ACR Applauds Senate Introduction of Safe Step Act

The following is a press release from ACR dated last Thursday:

The American College of Rheumatology (ACR) today commended leaders in the United States Senate for introducing the bipartisan Safe Step Act of 2019 (S. 2546), legislation that would place reasonable limits on step therapy, a troubling practice that requires patients to try—and fail—treatments preferred by their insurance company and pharmacy benefits manager before a doctor-prescribed option can be approved.

“With the Senate introduction of the Safe Step Act, we are one step closer to removing a treatment barrier that hurts patients,” said Angus Worthing, MD, FACR, FACP, a practicing rheumatologist and chair of the ACR Government Affairs Committee. “We applaud Congressional leaders for recognizing that forcing patients to ‘fail first’ through harmful step therapy practices puts them at unnecessary risk, prolongs pain and discomfort, worsens patient outcomes, and undermines the clinical judgment of medical professionals across the country. We urge Congress to quickly pass the Safe Step Act so that patients can appropriately seek exceptions to ‘fail first’ policies and quickly start accessing the treatments they need.”

Introduced in the Senate this week by Senators Lisa Murkowski (R-AK), Bill Cassidy (R-LA), Doug Jones (D-AL), and five other bipartisan co-sponsors, the Safe Step Act would implement transparent guidelines to prevent inappropriate use of step therapy in employer-sponsored health plans and create a clear process for patients and doctors to seek reasonable exceptions. The legislation builds on reforms passed in 25 states to address this pervasive practice that delays effective care and puts patients at unnecessary risk. While state efforts to limit insurers’ use of step therapy are an important development, Congressional action is needed to address the use of step therapy in employer-provided plans, which are regulated by federal law.

If enacted, the legislation will go a long way towards removing the treatment barriers created by step therapy.

According to a 2019 national patient survey conducted by the ACR, almost half (46.49%) of respondents who are receiving treatment for a rheumatic disease reported that their insurance company subjected them to step therapy.

2016 survey by the Arthritis Foundation found that most respondents experienced negative health effects from treatment delays caused by step therapy. According to the survey:

  • More than 50% of all patients reported having to try two or more different drugs prior to getting the one their doctor had originally ordered;
  • Step therapy was stopped in 39% of cases because the drugs were ineffective;
  • Step therapy was stopped in 20% of cases due to worsening conditions; and
  • Nearly 25% of patients who switched insurance providers were required to repeat step therapy with their new carrier.

A version of the Safe Step Act (H.R. 2279) was introduced in the House of Representatives in April by Representatives Raul Ruiz, MD (D-CA) and Brad Wenstrup, DPM (R-OH), two physicians who have encountered step therapy in their own practices.

Study Opportunity

People diagnosed with Autoimmune or Autoinflammatory diseases that have arthritis as a major clinical component (AiArthritis), often face challenges that lead to delays in diagnosis, misdiagnosis, re-diagnosis and multiple diagnoses. This can cause treatment complications – or “hard-to-treat” disease, resulting in poorer outcomes and inflated long-term healthcare costs.

Some of these diseases, like Adult-Onset Still’s Disease (AOSD), are considered “rare”, while others, like Rheumatoid Arthritis (RA), are considered more common; however, in our internal research, and through continued dialogue with a global patient community, we have identified that many patients do not match the classic disease descriptions as outlined in mainstream publications (“typical” versus “atypical”). Therefore, in addition to delays in detection and diagnosis, we believe it is important to further explore relationships between “rare” versus “common” diseases, as well as “typical” versus “atypical” presentation, to explore how these subsets affect disease progression and outcomes and why some diseases may be harder to treat than others.

This research is the final part of a bigger collaborative project between Purple Playas Foundation, IFAA, and the American Autoimmune Related Disease Association (AARDA), called Knowledge is EmPOWERment. This last initiative is to explore some rare, “atypical”, and hard-to-treat autoimmune and autoinflammatory diseases with arthritis as a major clinical component to identify patterns as to why some diseases are harder to treat than others. Those who do have hard-to-treat disease often experience poorer outcomes, higher healthcare costs, and may exhaust existing treatment options.

The voice of those living with these diseases is POWERful; sharing your experiences will help us develop materials educational materials we hope will aid in early detection, diagnosis, and access to care for the atypical, hard-to-treat population. The results of this research will be used to further our work to advocate in favor of early detection, diagnosis, and access to care.

