Category Archives: Policy Priorities

Taking Steps toward Patient Centered Reforms | Safe Step Act Introduced Today!

My name is Katie Roberts and I’ve lived with a severe and debilitating form of psoriatic arthritis for nearly 40 years, and psoriasis, a painful skin condition, for nearly 30 years. I’m an Advocate for Arthritis and the Chair of the Maryland Advocacy committee because I’m passionate about sharing my story to break down barriers to care, especially step therapy.

Katie Roberts

At an appointment with a rheumatologist at age 17, I was told I would likely not live long enough to see my 21st birthday – my body was slowly shutting down from years with an autoimmune disease. It was more than the arthritis and psoriasis. The autoimmune disease had started to affect my digestive system, bladder, liver, kidneys, heart, and lungs.

My doctors prescribed a treatment regimen that was the best of what was available at the time. This allowed me to live past my prognosis, but it did not put me in control of my disease. My medical team had prescribed countless drugs, and I even participated in 3 experimental drugs protocols at NIH.

Later that year, in 2002, a biologic drug, was made available through a study at NIH. Within 3 weeks, I was out of a wheelchair, and within 6 weeks was walking unassisted. My psoriasis went from 80% body coverage to less than 5% body coverage within 8 weeks.

It was my miracle drug. It literally saved my life. I was able to join the workforce again and go on to have a very successful professional career. Little did I know then that all the progress that I made would be thwarted years later by step therapy.

Roberts Family

I had been stable on my biologic treatment for years, with coverage for my biologic through my employers’ private insurance. In the middle of a plan year, my insurer sent me a letter informing me my biologic injections would no longer be covered under my plan until I went through “step therapy protocols”. They told me that I would have to try and fail a less-costly alternative treatment before they would to cover my biologic.

My insurer’s decision to force me through burdensome step therapy protocols not only interrupted my life, but it brought my life to a standstill. This step therapy decision was overly burdensome in three major ways:

  1. The process was not transparent — there were no stipulations on how long I would have to try and fail to be on any particular step medication.
  2. My doctors did not have any power to appeal or override the decision – my doctors tried to fight and help appeal the insurance decision to no avail.
  3. My health plan did not take my medical history or my doctor’s medical opinion into account – it didn’t matter than my biologic was helping to control both my arthritis and my comorbidities like psoriasis and Chron’s disease, my insurer still wanted to try the lower cost alternative.

Within 4 weeks of going off treatment, I was back in a wheelchair – that’s just four weeks to go from a fully functioning active adult to wheelchair. That’s how fast this disease can progress if not stabilized. Unfortunately, I was forced to continue this step therapy journey for ten months – leading to 14 surgeries, countless doctors visits, missed time from work, and ultimately health care costs that far exceeded the price of my biologic treatment.

Earlier today, Congress introduced federal legislation called the Safe Step Act (HR 2279) that will reform step therapy protocols nationwide. The three reforms proposed in the legislation will make step therapy a more transparent process, that gives doctors the power to override step therapy decisions when medically appropriate, and that takes into account personal medical history. Had this bill been law in 2008, I would have had the power to avoid the burdensome step therapy protocols I encountered.

I need your help in teaching Congress about the importance of step therapy reform, and calling on our legislators to sponsor this important piece of legislation. Take five minutes to send your Member of Congress your support.

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VA Gov. Northam Signs Step Therapy Reform Bill Into Law

VA Gov. Northam Signs Step Therapy Reform Bill Into Law

On Tuesday, March 12, Virginia joined the ranks of 22 states that have passed legislation to curb step therapy. House Bill 2126, which was signed into law by Virginia Gov. Ralph Northam, reforms step therapy, or “fail first,” insurance protocols that force patients to try and fail an insurer-preferred medication before the medication their doctor originally prescribed. This legislation places important guardrails to protect patients from the inappropriate use of burdensome step therapy protocols.

Patients and providers have been working hand in hand on reforming step therapy protocols in Virginia since 2016. Countless touchpoints with legislators have gotten us across the finish line, including letters sent to legislators, op-eds published in local newspapers, coalition-based initiatives through Fair Health Care VA and even state legislative days with in-person legislator meetings in Richmond.

Dr. Harry Gewanter, Arthritis Foundation Ambassador and chair of the Virginia advocacy committee, played an instrumental role in the success of this bill. Of the step therapy win, Dr. Gewanter says: “This legislation will help patients receive appropriate therapies when their unique circumstances need personalized treatment and ensure that the patient-physician relationship remains at the center of care decisions.”

The Arthritis Foundation thanks all legislators who have supported the bill, specifically Delegate Davis, who has championed this bill for four years. You can share your gratitude with the legislature as well!

If you have a step therapy story, we want to hear from you. 

