”
“During the meeting, Secretary Azar expressed a willingness to provide clarifying language to Medicare Advantage plans that would further define the definition of ‘grandfathering.’ We hope this clarification will state that patients currently stable on their treatment will not be subjected to step therapy if they switch between Medicare Advantage plans. Such a clarification should also explain that if a patient has previously been through step therapy to arrive at an effective medication under a different health plan, they will not be subject to step therapy again when they switch plans.  Similarly, if a patient goes into remission and is able to stop taking a drug, but later needs to go back on to treatment, they will not be subject to step therapy again. We believe the aforementioned clarification would be a positive step in protecting our patients’ ability to continue with therapies that work, and urge HHS to move swiftly to provide that guidance.  We also encourage HHS to provide additional information on what this policy will mean for patients transitioning into Medicare.”
“We remain concerned that the provider burden will increase with this policy change but are encouraged by the Administration’s willingness to accept input and proposals on how to reduce burden. Further, we appreciate the Administration’s expressed willingness to engage with the provider community regarding the appeals process and the value of defining clinically appropriate treatment pathways as part of step therapy.  We hope that the Administration will consider making the prior authorization and appeals process in Medicare Advantage more transparent and streamlined, as this is critical for patient access.”
“While we continue to have concerns about the impact of this policy on our rheumatology patients’ ability to access timely and effective therapies, I want to thank Secretary Azar and his staff for engaging with ACR leaders and the rheumatology provider community on these issues. We look forward to continued dialogue on policy modifications that will improve patient access.”

ACR: New CMS Decision an Affront to America’s Sickest Medicare Patients

The following is a press release sent out today by the ACR.

The American College of Rheumatology (ACR) today expressed its extreme disappointment with a new Centers for Medicare and Medicaid Services (CMS) decision to allow Medicare Advantage (MA) plans to implement step therapy for Part B drugs and cross-manage Part B and D drug utilization. The policy change threatens patient access to drugs covered under Medicare Part B for the 54 million Americans living with rheumatic diseases.  This policy puts insurance companies in control of patient treatment plans – compromising medical decision making between doctors and patients prevents timely access to medications that effectively control disease.

“Put simply, this policy change is a gross affront to America’s sickest Medicare patients – individuals living with diseases like inflammatory arthritis and cancer – who depend on timely access to safe, affordable, and high-quality treatments,” said David Daikh, PhD, MD, President of the ACR. “Utilization management techniques like step therapy prevent and delay important treatments for rheumatic disease patients, which can result in irreversible joint or organ damage. At the same time that medical research is showing that early institution of effective treatment prevents such damage, CMS is instituting a policy that will makes it much more difficult for patients to get this treatment in time. We urge CMS to reconsider this policy and ensure that all Americans continue to have access to the most appropriate and effective therapy as determined by their health care team.”

Step therapy—also known as “fail first”—is a troubling practice employed by a majority of insurers that forces patients to try therapies preferred by the insurance company before being approved for the therapy their doctor prescribed—even when doctors doubt the “insurer preferred” option will be effective. Utilized by both public and private insurers, step therapy undermines the clinical judgment of healthcare providers, leads to delays in effective therapy, and puts patients’ health at unnecessary risk.

The ACR has long opposed utilization management techniques such as step therapy – in addition to others such as prior authorization, specialty tiering, and high cost-sharing – because they can prevent and delay important treatments for patients. In comments submitted to CMS last month, the ACR urged policymakers to protect patient access to Part B therapies and to instead address the issue of high treatment costs by facilitating the development of alternative payment models, expanding patient access to cost and coverage information at the time of treatment and improving FDA’s capacity and manufacturer ability to bring safe, effective biosimilars to market, which will increase competition and lower costs. The ACR also supports practices continuing to negotiate better overall drug spending through Part B than what currently occurs in Part D, as suggested by HHS’s own dashboard. Yet rather than addressing underlying causes of the high drug costs, this CMS policy seeks to reduce costs for insurers by limiting the ability of patients to receive the appropriate medications to treat their disease.