IFAA is an international nonprofit organization whose mission is to utilize the voices of those affected by AiArthritis diseases to impact education, advocacy, and research. We do this through primarily through conversations that help us identify the most pressing issues that need immediate resolution. 
To participate in this survey you must be:

1. At least 18 years of age.
2. A person OR the parent/guardian of a juvenile person who is currently diagnosed with one or more of the following hard-to-treat autoimmune or autoinflammatory diseases that include arthritis as a major clinical component (AiArthritis).  We are focusing on these diseases at this time because they are most closely related in symptom and clinical feature onset, progression, and treatment protocol.
Qualifying AiArthritis diseases include:

  • Rheumatoid Arthritis (RA)
  • Adult Onset Still’s Disease (AOSD)
  • Juvenile Idiopathic Arthritis (JIA)
  • Systemic Juvenile Idiopathic Arthritis (sJIA)
  • HIDS (hyper-IgD syndrome, a mevalonate kinase deficiency)

3. Other co-morbidities, in addition to at least one of the Qualifying AiArthritis diseases, are also permitted.
4. Diagnosis was confirmed by a rheumatologist.  We understand you may not have initially been diagnosed by a rheumatologist (for example, you may have been diagnosed by an infectious disease doctor), but may have eventually been referred to see one. Since this study covers such a broad number of people and subcategories, and possible specialists that could be involved, in order to properly measure our response to treatment results, we are going to focus these comparisons on those who eventually saw a rheumatologist
5. Be able to read and write in English.
6. Global participation welcome.

Exclusions

  • Those who do not have a current diagnosis of at least one Qualifying AiArthritis diseases mentioned in the inclusion list.
  • Those who never had their diagnosis confirmed by a rheumatologist.
  • Those who are not at least 18 years of age.

To participate, click here.

ACR Responds to CY2020 Medicare Physician Fee Schedule Proposed Rule

The following is a press release from the ACR released yesterday:

In comments submitted to the Centers for Medicare and Medicaid Services (CMS), the American College of Rheumatology (ACR) applauded a provision in the CY2020 Physician Fee Schedule proposed rule that would increase Medicare reimbursement for evaluation and management (E/M) services to more appropriately reflect the time and expertise these face-to-face services require. The ACR also urged CMS to make additional changes that would facilitate the delivery of high-quality rheumatology care.

“We applaud CMS for taking steps to ensure rheumatologists and other cognitive specialists are adequately reimbursed for the time-intensive, high-value services they provide,” said Paula Marchetta, MD, MBA, president of the ACR. “These proposed changes will help ensure Medicare beneficiaries living with rheumatic disease can continue to receive the healthcare services they need and deserve.”

The proposed changes to E/M coding represent a welcome reversal from a previous CMS proposal that would have significantly cut reimbursement for specialists who provide care to patients with complex conditions. According to a 2018 report from the Medicare Payment and Advisory Commission (MedPAC), healthcare services billed under E/M codes – which include examinations, disease diagnosis, risk assessments, and care coordination – are grossly under-compensated by Medicare.

The new changes align with the American Medical Association’s recommendations that were developed in collaboration with the ACR and other organizations representing cognitive specialties.

The ACR also urged CMS to adopt a number of other changes in the final rule, including:

  • Clarify that proposed documentation reduction requirements take place in calendar year 2020. The proposed rule includes modifications to CMS’ documentation policy so that, for established patients, physicians and healthcare professionals are not required to document information in the provider’s note that is already present in a patient’s medical record. This change would greatly alleviate the paperwork burden on physicians and will enable them to focus more of their attention towards patients. The ACR is asking that CMS clarify that these changes take effect at the beginning of 2020 so that physicians can benefit from immediate relief.
  • Implement the Merit-based Incentive Payment System (MIPS) Value Pathway (MVP) program in a manner that is voluntary and based on measures that are meaningful to clinical care. The ACR expressed concerns about CMS’ intent to move forward with the new program without more robust vetting and stakeholder input. In particular, the ACR urged CMS to include, at a minimum, an opt-in policy for the potential MVP pilot program and reiterated its opposition to the agency’s proposal to layer population health of administrative claims-based measures into the MVP since they do not provide a granular enough level of information for physicians to make improvements in practice.
  • Reverse the removal of specific Qualified Clinical Data Registry Measures. The ACR believes that CMS’ plan to remove measures 178: Rheumatoid Arthritis: Function Status Assessment and 182: Functional Outcome Assessment would significantly undermine efforts to lay the necessary groundwork to establish additional rheumatology outcome measures. The ACR hopes to work with CMS on this issue before the rule is finalized.
  • Work with the Center for Medicare and Medicaid Innovation (CMMI) to adopt Alternative Payment Model (APM) options that would encourage more providers to participate in disease-specific Physician Focused APMs. The ACR notes that there are few APMs that are feasible for rheumatologists and that the current nominal risk criteria make it difficult for smaller practices to attempt the APM track.  The ACR is submitting its rheumatoid arthritis APM in the coming weeks and hopes that CMS and CMMI will consider expanding APM options for rheumatology professionals.

