Pals, don’t miss this upcoming FB live this Sunday, July 14th, at 11:30 am Eastern!
I’ll be talking with my pal Lene on the RAHealthCentral page about how rheumatoid arthritis can affect our intimate relationships – and ways we can bounce back.
See ya then!
In the last few weeks, everything in my life got put on hold. I owe everyone an explanation.
In 2007, I met my husband. We were engaged in 2012, and then we got married in 2014. Within a few years, I discovered my queerness and gender fluidity. If I’m honest, I thought that once we got through that period, we would be golden.
I was wrong.
T and I are going to be getting a divorce eventually. For now, I’m working on finding a new place to live.
As sad as I am about it, part of it is him struggling with my queerness and gender. I would rather feel seen in full than in part, but it is what it is.
We’ve been polyamorous for a little bit, but he only recently began dating. For those of you who don’t know what that means, it means I’ve been on dates and relatively recently more seriously dating. Polyamory is about many loves, and I’m happy to answer more questions about that. I haven’t been as out about it to avoid awkwardness with family, but have reached a point where I’m past that.
Ian, one of my partners, has been instrumental in helping me process my feelings about so many things surrounding relationship stuff. It’s been interesting dating them because they are very similar to me – the real me that often has gotten hidden. It’s been really nice to find the parts of me that I’ve hidden for so long – but most importantly, to find someone who appreciates all the weird things about me.
Gussy had been sick since Halloween. He passed away on the 16th and went out doing what he loved most – snuggling me and listening to music.
I miss him so much, and I can’t help but think he would still be here if my relationship with T wasn’t tits up. Neither of us paid as much attention to the piggies as we should’ve recently. Combine that with an infection we couldn’t get ahead of and, well, you get the hellish morning of the 16th.
Honestly, I don’t know. I’ve never felt so many emotions all at once. I’m frustrated, sad, hurt, angry, in love, grieving, working, and more.
I’ve been staying off social media and away from email for a while, and probably will still be slower to respond to things.
My hope is that, within a few weeks, things will find a new stride. Naturally, I will try to keep people in the loop as much as I can.
Thanks for being patient <3
The following is a press release issued by ACR as of last week Friday:
WASHINGTON, D.C. – The American College of Rheumatology (ACR) today applauded the introduction of the Improving Seniors’ Timely Access to Care Act of 2019 (H.R. 3107), a bipartisan bill to protect patients enrolled in Medicare Advantage plans from prior authorization requirements that needlessly delay or deny access to medically necessary care.
The bipartisan legislation, which is sponsored by Representatives Suzan DelBene (D-WA), Mike Kelly (R-PA), Roger Marshall (R-KS), and Ami Bera (D-CA) would require the Centers for Medicare and Medicaid Services (CMS) to regulate the use of prior authorization by Medicare Advantage plans, including establishing a process to make ‘real-time decisions’ for services that are routinely approved. These plans would also be required to offer an electronic prior authorization process and report to CMS on how extensively they use prior authorization, as well as how often they approve or deny medications and services.
“For far too long, patients have faced unnecessary and unreasonable care delays due to insurers’ overzealous use of prior authorization,” said Paula Marchetta, MD, MBA, president of the ACR. “This practice creates significant burdens for physicians and can put patient’s health in jeopardy. We applaud Congressional leaders for standing up to ensure America’s Medicare beneficiaries are able to get the care they need and deserve.”
Prior authorization is a process used by many insurers, including Medicare Advantage plans, whereby a prescribing physician must obtain approval from the insurer before the patient can begin treatment. This is a time-consuming process that often involves a patient facing weeks-long delays before being able to start life-altering therapies.
While originally intended to control costs by reducing unnecessary tests and procedures, many health plans are now indiscriminately using prior authorization, creating additional hurdles for patients and physicians that can lead to delays in treatment that may endanger patients’ health. The process for obtaining this approval can be lengthy and typically requires a physician or their staff to spend many hours each week negotiating with insurance companies – time that could be better spent taking care of patients.
The ACR has been working to advance this legislation as part of the Regulatory Relief Coalition, a group of national physician specialty organizations advocating for a reduction in Medicare program regulatory burdens to protect patients’ timely access to care.