Furthermore, the ACR expressed concern over how these changes are being implemented and urged CMS to put any proposed changes through the formal rulemaking process so that patients and healthcare providers may be able to weigh in on the details of such a proposal.

“A change this seismic – one that has significant consequences for patient access to live-saving drugs – should go through the formal comment and rule-making process,” Dr. Daikh concluded.

Swallow Test and Mini-Health Update

At my rheumy appointment last week, I brought up a difficulty I’ve had with swallowing things for a while. Since my recent endoscopy didn’t find a cause, doc referred me to the hospital for a swallow test.

It was an interesting process. I had to drink a variety of liquids and a pudding laced with barium. One liquid was watery and another was the consistency of milk. The pudding was almost like marshmallow fluff. At one point, I had to eat a GF cracker folded into the fluff. I also had to swallow a barium-laced sort of alka seltzer as well as a barium tablet.

The most wildpart of this test was that they had me sit and then stand against a table – and then had me stay leaned against the table as they moved it from a vertical to horizontal position and back again! It was an absolutely wild ride, but one the tech, speech pathologist, and doc prepared me for.

Throughout all of this, obviously, an imaging system was recording how my body handled these materials while sitting, standing, and laying down. We also went from light sips to several gulps in a row for added variety.

I got the results back from that today and, surprise, after a few weeks of tests showing normal things throughout my body, this one came back abnormal! I don’t want to celebrate that but, at the same time, it feels incredibly validating since other things haven’t been found.

So, what’s wrong? I have what is called esophageal dysmotility. Essentially what that comes from is my esophagus doesn’t clear food in the normal two contractions. A third one has to happen, which means my body isn’t working as it should.

Because of that, I have a tendency to aspirate when larger amounts of fluids come into my mouth. It’s a big part of why I drink from a straw – I have to or I’ll choke. It’s not bad enough that I cough usually, but it often is.

I also have a tiny hiatal hernia. The hiatus is a small opening in the diaphragm that our food passes through to get into the stomach. For some reason, my stomach has decided to pop up into that hole. Since this can easily allow stomach acid, food, and drink back up into the throat, it’s likely a big part of why I have to stay sitting up for a while after eating unless I want my food to start coming back up. It can also play a role in shortness of breath and both chest and abdominal pain.

My rheumy has offered to give me a referral to speech pathology which also works on this fun stuff. I will be taking advantage of that for sure.

GI crud

I had a follow-up with my GI NP this week. The diagnosis that we’re running with is IBS. She’s given me a load of OTC options to consider.

I’ve already been keeping a low FODMAP diet recently. It means limiting a lot of things I enjoy eating but it’s also helped immensely. I have to avoid a lot on the list as is due to reactions I have to sugar alcohols, gluten, and more anyway.

She’s offered a referral to test for gastroparesis. To be frank, since that’s something I’ve always suspected as an issue, I may take her up on that. She doesn’t believe that it’ll yield a diagnosis at all – but she’s only seen me one other time, too.

Heart crud

In heart-related news, my echocardiogram from earlier this week came back normal – save, of course, for the tachycardia. I turned in the Holter monitor – which I had to wear for two grueling days – on Thursday. That will take a few days to read and pass results onto my rheumy, who will then pass results my way.

I’m not out of the words here, by any means. Having a pulse of 139 at the GI follow-up isn’t a great thing at all. I’m hoping, though, that moving forward with some of these things yields good long-term results.

My Scariest Rheumatologist Appointment Yet

My health issues have kind of exploded recently.

My colonoscopy and endoscopy showed nothing about what my GI tract is dealing with. The mental health crud I’ve been facing isn’t getting much better. And, now, something scary is happening.

At my initial digestive health appointment, the NP mentioned that my heart rate was pretty high. That combined with things like dizziness were setting off her red flags. As it’s not her specialty, she suggested I follow-up with primary care.

