ACR Releases First-Ever Rheumatic Disease Report Card

Posted on by Grayson

The following is a press release issued by the American College of Rheumatology today.

The American College of Rheumatology (ACR) today released the Rheumatic Disease Report Card: Raising the Grade on Rheumatology Care in America, a first-of-its-kind report that evaluates just how difficult it can be to live well with a rheumatic disease in the United States.

The Rheumatic Disease Report Card provides actionable information to healthcare consumers and policymakers in all 50 states and the District of Columbia by answering the question, “How easy is it to live with a rheumatic disease in my state?” The report assigns states letter grades according to their progress in providing adequate access to rheumatology care, ensuring rheumatic disease care is affordable, and encouraging healthy lifestyle habits that ease the burden of rheumatic disease.

The average state grade was a “C,” with Maryland earning the highest grade and Oklahoma and Alabama earning the lowest grades in the report.

“This report comes at a critical time, as countless Americans living with chronic rheumatic diseases are finding it increasingly difficult to afford their prescription medications and even have access to specialized rheumatologic care,” said David Daikh, MD, PhD, President of the ACR. “This report card is an opportunity for Americans to advocate for themselves and their loved ones by raising awareness and encouraging policymakers to enact policies that improve rheumatic disease care access and affordability.”

The report findings indicate that all states have room to improve the access, affordability, and lifestyle factors associated with an individual’s ability to live well with a rheumatic disease.

A severe rheumatology workforce shortage, lack of insurance coverage and delays caused by restrictive insurer practices make it difficult for patients in many states to access rheumatic disease care. Even in states where patients can find a rheumatologist, their prescribed treatment costs are often exorbitantly expensive, as few states have taken measures to curb secretive pricing practices employed by Pharmacy Benefit Managers (PBMs) or put limits on insurers’ use of specialty tiers that implement high cost-sharing models. Furthermore, the report shows that policymakers at all levels of government can do more to make funds available for evidence-based rheumatology intervention programs like those funded by the CDC, and to support access to these programs in rural and underserved communities.

Of the 50 states and one federal district featured in the report, several states stood out as examples that others should look to as models for improving the lives of Americans with rheumatic diseases:

  • Maryland was the only state to receive an overall “A” grade due to its success in having a high concentration of rheumatologists, a low uninsured rate, laws in place to keep rheumatology care affordable, and several CDC-funded arthritis intervention programs operating in the state, including those offered by the YMCA and the National Recreation and Parks Association (NRPA).
  • Arkansas scored well in the affordability category due to state lawmakers’ recent efforts to address PBM transparency by enacting legislation that should serve as a model for future action in other states looking to address this issue.
  • Arizona received distinction for its efforts to educate primary care physicians in remote areas about rheumatic diseases so these frontline healthcare workers can better monitor and treat minor cases locally while referring more severe cases to a practicing rheumatologist. Arizona has one of the lowest concentrations of rheumatologists in the country, with only one practicing rheumatologist for every 139,000 people. Meanwhile, in Massachusetts and Maryland, there is one rheumatologist for approximately every 20,000 people – a ratio nearly seven times higher.

Rheumatic diseases are painful autoimmune and inflammatory diseases that affect a person’s joints, muscles, bones, and organs. There are more than 100 types of rheumatic diseases, including the more commonly known diseases of osteoarthritis, rheumatoid arthritis, lupus and gout.

One in four Americans are diagnosed with a rheumatic disease, and a recent academic study suggested that the number of Americans living with rheumatic disease may be as high as 91 million when taking into account reported symptoms of undiagnosed individuals. The prevalence and cost of rheumatic diseases represent a growing public health crisis. As the nation’s leading cause of disability, rheumatic diseases generate more than $140 billion in medical costs each year in the United States – surpassing the annual medical costs of cancer care.

“Rheumatic diseases can be debilitating—but they don’t have to be if a diagnosis is made without delay and appropriate treatment is started,” said Dr. Daikh. “We hope this report will help people understand that they have the power to turn the tide on this public health crisis by taking steps to raise their state’s grade on rheumatic disease care.”

The Rheumatic Disease Report Card is a project from the American College of Rheumatology (ACR) and its Simple Tasks™ public awareness campaign. Its development was guided by a national task force comprised of leading rheumatology researchers, clinicians and policy experts.

To view the Rheumatic Disease Report Card, please visit SimpleTasks.org/ReportCard.