This week, the Coalition released a national survey of 1602 physicians detailing the extent to which prior authorization places burdens on physicians and puts patients at risk. The survey found that 87 percent of physicians report that prior authorization has a significant (40 percent) or somewhat (47 percent) negative impact on patients’ clinical outcomes. Nearly a third of physicians surveyed said their patients often abandon treatment due to prior authorization. Furthermore, 84 percent of survey respondents said that the regulatory burdens associated with prior authorization has significantly increased over the past five years with half of all practices reporting 11 or more requests per week.
The following is a press release from the ACR dated Friday, May 17:
In August 2018, the CMS announced that Medicare Advantage (MA) plans would be allowed to utilize step therapy for Part B drugs. The American College of Rheumatology (ACR) expressed strong concerns about this proposal. The rheumatology community received some good news in this week’s final rule from CMS, which makes changes to the original proposal and addresses several of the community’s recommendations.
“We were pleased to see that CMS included the ACR’s suggestion to implement a 365-day ‘lookback’ period for Part B therapies, to determine if the enrollee has been actively taking a Part B medication,” said Angus Worthing, MD, chair of the ACR’s Government Affairs Committee. “The originally proposed 108-day lookback period would have put many of our patients at risk for having to go through step therapy all over again. Extending this period to 365 days will help to protect these patients, and we appreciate CMS listening to our feedback.”
In this way, patients who are stable on their current medication will be able to remain on their prescribed therapy under the final rule. The ACR is also encouraged by CMS’ decision to require plans to respond to appeals within 24-72 hours.
While these are positive changes to the original proposal, additional clarity and transparency is needed to put patients in the driver’s seat. The ACR asks that CMS require MA plans to make the step therapy exception process readily available and understandable on its website for providers, patients, and caregivers. The College would also appreciate more detail on how CMS will ensure MA plans follow this direction and encourages CMS to increase monitoring of MA plans’ implementation of utilization management practices. Utilization review entities should provide detailed explanations for denials of requests for prior authorization or step therapy override, including whether there was any missing information which resulted in the denial.
CMS also finalized regulations related to the Part D Explanation of Benefits to require the inclusion of drug pricing information and lower-cost therapeutic alternatives in the Explanation of Benefits that Part D plans send members.
“The ACR agrees that this information is helpful and beneficiaries should have access to any possible ways to lower their out-of-pocket costs,” said Worthing. “However, we would not support this information being used to force a stable patient to switch to another biologic medication for the sake of cost control. This switch would needlessly disrupt continuity of care and put patients at significant risk for loss of disease control and potentially life-threatening complications.”
Ideally, the ACR hopes that CMS will monitor plans closely for non-medical switching and will require plans to ensure transparency about any utilization management requirements.
The ACR is dedicated to ensuring that rheumatology patients have access to safe, effective and affordable therapies under the Medicare Part B program and will continue to serve as a resource to the agency on this topic.
The following is a press release from the ACR dated yesterday:
Physician and health professional leaders with the American College of Rheumatology (ACR) convened on Capitol Hill this week to urge lawmakers to act on a range of policy issues affecting patient access to care.
Rheumatology advocates asked lawmakers to support legislation that would reform step therapy and prior authorization practices, strengthen the rheumatology workforce, and preserve patient access to osteoporosis testing. They also educated offices on the need for arthritis research funding through the Department of Defense and the importance of addressing the physician workforce shortage.
“As the demand for rheumatology care continues to grow, rheumatology leaders are committed to advancing policies that will improve care access and quality for the one in four Americans living with a rheumatic disease,” said Paula Marchetta, MD, MBA, president of the ACR. “We had productive conversations with lawmakers about bipartisan, common-sense policy solutions that will ensure patients continue to receive timely and appropriate care for their disease.”
The American College of Rheumatology asked legislators to support the following legislation to improve patient access to care:
The American College of Rheumatology also looks forward to working with legislators on the following issues and related policies:
For additional information about the ACR’s legislative priorities, please visit: https://www.rheumatology.org/
This November will mark my 26th year of living with chronic health conditions. I’ve had several appointments a month for the past 9 years. Working at a medical school and getting a masters degree in health care administration has given me more perspective on all of the difficulties health care providers face. I’ve learned a lot about what they have to deal with on a daily basis.