A few weeks later, I had my IUD recheck and brought this up. That NP didn’t think it was a big deal as I always tend to run higher, at least in that health system’s records. “Specialists worry more,” she said, “because they don’t deal with this regularly.”

I ran late to last week’s rheumatology appointment. I made the mistake of going to the wrong clinic because I didn’t check my calendar correctly. By the time I got across town, I was about 15 minutes late but they were fine with that.

The MA goes to get my vitals and the machine says my pulse is 130. And it’s not calming down. She decides to come back at the end to check it. During the appointment, though, doc became really concerned. My heart was still racing incredibly fast. When I brought up that the machine during my endo/colonoscopy yelled at us for tachycardia, doc shot me a look. Her demeanor changed as she asked questions… and promptly ordered an echocardiogram and Holter monitor.

By the time the MA came back in, my pulse was still high but had calmed. The bigger problem at that point, though, was that my heart began beating irregularly. Instead of that traditional bumbum bumbum, I was exhibiting bumbumbum bumbum.

The MA and I went through my meds list to see if there was anything that might be causing heart stuff. Nortriptyline can do that, and so can Lyrica. A friend just had to go off nortriptyline because it was making it look like they needed heart surgery. Since we just upped that to 30 mg each night, I could definitely see it being the culprit.

But I’ve also been sitting with some scary feelings about what if this isn’t the case. I can feel my heart racing and, if I’m honest, I thought it was my anxiety causing this. As I write this, feeling every racing and irregular beat, I’ve been sitting for over half an hour. There is no legitimate reason for my heart to be so upset.

It’s scary. I’m scared. I worry about what this could mean for my future. I shouldn’t be a thirty-year-old pondering mortality, but here I am. My MA and I worry about if this could also be due in part to biologics – which haven’t been researched enough to truly know their side effects… And that’s especially true with Anakinra/Kineret and adult patients.

So, tomorrow morning, I get to have a heart ultrasound. After my appointment, they’ll give me a Holter monitor to track my pulse for the next 48 hours. This week is a rough one already with appointments I have – I also see ENT for a swallowing test and have my GI follow-up on Thursday.

Of course, I’m still dealing with several undiagnosed issues right now, too, including what we think might be Mast Cell Activation Syndrome (MCAS). Of course, that can bring with it cardiovascular issues which could explain my heart stuff, too. The arrhythmia and tachycardia my rheumy’s office witnessed are both telltale signs, especially along with allergic and dermatologic reactions I keep having.

For now, I’m placing bets that my heart issues are caused by medication(s) or MCAS. If not, though, I don’t know what will happen. I just hope the actual worst is not as bad as my fears lead them to potentially be.

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6 Things I Wish I’d Known About Endoscopy and Colonoscopy Prep

A fewweeks ago, I had an endoscopy and colonoscopy. While the IV bruise is finally healed, I’m still wishing I’d known more going into the prep stage.


The suggestion to chug Gatorade and water is more than a suggestion.

Buy wipes

Yes, butt wipes. I already use them but, if you don’t, get a travel pack. Your butt will thank you.

Skip the broth

Look, chicken broth was on the pre-approved okay-to-drink list. After one glass, I don’t think I’ll be able to have chicken broth again for a long time.

Invest in Jello

Do it. As soon as your procedure is scheduled. Don’t be that person making a last-minute Target run when you’ve not eaten in a day and you’re having chicken broth burps.

Don’t try to catch up on podcasts

You’re going to be incredibly tired after your procedure. Skip the podcasts you love and trade them in for a nap watching Bob’s Burgers. If you’re like me, you’ve seen every episode anyway.

Take a deep breath

Just because you’re having a medical procedure doesn’t make it scary. More often than not, it’s just to rule out big stuff – and it won’t find anything.

ACR Responds to the CY 2019 Physician Fee Schedule and Quality Payment Program Proposed Rules

The following is a press release that was just sent from the American College of Rheumatologists.