“The ACR remains dedicated to ensuring that rheumatologists and rheumatology interprofessional team members have the resources they need to work with CMS and provide patients with high-quality care,” Dr. Marchetta concluded. “In order to achieve those objectives, payment programs must be designed to reflect the way clinicians treat patients. We hope to continue serving as a resource to the agency as it moves forward with the rulemaking process.”

National Patient Survey Highlights Healthcare Challenges for the 1 in 4 Americans Living with Rheumatic Disease

The following is a press release from the ACR dated yesterday:

Americans living with rheumatic disease face significant healthcare challenges, according to a national patient survey released this week by the American College of Rheumatology and its Simple Tasks™ public awareness campaign.

More than 1,500 U.S. adults living with rheumatic disease responded to the survey, which asked a range of questions related to healthcare access, affordability and lifestyle. The results come as patients, providers and policymakers throughout the U.S. recognize Rheumatic Disease Awareness Month (RDAM).

Key survey findings include:

  • Even though 90 percent of respondents reported having health insurance coverage, nearly 60 percent said they had difficulty affording their medications or treatments in the past year.
  • Almost half of patients receiving treatment for a rheumatic disease reported that their insurance company subjected them to step therapy, a process that requires them to try – and fail – treatments preferred by the insurance company before a doctor-prescribed option can be approved, even when a patient’s doctor is uncertain the insurer-preferred option will be effective.
  • One-quarter of respondents reported out-of-pocket costs greater than $1,000 per year for treatment, while six percent of patients reported out-of-pockets costs greater than $5,000 per year.
  • Close to 60 percent of respondents are currently being treated by a rheumatologist or have been referred to seek treatment by a rheumatologist. However, two-thirds had to wait more than 30 days after referral before getting an initial appointment with a rheumatologist.
  • Almost two-thirds of patients reported that their rheumatic disease limited their ability to perform simple tasks such as eating, getting dressed, cooking, or running errands.

“These findings make clear that Americans living with rheumatic disease – regardless of age, gender, or income level – struggle to find affordable care,” said Paula Marchetta, MD, MBA, president of the ACR. “To address these challenges, it is crucial for patients, clinicians, and policymakers to work together to improve access to rheumatology care so that patients can live longer, healthier, and more fulfilling lives.”

Rheumatology patients recently joined the ACR on Capitol Hill to urge lawmakers to support legislation that would improve patient access by expanding the rheumatology workforce and placing reasonable limits on the use of step therapy.

Last year, the ACR examined access, affordability, and lifestyle challenges in the 2018 Rheumatic Disease Report Card, which graded each of the 50 states and the District of Columbia on the factors associated with an individual’s ability to live well with a rheumatic disease. The 2019 survey provides additional context to these challenges by asking patients directly how their disease impacts daily life.

According to the Centers for Disease Control and Prevention (CDC), an estimated one in four Americans – 54 million U.S. adults –  have been diagnosed with a rheumatic disease, an umbrella term that includes conditions such as rheumatoid arthritis, lupus, gout, osteoarthritis, Sjögren’s syndrome, juvenile idiopathic arthritis, and hundreds of lesser known diseases.

Hundreds of thousands of children also live with arthritis and other rheumatic diseases. The CDC estimates that as many as 300,000 children in the U.S. have some type of juvenile arthritis. Rheumatic diseases are the nation’s leading cause of disability and generate $140 billion in annual health costs. Although there is no cure for rheumatic disease, early intervention and diagnosis by a rheumatologist can help patients manage symptoms and lifestyle limitations to live healthier and more active lives.

The Rheumatic Disease Patient Survey was conducted by the American College of Rheumatology using the online polling tool SurveyMonkey Audience. The survey was conducted June 28-29, 2019, among a nationally representative sample of 1,517 adults ages 18 and older living in the United States.