Without further ado, here are 12 things I’ve learned that providers often won’t tell you.
1. Insurance companies like it more if they give you a script for medications than if you go to PT.
Keep in mind that many people aren’t in favor of medications for pain right now. That said, this article about how we approach pain is WILD. Since medications are cheaper, they’re preferred – even if they’re not as effective as physical therapy, occupational therapy and more.
2. Insurance companies won’t generally cover alternative therapies – even if they help you.
Even medications that have been shown to be less addictive get the cut in favor of more common treatments and therapies. While that might be okay for some people, many others – like me – get a ton of relief from acupuncture. I’m lucky that I have access to a great local sliding scale clinic. In fact, that’s the only way I can afford it as often as I need it.
3. Insurance companies mess with their ability to provide the best care.
From refusing to cover medications and treatments to making patients jump through hoops and more, insurance companies are constantly interfering with the way providers give care.
If you want to learn more, the Global Healthy Living Foundation has done a study.
4. You don’t necessarily have to come to the office.
It may not always be right for mental health care, but telemedicine can be an incredibly important tool.
As a patient with both fragrance allergies and a compromised immune system, I hate going to the doctor’s office. I’ve become increasingly afraid of everything from colds and deodorant to the measles and shingles. Additionally, I’ve started working full-time not in my house! That means the travel time to and from the clinic is cramping my style.
If I had the ability to use telemedicine, I’d absolutely embrace it. It’s had some great results.
5. Getting enough sleep can help with a lot.
From a lack of energy to pain levels, getting the right amount of sleep can be key to improving so many things. This can be highly individualized, though. While some people need to disconnect from media to sleep well, others need the sounds and activity of podcasts or the television to catch those Zs.
Additionally, sleeping the right way can make all of the difference. Sleeping naked, for example, can be helpful to limit yeast infections by allowing genitals to breathe. Sleeping on your stomach can lead to neck and back issues. Using a pillow between your knees might help align your spine more optimally as a side sleeper.
6. Seeing new providers in the summer might be dangerous.
That’s the time of year residents most often begin to see patients at teaching hospitals. Being relatively new to the profession, they’re more likely to prescribe a medication that might not be the best for you.
Make sure that you question and look up medications, especially if you have concerns.
7. People are misdiagnosed and given the wrong medications relatively often.
According to a study in the BMJ, “diagnostic errors affect at least 1 in 20 US adults.” About half of these diagnostic errors could be fatal, especially when related to treatment.
It’s okay to push for second and third (and more!) opinions to go into situations with a sound mind.
8. If you’re looking to have surgery? Avoid Friday.
If you’re going to have a complication, it’ll often pop up the next day. This could leave you in the hands of people not as familiar with your case.
9. Medications have side effects – but so do lots of things.
Vitamins and anything ‘natural’ can interfere with your medications and even cause an uptick in some health conditions. St. John’s Wort – a staple for a lot of all-natural people – can cause heightened anxiety, fatigue, sunlight sensitivity, and more.
Just about anything you consume can have a side effect. One side effect of ice cream could be increased phlegm production. Other foods can cause heartburn, sleep disturbances, and more.
10. Providers generally don’t have to disclose a criminal history.
That could mean you don’t know your HCPs are violent sexual offenders like one Florida doctor. While some sites will show these things, not all do – especially if that provider has a private practice. Generally, teaching hospitals won’t hire those types of people… but they can always have their own drawbacks.
11. Their jobs aren’t like a 9-5.
Look, I know some patients aren’t interested in learning about provider burnout. It’s an important topic to dig into, though, because we have to remember that we’re all human here.
Not only is the weight of dealing with life and death often hard to handle, many providers don’t finish with their job during business hours. I used to work for pediatricians. They often wound up completing chart notes after dinner. This often led to staying up well into the early morning, only to be up by 6 AM to prepare for a new day.
Studies have shown having time to do things like read for fun is very helpful. While that’s great to know, when would providers find the time in that schedule? I just don’t know.
12. You may never be pain-free.
This can be a really tough thing to accept, so many providers just don’t broach the subject.