While we are encouraged by CMS’ continued focus on reducing physician paperwork burden, we are deeply concerned that the proposed cuts to cognitive evaluation and management (E/M) services, along with the methodology changes to practice expense (PE), will further restrict patient access to rheumatologists and other cognitive specialists at a time when the workforce is already shrinking. E/M services by rheumatologists are critical for effectively managing and reducing the long term functional and economic costs of many debilitating diseases. These proposed cuts will have significant negative impacts on rheumatology practices.

The cuts also go against the recommendations of MedPAC, which earlier this year proposed increasing reimbursement for E/M services given the time and intensity they require, and noted that E/M services are already undervalued relative to other physician services. There is also the risk that additional cuts would worsen the current rheumatology workforce shortage and add additional strain on patients’ ability to access rheumatology care.

Further, we are concerned that the proposal to reduce Medicare Part B reimbursement for new drugs to Wholesale Acquisition Cost (WAC) plus 3 percent could slow market uptake of biosimilars and thwart the Administration’s efforts to reduce drug prices.

Regarding this year’s Quality Payment Program Proposed Rule, we appreciate CMS’ emphasis on supporting the development of alternative payment models (APMs) and are encouraged by the agency’s proposal to allow more physicians to participate. However, we are concerned that eliminating the MIPS small practice bonus as a stand-alone bonus and instead folding it into the quality performance score would dilute the bonus and hurt small and rural providers. The ACR strongly supports maintaining the small practice bonus as a 5 point stand-alone bonus that is added to the final score.

We will submit detailed comments in the coming weeks and look forward to continued dialogue with CMS about the proposed changes.

Posted in ACR

American College Of Rheumatology Partners With Emirates Society For Rheumatology To Co-Host International Conference

The following is a press release that came out this morning from the ACR.

The American College of Rheumatology (ACR) is collaborating with the Emirates Society for Rheumatology (ESR) to co-host their 4thAnnual Conference in Dubai, United Arab Emirates, September 19-21, 2018. The conference marks a first-time partnership and brings together leaders from both organizations and will feature over 30 talks and presentations on emerging research and noteworthy topics within the field of rheumatology.

This partnership is designed to expand and share global rheumatology knowledge, granting event attendees access to valuable content they may not otherwise have available to them. In addition to participating in live sessions with leading researchers, attendees will receive a year-long complimentary subscription to the ACR’s new streaming platform ACR Beyond, which will include recorded sessions and select live streams from the ACR’s upcoming annual meeting in Chicago this October.

“The Emirates Society for Rheumatology has hosted several successful regional events that feature groundbreaking scholarship,” said ESR President Waleed Al Shehhi, MD. “Thanks to the assistance and guidance of the ACR, the biggest international body for rheumatology, and the ESR’s scientific committee, we can now ensure a wider audience for the latest updates in the field in Dubai.”

To further its mission of empowering rheumatology professionals to excel in their specialty, the ACR hopes that this collaboration with the ESR will provide a model on which future conferences can be based, wherein physicians and health professionals can obtain top-quality content as well as engage and network with thought leaders from leading international organizations.

“We are excited to partner with ESR, whose mission of improving the standard and quality of rheumatologic care aligns with the ACR’s,” said ACR President David Daikh, MD, PhD. “Together, we’ve designed a compelling program that features discussions on developments in clinical care and recent research. We hope that the success of this event will allow us to collaborate with other organizations in the future to share resources that advance the study and practice of rheumatology internationally.”

Highlights from the 4th ESR Annual Conference include talks from leading experts such as Rajaie Namas, MD, Physician at Cleveland Clinic Abu Dhabi, James O’Dell, MD, Professor and Vice Chair, Department of Internal Medicine at University of Nebraska Medical Center, and Michelle Petri, MD, MPD, Director of Hopkins Lupus Center at Johns Hopkins University.

Registration for the three-day conference is now open, and those interested in attending can find more information at www.esr.ae. All conference sessions and panels will be held at Dubai Festival City.