To learn more about the survey and view an executive summary of the results, visit http://simpletasks.org/Survey.

370 Healthcare Groups Send Letter to Congress Urging Prior Authorization Reform in Medicare Advantage

The following is a press release from the ACR:

The American College of Rheumatology (ACR), along with 369 other leading patient, physician, and healthcare professional organizations, sent a letter to Congress urging passage of the Improving Seniors’ Timely Access to Care Act of 2019 (H.R. 3107), a bipartisan bill to protect Medicare Advantage beneficiaries from prior authorization requirements that needlessly delay or deny access to medically necessary care.

Introduced by Representatives Suzan DelBene (D-WA), Mike Kelly (R-PA), Roger Marshall, MD (R-KS), and Ami Bera, MD (D-CA), the Improving Seniors’ Timely Access to Care Act would make it easier for patients to access medically necessary treatments by requiring the Centers for Medicare & Medicaid Services (CMS) to regulate the use of prior authorization by Medicare Advantage plans. The bill would also increase transparency by mandating that health insurance plans report to CMS their prior authorization usage rate and the frequency with which they approve or deny coverage.

“While intended to control costs, the unregulated use of prior authorization has devolved into a time-consuming and obstructive process that often stalls or outright revokes patient access to medically necessary therapies,” said Paula Marchetta, MD, MBA, president of the ACR. “Many healthcare plans now use prior authorization indiscriminately, ensnaring the treatment delivery process in webs of red tape and creating gratuitous hurdles for patients and providers. Patients, physician groups, hospital associations and other key stakeholders all agree that reform is needed.”

According to a study conducted by the American Medical Association, over a quarter of doctors surveyed said prior authorization has led to a “serious adverse event” for patients, such as hospitalization and permanent bodily damage. The same study found that 91 percent of doctors say that prior authorization is associated with treatment delays.

As part of the Regulatory Relief Coalition – a group of national physician specialty organizations – the ACR has been a staunch advocate for reducing regulatory burdens in the Medicare program to assure patients have access to timely and medically necessary treatment.

The full letter is available here.

Rheumatology Leaders Concerned CVS/Aetna Merger Will Hinder Efforts to Lower Drug Costs

The following is a statement from Angus Worthing, MD, ACR Government Affairs Committee Chair:

“As policy makers and healthcare professionals continue to work together on ways to lower drug costs for patients, the ACR has worked to educate leaders in Congress about the lack of transparency from pharmacy benefits managers (PBMs) on the savings they are negotiating and whether those are being passed to patients. Though PBMs claim to use their position to negotiate lower drug prices, there has been no proof that rebates have been used to reduce the burden on patients and the healthcare system at large.

In recent years, several states have enacted legislation to hold PBMs accountable and crack down on secretive practices that drive up costs for consumers. State legislation has included gag clause bans, restrictions on claw-back provisions in PBM-insurer contracts, licensure of PBMs in states where they operate, and provisions that protect community pharmacies from unfair PBM auditing practices. These are positive developments, but without the full disclosure of rebates and discounts it is not possible to determine how the rebate system impacts drug prices and patient costs.

The ACR is concerned that the federal district court’s recent decision to approve the merger of CVS Health Corporation and Aetna hinders progress that has been made towards creating transparency and will make it easier for costs savings to remain secret. We hope that regulators will now actively watch the conduct of the merged company to ensure patients are protected.”

Tennis Champion Venus Williams Encourages Patients to get “Back on Top” in New PSA about Rheumatic Disease

The following is a press release from ACR from earlier this week:

World champion tennis player, Venus Williams, is teaming up with the American College of Rheumatology (ACR) to share important information about rheumatic diseases in a new public service announcement (PSA) set to air nationwide this fall.

Williams is the official spokesperson for September’s Rheumatic Disease Awareness Month (RDAM), an annual event sponsored by the ACR and its public awareness campaign, Simple Tasks™. In the PSA, Williams discusses her experience living with a rheumatic disease and journey to diagnosis. After six years of swollen joints, fatigue, and eye and mouth dryness, Williams was finally diagnosed with Sjögren’s syndrome in 2011. After working with a rheumatologist and making some lifestyle changes, she was able to manage her disease and continue playing professional tennis.