Pain is an alert system to draw your attention to something that needs your focus. This can start with something mundane like itching before moving on to various levels of pain.
Just because pain is inevitable doesn’t mean you should be forced to live with constant pain levels without relief. Talk with your providers about things you can try to decrease and manage your pain.
The following is from Dr. Angus Worthing, Chair of the American College of Rheumatology’s Government Affairs Committee:
“The American College of Rheumatology (ACR) applauds the FDA final guidance, “Considerations in Demonstrating Interchangeability with a Reference Product,” which establishes an approval pathway for interchangeable biosimilars and balances biosimilar uptake and provider confidence concerns while prioritizing the safety of our patients.
Specifically, we are pleased to see that the final guidance expects manufacturers to use robust switching studies. At least three switches with each switch crossing over to the alternate product will be needed to determine whether alternating between a biosimilar and its reference product impacts the safety or efficacy of the drug. The ACR believes these studies will provide an understanding of what patients are likely to experience when changing formularies in a multi-payer, multi-state market.
We are also pleased to see the FDA finalize its approach to safety, immunogenicity, and efficacy for the demonstration of interchangeability. And we agree with the FDA that post-marketing safety monitoring for an interchangeable product should also have robust pharmacovigilance mechanisms in place. In order to improve clarity, the ACR suggests that FDA prescribing information for all biosimilars include statements about whether each agent is or is not interchangeable to the reference product.
The ACR shares the FDA’s goal of ensuring that more affordable treatments reach patients as quickly as possible and appreciates the agency’s measured and thoughtful approach throughout this process.”
The following is from a press release sent out on April 29th:
Today, the American College of Rheumatology (ACR), in partnership with the Arthritis Foundation (AF), released two guidelines on juvenile idiopathic arthritis (JIA). One guideline aims to provide therapeutic approaches for non-systemic polyarthritis, sacroilitis and enthesitis; and the other focuses on the screening, monitoring and treatment of JIA with associated uveitis.
Juvenile arthritis (JA) is a common, chronic childhood disease that affects nearly 300,000 children in the United States. According to the AF, juvenile arthritis is not a disease in itself, but is an umbrella term used to describe the autoimmune and inflammatory conditions or pediatric rheumatic diseases, like JIA, that can develop in children younger than 16.
With JIA, the term idiopathic means “of unknown origin.” All forms of JIA are associated with a decreased health-related quality of life, a risk for permanent joint damage, and the likelihood that the disease may persist into adulthood.
A few of the recommendations from the JIA polyarthritis guideline include:
“These recommendations highlight the importance of prompt and effective treatment for children with JIA and polyarthritis, sacroiliitis, and enthesitis,” said Sarah Ringold, MD, MS, a pediatric rheumatologist at Seattle Children’s Hospital and the principal investigator on this guideline. “They also support relatively tight disease control, with inactive disease as the goal. While it is anticipated that these recommendations will lead to improved outcomes for children with JIA and these phenotypes, they also emphasize the ongoing need to generate high-quality data about treatment effectiveness in JIA.”
As noted, JIA can impair a child’s quality of life—especially when extra-articular manifestations occur. A common manifestation is uveitis, which can be a chronic or acute disease. Chronic anterior uveitis (CAU) develops in 10-20 percent of children with JIA, is usually asymptomatic, and there is rarely external evidence of inflammation. On the other hand, acute anterior uveitis (AAU) is a distinctly different form of uveitis and typically occurs in children with spondyloarthritis (i.e., those with enthesitis related or psoriatic arthritis).
Important recommendations from the JIA-associated uveitis guideline include:
“Prevention of sight-threatening complications from uveitis is most important. It is crucial that children with JIA undergo scheduled ophthalmology screening to detect uveitis early since children are usually asymptomatic,” said Sheila T. Angeles-Han, MD, MSc, a rheumatologist at the Cincinnati Children’s Hospital and principal investigator for this guideline.