Did Methotrexate Make Me Gluten Intolerant?

a photo of a clear pill organizer with mostly white pills and orange-yellow ones in Friday's slot against a black table; a yellow overlay with white text: " Did methotrexate make me gluten intolerant? Not Standing Still's Disease "

When I started methotrexate in late 2010, it was rough. I started on the pills and then discontinued them, moving on to biologics. After switching to a new rheumatologist a year later, I tried it again – this time as an injection in conjunction with Enbrel.

About this time is when I noticed that anything containing gluten made me incredibly sick. We ran a Celiac blood test but, as I wasn’t eating gluten, it came back inconclusive.

Since the only treatment for Celiac disease is to maintain a gluten-free diet, I’ve maintained that since late 2012. It’s not always been easy. The advancements in gluten-free products have made it easier. I’ve learned a lot of cool cooking and baking tricks along the way. I have to work more for my food, and that’s a good thing.

Throughout the years, I’ve wondered many things about my inability to eat gluten. Why did it come on so suddenly? Is there a reason it continues to last? Why did it come on when it did?

I recently came across a few journal articles that might shed light on that.

Apparently, there have been cases where gluten intolerance-like behavior has come on as a result of methotrexate. For most patients, this has calmed down after following a gluten-free diet and discontinuing the medication. These patients were then able to restart consuming gluten.

But I wonder – what is it that these patients have received as far as care that has led to this recovery? Are there patients for whom this never cleared up?

I survived on bread for the longest time. My go-to foods were sandwiches, bagels, and garlic bread. From 2010-2012, I practically lived on pop-tarts and on-the-go pastries or protein bars. What else could have changed during that time period to trigger a gluten issue?

I just don’t know.

If you’ve dealt with gluten intolerance after being on methotrexate, has it cleared up? Is it situational or stress-related? I’ love to hear from you.

New Potential Diagnoses, New Medications, and More Tests

The last few weeks have been incredibly hectic. I will say, though, that’s hectic in a good way. After putting up with issues for a while, I’m finally getting them addressed.

photo inside a GI exam room with tan exam table and white pillow against a blue and tan wall

I feel like I’ve already perfected the art of spending time in exam rooms.


My migraines have been getting worse again. Unfortunately, our insurance doesn’t want to cover much of my Maxalt. They only want to cover three fills in sixty days. That’s 27-36 pills. When I have to take two to kill a migraine, that’s not enough. It means that, instead of being able to take these pills and move on with my day, I’m still having to try to treat my migraines with other things.

It just doesn’t work.

My neurologist has upped my nortriptyline to three pills at bedtime instead of two. I’m really hoping that it helps. For now, it’s helping me sleep through the night more. I’ll take that!


I finally got a response from my allergist/immunologist office. The pee tests I did for MCAS were mostly within normal limits, though one showed higher mast cell activity than the others. Since I’m still having what we think are MCAS symptoms, though, they prescribed me montelukast or Singulair. What it does is block leukotriene D4 from hitting leukotriene receptors. This is especially helpful in the lungs, but also helpful throughout the body.

After a few nights of this, I’m already seeing benefits. The biggest one is that my rashes are not showing up! My face, chest, and arms have been normal looking for a few days. I’m absolutely floored and thrilled.

It does make me wonder if my rashes lately have been more due to MCAS than SJIA. Notably, I haven’t had much of my odd undiagnosed symptoms the last few days, either.

K's hand with three green and white capsules (nortriptyline), one pink pill (etodolac), one white capsule with black writing (Lyrica), and one pink square pill (Montelukast)

Birth control

I opted to get an IUD in order to get off my birth control pill. The extra estrogen could be increasing the frequency of my migraines.

That got put in on Tuesday. The process was incredibly painful and I almost passed out and/or threw up. I’m still kind of processing it but, to be honest, it was traumatic. The strings have, at least, stopped poking my insides.


I also had a GI consult on Thursday. It was a really thorough visit and the NP I saw was incredibly understanding. I was migraining while there and she was very patient with me having a hard time with some words.