You can learn more about advocacy and amplifying your voice by becoming an Arthritis Foundation Advocate! Sign up today!



Step Therapy Reform Moves Ahead in Georgia

On Wednesday, January 23, a group of Georgia Advocates gathered at the state capitol building to talk to legislators about step therapy reform. The event was attended by Advocates from across the state,including a mother and daughter who drove from three hours away to talk about the challenges they’ve faced getting access to their medications. The day included a visit from the bill sponsor, Rep. Sharon Cooper (R-43), a brief overview of current step therapy practices and role playing, as well as meetings with some of Georgia’s legislators.

Our Advocates talked to legislators about step therapy, which is an insurance practice that requires patients to use a lower-cost drug before permitting more expensive treatments, despite a physician’s recommendation. Rep. Cooper shared with our Advocates that her bill will create guardrails, allowing a physician to override a step therapy request if the requested medication will negatively react with a medication the patient is already taking, or if the patient has previously tried and failed that drug.

The bill has just been introduced and will go through the Georgia House and Senate chambers for review and votes. Please take a moment to take action by reaching out to your legislators and asking them to support step therapy reform in Georgia.






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Take Care Series

TAKE CARE: Advocacy Blog Series Bringing It All Together

We’ve reached the end of our advocacy blog series, and now it really is time to say “take care”!

Throughout this series, we’ve shined a spotlight on some of the hot button issues in health policy that can have an impact on your health care. The blog series was meant to help you take care when it comes to important arthritis care and coverage issues. With open enrollment for Medicare and the health care exchanges closing soon, we wanted to close out the year’s blog series reminding you of those important deadlines for health care. You can check out the year’s Take Care blog posts here. Continue reading TAKE CARE: Advocacy Blog Series Bringing It All Together

Medicare Advantage

TAKE CARE: Advocacy Blog Series Medicare Advantage Plan Change Coming in 2019

Considering a Medicare Advantage plan for 2019?

An important change is coming that you should know about!

The administration recently released guidance that allows Medicare Advantage (MA) plans to use step therapy. This is new for next year and a few health insurers have already said they will institute the policy. In this week’s Take Care blog, we break down the issue to help you make the best choice during open enrollment season. Remember: Medicare open enrollment has already started and continues through December 7. Read on to get the scoop on this change to Medicare Advantage plans.

Continue reading TAKE CARE: Advocacy Blog Series Medicare Advantage Plan Change Coming in 2019

pharmacist gag clauses legislation

Congress Said Yes! to Transparency at the Pharmacy Counter

In a strong show of bipartisanship, the U.S. House of Representatives and U.S. Senate overwhelmingly passed two pieces of legislation at the end of September that would make it easier for pharmacists to tell patients about their payment options at the pharmacy counter.

Beginning last spring, the Arthritis Foundation led the charge by building support in Congress and among other patient and provider organizations about the importance of this legislation. The bills moved quickly through the legislative process thanks to the strength of Arthritis Foundation Advocates and Ambassadors, who called on their members of Congress to vote in favor of the legislation by sharing their stories.

Continue reading Congress Said Yes! to Transparency at the Pharmacy Counter

open enrollment take care

TAKE CARE: Advocacy Blog Series – Rock and Enroll With Us This Open Enrollment Season

It’s that time of year again! Leaves are changing, seasons are shifting and it’s officially time to kick off all things open enrollment. Learn the ins and outs of open enrollment so you have the tools to find the plan that works best for you.

Start here with our 10 Tips for Managing Your Care Costs video – it’s  quick and easy, and in less than five minutes you’ll be 10 tips closer to mastering your health coverage.

Continue reading TAKE CARE: Advocacy Blog Series – Rock and Enroll With Us This Open Enrollment Season

association health plans

TAKE CARE: Advocacy Blog Series – Association Health Plans

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’re just now tuning into this series, check out our previous advocacy blog posts here. In August, we kicked off a focus on health insurance benefits as we approach open enrollment this fall. This week, we take a closer look at association health plans.

Continue reading TAKE CARE: Advocacy Blog Series – Association Health Plans

minnesota step therapy advocacy

MN Governor Dayton Signs Legislation for Step Therapy Guardrails

On May 19, Minnesota Gov. Mark Dayton signed HB 3196 into law! Step therapy legislation gives physicians a clear path toward getting their patients the medications they need.

Having access to affordable, effective and specialized medication is critical for the 54 million Americans living with doctor-diagnosed arthritis nationwide, including over 900,000 in Minnesota. The Arthritis Foundation thanks the bill’s sponsors and Gov. Dayton for helping provide these patient protections to Minnesotans.

Step Therapy is a practice used by insurers that requires people with arthritis to try lower-cost medications before allowing more expensive treatments, despite a physician’s recommendation.

Continue reading MN Governor Dayton Signs Legislation for Step Therapy Guardrails