Category Archives: Featured

ambassador spotlight maya miserlain

Junior Ambassador Spotlight – Maya Miserlian

By Maya Miserlian

My name is Maya Miserlian, I’m 15 years old, and I am one of 300,000 children in the US with juvenile arthritis (JA).

At the age of 11 I was diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO), a rare bone disease that is one of the many diseases included in the definition of arthritis umbrella.  My diagnosis came after over a year of being told my aching bones were just ‘growing pains’. CRMO affects one in every million people, which has left me feeling alone in the past, because I did not know anyone else with my diagnosis. In the past year I was introduced to the Arthritis Foundation, which has played a big role in my journey with CRMO. I advocate for arthritis as a Junior Ambassador for the Foundation, which has allowed me to take control of my disease and advocate for myself and others with JA. I consider myself lucky – because I live near my specialist and was able to get on medication that works, I reached remission only three years after my diagnosis. However, easy access to a specialist is not a reality for most people.

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affordable care act update

TAKE CARE: Advocacy Blog Series

Update on the Affordable Care Act

We are continuing our advocacy blog series meant to help you take care when it comes to important arthritis health care and coverage issues. If you are just now tuning into this series, check out our previous blog posts on accumulator adjustment programs, pharmacist gag orders, President Trump’s drug pricing blueprint, drug rebates, and premium increases.

This week, we break down a recent legal challenge to the Affordable Care Act (ACA). A court case was recently thrown into the spotlight as a result of the administration’s decision to file a brief essentially arguing that federal courts should find the ACA’s protection for people with pre-existing conditions unconstitutional. Read on to learn more.

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biosimilars substitution victory

Biosimilar Substitution Victories Across the Country!

The Arthritis Foundation thanks the governors in eight states for signing biosimilar legislation in 2018 that enhances patient access to new and innovative medications, while ensuring that pharmacists are communicating critical, up-to-date medical information about patients to physicians. New laws in Connecticut, Michigan, New Hampshire, South Dakota, Vermont, Wyoming, West Virginia and Wisconsin will positively impact approximately 5.3 million people with doctor-diagnosed arthritis.

“This legislation will grant access to life-changing medications while ensuring proper safeguards for both patient and physician when a prescription is substituted,” said Connecticut Advocacy Chair Paula Haney.

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president trump drug pricing blueprint

TAKE CARE: Advocacy Blog Series

President Trump’s Drug Pricing Blueprint

We’re excited to continue our advocacy blog series meant to help you take care when it comes to important arthritis health care and coverage issues. If you are just now tuning into this series, check out our previous blog posts on accumulator adjustment programs and pharmacist gag orders.

This week, read on to learn more about President Trump’s drug pricing blueprint and the different policy areas that the plan addresses.

Why did the Administration decide to release a drug pricing blueprint?

On Friday, May 11 the Administration released its long-awaited plan, “Putting Patients First,” intended to help lower drug prices and reduce out-of-pocket costs for patients. President Trump has spoken at length about the need to tackle prescription drug prices, and the blueprint released last week was an effort to follow through on that promise.

In response to the blueprint, the Arthritis Foundation released a brief statement on social media, expressing cautious optimism, but urging thoughtful development of proposals going forward.

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arthritis foundation advocacy clawbacks

TAKE CARE: Advocacy Blog Series

Pharmacy Benefit Manager Gag Orders and Clawbacks

We’re excited to present our second blog in a series meant to help you take care when it comes to important arthritis health care and coverage issues. This week we’ll tell you about a practice some pharmacy benefit managers have been using called clawbacks, which affect the price of medications you pay at the pharmacy counter. Read on to learn more and see how the Arthritis Foundation is addressing the issue.

What are clawbacks?

A person who fills his or her prescription at the pharmacy may pay more for a prescription drug with insurance than if he or she had filled it without insurance. This can occur due to a “clawback,” a term used to describe the difference between the cash cost of a drug (purchasing a drug without insurance) and the copayment required by your health plan. That difference, the clawback, is often passed by the pharmacy back to the pharmacy benefit manager (PBM) as a profit. Unfortunately, this often occurs without the patient ever knowing they could avoid the higher copay by paying without insurance. A provision in the contract between the pharmacist and the PBM, known as a “gag order,” prohibits the pharmacist from disclosing cost information related to payment options.

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accumulator adjustment programs

TAKE CARE: Advocacy Blog Series

Accumulator Adjustment Programs

We’re excited to present a new advocacy blog series meant to help you take care when it comes to important arthritis health care and coverage issues. Over the next two months, we’ll post a blog every other week to help patients like you know what access issues we are watching and what you can do about them. This week we’ll tell you about a new policy many pharmacy benefit managers (PBMs) are using called accumulator adjustment programs, which could especially impact people in high deductible health plans. Read on to learn more about these programs and why they are being implemented. Continue reading TAKE CARE: Advocacy Blog Series

arthritis foundation platinum ambassador assembly

2018 Arthritis Platinum Ambassador Assembly Makes a Big Impact

Scores of the most passionate and vocal champions of the arthritis community recently descended on the nation’s capital to hone their advocacy skills and share their personal stories with each other and with their members of Congress. Attended by nearly 130 participants from 32 states, the Arthritis Foundation’s new Platinum Ambassadors Assembly was held March 12-13.

Platinum Ambassadors are top grassroots volunteers who complete six annual advocacy assignments and raise at least $1,000 to support the Foundation’s mission to conquer and cure arthritis. Forty-eight of our fifty-one Platinum Ambassadors participated in the first-of-its-kind event, along with 25 Junior Ambassadors, young people ages 13 to 17 who speak out for the estimated 300,000 kids in the U.S. who battle arthritis. Also attending were 30 future advocacy leaders, highly-engaged Arthritis Foundation volunteers who have committed to achieving Platinum Ambassador status in 2018.

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platinum ambassador assembly social media campaign

Show Us How YOU #AdvocateforArthritis

Platinum Ambassador Assembly Social Campaign

Did you know that the first ever Platinum Ambassador Assembly is taking place in Washington, DC this March 12-13? There, our most highly engaged grassroots Ambassadors will gather together to be the voice for arthritis on Capitol Hill.

We’re calling on you to help amplify the voice of our Platinum Ambassador Assembly by participating virtually in our #AdvocateforArthritis social media campaign on Tuesday, March 13. On that day Platinum Ambassador Assembly participants will be on Capitol Hill to meet their elected officials and their staff in person to discuss legislative priorities like reforming burdensome step therapy practices, addressing the pediatric rheumatologist shortage, and even securing funding for research for a cure!

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amy barron platinum arthritis ambassador

Platinum Ambassador Spotlight: Amy Barron, OHIO

ADVOCACY COMMITTEE REACHES GOAL!

 By Amy Barron, Platinum Ambassador, OH Advocacy Committee

I am privileged to serve as a member of the Arthritis Foundation’s Ohio State Advocacy Committee. Advocacy committees like mine help to chart the course of local and state-wide advocacy action for our arthritis community. Many of our committee members serve as Arthritis Foundation Advocates and Ambassadors, at both the state and federal level.

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21st Century Cures Act

Answering Your Questions About the New Tax Reform Legislation

On Wednesday, December 20, Congress passed the Tax Cuts and Jobs Act (TCJA). There were several health-related changes included in the legislation, such as a repeal of the Affordable Care Act’s individual mandate, and changes to the medical expenditure tax deduction. Below we explain the key health provisions that made it into the final law, how it may impact you, and what’s next.

Let’s start with the individual mandate.
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