ACR Statement Regarding the Recent CMS Guidance on Indication-Based Formulary Design

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The following is a press release just issued by the American College of Rheumatology:

“While we appreciate the agency’s efforts to make prescription medications more affordable, we have serious concerns about a new CMS guidance to allow Medicare Part D plan sponsors to implement indication-based formulary designs that allow plans to select drugs for their formularies based only on the disease indications they want to use.

“These changes are a departure from current policy, which requires plans to cover each on-formulary drug for all indications that are approved by the FDA. It takes clinical decision making out of the hands of providers and puts insurance companies in control of patient treatment plans.

“Furthermore, the proposed changes will exacerbate many of the access issues patients currently face with plan usage of existing utilization management practices, such as step therapy. Unlike step therapy, which often delays effective treatments, this proposal would go even further and allow plans to remove therapies from the formulary altogether, leaving patients completely unable to access treatments that doctors and patients choose together. The ACR calls on the Trump administration not to go forward with this plan, or at a minimum to clarify the process for allowing exemptions for patients for whom a specific therapy is medically necessary. This process should be straightforward and not place an undue burden on the physician or patient in gaining access to needed medications.

“We also have concerns on what this would mean for work being done on compendia inclusion to secure off-label drug coverage if plans don’t have to cover all approved FDA-approved indications.

“We remain steadfast in our support for policies that lower costs while protecting patient access to needed therapies and look forward to continued dialogue with CMS about the proposed changes.”

On The Passing of John McCain

Posted on by Grayson

black background with yellow textbox and black text: On The Passing of John McCain Not Standing Still's Disease

Senator and former POW John McCain died yesterday.

Scroling through social media, I’m dismayed. I keep seeing statements from people who have forgotten McCain was not a man of the people. And, me being me, I’m upset by that. McCain was not a good person, at least politically, and we need to remember that. He did a lot of harm to communities – that’s his legacy.

I don’t have to be sad that a person who spent his life harming communities I’m a part of or I support died. This man is not some amazing person to put up on a high pedestal… unless you want to praise the systematic oppression of anyone who isn’t white, cishet, rich, conservative, American-born, and the right kind of Christian.

It’s okay to speak that truth. In fact, I would say we have a duty to do so because the GOP sure as hell isn’t going to take a break from attacking marginalized communities. They’re still scheming while tweeting out their sympathies.

McCain was horribly racist. He used racial slurs and continued doing so, though less publicly. He played a major part in selling sacred indigenous land to mining companies and golf courses. He also voted against MLK day, later saying he wished he hadn’t. Of course, McCain also elevated Sarah Palin which essentially co-founded the birther and tea party movements. That led to the administration we see today, especially with prominent birther Trump in charge.

Don’t forget that this man thought the ACA repeal effort – the one disabled people put lives on the line to stop last year – didn’t go far enough. He fought like hell to stop the ACA from being put in place. Instead of working to fix it, he campaigned on repealing it after it became law. It floors me that someone who helped with the ADA and tried to pass a patient bill of rights could also be so cruel.

On a more personal note, I didn’t have insurance coverage as a child because my mother sucks. Because SJIA is a pre-existing condition, I couldn’t get insurance on my own covering my SJIA until the ACA passed. It took a few years for me to get a job with an insurance option. I can’t imagine having had to wait until then to get care.

I could have easily died if McCain got his way, either by defeating the ACA initially or repealing it. MANY people would have. I don’t have to applaud him for making it through unspeakable things when he would’ve forced many of us into not dissimilar situations.

He could have saved disabled people. We could have stayed on home instead of being arrested. We could’ve taken care of ourselves instead of spending energy on basic human rights. All he had to do was say he would vote against it. Instead he wanted to pull a publicity stunt at the last second, telling reporters to ‘wait for the show.’

While I cried in bed, wondering what the fuck me and my disabled siblings were going to do without the ACA, McCain sat grinning on the inside like a son of a bitch. He did not care that his cavalier attitude was harming people. We were confronted with losing lifelines and he treated it like a game.

I stopped seeking diagnoses for things going on. I was afraid that whatever is going on neurologically or with my heart would get diagnosed. Without protections from the ACA, I could easily lose the ability to get any current diagnoses treated. McCain literally played a part in my poor health last year.

I won’t do about McCain’s legacy. I also won’t pretend that being a POW means he was a good person. What he chose to do when he got home and involved in politics is important. He chose to harm. He was a good republican.

I won’t speak well of someone who took pride in being a selfish asshole. If you choose to do that, you should re-examine why whitewashing history is a hobby of yours.

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

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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

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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

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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 woods 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

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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

Posted on by Grayson

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.

Hydration

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

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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.

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

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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.