“As a professional athlete, I know what it feels like to want your body to perform at its best, but I also know what it’s like to be one of the 54 million Americans battling a rheumatic disease,” says Williams. “Today, I follow my rheumatologist’s treatment plan and am feeling healthy and energized.”

Throughout the month of September, Americans living with rheumatic disease are encouraged to visit www.RDAM.org  to learn more about how to better manage their disease and sign up to join the Simple Tasks community. Individuals who sign up during the month will be entered into a drawing to receive an item signed by Venus. Community members will receive bi-monthly updates from the ACR’s Simple Tasks team with health and wellness articles, policy updates, and special events/opportunities for patients from Simple Tasks’ Rheum4You blog. Interested individuals can sign up at http://simpletasks.org/join/.

RDAM was created by the ACR in 2016 to increase public understanding and awareness of the symptoms, risk factors, treatment options, economic impact, and lifestyle or healthcare challenges associated with rheumatic diseases. An estimated 54 million U.S. adults––or one in four Americans over the age of 18––have been diagnosed with a rheumatic disease, an umbrella term that includes diseases like rheumatoid arthritis, lupus, gout, osteoarthritis, Sjögren’s syndrome, juvenile idiopathic arthritis, and hundreds of lesser-known conditions.

Rheumatic diseases do not just affect the elderly.  Hundreds of thousands of children live with arthritis and other rheumatic diseases. The CDC estimates that as many as 300,000 children have some type of juvenile arthritis. Rheumatic diseases are the nation’s leading cause of disability and generate $140 billion in annual health costs. Although there is no cure for rheumatic disease, early intervention and diagnosis by a rheumatologist can help patients manage symptoms and lifestyle limitations to live more healthy and normal lives.

“The sooner a person is diagnosed and referred to the correct specialist to receive proper treatment for rheumatic disease, the better a patient’s chances are of managing their disease and enjoying a fuller, healthier life,” said Paula Marchetta, MD, MBA, president of the ACR. “During this September’s awareness month and beyond, I encourage all Americans living with rheumatic disease to join our community, learn about how to manage their disease, and participate in the ACR’s ongoing efforts to enact policies that promote safe, effective, affordable and accessible care and treatments. Everyone’s voice matters.”

Rheumatic Disease Awareness Month and the Rheum4You Newsletter are sponsored by Simple Tasks, a public awareness campaign from the American College of Rheumatology. To learn more about rheumatic diseases and Rheumatic Disease Awareness Month, visitRDAM.org.

Rheumatology Leaders Applaud Updates to Evaluation and Management Codes in CMS 2020 Physician Fee Schedule Proposed Rule

The following is a press release from earlier this week (7/30):

The American College of Rheumatology (ACR) today applauded the Centers for Medicare & Medicaid Services (CMS) for including proposed reimbursement changes to evaluation and management (E/M) codes in its CY 2020 Physician Fee Schedule Proposed Rule. If finalized, the proposal would increase Medicare reimbursement for time-intensive healthcare services provided by cognitive specialists such as rheumatologists. These services include examinations, disease diagnosis, risk assessments, and care coordination.

“The ACR applauds CMS for recommending long-needed updates to E/M codes in its CY 2020 Physician Fee Schedule proposed rule,” said Paula Marchetta, MD, MBA, president of the ACR. “Rheumatologists and other cognitive specialists should be adequately reimbursed for the time-intensive, high-value services they provide to Medicare beneficiaries. The proposed changes would more closely align reimbursement for E/M services with the time and expertise they require, and will help ensure millions of Medicare beneficiaries continue to receive these vital healthcare services. We hope to continue to work with CMS to ensure the expertise provided by rheumatologists and other cognitive specialists is appropriately reimbursed.”

Healthcare services billed under E/M codes – which include examinations, disease diagnosis, risk assessments, and care coordination – are grossly under-compensated by Medicare, according to a 2018 report from the Medicare Payment and Advisory Commission (MedPAC).

The CMS proposal aligns with recommendations set forth by the American Medical Association in collaboration with a diverse group of professional societies representing cognitive specialties, including the ACR. The ACR also engaged with the administration through meetings, phone calls, and public comments to provide the perspective of rheumatologists.

“We thank CMS for giving rheumatology leaders ample opportunities to interact with the agency on this issue and look forward to providing further feedback in written comments,” said Dr. Marchetta.

A Life Update

In the last few weeks, everything in my life got put on hold. I owe everyone an explanation.

 

Getting a divorce

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.

 

Gus died

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.

 

What happens now?

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