The JIA guidelines were developed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology, which provides rigorous standards for judging the quality of the literature available and assigns strengths to the recommendations that are largely based on the quality of the available evidence. The guideline process also included significant input from patients and parents, which was made possible through the ACR and AF partnership. “We are proud to have been involved in this work and to witness the important contributions of the patient and parent partners,” said M. Suz Schrandt, JD, who serves as the director of patient engagement for AF. “Their lived experiences truly helped to guide the project.”
Although the quality of evidence was low or very low and most recommendations were therefore conditional for both, these guidelines fill an important clinical gap in the care of children with JIA, including non-systemic polyarthritis, sacroilitis and enthesitis, and JIA-associated uveitis, and may be updated as better evidence becomes available.
The following is a press release from the American College of Rheumatology sent out yesterday:
The American College of Rheumatology (ACR) today led a group of 25 patient and provider organizations in urging the Centers for Medicare and Medicaid Services (CMS) to immediately add patient safeguards to the agency’s proposal allowing Medicare Advantage plans to utilize step therapy for Part B drugs. These safeguards, which were included in last year’s Medicare Part D and Medicare Advantage proposed rule, are currently set to take effect at the beginning of 2020, leaving a nearly year-long gap where beneficiaries may experience care delays or denials due to step therapy restrictions.
“The proposed guardrails would not go into effect until 2020, leaving vulnerable patients unprotected from harmful step therapy practices. For patients with severe or complex diseases, this can result in irreversible damage, disability, and even death,” the groups wrote in a letter to CMS Administrator Seema Verma. “We urge CMS to immediately publish guidance to plans that lays out, at a minimum, the patient safeguards proposed in the Modernizing Part D and Medicare Advantage to Lower Drug Prices and Reduce Out-of-Pocket Expenses proposed rule so that beneficiaries have some protections in 2019.”
Step therapy, sometimes known as “fail first”, is a technique used by health insurers in an attempt to control costs—often at the expense of patient choice and physician expertise. Patients are required to first try medications that are preferred by the insurance company before being approved for the medication prescribed by the patient’s doctor – even when it is clear to the prescribing physician that the insurer preferred option will not be effective. This practice undermines the clinical judgement of physicians and often leads to delays in patient care. Step therapy can also disrupt continuity of care by requiring patients to halt an effective therapy due to formulary or protocol changes to their plan. While common practice among commercial insurers, Medicare Advantage plans had been barred from using step therapy until the Administration issued a memo last year giving plans the option to do so at the start of 2019.
In addition to calling for proposed safeguards to be immediately implemented, the groups also urged CMS to go further to protect patients.
“Although we are pleased to see these safeguards, such as step therapy requirements only applying to new starts of medication, the safeguards do not go far enough to protect patients,” the letter continued.
Specifically, the groups urged CMS to make the following patient protections explicitly clear:
“We hope that CMS will publish guidance to the plans as soon as possible so that patients will have safeguards for the 2019 plan year,” the groups concluded. “We welcome the opportunity to work with CMS to ensure that no patient is left without the ability to get the treatment that can improve or save their lives.”
The following is a press release the ACR released today:
The American College of Rheumatology (ACR) has released new drug pricing and step therapy position statements that they hope legislators will consider as they continue to explore policy and regulatory options to make drugs more affordable and accessible.
“We continue to emphasize these topics because they are so critical to the well-being of millions of Americans living with rheumatic diseases, some of which can be quite debilitating and even lead to death,” said Colin Edgerton, MD, a rheumatologist at Low Country Rheumatology in South Carolina and chair of the ACR’s Committee on Rheumatologic Care. “The need for patients to have access to prompt, affordable, and medically necessary treatments is ongoing and should be considered at every step of the policy making process.”
To make medication more affordable for patients, the ACR recommends:
Similarly, the ACR suggests incorporating the following to improve access to appropriate treatments:
Step therapy and drug pricing are spotlighted in the ACR’s Rheumatic Disease Report Card, which shows how easy it is to live with a rheumatic disease in each state. The report card highlights adequate access to rheumatology care, the affordability of rheumatic disease care, and healthy lifestyle habits that ease the burden of rheumatic disease. The full report is viewable HERE.
The ACR remains steadfast in its support of legislation that keeps drug pricing reasonable for those who need it most, while also protecting patient access to needed therapies that keep more than 54 million Americans with rheumatic diseases living well.