After talking more about my history and some of the things going on, she is concerned that I may have a type of IBD instead of IBS. Things like waking up at night to poop and rarely being hungry or only eating three bites of something to feel full are apparently not normal for something like IBS. In order to rule IBD – or another digestive issue – out, there are a few tests we have to run. Next week, I get to collect my poop and bring it to them for testing.

At the end of the month, I’ll have an endoscopy and colonoscopy. It may be able to give us answers or, at the very least, it can rule out something more serious.

Unfortunately, we noticed that my heart rate has been faster for… a while now. Combine that with my lightheadedness and nausea, and the NP is concerned about my heart… which means yet another appointment I’ll have to make.

Funny enough, it’s that issue that I’m focused on… mostly because heart stuff could easily point more towards MCAS or something else. If I’m honest, that’s scary. I’ve spent several days recently contemplating mortality because that’s what I do best. It’s not been great for my mental health.

So many appointments

This has been a collection of a ton of appointments and calls. It means that I’ll have a ton of follow-ups coming up, too.

I’m tired. It’s exhausting to have to stay on top of busy providers, try to get test results, and wait for calls back. People don’t always understand how tiring it is. It’s definitely worse than having a full-time job. Hell, it is a full-time job.

Thankfully, today’s appointment is for our car. It’s nice to be on the caregiver side of things sometimes, even if it’s for an inanimate object.

Hopefully, getting my things addressed will lead to positive results. I just want to feel better physically, mentally, and emotionally.

photo of the benepod, the usb cable, and the adapter against a rainbow heart covered pouch against a wooden table; teal overlay with white text: " benepod review - not standing still's disease "

Benepod Review

The makers of the Benepod sent mine to me for free in exchange for my feedback and honest review.

Spring is always a rough time for me. The constant barrage of storms brings intense joint pain, especially around my knees. Thankfully, this year, I have the Benepod.

the benepod box with instructions, usb cord, and adapter

You may remember Lady Gaga sharing how she alternates hot and cold quickly for her chronic pain. That’s what this product does, albeit on a smaller scale.

underside of benepod showing a light ring of red around the outside and large circle of blue on the inside

The underside of the device has a red ring that heads up as well as a blue circle that cools down when plugged in. This leads to Thermal Grill Stimulus – something that can’t fully be explained yet. While we don’t know why it works, it can help mask or ease someone’s pain.

One of the coolest parts of using the Benepod is that there is no medication to take or topicals to apply. We really don’t have to worry about side effects like with other pain treatments. I don’t have to resort to extra NSAIDs that upset my IBS or the few muscle relaxers I have that make me woozy.

To use it, you plug the device in. A green blinking light will go solid once the device is ready to use. It’s good for twenty minutes which doesn’t sound like a long time but somehow is. If you want more time, you simply unplug the device, plug it back in, and wait for your solid green light.

It is a little small, so moving it can get a little cumbersome for my crippy arthritis hands. Thankfully, Saringer is already working on things like a strap to hold the device in place to make it even more accessible.

This doesn’t completely get rid of my pain. To be honest, I don’t think there’s any one thing out there that would. What Benepod does, though, is take my pain from a seven or eight out of ten to somewhere between three and five. As much as I loathe those medieval pain scales, they’re at least good to show progress in pain reduction.

With how many storms we’re having lately, I’ve been heavily relying on the Benepod to help me get through the nights. There aren’t many things I feel the need to always have close by, but this is one of them for sure.

Do I have to be near an outlet?

No! The fact this uses a USB cord makes it super easy to use a portable charger to power the pod. The cord is so long, too, that I’m easily able to use it in bed while plugged into a USB hub.

Is this affordable?

Look, I’ve reviewed some things that cost several hundred dollars. I’m happy to say this only costs $99! You can snag it on Amazon, too, which means you could use gift cards and get it quickly.

Is it worth it?

Completely. There are nights that I struggle to sleep because my knee pain is so bad. When I make time to use the Benepod before bed, I actually get a few hours of restful sleep.