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Jul. 19, 2022

TOPIC: Featured News, Advocacy, Get Involved

Take Action on July 19: Help End Harmful Step Therapy Policies By Urging Congress to Support the Safe Step Act

Posted by Valaree DonFrancesco

On Tuesday, July 19, join rare disease advocates and coalition partners across the nation for a social media day of action to urge Congress to pass the Safe Step Act (HR 2163/S 464). This bill would help people with rare diseases access prescribed medications in a safe and timely manner, by ensuring step therapy is appropriately utilized. Too often, step therapy results in significant frustration, unnecessary delays, and negative outcomes for patients in obtaining a prescribed medication.

Step therapy is a process that requires patients to take one or more medications chosen by their insurer before they can access the optimal medicine prescribed by their provider. While this policy was created by insurers as an attempt to contain costs, step therapy has been increasingly applied with little regard for a patient’s medical situation or treatment history. When used inappropriately, it can have a negative impact on patients, delay necessary treatments, lead to adverse reactions, and ultimately increase health care costs, not lower them.

Take action: email your legislators and urge them to pass the Safe Step Act now!

For instance, some people living with rare diseases have comorbidities that make them clearly ineligible for certain treatment options, yet they are required to file an appeal and there is not set timeline for which an insurer must respond to the appeal. As another example, an individual may change insurance plans and be required to go off a successful treatment and take a less effective medicine, even if they had gone through drawn-out step therapy protocols with their prior insurer.

Tammy Jones, an advocate and the volunteer ambassador for the NORD Rare Action Network in Arkansas shared, “Step therapy has been a big challenge for my family. Three of my family members were taken off medications that were working very well and were required to try other, less expensive medications. Why change what is working and unsettle patients’ quality of life? Step therapy should not be used for patients who are already stable on a medication that is effective for them.”

The Safe Step Act, a bipartisan bill that has been introduced in both the US House of Representatives and Senate, would create commonsense patient protections around the use of step therapy within federally-regulated health insurance plans by:

  • Establishing exemption requirements to step therapy protocols, including if the treatment will cause harm; the patient has already tried and discontinued the treatment due to lack of efficacy; the treatment will prevent the patient from fulfilling responsibilities at work or daily life; or the patient is stable on current treatment that was covered by previous insurers;
  • Requiring private insurers to implement a clear and transparent process for patients or physicians to follow when requesting an exception to a step therapy protocols; and
  • Setting deadlines to mandate insurers respond within 24 hours for urgent step therapy exemption requests and 72 hours for non-urgent exemption requests.

Ways to Get Involved:

Join the social media day of action on Tuesday, July 19 to take a stand against step therapy. There are many ways to get involved:

  • Contact your legislators: click here to send an email telling your US representatives to pass the Safe Step Act.
  • Spread the word on social media: use and follow the hashtags #SSADayOfAction and #SafeStepAct.
  • Share your story: help bring awareness to this issue with the hashtags #SSADayOfAction and #SafeStepAct.
  • Learn: more than 30 states have passed step therapy reform protections for state-regulated health insurance plans. Read the NORD State Report Card to understand how step therapy affects people living in your state.
  • Stay informed: sign up and join the Rare Action Network to hear about policy updates and action alerts.

To learn about other recent NORD policy efforts, visit